This is my daughter Meaghan, doing what she loves most. At the time this picture was taken she was twelve years old. She is now

seventeen.

PREFACE

Raising and teaching a child with autism is an exhausting business, but it can also be exhilarating. In some ways it is analogous to climbing a mountain. There is a lot of hard work, struggle, frustration and fatigue as you make your way up the steep, slippery slope. Sometimes the ascent is smooth, but most of the time the terrain is rough and the pitfalls are many.

When you reach plateaus along the way -- where progress levels off despite your most determined effort -- you sometimes feel you want to throw in the towel. But you keep going because you know that you can’t turn back without sacrificing all the ground you’ve already covered. And you think that, if only you can get a little higher, the view will be that much better. So you keep trudging up the trail, one small step at a time, and at some point along the way you discover that the higher you go, the easier it becomes.

It becomes easier because you learn to accept what you cannot change. It becomes easier because the sensory sensitivities that made your child’s early years such hell generally diminish with time and become less of an impediment to their learning. It becomes easier because you come to terms with what is possible and what isn’t... and learn to focus on the positive.

Every year the prognosis for children with autism improves as knowledge about the syndrome increases. I don’t yet know what the summit will hold for my daughter, because I refuse to place any limitations on her potential.

Where she goes from this point on depends in large part upon the educational, medical, social and vocational services I am able to attain for her. How high she climbs also depends on whether the dual obstacles of society’s (and our government's) indifference and the medical establishment's lack of serious research into autism can be overcome in time to make a difference for her.

Even if a cure for autism is never found, education and treatment

should be more accessible and affordable, so that those of us who love and care for individuals with autism are not left to make our way alone. Above all, the basic facts about this disorder must be disseminated, the myths and stereotypes dispelled. My hope is that a day will come, in the not too distant future, when children and adults with autism will be better understood and welcomed into the mainstream.

If this book helps in any way to broaden the understanding and acceptance of this fascinating, devastating yet far from hopeless affliction, than I will know that there is indeed a reason that I was entrusted with the burden and responsibility of raising such an extraordinary child.

Gail Buckley

December, 2003

I dedicate this book to my beautiful, out of the ordinary daughter Meaghan, to my witty, bright, extraordinary son, Michael, and to my wonderful, devoted husband Brian, who makes me laugh when I need it most, and without whose love and support I would not have had the opportunity to write this book in the first place.

Now, let's get started...

Click here for the Table of Contents

Important Legal Notice / Disclaimer

Copyright © 2002 Gail Buckley/WebSuccessMaker.com - All Rights Reserved

The content of this book (and accompanying website) are copyrighted. No part of this e-book may be reproduced or

transmitted in any form whatsoever, be it of electronic or tangible nature, without written permission from the author.

While every attempt has been make to ensure that the information presented here is correct, the contents herein are a reflection of

the views of the author and are meant for educational and informational purposes only.

The author thereby assumes no culpability for any loss, personal or otherwise, caused by the use of the information presented.

Copyright violators will be prosecuted to the fullest extent of the law.

About the Author

As the parent of an autistic child, Gail Buckley is uniquely qualified to write this book because she has been immersed in the world of autism for seventeen years. She has been an active participant in every aspect of her daughter’s development and education. Through her daughter, she has had experience with three of the most renowned schools in the northeast for children with autism, so she is able to compare and contrast the strengths and weaknesses of their various methodologies.

Over the years, Ms. Buckley has closely observed dozens of children with autism. She has picked the brain of many a teacher, doctor and therapist and has conversed at length with the best sources of all, other parents. In addition to her personal experience, she has read extensively on autism and on related subjects and has kept abreast of the latest research on the autistic front via periodicals and the internet. In short, Ms. Buckley has amassed a surfeit of knowledge and information from which she has drawn in writing her book, Funny Wiring: Living With and Piecing Together the Puzzle of Autism.

Gail Buckley graduated with a BS from Cornell University. She currently lives in Lynnfield with her husband, Brian, and two children, Meaghan and Michael.

Table of Contents

Whether you are viewing this book as e-book or a private website, finding your way around is pretty simple and straightforward. Just click on the links below and you will be transported to the various pages and chapters. (Yes, for those of you new to this, complete chapters are included on a single web page!) When you're finished with a chapter or page, simply click on the links at the bottom of that page to either return to this main Table of Contents or to go on to the next Chapter.

The nice thing about e-books and websites is that you can hop around all you like and you never lose your place. You can always just return to home plate here at the Table of Contents. As you can see, the contents are divided up into Chapters and What's Going On Sections. I have interspersed three of the What's Going On sections with the Chapters because I felt they were relevant and fit in with the story segments. Also, these particular ones are not too heavy on the bio-chemical mumbo-jumbo.

However, the neuro-biochemical mumbo-jumbo is vitally important, so please don't ignore those last sections! It took me

months and months of research to figure out and piece together just what might be happening in the autistic brain. And it took me more months to make that knowledge comprehensible to the average layman or woman. So, while Meaghan's story is very important and very helpful in learning how to work with an autistic child, if you really want to understand what makes an autistic person 'tick', you really can't afford not to delve a bit deeper into what's really going on inside their heads and bodies.

Also, don't forget that even though this is a web-based document, you always have the option of printing out any or all of the pages in both the website and e-book for easier reading off-line. Nuff said. Time for you to go pour yourself a cup of your favorite beverage, put your feet up and... get clickin'. ENJOY!

Foreword

Meaghan's Story

Chapter One: “And the Bad News Is”

Chapter Two: One Test After Another

Chapter Three: “You Can’t Make Me”

Chapter Four: Did She Say “That”?

Chapter Five: From Bad to Worse

Chapter Six: With a Grain of Salt

Chapter Seven: Knowing Right from Wrong

What’s Going On? Early Learning and Education

Chapter Eight: Coming on Cue

Chapter Nine: Learning My ABCs

Chapter Ten: Step by Step

Chapter Eleven: Beginnings and Endings

Chapter Twelve: Too Good to Last

Chapter Thirteen: Doubts Creep In

Chapter Fourteen: Coming to Terms

Chapter Fifteen: What’s in a Name?

What’s Going On? Atypical Development and Thought Process

Chapter Sixteen: She Has a Way About Her

Chapter Seventeen: The Theory Behind the Practice

Chapter Eighteen: Do as I Do, Not as I Say

Chapter Nineteen: It’s in the Hair

Chapter Twenty: Promise vs. Practice

Chapter Twenty One: Merry Mayhem

Chapter Twenty Two: A Parting of Ways

Chapter Twenty Three: About Behavior

What’s Going On? Social Behavior, Empathy and Emotion

Chapter Twenty Four: A New Beginning

Chapter Twenty Five: Against the Odds

Chapter Twenty Six: Physical Feats

Chapter Twenty Seven: All Work and No Play

Chapter Twenty Eight: “Now it is Now”

Chapter Twenty Nine: The Rote and the Repetitious

Chapter Thirty: See and Say

What’s Going On? Communication and Conversation

Chapter Thirty One: The Big Three

Chapter Thirty Two: Flight and Fright

Chapter Thirty Three: Community Conundrum

Chapter Thirty Four: A Friend in Deed

Chapter Thirty Five: What Might Help

Chapter Thirty Six: “And the Good News Is”

Bio-chemical What's Going On Sections

Sensory Processing, Behavior & Memory

Body Senses and Motor Responses

Distal Senses and Lateralization

Brain - Body Biochemical Link

GastroIntestinal - Secretin Link

Neuropeptides and Supplements

Piecing the Autism Puzzle Together

Appendix

Current Theories About What Might Cause Autism and Various Treatment Options

Footnotes

Works Cited

Copywright Info - About the Author

I welcome all feedback - positive or negative. (I welcome the positive more:-) I would greatly appreciate hearing what you think about Funny Wiring. If you have any thoughts, comments, testimonials, criticisms or suggestions, feel free to email me at: remarks@funnywiring.com .

Click on the links below - or above - to get where you want to go:)

<== Title Page Foreword Chapter One ==>

FOREWORD

When I first learned my daughter had serious developmental problems I was, of course, devastated. I was also in denial. How could a child who looked so adorably normal have so many problems? When extensive testing revealed that there was absolutely nothing physically wrong with her eyes, ears, limbs, genes, metabolism or brain structure, I was further dismayed. What was this insidious, invisible syndrome that was making my otherwise healthy daughter so different from other children?

The experts supplied a name-Pervasive Developmental Disorder - a euphemism for autism, and I was supplied a definition of the syndrome’s core symptoms: qualitative impairment in social interaction, communication, imagination and range of interests and activities. But the experts could not tell me how my daughter had come by these crippling deficits. Nor could they offer me any real hope of treatment. Instead, I was left to wend my way thorough a mind-boggling maze of interventions, medicines and educational methodologies. Some worked-others didn’t. I learned.

I read every book and publication about every aspect of the syndrome I was able to lay my hands on. In doing so I learned a great deal about how to help Meaghan along but garnered little understanding of exactly why she was the way she was. All the books, reports and articles agreed on the biological-neurological pathology of autism, but none was able to pinpoint the exact point at which the information processing of autistic individuals

goes askew. So I did some additional reading on the brain and nervous system and on sensory integration and, bit by bit, the pieces started falling into place.

I certainly don’t claim to be an expert on how the mind and body work but, by piecing together some neurological and biological fundamentals with what I know about autism I have been able to make sense out of most of my own daughter’s autistic limitations and propensities. I have come to understand how she perceives the world around her, how she interprets what she perceives and how her unique perspective influences every aspect of her being.

In the "What's Going On" sections of this book, I have done my best to explain the “whys” of autism. I have tried to keep the terminology as basic and straightforward as possible. The ideas and insights I propose are intended to be understood by laymen, by those who have a personal or professional interest in the development of a child with autism (although they might afford a good jumping off point for more in depth research by those in the medical or psychiatric community.) For the sake of simplicity and clarity, I make no distinctions between mild, moderate or severe spectrum diagnoses. References to ‘children with autism’ may be taken to include individuals with PDD and aspergers as well.

I suppose I could have just written a book based on these "What's Going On" sections, but I have elected to tell Meaghan's story because I believe the living and learning ramifications of this disorder can only be told from a personal perspective.

My daughter’s is not an unqualified success story. She has not recovered from this crippling syndrome, nor has she made such exceptional progress that she defies the odds. But she has come a mighty long way. We both have. We still have a way to go, but I have chosen to write our story now because I know that a lot of what I have learned can be of real help to others. I have not stinted on specifics, particularly in regard to teaching techniques, because I know from my own experience how important this knowledge is in living with and effectively working with a child with autism.

I know that my daughter will probably never cease being autistic, but her autism need not disqualify her from leading a full life. It is merely part of her uniqueness as an individual. Over the years, I have reached an accommodation with that uniqueness, and it is my hope that others who read this book will do so as well.

Along these lines, I am by no means reconciled to the view that autism is incurable. In fact, in autism, processing systems up to the level of the brain

stem are intact and fully functional, so it is basically a brain anomaly that we have to contend with. Granted, it is a whopper of an anomaly, but scientists are learning more about the brain daily as technology makes possible ever more intricate imaging and diagnostic techniques. I believe that medical research could very well solve the mystery of autism, they probably already have the tools to do so. They just need to apply those tools conscientiously and systematically toward finding a cause. And that once a cause or causes are found, a cure, or at least a palliative, is not out of the realm of possibility.

The problem is that, as the affliction is not degenerative or fatal, society feels little compulsion to contribute to remedying it. Millions of dollars are spent annually to fund research for other types of syndromes, injuries or diseases, but children with autism are left to struggle, to suffer daily with sensory distortion and mind-rending anxiety, compulsivity and insecurity, to live lives that will never reach maturity or fulfillment, because there is little sense of urgency where autism is concerned. True, these children are not dying of their disorder, but neither are they truly living.

Fortunately, some private organizations, like the Autism Society of America, have taken up the slack and are making great strides with important projects like DAN (Defeat Autism Now) but I can’t help but feel that individuals with autism have been treated by our government and health organizations as second-class citizens for far too long. Hopefully, now that the media is starting to take note of the rising incidences of autism in this country, more dollars will be spent on research and more treatment options will soon be made available.

When you read this book you will realize that a great many of the clues to solving his puzzle are already here. They are just so widely scattered that unless or until an open-minded and ego or agenda-free inter-disciplinary team of medical, microbiological and psychological as well as educational professionals can be rounded up to piece them together, it may be many, many more years indeed before the puzzle even comes close to completion.

Return to Table of Contents

Chapter One

“And the Bad News Is”

Meaghan stood by the hospital window with her back to me, captivated not by the view but by the play of light and shadow reflecting off the blinds. At her feet was a plastic crate piled high with all manner of enticing toys. If she had seen it as we entered the waiting room, she had given no indication. Instead, she had gone straight over to the window.

As I sat and watched my young daughter, I wondered, not for the first time, what she could be thinking.

My musings were interrupted by the approach of an attractive young woman. “So this is Meaghan,” she said as she drew near us. “And you must be Meaghan’s mom.” She extended her hand. “I’m Joan Axelrod. I’ll be your daughter’s case manager.”

Meaghan turned and, cocking her head, observed us with slightly glazed eyes as we shook hands. She had awakened with a terrible head cold, but I dared not let her miss these crucial evaluations.

“What a pretty little girl you are, Meaghan,” Joan observed with a smile. “Would you like to come with me? I have lots of nice toys in my office.”

After a slight hesitation Meaghan walked over and took hold of her outstretched hand, toddling off without a backward glance to a session that would forever change the course of our lives.

My feelings as I followed along were hardly as blase. I knew why we were here. We were here because my daughter, who would turn two in a week’s time, had yet to utter a single recognizable word. There were a few other developmental and behavioral concerns I had, but primarily I was troubled by Meaghan’s lack of speech. I was counting on this round of evaluations to pinpoint a specific and hopefully remedial cause for her continuing silence.

I honestly didn’t believe that my daughter’s problem, whatever it was, would turn out to be anything too serious. Her developmental history to date had been relatively unremarkable. Her birth was an excruciating, eighteen-hour ordeal that left me marveling that any woman would put herself through it more than once, but Meaghan had emerged none the worse for the wear and tear. She’d cried out lustily after her forceps delivery and had weighed in at a hefty eight pounds eleven ounces. She was slightly jaundiced, accounting for a one point deduction on her apgar, but she had the requisite ten fingers and toes and no observable abnormalities in appearance, so she was, to my mind, as perfect as she could be.

She continued to be a nearly perfect infant. She reached all her developmental milestones -- sucking, smiling, babbling, rolling over, sitting up, crawling, standing and creeping -- within the normal baby time frame. Her walking was a bit delayed. She didn’t take her first unassisted steps until sixteen months, but I hadn’t pushed her to do so. Also, she’d had a bit of difficulty chewing and swallowing solid foods when I introduced them to her, but she’d since overcome the difficulty. She had been, overall, a pretty happy and, save for a critically high fever she spiked at seven months, healthy baby.

This is not to say that she never fussed. She could fuss and tantrum with the best of them. But she could be readily comforted by being held and walked around, or by a rocking or bouncing motion. She had never shunned physical contact. If someone wanted to play with her, she was happy to be picked up and played with. But she didn't seek out attention. She was content to sit in her playpen or walker and stare into her teething mirror or endlessly twirl her toy rattle.

At night she would fall asleep by getting up on all fours and rocking herself into slumber. As she grew bigger, she rocked so vigorously that she frequently managed to propel her crib from one side of her room to the other. Sometimes, in the middle of the night, I’d hear the telltale wiggling sounds of her crib and wonder if she would cry out for me, but she never did. She was remarkably self-sufficient; silently capable of keeping herself amused and comforted.

When she was about eighteen months, I’d started bringing her to a Saturday play group at a local library. By this time, Meaghan had begun to have a serious fascination with hair, with touching and pulling it. She was indiscriminate in whose hair she pulled. She’d go after any head that came within her grasp. At family gatherings all her cousins knew to tie their hair back when Meg was on the loose, but the little toddlers in her play group were not so wise and wary. I spent every session shadowing my daughter, alert to any sudden movement of her hands toward the silky tendrils of her

unsuspecting targets. The upshot, of course, was that I could rarely allow Meaghan to get close enough to the other children to actually interact with them--the sole purpose of my bringing her to the play group in the first place. And I never got much of an opportunity to talk to the other mothers, unless it was to apologize for my child’s bizarre behavior.

I did observe the other children though, and I particularly listened to what they were saying. It struck me that almost every other child in the group, with an age range of about one to four years, had some vocabulary. Even the youngest babies would babble or gurgle or signal that they were enjoying the fray by making frequent eye-contact with their mothers. But my child said nothing. Nor did she ever glance my way. She just toddled about, toy in hand, chasing after hair. Each time we went I carefully observed the others, looking for another child like mine, and when I didn’t find one my heart would sink a little further.

Meaghan’s pediatrician was unconcerned. In fact, he was in such a rush all the time that I was loathe to take up his time with my troubles. But I was beginning to suspect a problem, and I desperately wanted someone to either validate my concern or to offer me some concrete reassurance that I had no real reason to worry. I decided to switch pediatricians.

I brought Meaghan to Dr. John Schey for an introductory check-up when she was two months shy of two years. He listened patiently and carefully to all that I had to say and, when I was finished, asked several probing and pertinent questions.

“How does Meaghan play with other children?” was one of them.

“She doesn’t really play with them,” I responded truthfully. “She’s only interested in pulling their hair.”

“I see,” he said. “And toys? How does she play with toys?”

This stymied me. I was concerned about my daughter‘s lack of speech, not about how she played with toys. I wasn’t sure how to answer. “She plays with them like other kids do. At least, I think she does.”

Now, sitting in the tiny evaluation room at North Shore Children's Hospital, I was able to observe exactly how my little girl played. She went from toy to toy, picking them up, sometimes mouthing them, sometimes shaking or twirling them, then putting or dropping them down. There was no purpose to her actions, nor any sustained attention to any toy. At home Meg would sometimes allow me to show her what to do, but here I was told not to interfere. Joan wanted to see what she would do -- or not do -- on her own.

Several times, when Meaghan seemed interested in a particular toy, Joan took it from her and hid it in a suitcase or behind a small screen. Meg neither objected to the taking of the toy, nor made any attempt to find it.

I knew she was not feeling well but, even so, her disinterest disturbed me. It seemed that once a toy was out of sight, it went out of her mind. She was uninterested in exploring the various ways she could manipulate things. She tried to pry open the little doors of a Mickey Mouse pop up toy rather than pressing the obvious buttons. And, although she did push a toy truck around the room briefly, it didn’t occur to her to use the attached string to pull it. Even when shown the correct way to play, Meg preferred to do things her way.

Finally, after two of the longest hours of my life, the session ended.

Steeling myself, I asked, “How did she do?”

Joan looked me in the eye. “She has some definite delays,” she said. “But why don’t we wait until the other assessments are in. We’ll know more then.”

She knelt down to my daughter with an indulgent smile. “Good bye, Meaghan. I hope you feel better tomorrow.” Meg responded by lifting her arms and placing them around Joan in a tentative hug.

“This is a good sign,” Joan said, looking up at me. “It means she probably isn’t autistic.”

My eyes bulged. Autistic? What on earth? I knew next to nothing about autism, but I did know that it was a very serious, lifelong affliction. The mere fact that the word had been mentioned in connection with my little girl sobered and terrified me. Tears prickled my eyes as I thanked Joan for her time and took hold of Meaghan’s hand.

We had time for a brief bite to eat before our appointment with a mental health assessor. Next would come a neurological exam. I wasn’t exactly sure what neurology was or how it fit into my daughter’s problems, but I was suddenly leery. Still in store for the remainder of the week were occupational and physical therapy assessments, audiological testing and finally, on Friday, the all-important speech and language evaluation.

When I had first received a copy of the schedule, I had blithely predicted that we would breeze through all but the last few appointments. Now, I wondered how we would survive the week.

A week later, my husband, Brian, and I sat in Joan’s office while she reviewed the team’s findings.

“First of all,” she began, “I want to stress that, because Meaghan was feeling so poorly throughout the course of her evaluations, the results are not etched in stone. That said, the general consensus of the team is that your daughter is displaying global or pervasive developmental delays rather than specific delays in one area. Estimates of her current functioning are in the nine to twelve month range, with a scattering of more sophisticated skills.”

Blow number one.

“Meaghan’s greatest deficit is clearly in the area of language development,” Joan went on. “In fact, her speech appears delayed beyond the level one might expect given her general cognitive functioning. She does not respond to her name consistently, nor does she typically respond to speech or acknowledge the speaker. She appears more responsive to environmental sounds, bells and music, than to words and, although she does demonstrate understanding of some familiar, salient words, she does not demonstrate any verbal initiation, interaction or exchange.”

Blows number two and three.

Joan paused, looking up from the reports. “It gets a bit better,” she said with a sympathetic smile, before resuming. “While Meaghan’s verbal interactive ability is an area of particular weakness, she does demonstrate some higher level social skills. For example, the mental health clinician observed some stubborn and oppositional behaviors often typical of children at the end of their second year.

"And many of us noted that Meaghan is quite skilled at soliciting help from you, Mrs. Buckley, by bringing you a toy or by whining and tugging to convey that she wants to be picked up. This ability to engage others to help her reach a desired goal is an important precursor to language.

“Also, I noted an emergent sense of object permanence. That is, Meaghan is able to maintain some “mental image” of an object after it has been removed from view. At one point during my exam you gave Meaghan some animal crackers from a box, then closed the lid. Several minutes later she took the box out of your hand and opened it, clearly recalling the crackers and searching for them where she expected to find them. However, her

performance in this area is quite inconsistent, as she was not persistent in searching for toys when they were hidden.

“Meaghan’s efforts to learn through imitation are another area of inconsistency. When she observed you drinking juice through a straw during my evaluation, Mrs. Buckley, she took the can from you and began to suck appropriately at the straw. She also attempted to imitate me when I showed how to squeak a squeak doll, but she did not imitate my demonstrations of how to pat or feed the doll.

“Areas of relative strength are Meaghan’s gross motor and daily living skills, as she is reportedly able to drink from a cup and feed herself with a spoon. The physical therapist noted that Meaghan’s muscle tone was low, but her developmental reflexes are adequately integrated and her balance reactions on the therapy ball were satisfactory. She shows no adverse reactions to touch, enjoys cuddling and hugging, and these are encouraging signs.”

My husband and I, still reeling from the earlier blows, exchanged a cautious glance. At least the news was not all bad.

“Meaghan’s fine motor ability is estimated to be moderately delayed,” Joan went on. “The occupational therapist reported that Meaghan was able to visually track an object in all directions; that she could roll and toss a ball, and she was able to remove pegs from a pegboard using a neat pincer grasp. Her eye-hand coordination for more refined tasks, such as simple block construction and crayon use, was difficult to judge as Meaghan showed no interest in these materials and was not observed to interact with them in any meaningful way.”

Joan drew a deep breath, eyeing us compassionately before plunging on. “Overall, Meaghan’s inability to assign any meaningful function or purpose to toys was an area of significant concern for most of us, as was her fleeting attention span. While Meaghan is able to interact fairly appropriately with a few familiar objects, such as food or a ball, all other objects appear undifferentiated from one another in her mind. They are interesting to her as something to momentarily examine or explore in a sensori-motor manner by mouthing, shaking, rolling, banging or spinning, but they do not hold her interest as unique objects that can be played with in an intentional fashion.

“It was also observed that Meaghan’s play was, for the most part, autonomous. Although she did seek you out, Mrs. Buckley, when a need arose, her interactions with most of the team members, myself included, were less consistent. She was at times aloof, even avoidant of our overtures, while at other times she was almost indiscriminately affectionate. She was resistant to looking any of us in the eye, and it was difficult to

engage her attention to participate in directed activities.”

Joan sat back, spreading her palms out on her desk. “Now, as to the diagnosis,” she concluded, meeting our eyes, “it would be premature for me to say anything with certainty at this point, given Meaghan’s extreme youth and precarious state of health. Certainly her lack of eye contact, fleeting attention span and repetitive, stereotypical manipulation of toys, are characteristic of some atypical developmental disorders, such as autism. But my gut feeling, and the feeling of several of the other team members, is that these behaviors are developmentally appropriate given Meaghan’s pervasive delays.”

My mind was reeling. Was this supposed to be good news or bad? How could it be that our lovely little daughter was so backward in so many areas, and how could I not have known? I had read all the books on infant and toddler development and had monitored Meg’s progress accordingly, and yet this meticulous tracking hadn’t alerted me to the fact that Meggie’s problems extended so far beyond speech. Granted, she was my first child, so I had little experience to go by, but surely her pediatrician should have noticed something? I looked at my daughter as she toddled around the room, utterly oblivious to our distress.

“What do you think caused all these delays?” I asked.

“I don’t think we’ll ever know,” Joan answered kindly.

“There must be some reason for them?” My husband, who is a civil engineer and used to getting to the bottom of things, probed.

“Well,” Joan hedged, “you might say she has funny wiring.”

“Funny wiring?” We echoed.

“Yes. It means that messages coming into her brain are not relayed smoothly or appropriately. It would account for the atypical aspects of her behavior.”

I said nothing. I didn’t dare give voice to my innermost dread. She had said Meg was developmentally delayed, not retarded. In my ignorance, I assumed a difference. And she had not said my child was autistic. She had said she had funny wiring. Not that there was anything funny about it but, given the alternatives, I could live with it.

“Where do we go from here?” my husband queried.

“I’m glad you asked.” Joan smiled at us indulgently. “Here is a list of the names and numbers of some people you should contact as soon as possible.” She handed over a sheet of recommendations atop our copy of the team’s report. We stood to take our leave.

“Goodbye, Meaghan,” she said. “It was nice meeting you.”

My daughter, who had been nibbling on animal crackers, stopped munching long enough to tilt her head in Joan’s direction.

“My name and number are on the list, Mrs. Buckley. Please feel free to give me a call if you have any further questions or concerns.”

I nodded and shook her hand. I had hundreds of questions and concerns, but I was too dazed to put them into words.

“What do you think?” I asked Brian as we were riding home. “I mean, funny wiring? What kind of diagnosis is that?”

“I don’t know,” he said. He tends to become taciturn when he’s troubled, unlike me. I was nearly exploding with the need to talk this monstrous thing out.

“And here we always thought she was so smart,” I sighed, marvelling at the extent of our naivete. Yet it was true. When Meaghan would stand in the corner of a room, seriously regarding us with a cocky little tilt to her head, we’d told ourselves that she must be thinking some very deep thoughts. We couldn’t wait until she could speak so she could tell us what they were. Now, we had to wonder whether she would ever speak.

“Let’s not talk about it,” Brian said, fighting back tears.

We rode along in silence, each of us immersed in our own miserable musings. With a heavy sigh, I glanced down at the list in my hand. The name on top was that of Sylvia Gordon, a social worker. I wasn’t quite sure what a social worker did, but I assumed that she would be my liaison to getting Meaghan the services she needed. I resolved to give Ms. Gordon a call as soon as we got home.

I scanned the list. An early intervention program was the foremost recommendation of the DEC team. They also recommended another hearing test, as Meg had been too uncooperative to get any definitive results on the one she’d had. The neurologist wanted me to schedule an EEG and a CAT scan as soon as possible to rule out seizures or structural abnormalities as

the cause of Meg’s delays. The number of the hospital lab was also on the list, as the team wanted some blood tests run to rule out any genetic or metabolic problems. The possible ramifications of all these tests frightened me, and I closed my eyes briefly, willing the nightmare away.

Opening them again, I glanced at the last two names on the list. One was a pediatric ophthalmologist. The team wanted Meg’s eyes examined to see if there might be some visual explanation for her close inspection of toys or her tendency to tilt her head to the side. The last listing was for the DEC secretary. I was to call her in six months time to arrange another round of evaluations before Meg turned three. They wanted to chart her progress and to make recommendations for special education which, unless some miracle occurred between now and then, would be necessary.

I looked over my shoulder at my blissfully napping child, trying to fathom all that was in store for us. Meaghan could not learn properly on her own, this much had been made clear to me. But she could learn -- of this I was certain. Several days, upon our return home from the evaluations, I’d plopped her on my lap, taken her small hand in mine and demonstrated repeatedly for her the proper way to play with her busy boxes and pop up toys. Sometimes she’d averted her head or squirmed to get down, but other times she’d sat compliantly and let me teach her to push the buttons and manipulate the various knobs, dials, bells and buzzers. If Meaghan could learn to play properly, she could learn to do other things.

What I hadn’t understood was that before a child could communicate, she had to have so many other basic skills. Dr. Spock’s and all the other baby books I’d resolutely poured over with the intent of raising the “perfect child” hadn’t made this clear. There had been nothing written on object permanence, means-end, cause and effect or any of the other precursors to language I was now learning about.

The books had said to read to your child, to look at picture books together, and I had done this. But, if Meaghan couldn’t conceptualize objects as having different purposes, as demonstrated by her undirected play, how could she possibly understand what pictures were or what they represented? She certainly couldn’t understand nursery rhymes or stories. She couldn’t even understand many words.

I had been going on the misguided assumption that Meaghan would become less self-absorbed and more interested and involved in the world around her when she was ready. Now I realized that it was possible that she might never be ready; that without a whole lot of help she might slip away from us altogether.

Little did we know when Meg displayed this early fascination with the spinning of her rattle that this early preference

for toys over faces boded dire things for her future.

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Chapter Two

One Test After Another

In response to my call for help, Sylvia Gordon, the social worker from the Lynn Toddler Development (Early Intervention) Program came to the house in early April. She observed Meaghan for about half an hour and pronounced her a prime candidate for the program. A mixed blessing.

Unfortunately, we would have to await an opening, and she could give us no assurances on when one might come. This disturbed me, as I felt every passing week was crucial. Meggie was already a year behind. If we didn’t start playing catch-up soon, what would become of her?

I didn’t have time to dwell on my impatience, however, as Meaghan had a series of tests to undergo. The day after Sylvia’s visit I took her back to North Shore Children’s Hospital for a CAT scan. Young children are generally sedated for this procedure as they must lie absolutely still when the x-ray pictures are taken. The CT scan machine is very large and noisy, and any un-sedated child would likely be terrified of it.

Meaghan was given a shot of sodium pentothal, and we waited for her to fall asleep. She didn’t, so an hour later she was given another shot. Another hour passed. Several times during the hour I thought she was about to drift off, but some commotion in the hallway where we were relegated to wait would rouse her. Finally, just as we were about to give up, two and a half hours after our scheduled testing time, Meg succumbed to sleep.

She was strapped onto a gurney and wheeled in under the monstrous machine. I prayed 1) that she wouldn’t wake up and be traumatized for life, and 2) that the pictures the machine was taking of her brain would turn out to be normal ones. The technician sat in a glassed-in booth, and I could see the pictures coming up on the screen. I tried to read the technician’s face, to see if she was alarmed by anything she was seeing, but her bland expression gave nothing away.

When the procedure was over, they wheeled Meggie out. She was so deep in sleep there was no hope of rousing her, so I carried her out to the car and strapped her into her car seat.

The ride home was harrowing. Meg started getting sick about half a mile from the hospital. She was still fast asleep and white as a sheet. I pulled the car over to ascertain if she was still breathing. She was, but barely. I cleaned her up as best I could, and we started off again. She was sick repeatedly during the remainder of the ride and through it all she didn’t stir. How we made it home I’ll never know, but I vowed my child would never be sedated again.

We had a five day reprieve before I had to bring Meaghan back to the hospital for an EEG, hardly a fun procedure, especially for a child who doesn’t understand what is being done to her and why.

The technician began by measuring Meaghan’s head, making marks here and there with a blue marking pencil. Then she rubbed the marks with a Q-tip and some solution, before gluing twenty-four electrodes (small gold disks) onto Meggie’s scalp. The electrodes were attached to wires that went into the EEG machine. Meg was curious about all the wires and, rather than sitting quietly while all this was being done, would try to pull them out to examine them as fast as the technician could put them in. Brian and I had to hold her hands down, which hardly pleased her, so that by the time we were ready for the test to begin she was fit to be tied! On top of this, we had been told to sleep deprive her before the test, so she was exhausted. But not so exhausted that she could relax enough to fall asleep. Not that I blamed her. She was in an unfamiliar setting, her head was all glued with wires, and she was not allowed to move at will. In short, she was miserable.

So we didn’t get a sleep reading, but we got an awake one, an endless zig-zaggy graph of the electrical impulses in Meg’s brain. I couldn’t make heads or tails out of the printout, but the technician said it looked “okay.” There was no detectable seizure activity. We received further good news as we were leaving from the neurologist, who told us that she had reviewed Meg’s CAT scan films and saw no evidence of any cerebral structural abnormality. Meg’s blood work had also come back normal, so whatever was causing our daughter’s delays was neither anatomical nor genetic.

I was pleased to be able to relate these positive results to my mother when she arrived for a visit in mid-April. I hadn’t told her the full extent of Meg’s delays as I hadn’t wanted to worry her, but I suspect that by the time she left three days later she had a pretty good idea of what we were up against.

The spring weather was beautiful, beckoning us out-of-doors. Meaghan had no problem with being outside, the problem arose when I tried to engage her in any type of play. I’d bought a huge, bright pink ball I rolled across the yard to her. She barely noticed it. She preferred to do her own thing, which was to stand at a particular spot on our back patio and stare at the sun dappled reflection of the branches of a tree overhead on the flagstones. This fascination with the play of light and shadow was one aspect of her “atypical” behavior, I explained to my mother.

“Well, if it keeps her amused, I suppose there’s no harm in it,” she replied. “Why don’t you just let her stay out here with me for a bit while you go in and get a few things done.”

Our yard was totally fenced in, so with any other child this would have been a sensible suggestion, but Meg was a special case. I dared not let her out of my sight, inside or out, for fear of what she might get into. Because she couldn’t communicate with me, nor I effectively with her, I had no way of knowing whether she had any awareness of what was okay to do and what wasn’t. I told my mother as much as we all traipsed back inside. I desperately wanted to take a shower but said it could wait until Meggie went down for her nap.

My mother looked at me askance. “That’s ridiculous, dear. Certainly the child can amuse herself for a few minutes while you go up and take a shower. I’m here to watch her.”

“I know, Mom,” I said, “but she gets really upset when I’m out of her sight.”

“Then let her get upset,” my stalwart mother replied. “You have to stop spoiling her, dear. You’re letting her get away with far too much.”

Chastened, I took her advice and went up to take a shower, resolving to be firmer with Meaghan in the future. Was my lack of firmness part of the reason for her problems?

I heard Meaghan’s muted screams and sobs from outside the door the entire time I was in the shower. I hastened through the ritual but, by the time I emerged from the bathroom, my daughter’s little face was red and swollen and her breathing ragged. My poor mother, who had tried to reason, cajole and comfort Meg while I was showering, looked just about as bedraggled her granddaughter did. I hadn’t the heart to say, “I told you so.” I could see she felt as emotionally drained by the episode as I did.

“You know, dear, I wonder if part of Meggie’s problem might be her

hearing? I called her several times when her back was turned to me, before she started crying, and she didn’t turn or give any indication that she heard me.”

“I know, Mom,” I said, pulling the towel off my hair. “She often doesn’t respond to just her name. But if I ask her if she wants something to eat or to go out, she responds readily enough. And she looks immediately when she hears the noise of her toy car. Still, I suppose I should have her hearing re-checked. It’s just that I’m getting tired of all the testing.”

A week later I was back at NSCH, registering Meaghan for her second hearing test. We were ushered into a tiny room. Meg sat in one chair with earphones on, and I sat in another to observe and try to keep her calm. The examiner was in a separate booth on the other side of a windowed partition. She called Meaghan’s name and played a variety of tones at various decibel levels, all of which emanated from one of two speakers built into the walls on either side of us. Meg turned or cocked her head a few times as if listening, especially to the sounds, but was otherwise either inattentive or unresponsive. Once again, the test was essentially a wash.

I suspected that Meggie could hear perfectly well, but that she only responded when she heard what she wanted to hear. Perhaps complex sounds, like speech, were beyond her processing capability.

I was frankly more concerned about my daughter’s eyes than her ears, so I was relieved when we finally got in to see Dr. Robert Freeman, the ophthalmologist the DEC team recommended.

Since her infancy, Brian and I had been aware of a slight inward turn of Meaghan’s right eye. Brian’s mother had a lazy eye, and we thought Meg might have inherited it. The doctor examined her eyes and said he didn’t think so, as her right eye moved quite well to track the objects he held out in front of her. He did speculate that she might be extremely nearsighted, accounting for her close inspection of toys, but when he put drops in her eyes to test her vision it checked out fine. I was relieved. I didn’t want to hear that there was one thing more wrong with my child.

So, there was nothing amiss with Meaghan’s eyesight. Her hearing was fine but selective. Her brain was anatomically sound and her blood work indicated no genetic problems. All these factors were normal, yet my daughter wasn’t. What was going on?

Our beautiful daughter at age 2. Looks normaldoesn't she? Unfortunately, she was a far cry from it.

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Chapter Three

“You Can’t Make Me”

After a torturous two month wait, we were finally given the go-ahead for Meaghan to begin in an early intervention program at the end of May. If all went well, she would be attending a two and a half hour class every Tuesday and Thursday morning, with time off for vacations, until she turned three.

Meg’s adjustment to the classroom was rocky. I stayed with her for most of her first session and, as long as I was by her side, she was content. When I left the room a few minutes before the end of class to wait outside in the hallway, she collapsed into tears and was inconsolable until dismissal.

The second session was rougher than the first. This time, after bringing Meg into the class and getting her settled, I absented myself for most of the two and a half hours. I waited across the hall in the teacher’s room, attempting to read while listening for my daughter’s cries. I heard them throughout most of the morning, although there were occasional lulls. She probably had to pause and catch her breath.

Much as I hated to hear Meaghan’s cries of distress, I must confess to being secretly pleased to know that she missed me -- in her fashion. I’d heard that autistic children normally don’t go through much of an attachment stage, that they don’t suffer unduly from separation anxiety, so I found Meg’s desperate sobbing for me reassuring.

Not that I deluded myself that ours was a typical mother-daughter relationship. Meaghan never shunned my company nor shied away from physical contact, but there was little reciprocity in our exchanges. She let me hug her. She did not hug me back. My physical presence was a staple in her young life that she depended upon less for comfort and companionship than for constancy. She could accept affection but she couldn’t share it.

Nor could she share other feelings or experiences. Meaghan never pointed

things out to me or attempted to show off for me or for anyone else. She was perfectly content to amuse herself and heedless of any parental feedback. Meg looked at me and came to me when she wanted or needed something. She rarely smiled at me. Sometimes, when she was a toddler, I could elicit a faint smile by singing to her and bouncing her on my lap (playing “This is the Way to Boston” or “This is the way the Ladies Ride”). But if I wasn’t stimulating her in some physical way, she mostly just stared--not at me but at some mysteriously intriguing focal point a bit above or to the side of my head.

I hoped that, by being around other adults and toddlers Meg would learn the basics of play and interaction, but this wouldn’t happen if she couldn’t stop crying long enough to participate.

“Many children have a difficult time at first,” her teacher reassured. “Meaghan will do just fine once she becomes accustomed to being without you.”

“You think?” I queried skeptically.

“You’ll see,” she said, with the certainty of experience.

Blessedly, she was right. By the following week, Meaghan was not only taking part in most of the sensory-based activities, but her teachers wrote that she was actually “happy and laughing” on occasion. Unfortunately, there was only one more week of class before a three-week summer hiatus so, just as Meg was getting the feel of being on her own, she would be back with me full time.

At least there was some carry over with her speech sessions. When she began in the Toddler Program, Meg also began seeing their speech therapist, Denise, for an hour on Wednesdays. I knew that an hour of therapy a week was hardly going to make a dent in her overwhelming language delays, especially as she rarely cooperated for more than a small fraction of that hour, but I was eager to observe how Denise worked with her so I could continue the work at home.

Denise termed it a multi-disciplinary approach, but what it came down to was trying to engage Meaghan in any kind of functional or reciprocal play and pairing simple, direct words or phrases with that play. Imitation, I learned, was the first step in speech training. Meggie had to learn to do what we did before she could learn to say what we said.

The problem was that Meg didn’t like being told what to do. Nor did she like having toys thrust upon her. If she picked out a toy or activity, she would

allow us to show her how to use it, and she generally did fairly well following our modelling. But, when Denise tried to take charge, Meggie would have none of it -- at least not initially.

As the sessions went on, Denise was more successful in directing the activity -- getting Meg to catch and pop the bubbles she blew, to push a car or roll a ball back and forth to her, to put pegs in holes or build with blocks. But Meaghan was anything but consistent. One session she would be fairly calm and cooperative and the next, she would tantrum from start to finish. Even at her best, Meg’s attention to any task was limited. She was easily frustrated and could be quite stubborn in getting her way.

In fact, Meaghan was happiest when she knew what to expect and when few demands were placed upon her. I would have been perfectly content not to place any demands on her had she had the wherewithal to occupy herself constructively, but unfortunately she evidenced maddeningly little interest in doing much of anything.

When I attempted to structure Meaghan’s play at home I failed miserably. I’d resolutely lay out several toys on our kitchen table and coax Meggie up into her booster seat, but as soon as I picked up the first toy and began to demonstrate its use, she’d begin to fuss. The more I tried to teach her, the more she fussed. Or she’d knock the toys off the table, or scramble down off her chair and dash away. Her most effective tactic for evading learning was simply not to look -- or to look at anything but the task at hand.

Often, when we reached such an impasse, her winsome gaze would wander forlornly to the window. I knew that she wanted to escape outside. I did too. But I also knew that every day that went by without her taking even a small step forward kept us back at the starting gate of what had become, in my mind, a desperate race against time to turn things around.

Meaghan’s frustration threshold was low because her stimulation threshold was low. It was easier for her to avoid or ‘tune out’ information than to ‘tune in’ and run the risk of sensory overload. With this in mind, I tried to simplify tasks and eliminate distractions as much as possible, but Meaghan’s problem went far beyond attention deficit. When she did bother to look at a task or toy, she would only focus on a single feature of it, generally one that afforded her some pleasing sensory feedback. She liked the silky edges of her “blankees,” the smooth planes of plastic blocks and the spinning wheels of toy cars.

At one point, Meaghan took to dragging an old doll of mine around with her everywhere. I was delighted by her interest in this doll and, naively reasoning that if she liked one she would like others, I rushed out and

bought her several new and, what I considered, far more appealing dolls. She wanted nothing to do with them. She only wanted my ratty old doll because some sensory aspect of it pleased her. She didn’t want to play with the doll. She had no interest in imitating my attempts to get her to feed or care for it. She just wanted to hold onto it.

She liked to hold onto other things as well, which led me to assume that, at this point, her sense of touch was her most reliable and least aversive sense, certainly more reliable and less aversive than her vision or hearing. This being the case, Denise suggested that I work on Meaghan’s tactile discrimination and tolerance by having her experience the feel of different textures. Out came the finger paints and play dough. I immersed her hands and bare feet in dry noodles, rice, corn meal or sand and rubbed her arms and legs with lotion.

Meg tolerated brief interludes of this tactile stimulation but did not seek it out. I had to prod her physically to get her to go into her sand box or wading pool. Once I got her into one or the other, she’d either sift her fingers through the sand or splash the water about, but she had no interest in shovelling sand into a bucket, despite my repeated demonstrations, and all her pool toys wound up in her mouth.

Meg’s one saving grace was her curiosity. I found that if I left things lying about the house or casually placed them on her high chair tray while she was waiting for a meal, she would gravitate to them and attempt to figure them out. At these times she would allow me to give her a few pointers. In this informal, un-pressured way she learned how to stack nesting cups and horseshoe rings (size discrimination), how to build simple towers with blocks and how to put pegs in holes. She began to imitate my actions with toys. If I banged two blocks together, she would do likewise, and in this indirect way I taught her to clap her hands. I modelled using a toy phone for her and, when I wasn’t watching, I’d sometimes hear her babbling into it.

When I was changing or bathing her, I’d sing simple songs accompanied by gestures, like “The Itsy Bitsy Spider.” She liked to watch my hands and tried to move her own in approximation of mine.

I’d often hide her favorite snacks from her to reinforce her grasp of object permanence. Instead of putting the crackers back in the cabinet after she’d had some, I’d let her see me put them in a different location. Then, the next time she wanted some, I’d tell her to go get them, and she unfailingly remembered where to look. I was beginning to realize that the more important things were to her, the more she attended to them.

Getting what she wanted still meant a lot more to Meaghan than the ability

to communicate what she wanted. She still wasn’t using any words, but her understanding of language was slowly developing. She was beginning to listen to it. When I gave her simple directions like “go to your chair” or “go get your jacket,” she would hasten to do so. And, although her actions and play remained mostly undirected, she was beginning to figure more things out for herself. She figured out how to open and close doors, how to climb up on a chair to reach what she wanted, how to twist the tops off jars, how to put together and take apart simple Duplo creations and how to pull the string on her “See and Say” toy to elicit the sounds she liked.

When playing with this toy Meaghan never bothered to actually set the dial to a particular picture before pulling the cord. Indeed, she evidenced little interest in the various animals or alphabet letters pictured around the perimeter. I doubt she even made the connection between noise and picture. She was content merely to pull the cord and hear the same noise over and over. She never tried to imitate the noises she heard.

In fact, Meaghan never babbled or made any sound when she “played.” Her focus was so narrow, her thought pattern so limited, that she could not -- at this point -- fathom the function of toys, much less the function of speech. She certainly couldn’t appreciate the pretend aspect of play, so for her there was no reason to attempt to talk out her actions. I had watched enough “normal” toddlers to know that they rarely played in silence. They generally used play to bolster their burgeoning language and visa versa.1 I knew that the longer my daughter went without figuring out one or the other, the more critical her delays would become.

Not only was Meaghan uninterested in toys or tabletop play, she was not very interested in climbing about or exploring her environment physically, as most typically developing toddlers are. She occasionally climbed on our furniture, but she shied away from all playground equipment, except for swings. I bought her a small toddler slide she could practice on at home. She clung to me as I showed her how to climb up and slide down. When she got the hang of it she was mildly amused by the exercise, but what really gave her a kick was her own discovery that she could roll her toys down it. She delighted in doing this for hours on end. Once Meg conceived of her own way of doing things, she resisted our attempts to break her out of the pattern.

Inside, Meaghan wouldn’t let me out of her sight, trailing after me like a lost puppy, but outside she wanted as little to do with me as possible. This was fine as long as we were in our fenced-in yard. But, when I wanted to take her further afield, she’d refuse to hold onto my hand. Fortunately, she was still small enough to plop into a stroller or shopping cart, but I knew I wouldn’t be able to wheel her about in these devises for much longer. I’d have to figure out some way to get her to walk along side of me without

fussing, or risk repeated scenes out in public.

The solution came quite by accident one day when I decided we’d take our cocker spaniel, Shaunie, for a walk. I was planning on putting Meg in her stroller as usual, but when I got out the leash for the dog she grabbed hold of it and wouldn’t let go. So, I let her walk the dog with me and, since she was holding onto the leash, she stayed right by my side.

From then on, whether we took the dog along or not, whenever we’d go for a walk the leash would come with us. I’d hold onto one end and she’d hold onto the other. I’m sure the neighbors thought this pretty odd (we were relatively new on the block, and I didn’t know anybody well enough to explain) but I couldn’t worry about how it looked. The important thing was that it worked to keep my daughter from screaming and straying.

While Meggie was still on her hiatus from the Toddler Program, I took her with me for a week long visit down to her grandparents’ house in Bronxville, New York. Meg delighted in the experience of the flight down and arrived at “Grammy’s” full of beans, very excited to be away on this adventure.

She didn’t start to fuss until I went to tuck her into the unfamiliar, borrowed crib. Her exhaustion overcame her fear the first night, but she awoke clingy and out of sorts the next morning and stayed that way for the remainder of our visit. She had no interest in doing or seeing anything. We took her to our club, to the playground, to the zoo. She neither left her stroller nor took her eyes off the ground. She was clearly terrified by the strange surroundings and could only cope by ‘tuning out.’

Grateful as I was for my parents’ hospitality, I was never so glad to return home. Meggie felt likewise. Her spirits and disposition improved immediately once she was back on familiar turf. She was equally pleased to return to her classes for the summer session. This time she had few problems adjusting and before long it was time for her six week evaluation.

The consensus of the conference was that, while there had been some encouraging improvement in Meg’s play skills, self-care and eye contact, talking was still pretty far off prerequisite-wise. Her teachers could give me no assurances as to whether or not Meg would ever speak, but they did supply me with a host of suggestions on how to help bring her along.

The most surprising and enlightening of these suggestions was something called sensory integration therapy. According to the program’s occupational therapist, Meaghan had problems processing and interpreting sensory information. She saw, heard and felt things differently than most people do. The therapist used the example of touch. For Meaghan, she said, deep

pressure, such as cuddling, was comforting and integrating, while light touch was aversive. On the other hand, she herself used a light, fingertip touch to handle objects, rather than grasping them firmly with the palm of her hand. (This explained her resistance to having her hand held, and why she preferred to lightly grasp a leash.)

I learned that, in addition to our five familiar senses, there were several other internal ones that weren’t working well with Meaghan. These proprioceptive and vestibular senses impacted her gross and fine motor coordination, her balance, movement and spatial perception.

According to her teachers, having Meaghan actively engage the various parts of her body by swinging, sliding, bouncing, jumping, running and crawling, as well as being tickled and cuddled, were the most important things we could do for her at this stage. Apparently, satisfying her body’s “craving” for this type of physical stimulation would help her brain to properly integrate the sensations passing into it, and this would somehow help her to develop the confidence to play and speak.

Who would have guessed?

Just looking at Meg, I had and still have the feeling that a lot more is going on inside that

mixed up little head of hers that meets the eye.

Click on the links below to get where you want to go:)

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Chapter Four

Did She Say “That”?

Armed with the suggestions of her early intervention teachers, I redoubled my efforts to “make Meggie better.” If vestibular stimulation was what she needed, then vestibular stimulation she would get.

I went out and purchased a hammock, and we strung it across our family room. Whenever I washed the sheets, before I folded them, I’d get Brian to hold one end and I’d hold the other, and we’d give Meg a “swing ride.” She loved it! She also loved being pulled around the house in a laundry basket I’d tied to a rope. She loved tickling, roughhousing, being spun around in my arms and bounced on my knees. Most of all though, she loved jumping and frolicking on our bed.

We’d gotten her a small trampoline, but she never took to it like she did to our bed. Her favorite activity was to sit on her father’s shoulders while he bounced up and down, repeating “boompity-boompity-boomp.” Then he’d suddenly stand up and dump her onto the bed. Meg would burst out laughing as she toppled and quickly scramble right back up on daddy’s shoulders for another round of “boompity boomps.”

When she laughed and played with us like this, we could almost forget that there was anything wrong with her. When she was happy, she was such a delight.

Meg enjoyed going on outings and on summer weekends Brian and I would take her to various beaches for sand (tactile) and water (balance) play. She loved to go wading far out in the shallow water at Wingaersheek Beach in Gloucester. Occasionally, we took her further afield to Salisbury Beach in New Hampshire, where she could not only play in the water, waves and sand but also get vestibular stimulation riding the various amusement park rides.

As summer passed into fall, and we continued to stimulate her senses as

well as her mind, Meg became calmer and happier.

In August, we had begun weekly speech therapy sessions up at NSCH with Dottie Barry, a member of Meg’s original DEC team. Meaghan’s participation in these sessions still fluctuated with her mood, but overall her attention and cooperation were improving.

In September, Dottie began to teach her to sign. I was initially concerned about this. I thought that if Meaghan learned to sign, she wouldn’t need to learn to speak. But Dottie assured me that it didn’t work that way; that signing merely facilitates communication until a child is ready to speak. If Meg learned to sign and by signing came to understand that she could tell us what she wanted and get it, she’d be that much more likely to give words a try.

The first sign we worked on was the one for “more.” Dottie began by blowing out several strings of bubbles and engaging Meaghan in the activity of catching and popping them. Then she stopped. When Meg started to fuss, she said, “Oh, you want more,” clapping her extended fingers together in the “more” sign. She blew out more bubbles. When she stopped again, she took Meg’s hands and helped her make the sign, saying “more.”

By the end of the session, Meg was signing “more” herself. She understood that when she signed she got bubbles (means-end), taking the first step in communicating her wants and needs. It didn’t take long for her to begin to generalize her “more” sign to other activities, particularly meals and snacks.

Meaghan began to imitate gestures. These were more difficult for her to figure out than copying my actions with toys, as gestures require more information analyzing and integrating. Meg loved to clap her hands while sliding down her slide. She began blowing kisses and waving bye-bye.

In toddler class, her teachers reported that she hummed or gestured appropriately to the songs they sang at circle time, although she never did both at the same time. At home, she would focus on me intently when I sang to her, moving her hands in approximation of mine but never humming or vocalizing.

Then one evening Brian came into the room where I was changing Meg and made a pretend plane out of his hand. He flew the ‘plane’ (his flattened hand) over and around her, making an “eerm, eerm” sound as he did so. Meg was enthralled. When he stopped she signed for “more,” so he did it again. When he stopped this time, Meggie astounded us both by making her hand into a ‘plane’ and flying it just like daddy had done, complete with the “eerm” sound.

It was an exhilarating moment for we knew then that, if Meggie was able to imitate sounds as well as gestures, she would be able to talk!

Every week she was “tuning out” less and understanding more, paying more attention to words. She now consistently responded to her name and to the simple instruction of “Meggie do.” Her eye contact had improved as well. Whenever she wanted something, I would tell her to “look at mama.” She would have to look me in the eye to get it.

It didn’t take long before I no longer had to use the cue. She looked me in the eyes anytime she wanted something. Brian and I were delighted and encouraged by her progress, and I had little doubt but that the vestibular stimulation she was getting on a regular basis was responsible.

By this time I was so sold on sensory integrative therapy that, when Denise left the toddler program in September, I opted to switch Meggie from speech to occupational therapy. I was also finally given the insurance go ahead for Meg to get O.T. up at NSCH, so I signed her up with two therapists there, Barb and Kim.

The sessions consisted of a lot of tactile and vestibular activities using brushes, lotion, sheepskin, giant balls, a slide, a scooter board and bolster and hammock swings. Meaghan’s fine motor skills were also addressed, and she was taught to activate simple cause and effect toys. She particularly enjoyed a toy train that played flute-like music while it moved around the room.

By late fall Meg’s weekly schedule was pretty full. On Tuesdays she went to her toddler program. On Wednesdays she had O.T. for an hour in the morning in Lynn, and Speech up at NSCH in the afternoon. On Thursdays she had class, and on Fridays, she had an hour of O.T. up at NSCH.

A busy schedule for a two-and-a-half year old, but Meaghan did best when I kept her busy. In truth, I was afraid that if I didn’t keep her positively occupied for most of every day, she would plateau or regress. I was driven by the constant need to keep her learning. When she wasn’t at her Toddler Program or at one of her therapies, she and I practiced her new skills at home. For fun we’d swing on swings or go for long walks.

In October, I began taking Meaghan to a nearby cemetery for hand-holding tolerance practice. I didn’t dare do so anywhere else, as she would make such a fuss when forced to hold my hand I was afraid someone would accuse me of child abduction. In the deserted cemetery she could scream and cry all she wanted and the only ones she could disturb were well

beyond caring.

So every day off we went to the cemetery. I would grasp Meggie’s hand in mine and together we would walk up and down the pathways between the headstones. Initially, she fussed nonstop and occasionally attempted to bite my hand. But, as the weeks wore on and she realized that I wasn’t going to let her get her way, the fussing subsided. By month’s end, she was walking beside me docilely holding my hand. When she was good, I’d reward her by letting her romp about freely after our practice.

On one of these unfettered romps, I observed her suddenly collapse to the ground and start rocking furiously back and forth on her hands and knees. Rushing to her side, I found her whimpering softly but otherwise unharmed. I held her in my arms until she calmed down and, when she did, she seemed her old self again. But the episode frightened me.

As soon as we got home that day I called NSCH and scheduled another EEG. I didn’t think Meg had suffered a full blown seizure. She hadn’t lost consciousness or had any sort of fit. But she had lost control of her body, however briefly, and this concerned me. I didn’t want whatever had happened to happen again.

Fortunately there was no repeat of the falling down episode in the weeks that followed and Meaghan’s progress continued. Just about every day she did something new. She was imitating more and more noises, especially rhythms. She had begun to figure out pointing and would look me in the eye and point (usually with her whole hand, not an isolated finger) to what she wanted.

She learned the “me” sign (hand to chest) and used it consistently when asked questions like “Who wants juice?” or “Who wants to go for a walk?” She could also signal “All done.” Initially, she was a bit confused about when to use which of her burgeoning repertoire of signs and gestures, but her confusion didn’t last long, and she was soon quite competent in communicating her needs to us with the use of her hands.

The first Saturday in December, Brian and I decided to take Meg to the Liberty Tree Mall to have her meet and get her picture taken with Santa. The picture taking went surprisingly well. Meggie smiled beatifically up at Santa’s beard, no doubt contemplating a good, solid yank. As soon as the camera clicked I rushed to get her off his lap before she could unmask him. After claiming our memento we strolled around the mall, and Brian stopped off at a candy store to purchase some cashew nuts.

We headed back out to our car and strapped Meggie into her car seat in

back. Before starting the engine, Brian opened the bag of nuts to nibble on the ride home. We were just pulling out of the parking lot when I thought I heard a noise from the back seat. I listened carefully and I heard it again--a distinct “that.” I spun around to face Meaghan, who was leaning forward, pointing at Brian’s cashews and asking for “that.” If I hadn’t been strapped in, I would have jumped out of my seat.

“Brian,” I blurted, “give Meggie a nut. She’s saying “that” for nut!”

“Get out!” he said, nearly swerving off the road. He held the bag back to her and she took one, sitting back with a big, satisfied grin on her face. She knew what she had done. She had asked for something with a word, and she had gotten it!

Having caught on to the trick of talking, Meg was quick to repeat it. “That,” she said again, pointing to the nuts.

“What do you want, Meg?” Brian couldn’t resist coaxing.

“That,” she said more vigorously.

“Here you go,” he said, passing a handful back to her.

I could barely contain my joy. At two years and almost nine months, my daughter had finally said her first word. It wasn’t a conventional first word, but “that” was just fine with me. Actually, I thought it was a perfect choice. It covered all bases. I couldn’t wait to get home to see if Meg would generalize its use (or did she think “that” applied only to cashew nuts).

When we walked in the door and took off our coats, I got my answer. Meg walked around the house like a little queen, singling out to interesting things out of her reach and saying, quite peremptorily, “that!” Brian and I rushed to do her bidding, handing her everything she asked for. She went to town with food. Any snack she wanted, she got, merely by commanding “that.” She couldn’t have picked a more versatile word with which to begin communicating. Meg thoroughly delighted in her newfound power and we were thoroughly delighted with her.

Having mastered one word, she quite quickly picked up several others. By mid-December, she was saying five words fairly consistently and appropriately--“that,” “ball,” “doll,” “hi” and “bye.” Brian and I had been given the best Christmas present ever in our daughter’s speech and, as the holidays approached, we felt confident that the worst of our problems were behind us.

What a minx! Meg loved putting on daddy's shirts. Although she had no idea she was "playing dress up."

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Chapter Five

From Bad to Worse

We were wrong.

On Monday, December 14th, I went up to NSCH for an EEG follow-up appointment with Meaghan’s DEC assigned neurologist, Dr. Eileen Oulette. After giving me her opening spiel, the doctor off-handedly informed me: “according to the latest EEG printout, your daughter is evidencing spike activity in the parietal and temporal regions of both cerebral hemispheres.”

I was stunned. “But I called you the day after the EEG, and you told me everything looked fine,” I stammered. The EEG had been performed after Meaghan’s mysterious collapse at the end of October, a month and a half earlier.

“I’m sorry about that,” the doctor brushed her hand across her desk in a dismissive manner. “There must have been some mix-up. But the interesting news is that the spike activity, occurring as it is near the speech center of Meaghan’s brain, might help to explain her difficulty in learning to talk.”

I stared at her, nonplussed. “You mean her speech problems might be seizure related?”

“I suspect they are to an extent,” she said. “I suggest we start her on medication right away to bring the seizures under control, and we’ll see what happens.”

I exited Dr. Oulette’s office with mixed emotions. On the one hand, I was furious over the time lost in treating my daughter’s seizures. On the other, I felt relieved that I finally had a concrete explanation for some of Meg’s difficulties, one that could hopefully be remedied by medication.

My relief was short-lived.

I had been told that the prescribed Phenobarbital might have some side effects. I understood that Meaghan might become fussy, restless or hyperactive, and that her balance and coordination might be adversely affected. Never did I dream that she would suffer all these side effects to such a pronounced degree.

The very day I started her on the medication she changed from a docile child into a holy terror! Her behavior was no longer just odd, it was off-the-wall. She charged around the house blindly, climbing up and over everything. And, because her balance was off, she’d trip and fall repeatedly, fussing all the more for her clumsiness. I didn’t dare let her out of my sight for a second for fear she would do herself serious bodily harm.

Once I ran downstairs frantically to answer the ringing telephone. Grabbing hold of our portable, I rushed back upstairs just in time to catch Meaghan precariously perched with one leg on the top of her crib headboard and the other on top of nearby shelves. In her hands she was holding a potted plant -- upside down. The dumped dirt and plant debris littered the rug beneath her. I rushed over and grabbed the ceramic vase before she let it fall and lifted her down to safety.

Fortunately, the caller was a mother I had recently gotten to know who was going through much the same ordeal as I with her atypical son. She’d phoned to inquire how Meg and I were doing.

“Never a dull moment,“ I said, outlining developments.

She wasn’t having and easy time with her son either, so we commiserated with each other.

“Have you given any thought to what you’re going to do for school next year?” she asked.

“Oh, Lord, I don’t know,” I sighed. “I called our SPED director and Meg has an appointment with the school psychologist after the holidays. I just pray that she settles down a bit before then.”

“Well, good luck and keep in touch,” she said.

I promised to do so and placed the phone down, stepping gingerly around the dirt and debris at my feet.

I’d never gotten around to joining any parent support group, figuring the last thing I wanted to do if I ever got any free time was to spend that time talking about my problems with my child. But it was good to have another person who was going through similar struggles to talk to and share experiences with. We anchored each other during the rough times.

And Meaghan’s Phenobarbital days were the roughest so far. Her wild behavior and poor coordination made continuing her therapy sessions futile. Her already finite attention span was exacerbated, so it was virtually impossible to engage her in any task. I canceled the sessions until after the holidays, hoping that by then her medication and blood levels would have adjusted to each other. Fortunately, it was the final week of her Toddler Program before the Christmas break, so she wouldn’t have to miss too much class time.

It was also fortunate that we had elected to stay home to celebrate Christmas this year. In previous years, we’d gone down to New York to spend the holidays with my parents, relatives and friends but, now that Meg was no longer a baby, Brian and I wanted her to experience Christmas morning at home. We envisioned her coming downstairs, her eyes widening big as saucers as she spotted the wondrous surprises Santa had brought her. I’d convinced myself that this Christmas, our first spent in our own home, was going to be a special one for us, and I looked forward to it with child-like anticipation.

I noticed the first red spots on Meaghan’s arm when I was giving her lunch on Christmas eve. I quickly grabbed her other arm and inspected it. More spots. They were everywhere. They covered her arms, legs, chest and back. Panicking, I grabbed hold of the phone. Miraculously, Dr. Schey was still at his office. They were just about to close up shop for the holidays, but they said I could bring Meg in and the doctor would take a quick look at her. I bundled her up and we rushed over.

“I can’t say for certain whether it is or isn’t chicken pox,” Dr. Schey temporized. “Children this age are prone to any number of similar rashes. Since the spots don’t appear to be bothering her, why don’t we wait and see what happens overnight. You can reach me through my service in the morning if the rash worsens or a fever develops,” he said kindly.

We wished each other a “Merry Christmas,” and I brought Meaghan home, unsure what to do next. We were supposed to go to my mother-in-law’s that evening to exchange presents, but I didn’t dare expose Brian’s whole family to the pox, if that’s what it turned out to be. I called Marie to cancel, but she insisted we stop by anyway. We did so early and briefly.

With Meg so spotted and wired on Phenobarb, it was difficult to get into the holiday spirit, but we did our best. After putting her to bed, Brian and I carefully arranged all her presents under the tree and around the living room. Satisfied that we had done Santa proud, we wearily trudged off to bed.

Our dreams of a picture perfect morning were dashed when Brian awoke with a terrible case of the stomach flu. Meggie shuffled down the stairs around eight o’clock with more spots than ever and, when she caught sight of Santa’s largesse, stopped dead in her tracks and began to whimper.

She did eventually show a glimmer of interest in one or two toys, but I couldn’t get her to settle down long enough to actually open or play with anything. She preferred to careen around the room, clutching one small Fisher-Price jeep (a component of a larger zoo set) in her hand.

I myself had little enthusiasm for unwrapping presents, so I put them aside until Brian felt better. Chiding myself for letting my hopes get unrealistically high, I put the turkey I had planned to cook back in the refrigerator, and had myself a good, long cry.

The next day the world brightened. Brian felt much better and Meggie’s spots all disappeared, proving the doctor’s hunch right. She hadn’t had chicken pox after all.

On Monday, December 28th, I brought her up to NSCH for some blood work. Waiting with Meaghan for any kind of appointment was an ordeal. How I envied other mothers who could sit calmly perusing magazines while their children sat compliantly by their side or played contentedly at their feet. Not so Meggie. She was a child on the go, bounding up and down the hospital corridor, ducking in and out of offices along the way. If I tried to restrain her she would tantrum, so I was left with little choice but to follow her about in a damage control capacity.

I was sure everyone wondered what on earth my problem was that I couldn’t control a two-year-old, but I hadn’t the energy to explain or make excuses. I just swallowed my pride and prayed for our name to be called. On this particular occasion, I prayed as well that the blood tests would show that Meg’s phenobarb level was excessive, as I didn’t know how much more of this I could take.

My prayers were answered. The tests revealed that Meg had way too much medication in her system, and I was given the go ahead to lower her dosage immediately. I hoped this would calm her down.

It did. In fact, she calmed down so much that I began to worry about her. She slept late into the morning, and even then I had difficulty rousing her. When she was up and about she was in pretty good spirits, but she was extremely lethargic. She would sit with me calmly and let me read to her for extended periods, which was totally out of character, or she would sit quietly on the floor repeatedly taking off and putting on her shoes and socks.

This preoccupation with her feet had replaced her hair pulling fetish for the time being. I knew that it probably wasn’t a good idea to allow her to engage in any repetitive behavior, but this shoe thing seemed harmless enough. She was just practicing dressing herself, I rationalized. After two tumultuous weeks of having Meg tear about the place like a wild woman, I welcomed any semblance of tranquility.

Brian and I elected to stay home on New Year’s Eve, to usher in the New Year quietly, comfortably and early. Neither of us saw any reason to wait until midnight to toast to a better 1988, so at around ten thirty Brian went to pour us each a glass of champagne, while I went to check on our sleeping daughter.

“Brian, Meaghan’s burning up!” I called down from her bedroom. When I lifted her out of the crib, she began to moan softly. “Brian,” I called again, beginning to panic.

He arrived at my side and took charge. “I’ll hold her. You go get some Tylenol,” he said.

“Should I run a bath to try to cool her down?” I asked on the run, frantically trying to recall whether it was luke warm or cool water, or was it rubbing alcohol, that the experts recommended now.

“I’ll use a washcloth on her. You just get the Tylenol.” He was getting impatient with my dilly-dallying.

I hurried downstairs, returning with a bottle of children's Tylenol and a spoon. “Here, honey, take this. You’ll feel better,” I coaxed, bringing a spoonful to her lips.

Meg wouldn’t open her mouth to take it, so I tried prying her lips open with the spoon and forcing the medicine in. She spit it back out. By this time she’d turned devilishly red and was starting to shake.

“She won’t take it,” I stated the obvious. “And we can’t bother Dr. Schey on New Years Eve.” Were we doomed to have a crisis on the eve of every holiday?

“I’ll call the hospital and tell them we’re bringing her in,” Brian said.

While he made the call, I bundled up my sweltering child and ran her out to the car. Brian followed and got in behind the wheel. The drive to the hospital took at least twenty minutes. I prayed Meaghan’s shivering wouldn’t turn into full blown convulsions before we arrived.

When we got there we rushed her into emergency and, as expected, were told to wait. Fortunately, it being near midnight on New Years Eve, we didn’t have a lot of crisis company. Within ten minutes we were ushered into an examining room. The doctor on duty came in and, after inquiring into the reason for our being there, located a thermometer and took Meaghan’s temperature. It was 105 degrees!

“She won’t take any Tylenol,” I explained quickly, lest he question our competence in attempting to problem solve ourselves.

He went and got a few chewables and asked Meggie to take them. She eyed them skeptically but, as if to prove me wrong, did as the doctor ordered. I collapsed into a chair.

The doctor examined her eyes, ears, nose and throat. There was nothing of a bacterial nature wrong with her. He examined her chest. It was not congested. “Let’s wait and see if her fever breaks,” he said, ducking out of the room.

Brian and I looked at each other, feeling a bit foolish.

I glanced at the clock. “Happy New Year!” I said.

“Happy New Year,” he smiled tiredly over at me. So much for our plans to have a quiet, restful evening at home. So much for our luck changing for the better. So much for the champagne going flat in our fluted glasses at home on the kitchen counter.

Meggie’s fever went down that night, so we were able to bring her home. But several hours later she was burning up again. She ended up spiking a fever of 105 or 106 degrees every four hours for four days and nights. We gave up on the oral medicine and switched to suppositories, as she wouldn’t eat anything and drank very little. The only thing we struggled to get her to

swallow on a semi-consistent basis, because we had no choice in the matter, was her Phenobarbital. So for five days Meg existed on a diet of Tylenol, Phenobarbital and water, a nutritionally delinquent menu if ever there was one.

Along with having no appetite Meg had no energy and no strength to get up and move around. In the few hours between her bouts with high fever, when the Tylenol was working, she would lie in our arms or rest near us with glazed eyes and deathly pale skin, drifting in and out of sleep. It was hard to believe that this was the same child who only a week earlier had been a holy terror.

I was beginning to fear for her life, and Dr. Schey was on the verge of admitting her into the hospital for intravenous food and fluids, when Meaghan’s fever finally broke on the morning of the fifth day. Her skin felt cool to my touch and her eyes had a brightness I hadn’t seen in days but, as I lifted her out of her crib, I was struck by how frail she felt. She wasn’t just skinny, she was borderline emaciated. It took three more days for her appetite to return to normal, but she remained weak and wobbly for several more.

When I was satisfied that her health and energy had returned sufficiently, I allowed Meg to resume her weekly toddler class and therapy schedule. So far the New Year wasn’t holding much promise of any speedy developmental headway, but Meg did thrill me by finally calling me “mama.”

I thought I was dreaming when I first heard the little voice in the middle of the night. It sounded like someone was saying “mama.” I shook myself awake and listened carefully. It was definitely “mama,” and it was coming from my daughter’s room. Could Meaghan actually be calling me? I jumped out of bed and hurried to her room fearful that she’d suffered a relapse. But when I turned on the light and peered anxiously down at her, she smiled angelically back up at me.

“Mama,” she repeated, very pleased with herself.

“Yes, Mama’s here,” I said, as tears filled my eyes. “You called and I came. Do you want anything, sweetheart?”

She just smiled, so I tucked her back under the covers and told her to try to go back to sleep.

But she didn’t want to sleep. Having discovered that she could summon me to her side merely by saying “mama,” she was going to keep saying it. And I was going to keep rushing to her side.

I must have gotten up to respond to my name twenty five times that night, but I didn’t dare tell her to stop. Nor did I dare not appear before her when she called out to me. I was afraid she might stop calling. I had waited a long time to hear my little girl call me “mama,” and exhaustion was a small price to pay for the gift of love and trust she had finally given me.

Meggie, Age 2 Christmas Morning. I finally coaxed her onto the ridey toy, but as you can see she is only interested in the Fisher Price Jeep. She has totally

tuned out all the other toys in the room around her.

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Chapter Six

With a Grain of Salt

Although Meaghan was mellower on the lowered dose of Phenobarbital, her poor attention was still exacerbated. I knew it was critical to control her seizures but felt there had to be a drug with less aversive side effects. Dr. Oulette's carelessness and cavalier attitude still rankled, so I asked Dr. Schey to recommend another neurologist. He suggested Dr. Karl Kuban at Childrens' Hospital in Boston, and we took Meggie to see him in mid-January.

We'd sent her EEG report on ahead of us, so the doctor was able to confirm the accuracy of the parietal and temporal lobe spike activity diagnosis. After taking a brief history from us, he examined Meggie thoroughly and seemed satisfied that there were no other gross neurological abnormalities.

While he was jotting down some notes, Brian cleared his throat. "Do you see many children like Meaghan in your practice, doctor? And if so, based on what you've seen with the others, what is our daughter's developmental prognosis?"

Dr. Kuban stopped scribbling and sat back in his chair, steepling his fingers. "That's a tough question to answer," he began. "I've seen other children with partial complex seizures like Meaghan, and others with developmental delay, but I can't say that Meaghan fits into any particular pattern. In many ways she's a unique case, and she's still very young. Her prognosis will depend to a large extent on how she adjusts to new medication and where she goes from here. I'd say right now she is somewhere between six to nine months behind where she should be, and only time will tell whether she'll be able to make up that deficit or whether she'll fall farther behind. I think if you find the right school program for her, the odds are good that she'll continue to make good progress."

This wasn't quite the assurance we were seeking, but at least it wasn't discouraging. He was right; Meg wasn't even three yet. She hadn't yet had

the benefit of daily, year-round schooling. Who could say what kind of difference this would make?

We moved on to discuss medication. After listening to our harrowing account of Meg's reaction to Phenobarbital, he advised switching her to Tegretol, which he said might make her a bit drowsy at first but shouldn't otherwise undermine her attention. We readily agreed to the switch.

"I have one final question, doctor," I said, as we rose to leave. "Do you have any idea what might have caused Meaghan's problems?"

My over-riding fear was that I might have been in some way responsible. I thought I'd done everything by the book during my pregnancy. I'd quit smoking and avoided alcohol. I'd eaten well and taken prenatal vitamins. I'd stayed healthy and exercised moderately. But I'd had a prolonged eighteen hour labor, during which I'd been given morphine (so that I'd rest through the night) and an excess of anesthesia when the first and second epidural shots had not numbed my right side prior to delivery. I worried that all this medication might have adversely affected Meggie in my womb, but Dr. Kuban didn't think so.

"I suspect her problems have a prenatal basis," he ventured. "Most likely some form of cerebral dysgenesis occurring when she was a fetus."

"Cerebral dysgenesis?" I repeated, not liking the sound of it.

"The best way to describe it would be to compare it to a small mole or pimple we might have on our skin, only in Meaghan's case, the mole or microscopic abnormality formed inside her brain, probably during the first few months of gestation."

"So there was nothing I could have done to prevent it."

"I doubt it," he said. "If you'd like, I'll review Meaghan's CAT scan films to make sure."

"We'd appreciate that," Brian said.

"In the meantime," the doctor concluded, standing and walking us to the door, "let's get Meaghan started on Tegretol and see how she does. Give me a call if you have any questions or notice any further evidence of seizure activity."

"I will, doctor," I assured him. "Thank you."

Brian and I left the office feeling pretty optimistic. I was pleased that we were going to be able to get Meg off Phenobarb, but disappointed that the weaning process couldn't begin right away. The protocol Dr. Kuban recommended for switching medicines had us keeping her on her full dose of phenobarb for three more weeks until we initiated and gradually increased her Tetregol dosage by 25 mg increments to 250 mg and stabilized her on that dosage. Only then could we begin to taper off the Phenobarb, and this had to be done gradually as well. If all went well, we were talking at least six weeks before the drug would be completely out of her system.

Six weeks. I did some quick calculating. It was mid-January. With luck she would be Phenobarb-free by March 1st. At least she would be fully weaned off the drug by the time she entered school, but she would still be on a full dose of both medications for all her pre-school evaluations, which were scheduled for the upcoming weeks. This hardly boded well for her performance. I just hoped it wouldn't impact her chances of getting into the best school I could find for her.

Finding the right school for Meaghan had become, by this point, a foremost concern of mine. As a relative newcomer to this special education business, I had no idea what kind of schools were out there. Brian and I had assumed that Meggie would attend the public schools in our town. In fact, we had moved to Lynnfield in large part because of the excellent reputation of its school system. It was still our hope that Meggie would be able to attend elementary school in town, but kindergarten was two and a half years away.

According to Massachusetts state law, Chapter 766, any special needs child is entitled to free schooling from the age of three until he or she turns twenty two. In order to start this process, parents must first make their local school system aware that they have a child requiring specialized schooling. To this end, I had contacted the Director of Special Education in out town, Denise Christian. I arranged a meeting, brought in copies of all Meg's evaluations to date and reported that she was scheduled for another round in early February. Ms. Christian scanned the paperwork and said that it all looked in order, but that she would await the report of the school psychologist, Dr. Beverly Hegedus, before considering placement options for Meaghan.

Our "interview" with Dr. Hegedus was an unmitigated disaster. Meg was never at her best with strangers. Nor was she at her best when she felt pressured to perform. From the moment we entered the small evaluation room until the moment we left, she was intractable. Needless to say she

didn't display any of her newly acquired skills. Instead she scampered about, toppling boxes off shelves, trying to eat the crayons she was supposed to draw with and scattering the blocks she was supposed to build with onto the floor. She didn't respond to her name, nor did she use any of her words or signs. But she did giggle and her eyes shined with a mad, mischievous glee over the mayhem she was causing. She looked certifiable to me, and I'm sure Dr. Hegedus thought likewise.

I apologized lamely, saying Meaghan was not always like this.

Dr. Hegedus said she understood, but I doubted that she did. She undoubtedly thought that I was deluding myself about my child's capabilities; that I hadn't yet faced up to the full extent of Meaghan's handicap. In fact, I knew my daughter better than any expert could or ever would. I knew she was a slow learner; that her development was atypical; that she had severe problems with attention and that her behavior was unpredictable at best.

But Meaghan had her own brand of intelligence. I didn't need any formalized test to tell me this. I could read it in her eyes, and I could tell by the clever way she teased me and the often ingenious testing antics she pulled with others. Meaghan was Meaghan. She had a unique mind and her own way of doing things. She also had a very low anxiety threshold, and strange people in unfamiliar settings triggered that anxiety, causing her to act out.

All this I understood. So while it saddened me to watch my daughter behaving crazily when I wanted her to be at her best, I knew that it couldn't be helped. The evaluations were a necessary chore. They simply had to be endured so that Meggie could get the help she needed.

This hard won insight helped me survive the first two days of February, when Meg underwent her second DEC evaluation. Actually, the first afternoon went fairly well, as she was scheduled only for audiological testing and physical therapy. But the second morning was one I had to gird myself in my most emotionally resilient armor to get through. In the space of one hour, I was told by the mental health examiner that Meaghan was autistic, albeit on the mild to moderate end of the spectrum, and by the developmental evaluator that I might well hear the word "retarded" down the line.

Was I heart-broker? Yes. Was I shocked? A bit. Was I defeated? No. My daughter was my child first and foremost, and that wasn't going to change regardless of what label the "experts" tagged her with.

It was some consolation that those who knew Meggie best had a bit more encouraging outlook. Dottie Barry's speech report, based on six months of weekly therapy sessions, was quite heartening. She acknowledged all of Meg's expressive language gains, her consistent use of gestures, signs, vocalizations and verbalizations, as well as her improved interactive and imitative skills.

Meg's teachers and therapists in her Early Intervention Program were likewise upbeat in writing of her cognitive gains in the areas of means-end, cause and effect and imitation; of her more purposeful play behaviors and of her overall positive adjustment to the classroom routine.

But the common theme that ran through all the evaluations -- good and bad -- was Meaghan's fleeting attention span, her easy distractibility and low frustration level. There wasn't a single report that didn't mention what was summed up as Meg's "significant difficulties focusing and sustaining attention to tasks."

All the evaluators were also consistent -- and I felt accurate -- in their recommendations of the type of school program that would best suit Meaghan's needs. A five day, twelve month program in a small, highly structured, behavior-oriented, language and cognitive based preschool classroom. The student teacher ratio should be no greater than two to one, and the environment should be free of extraneous stimuli.

In addition it was recommended that Meaghan receive occupational therapy, with emphasis on sensory integrative techniques, one to two times a week, speech and language therapy two to three times a week and physical therapy (for tightness in her legs and hamstrings) once a month.

A tall order! Would I be able to find -- and get Meaghan into -- a program that offered such an intensive, comprehensive range of services? I had no idea. But I did know that my daughter's prospects for the future depended upon it.

Needless to say, Meggie didn't share my worries about her future.

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Chapter Seven

Knowing Right from Wrong

I began my search at the end of January. Our school system had assigned a liaison, Judy DeLucia, the job of shepherding me around to several local programs that our Sped Director had in mind for Meaghan. The first preschool I visited was a collaborative classroom (meaning that several neighboring towns contributed to its funding) in the nearby town of Reading.

There were four or five children in this particular class, evidencing a variety of handicaps of varying degrees of severity. Two teachers were in charge. One was working with a down syndrome boy on sorting, the other was walking a child wearing a helmet around the room. I don’t recall exactly what the other kids were doing, but they weren’t doing much.

I tried to picture Meaghan sitting placidly in her chair, awaiting her turn for attention. I couldn’t. She would be all over the place. I asked one of the teachers what she did when a child acted out. She said they didn’t really have too many behavioral problems in the class. It was on the tip of my tongue to ask her if she wanted some, but I said nothing. I’d seen enough.

When we got back out to the car, Judy asked me what I thought. I told her that I didn’t think the class was appropriate for Meaghan. She told me there was another collaborative classroom -- an integrated one -- in Stoneham that she thought would be perfect. I said it sounded promising.

“What about the May Center?” I asked, when she failed to mention any other options. I’d heard Meg’s therapists and several parents talking about this recently established, behavior-based school for autistic children, and I was curious about it.

“We can take a look at the May Center if you want,” Judy answered agreeably, “but I think you’ll like the Stoneham program better.” She hesitated. “You’d have to do a home program with Meaghan if she went to the May and, according to a Lynnfield mother who went through it with her

son last year, it’s a brute. She was totally exhausted every day.” She eyed me conspiratorially, “I really wouldn’t recommend it.”

“I think I’d like to see it anyway,” I said.

A week later I got my wish as Judy and I were ushered into a May Center classroom. It was set up much like any other preschool classroom, only with less clutter and fewer kids. There were three or four teachers working with six or eight kids, most of whom appeared surprisingly normal. I’d never met a child with autism, but I was familiar with the stereotype from TV shows and movies. He was silent, withdrawn, glassy-eyed, often isolated in a corner and rocking back and forth or flapping his arms or engaging in some other bizarre ritual. I saw no such child in any of the three classrooms we visited.

I did see some attention issues and behavior problems, however, and I observed carefully how the teachers dealt with them. Their approach was to ignore the negative and reward the positive, which I learned was the basis of behavior modification. I was impressed with how well the kids responded to the controlled discipline and step-by-step teaching, and I felt Meaghan would do likewise.

As we were leaving I asked Glynnis, the young woman who took us around, how many children they accepted into each classroom. She said no more than eight. At present, she said, there was only one opening in the preschool. After that opening was filled, applicants would have to go on a waiting list.

Judy and I thanked her and took our leave.

On the ride home I sensed that Judy was mildly miffed that I was so impressed with this school that hadn’t, after all, been on our Sped Director’s approved list.

“You really should wait and see the Stoneham school before you make any decisions,” she said when she dropped me off. “And then we have to have a TEAM meeting before we can approve any school.”

I wasn’t exactly sure what went on at a TEAM meeting, other than reviewing placement options and with luck, formalizing one. But I did know that I wasn’t going to wait around for anyone’s approval to do what I knew was right for my daughter. As soon as I got in the door, I rushed to the phone and called the May Center to arrange a screening for Meaghan. If there was only one opening left in their preschool, I was going to do my utmost to see that Meg got it. I didn’t like having to go behind Judy’s back but, the way I

saw it, she wasn’t serving our best interest by stalling.

Glynnis was pleased to hear from me. In fact, she said that she had expected my call, and that it was perfectly okay for me to arrange a screening without the consent of my school system (which eased my conscience a bit). I went ahead and did so for the following week.

A few days later I went with Judy to take a look at the Stoneham school. Although I felt quite certain that the May Center was the right school for Meaghan, I wasn’t about to rule out any options sight unseen. Who knew but what I might find this program to be every bit as “perfect” as Judy kept promising.

It was -- absolutely perfect -- if one was trying to place a child whose needs were less special than mine. The preschool consisted of two classrooms of very active kids. There were a few special needs children mixed in, and I gathered that a teacher or two stepped in and worked with them individually during the day. But, for the most part, the children were left to do pretty much as they pleased at various play stations set up within the rooms.

I looked around in dismay. There were shelves full of blocks and toys, tables for sand and play dough play, easels for painting and bins spilling over with arts and crafts paraphernalia. Pictures the children had created were hanging over every inch of wall space. The atmosphere was one of controlled chaos and organized clutter, hardly optimal for a child like mine who required a “distraction free” environment.

Nor was the lack of structure reassuring. No doubt Meg would have a ball ripping the pictures off the walls and dumping the enticing containers of toys and tools onto the floor, but she’d be intractable, unteachable. Idealistically, I longed for her to be able to cope in such an environment, to have normal kids as role models, but realistically, I knew that she would be far too over-stimulated in this classroom to benefit from the integration. It was clear to me, even as a novice, that my child would learn nothing here, and I wondered at the lack of serious consideration my town had given to the type of child they were trying to place.

I said as much to Judy as we left the classroom.

“So, you’re saying that you want Meaghan to go to the May Center,” she surmised.

“Yes, I think it’s the only appropriate placement for her right now,” I confirmed.

She sighed. “Well, I’ll talk it over with Denise, and we’ll see what happens at the TEAM meeting.”

Reluctantly, I owned up to the fact that I had already arranged a screening, just in case. She was not pleased, but what could she do? I was the parent, after all, and she was supposed to abide by my wishes. Whether the school board would abide by my wishes and fund a costly private placement remained to be seen.

Whether the May Center would accept Meaghan also remained to be seen. I was a bit leery that, because we lacked a definitive diagnosis of autism, they might not find her “appropriate.” But Stephen Anderson, the director of the school, couldn’t have been more welcoming when Brian and I brought Meg in for her screening. While Glynnis conducted the evaluation, Stephen put us at our ease by saying that Meg appeared to fit the primary criteria for acceptance. “She’s cute,” he said. He then briefly described the school to us, explaining the necessity for the home program as a prerequisite for school attendance.

I assured him that I was willing to participate fully in such a program. “Would we be able to start right away, if we get the school board’s approval?” I asked anxiously.

“We have one opening in the preschool, and we’ll reserve it for Meaghan if she’s approved,” Stephen said, smiling at my exaggerated look of relief. “Actually, it’s a good thing you got in today. We have a lot of screenings scheduled for the next several weeks, and any children we accept from now on will have to be placed on a waiting list.”

A smiling Glynnis returned with Meggie and told us that not only was Meg appropriate, but that she would be willing to attend our TEAM meeting and speak on her behalf.

We thanked them both profusely and took our leave.

D-Day arrived.

All of Meg’s formidable TEAM (every teacher and therapist who had ever worked with her) showed up for the meeting and gave clear and convincing presentations. All concurred that a highly structured, behavior-oriented classroom, which described the May Center to a tee, was the only way to go. And, as Lynnfield hadn’t been able to come up with an alternative school that offered what the May Center could, there was little room for debate.

Glynnis sealed the deal when she said that the school was prepared to offer Meaghan immediate placement.

If our SPED director was annoyed at my presumption in going ahead and taking care of the formalities, she couldn’t quibble with the results. I frankly think she was relieved that the matter had been taken out of her hands. A tentative start up date of March 28th (Meg’s third birthday) was agreed upon by all parties, and the meeting adjourned on a positive note, with lots of hand shaking and well wishes.

With one month to go until the home program would get underway, I set about tying up loose ends.

The Phenobarb was finally out of Meg’s system, so she was less hyper and a bit more cooperative and attentive, which boded well for her schooling. But Brian and I were still concerned about her right eye turning in. Having heard that there was a limited window of opportunity for correcting crossed-eyes, we sought the opinion of a Boston-based ophthalmologist, Dr. Fraoli. He claimed that the eye-turn was attributable to palsy or weakness of the forth optic nerve; damage that might have been sustained during Meg’s forceps delivery. He said her head cocking helped her to compensate for this weakness and to integrate the images she was seeing. The good news was that the problem was unlikely to get any worse and that, overall, Meaghan’s vision appeared to be fine.

Her health and physical condition were also fine. In fact, she was growing like a weed. When I brought her to Dr. Schey for her three year check-up, she turned out to be in the ninety-fifth percentile for height and the seventy-fifth for weight. Whatever was ailing her apparently wasn’t affecting her growth.

Meg and I kept up with her schedule of classes and therapy sessions until mid-March and then began a heartfelt round of good-byes. On her last day of toddler class, Meg’s teachers presented her with a birthday crown and diploma, sending her off with hugs and fond wishes for “happy times” in her “big girl” school.

With good-byes all said and two weeks to go before the start-up of our home program, I was feeling a bit adrift. Accustomed as I was to having some place to go and something to do with Meggie every day, I wasn’t sure how to productively take up the slack. Fortunately, Meg’s occupational therapist up at NSCH had agreed to keep up her weekly sessions until Meg started full day school, affording us one very important ongoing activity.

For her third birthday, I presented Meg with a pint sized table and chair set,

in preparation for our home program, along with several other dolls and toys. She delighted in ripping the wrapping paper off her presents; the paper, boxes and bows holding far greater appeal for her than the gifts inside. We celebrated with several family members, and Meg hummed along gamely to our rendition of “Happy Birthday.” She blew out her three candles, gobbled the frosting off her cake and enjoyed having the company, although the point of the festivities clearly eluded her.

On Easter Sunday I went to church and prayed that I’d be up to the challenge of teaching my young daughter, and that she’d be up to the challenge of learning. As wary as I was of the work involved, I was very eager to begin.

Meggie the Movie Star.

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What’s Going On?

EARLY LEARNING AND EDUCATION

What neurological factors influence early learning in both typical and autistic children?

As infants and young children explore the world and discover the parts of their bodies, the sensory and motor impulses flowing through their immature neurons cause axons to sprout and branch out toward the dendrites of other neurons.30 Eventually, these axons and dendrites link up to form functional connections. This connection forming process is rapid and on-going during a child’s early years.

Every sensori-motor experience stimulates neurons to connect with each other. But if early sensori-motor experience is lacking or not being properly registered, due to poor modulation or integration, this connection forming mechanism cannot operate efficiently to form and hard-wire crucial neural connections. Fewer connections are made to key processing points and many of those that are made are not working in an effective way.

The problem is not that autistic brains are lacking in the neurons necessary to make connections. In fact, babies who turn out to have autism are born with approximately the same number of neurons as typically developing children. Some studies indicate they may even have slightly more neurons in some regions of their brains. The problem is that many of these neurons do not thrive, do not sprout as many fibers or as many complex connections as the neurons of other children.

Is the core neural connection forming problem in autism a prenatal or postnatal occurrence, and what might cause it?

If the problem in autism is pre-natal in origin, as most experts have theorized, than it most likely occurs between the eighth and sixteenth week of gestation, when the fetal brain is growing at a remarkable rate and neurons are in flux, arranging and rearranging themselves before finally

taking up their places in developing structures.31 If this neural migration process is interrupted, or if too many of too few neurons migrate to certain locations, this could account for the formation of an abnormal connection mechanism.

On the other hand, if the core problem occurs or is compounded after birth, there could be a host of explanations. Assuming children who turn out to have autism are exposed to the same sensory stimulation as their non-autistic peers, either something impedes these sensory impulses from triggering the growth of neuronal fibers -- or the fibers form but the synapses don’t -- or the synapses form but fade away due to disuse.

Either one or all of these scenarios could account for a shortage of connections to key processing points. Also, failure to register, modulate or integrate sensory input (due to some vestibular or thalamic dysfunction) could impede the connection forming process, particularly to the areas of association which are crucial in assigning meaning to sensation.

As far as education and autism, is earlier necessarily better?

The neurological reasoning behind the rush to educate is a valid one. The premise is that, if you get to a child early enough, it’s possible to form new connections or to transfer the functions of parts of the brain that aren’t working properly to parts of the brain that are fully functional. It’s possible to retrain undamaged neural circuits to take on new roles, especially in a child’s early years while his brain circuitry is still in its formative stage.

Though neurologically sound and encouraging (especially to the parent of a child diagnosed with “funny wiring”) this idea of being able to rewire faulty circuitry has its limitations. For one thing, messages transferred through re-routed channels are unlikely to be processed by the brain as smoothly and efficiently as those flowing through properly formed and well organized neural connections.32

For another, if the condition of autism is caused by some defect in the connection forming mechanism, and if this defect is exacerbated by an imbalance in one or more brain chemicals than, unless or until this core defect can be corrected, any new connections that are formed might well be subject to a degree of the same neurological damage as their predecessors.

This is not to say that new connections or synapses can’t form in autistic brains. They definitely can -- at any age -- which is why constant stimulation is so important. But, if we assume a chemical deficiency or imbalance in the connection forming process, than we must assume that young children with autism have fewer functional synapses to work with

early on, and that the formation of new connections and interconnections is going to take some time. Certainly the learning necessary to form the all important association tract synapses is bound to be a time consuming business for children who are constrained by being unable to focus and attend to more than one thing at a time.

Actually, the degree and type of help an autistic child gets probably has a greater bearing on positive outcome than the specific timing of that help, although I will not quarrel with the fact that sooner is better as far as getting started. Earlier is better up to the point that basic skills have to be combined into complex, coordinated actions or interactive thoughts and abilities. The more complex learning is, the more neural organization, cooperation and communication it requires, the longer it will take for children with serious processing deficits to form and hardwire the necessary interconnections.

Simply put, experience is darn hard to come by for autistic children and, because it takes them significantly longer to accumulate and generalize knowledge and to incorporate it into the broader context of experience, I believe it’s unreasonable to expect too much too soon.

How do the special needs of autistic children differ from the norm in regard to early intervention?

The primary difference is in the intensity of the intervention that is needed, as few autistic children are able to keep themselves positively occupied for long. Thankfully, the days have passed when these seriously misunderstood children were regarded as “hopeless” and put away in institutions where so little was expected of them. The furious rocking, hand stimming and bizarre stereotypical behavior they often engaged in was, I believe, their way of coping with mind-rending sensory deprivation.

Children with autism should never be underestimated, nor should they ever be left too long to their own devices. “When left alone,” Temple Grandin writes, “I would often space out and become hypnotized.”33

Just because they may have no desire to do things and may have no fun doing them at first, doesn’t mean they shouldn’t be made to do them. Those who care for autistic children must constantly challenge, stimulate, foist learning upon them, so that the circuitry in their brains continues to develop almost in spite of itself. The more education and experience autistic children get -- at any age -- the better off they will be.

What type of early education is most effective for young autistic children?

The only way to break through the barriers of the processing limitations that cripple the development of the autistic brain is to constantly introduce new activities that will stimulate the formation of synapses and facilitate the brain’s ability to integrate and effectively use sensory input.34 This is the premise behind sensory integrative therapy, and I believe any educational or therapeutic program for autistic children worth its salt should include a sensory integrative or vestibular stimulation component, especially in the early childhood years.

The type of training an autistic child receives early on is very important in influencing how well he/she makes the adjustment to the education process. There majority of very young autistic children benefit significantly from behavioral modification training. A one-on-one or one-on-two component is also important in the preschool years, so that the instruction can be more intensive and individualized. A program that requires a child to constantly interact with his teacher, so that he cannot withdraw into his own world, is most effective.35

The easiest way for a child with autism to learn is through step-by-step, repetitive skill training. On the one hand, the more familiar a task is, the less the child will resist it. Also, from a neurological standpoint, the more a skill is repeated, the easier it becomes to internalize. The more a signal is sent, the stronger the travelling pulse along an axon, the greater the likelihood that it will make it across a synaptic gap.36

A repeated succession of nerve signals crossing a synapse activates that synapse, so that less neural energy is needed to carry out the process each time until a neural memory is formed. Each neural memory a child forms adds to his repertoire of perceptions or abilities and expands the communication network within his brain, making him more capable of learning.37

A home component too is a significant plus to any early education program because of the absolute need for consistency. All children, but particularly autistic children, need parents and teachers to set firm boundaries and to make clear expectations--and to stick by them. They must be able to depend on our consistency in the inconsistent world that confronts them daily.

What type of educational program is best for older autistic children?

First off, you must accept that no program or placement is probably going to be ideal. You will always have to weigh the pluses against the minuses. Bear in mind, however, that the foremost goal of any educational program should be for a child to attain self-confidence and independence. For this reason I

believe that the one-on-one teaching style, so effective in the preschool years, can become more of a hindrance than a help from the elementary years on up.

If we assume a fundamental problem with autism to be a lack of a sense of self, than any educational program that doesn’t succeed in fostering this, regardless of how much else the child may be learning, is not doing the most important job. Because children with autism have such a fragile grasp of who they are, what they feel and what they can do, they often have little or no basis for knowing what they think.

They generally have a low degree of confidence in their own minds, which is why it’s often so difficult for them to take the initiative. They feel safer following the lead of others, letting others do the thinking and planning for them. Although it is one of the hardest lessons for them to learn, children with autism must be taught to trust in themselves and in their abilities.

If a child is able to function independently in a public school setting, as many high-functioning PDD or Aspergers children are able to do, than mainstreaming is the way to go. If, on the other hand, a child requires intensive, individualized guidance just to get through a school day without incident, I question the merit of mainstreaming initiatives. Unless the child has made many friends and is having lots of social success, he/she might be better off in a private placement where style of learning is taken into consideration and the focus is on becoming more self-reliant.

It is important to know when to cut your losses. Autistic children are anything but predictable and consistent and certainly they are going to have their share of ‘bad’ days at any school, but when the bad days start outnumbering the good something is wrong. You are doing your child a serious disservice if you grow complacent with any educational placement. The school or classroom might be the finest of its kind in the area and might have been ideally suited to your child’s needs at the time of enrollment, but children’s needs change. If a program cannot adapt to or keep pace with these changing needs, or if too much staff reshuffling changes the caliber of the teaching or classroom management, it’s time to consider moving on.

Why does learning sometimes become easier as an autistic child gets older?

The older an autistic child gets, the more he or she is generally able to accommodate his or her brain’s sensory distortions and processing deficits, making learning easier. And the easier learning becomes, the more intricate the cerebral connection and interconnection system becomes, the more neural memories a child acquires.

Conversely, the more neural memories a child acquires, the more he is able to organize information into meaningful experience, the more he is able to learn and understand. Because it takes children with autism a longer time to build neural interconnections and memories, I believe it is unwise to put a time limit on their learning and development.

Improvement can only come when a child has had sufficient time to absorb and integrate experience with his/her slowly built up store of knowledge. Temple Grandin writes: “My life was a series of incremental steps...There was no single breakthrough that enabled me to adapt to autism...At age forty seven I (now) have a vast databank, but it has taken me years to build up my library of experiences and learn how to behave in an appropriate manner.”38

She says that for her every experience built upon the visual memories she carried from prior experiences, and in this way her world continued to grow. She claims that her ability to modify and build upon the visual images in her brain helped her to become less rigid in her thinking and to learn to generalize.39 She has been able to expand her thought process because she has been able to keep expanding the connection network in her brain through on-going education and experience.

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Chapter Eight

Coming on Cue

Stephen Anderson showed up promptly at eight thirty Monday morning, and a few minutes later, Ruth Kaplan, our home therapist, arrived. Steve made the introductions and the three of us chatted briefly about how we would schedule the sessions.

The May Center was going to provide fifteen hours of home training. It was up to Ruth and me to decide how we would apportion those hours each week. We quickly agreed on three hours, from nine until noon, Monday through Friday. Stephen then handed me a letter of agreement, which stipulated (among other things) that I would observe and participate in my child’s program one hundred percent of each therapy session, and that I agreed to conduct additional therapy sessions myself when Ruth wasn’t here. I agreed readily. I was anxious to get started, I told him.

“I’ll take that as a hint and be on my way,” Stephen said, smiling. “I’m leaving you in very good hands with Ruth here. She’s one of our best.”

Ruth blushed and grinned, shaking her head. I liked her right away. “Good bye, Steve,” she deadpanned.

After he left, Ruth and I sat down at the kitchen table, and she explained what we would be doing. We’d begin by base-lining Meaghan’s present skills and behaviors. This would take most of the week, she said, but it was important to measure exactly where Meg was now so we could chart her improvement as we went along. In addition to the skill testing, we would begin immediately addressing Meg’s behaviors.

“How do we do that?” I asked, all ears.

“Several ways,” Ruth answered, smiling. She was a good teacher. She knew what she was doing and was serious about explaining things to me, but she also had a lighter side and, I was to discover, a wonderful sense of humor. I

sensed that we would get along well.

“I have several handouts for you that will explain the behavior training we do in more detail, but the essence of it is to attend to or reward the positive and ignore the negative. I know this sounds pretty simplistic, but the key is consistency. If you are not consistent in attending and ignoring one hundred percent of the time, Meaghan will not respond positively to the training.”

“What exactly is attending?”

“Ah ha, I’m glad you asked that,” Ruth grinned, “because it brings me to several games we are going to play. The first one we call the Child’s Game, and there are a few, very specific rules,” she said, back to business.

“In this game, Meaghan chooses an activity. She can change activities as often as she likes and move about the house, but you are not to intervene in any way in what she chooses to do. Rather, you are to follow her lead, watch what she does and describe her actions to her in detail. Think of yourself as a sports commentator giving a play-by-play account of a game. You can participate in what she’s doing to the extent of handing her things, taking a turn or imitating her actions, but you must not ask any questions, give any prompts or otherwise attempt to direct or structure her play. You are to focus all your attention and comment exclusively on what Meaghan chooses to do.”

This sounded easy enough, giving Meg my undivided attention. But could I refrain from interfering? After a year of spending almost every waking moment trying to teach Meaghan, it was going to be hard to break the habit.

I tried it. I watched as Meaghan went over to her container of blocks and dumped them out on the floor. “Meggie is dumping the blocks,” I said. She looked at me, clearly expecting me to tell her to pick them up. I said nothing. Figuring she was home free, she picked up a block, eyed it and me, and threw it back down. “Meggie threw her block,” I said.

She regarded me strangely and then proceeded to sit down and take off her shoes and socks. “Meggie is taking off her shoes and socks,” I said. She put one sock back on. “Good putting your sock on, Meg,” I said, trying to put a positive spin on this first constructive thing she’d done.

She stood up, padded over to our kitchen cabinet and took out a box of crayons. She opened the box and emptied the crayons onto the floor. I dutifully supplied running commentary. After studying Ruth and me for a moment, Meg bent over, picked up a crayon and put it back in the box. “Good putting the crayon in the box,” I said. She smiled. She bent over to

pick up another, started to put it in the box, but then thought better of it. With a gleam in her eyes, she brought it to her mouth instead. I looked at Ruth in confusion. Was I to allow her to eat the crayon?

Ruth went over and took it out of Meaghan’s hand. “Game over,” she pronounced.

“Should I have told her to stop it?” I asked.

“Would she have?”

“I’m not sure,” I allowed.

“I think it’s time to teach compliance,” she replied. “Which brings us to what we like to call the Parent’s Game.”

“Don’t tell me,” I said, playing along, “this time I get to choose an activity, right?”

“That’s right,” she confirmed. “Only it doesn’t have to be an activity; it could be anything you want Meaghan to do. Pick up the crayons, put her socks and shoes on, sit down in a chair... anything. The important thing to remember is that you only give one command at a time, and you make it clear and concise. Don’t phrase it as a question. Don’t say, for instance, ‘Meggie, would you pick up the crayons?’ This gives her an option to refuse. Simply say, ‘pick up the crayons’ and say it only once.”

“And if she doesn’t do what I ask?”

“You give her about five seconds to comply. If she doesn’t respond or if she responds incorrectly, you prompt the correct way to do it. You put your hand over hers and model what you want her to do, saying, “this is picking up the crayons.” Then you give the command again. If she still doesn’t comply, you repeat the modeling procedure and continue giving the command until she does what you ask. When she does comply, immediately praise her and give her lots of positive attention. You’re teaching her that compliance is good, and that she’ll be rewarded for it.”

“What if she fusses?” I asked. “Meaghan gets upset easily, especially when she doesn’t want to do something.”

“We call it tantruming,” Ruth said, “and you have to learn to ignore it, as you do any undesirable or inappropriate behavior.” Remember, reward the positive and ignore the negative.”

“Sometimes that’s easier said than done,” I remarked glumly.

“I know,” Ruth responded with an understanding smile. “But ignoring is very important, and you must use it every time Meaghan misbehaves, otherwise you’re giving her mixed signals. Above all, it must be clear to her that when she’s good she gets lots of your attention and when she’s bad she gets no attention whatsoever. You must give her no eye contact, turn your back on her if you have to. You must say nothing to her, and you must not touch her or let her touch you. No physical contact.”

This sounded awfully cruel to me, but I supposed exaggerated ignoring was sometimes necessary to make disapproval clear.

“When Meaghan stops tantruming, you stop ignoring,” Ruth resumed. “You can give her hugs and kisses and praise her for being quiet. She must comply to any command you give her quietly -- without a fuss -- or her compliance doesn’t count.”

“Oh Lord,” I moaned, shaking my head.

“Don’t worry,” she reassured. “She’ll probably tantrum a long time initially but, once she understands the rules and knows what you expect of her, she’ll do what you ask her to do quickly and quietly.”

“God willing,” I said. I had my doubts.

“The most important thing to remember about the Parent’s Game,” Ruth went on, “is that you must never give a command unless you’re prepared to follow through with this whole procedure. So you might want to think twice about what you tell Meaghan to do. Your husband must be familiar with the procedure as well and be willing to carry it out. Consistency is essential if Meaghan is going to learn to generalize compliance, otherwise she’ll just obey you and me. Actually, she’ll probably obey you before she’ll obey me, since she doesn’t know me yet.”

She bit her lower lip and glanced at her watch. “I think there’s time, let’s give it a try. Why don’t you call Meaghan over to you.”

“Meggie, come to Mommy,” I called. She hesitated, no doubt waiting for me to call her again as I usually did, but then she sauntered over to me. “That’s my girl,” I said, giving her a big hug and ruffling her hair.

Ruth crossed to the other side of the room. “Meaghan, come here,” she said, firmly but not sternly.

Meaghan didn’t budge. She frowned, not sure what to make of this stranger ordering her about.

Ruth walked across the room, took Meaghan’s hand and walked her to where she had been standing. She then returned Meg to her original spot and went back across the room.

“Meaghan, come here!” she commanded, her face an impassive mask.

Again Meaghan didn’t budge.

Ruth came and got her, brought her across the room and then returned her, but not as far away from where she stood this time.

“Come here!” she said again.

At this point Meg started to whimper. She knew she should go to Ruth, but she was frightened of her. She took a tentative step and then stopped. Ruth repeated the correction.

“Meaghan, come here!” she reiterated.

Meaghan’s whimpering turned to pathetic sobbing. “Mama,” she cried, beseeching me for help.

“Don’t look at her,” Ruth cautioned as she repeated the correction once again, placing Meg even closer to her this time.

It broke my heart, but I averted my head, ignoring the plaintive cries and pain-filled eyes.

“Come here!” Ruth said once again.

Meaghan’s sobbing had escalated into full blown tantruming, and in between each sob she cried out to me. It was all I could do not to break down myself, but I didn’t acknowledge her misery.

Ruth reached out and pulled Meaghan over to her, and then she gently pushed her back a few feet.

“Meaghan, come here!” she repeated for the umpteenth time.

This time Meaghan complied. She took one and then two brave little steps closer to Ruth, sobbing hysterically as she did so.

“That’s good coming,” Ruth said when Meg reached her, “but you have to do it quietly.” She returned Meaghan to her spot.

“Come here, Meaghan,” she said.

Again Meg inched over to her, ever so slowly and cautiously, but she was still tantruming.

“You need to come quietly, Meaghan,” Ruth said.

It would take another twenty minutes before Meg got herself under control enough to walk to her tormenter relatively quietly, but when she did, Ruth’s whole demeanor changed. She beamed down at Meaghan as if she had rushed to her unreservedly, and enthused, “that’s great, Meaghan, you came to me!” She picked her up and spun her around, and a tentative smile broke through the tears on my daughter’s ravaged little face.

“Next time she’ll come a lot quicker,” Ruth assured me over her shoulder. “The first time is always the hardest because the children don’t know me yet, so I have to break down the barriers. But she has to learn to trust and respond to me as well as she trusts and responds to you for this program to work.” She turned her attention to Meg, tousling her hair. “See Meggie, I’m really not the ogre you thought I was.”

Meggie cocked her head, eyeing her skeptically.

Our first session was over. Both Meggie and I were emotionally drained, but I felt that we had learned a lot.

“You have homework,” Ruth sang with a grin. “I want you to play the Child’s Game with Meaghan for fifteen minutes this afternoon and play the Parent’s Game for another fifteen minutes. Actually, this will be your daily assignment. It will help you to practice your attending skills and help Meaghan learn compliance.”

I nodded, happy to have something constructive to do.

“You both did well today,” Ruth said as she headed for the door. “Tomorrow will be easier. Good-bye Meaghan.”

“Meggie, say ‘bye’,” I prompted out of habit. “Oh Lord,” I cupped my hand

to my mouth, wide-eyed. “Was that a command?”

Ruth grinned. “Don’t worry about it this time. I’ll see you both tomorrow.”

Wonderful Ruth. I'm sure Meggie thought she was an ogre, but to me she was a savior!

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Chapter Nine

Learning My ABCs

By the second week of Meaghan’s home program I was beginning to feel more comfortable and confident about what I was doing. I had learned a few things about behavior. First, that it rarely occurs in a vacuum. Both acceptable and problem behaviors take place in an identifiable context; an A-B-C, Antecedent (setting), Behavior, Consequence (action taken) sequence. In dealing with behaviors, it’s important to identify and alter or adjust the A and/or C of the context in which they occur.26

Behaviors followed by pleasant consequences are more likely to happen again, and visa versa. Actually, most behaviors we tend to view as negative are really, from the child’s point of view, successful or rewarding ones.

Take Meg’s crying or “tantruming,” as I was learning to call it. She would predictably tantrum whenever I or one of her therapists tried to teach her something new. So what did we do? We either gave up trying to teach her the new task or moved on to an activity that she preferred. This strategy certainly worked to reduce Meg’s crying, but the only thing we were really teaching her was that a well-timed tantrum was an effective way to not only get out of doing what she didn’t want, but also to get what she did want.

The primary culprit for maintaining behavior problems is attention. Not just praise and smiles, but coaxing, lecturing, making eye contact, frowning, scolding or even yelling. These latter responses might not be pleasant consequences but, to a child with a limited array of strategies for getting “nicer” attention, any type of reaction will do.27 So, the best way to discourage behavior problems is not to react to them in any way, to ignore them.

In some instances, however, it is easier and more effective to simply remove a reward. When Meggie dumped the crayons out of the box and brought one to her mouth, I could have ignored her and let her sample a crayon, hoping that she wouldn’t find the taste pleasurable (therefore

rewarding). But it made more sense to do what Ruth did -- to simply take the crayons away.

Similarly, if Meggie played with her food during a meal rather than eating it, ignoring would hardly solve the problem but removing her plate would. An important aspect of this reward removal policy is to set a time limit or stipulation on the removal. Meg could earn the reward of getting her food back by agreeing to eat properly. Then I could praise her for her good behavior.

Yet another option on the consequence side of the equation is using time out, physically removing a child from any possibility of reward for a fixed period of time. Ruth and I decided we would use this only as a last resort (and we never wound up using it).

The antecedents -- circumstances leading up to a behavior -- we could change included better “child-proofing” our house. I had already done this to a significant degree, but there were still some distractions and temptations I could eliminate. I could also try to put more structure into our day, schedule more activities or have Meg help me with chores, thereby cutting down on her idle, mischief-making time.

However, the best way to stave-off problem behaviors, according to the experts, is to teach alternative behaviors -- play or functional skills -- that are incompatible with the problem ones. This is where Ruth’s expertise came in. Her job was to teach me how to effectively teach my child.

The two behaviors I was most concerned with eliminating initially were Meg’s propensities to put things into her mouth and to pull hair. I knew I could diminish her mouthing to a degree by teaching her the proper way to play with her toys, but her hair pulling had me stymied. I couldn’t stop Meg from engaging in this behavior without giving it negative attention, and I certainly couldn’t ignore it.

“I suspect she’s getting more out of hair touching than your attention,” Ruth allowed. “For her it’s self-stimulating, meaning the rewards for her are more internal than external. The feel of hair is obviously very pleasant to her. Also, it might be that this is her way of “tuning out” the social demands of relating other people, particularly strangers. If she focuses on their hair, she doesn’t have to look them in the eyes.”

“So what can we do about it?” I asked, feeling at a loss. “If she likes the physical sensation so much, or if it’s helping her to cope, how do we combat it?”

“Self-stimulatory behaviors are a bit more difficult to treat, but essentially the same techniques apply. Above all, you mustn’t reward them with too much attention. If Meg reaches for someone’s hair, you might say “No hair” firmly or take her hands down, but you shouldn’t give it any other attention. And you should always try to redirect her to more appropriate play. Hopefully, as she learns some new skills, she’ll feel less need to resort to any form of self-stimulation.”

“Amen to that,” I vowed.

Before we could settle down to serious skills training we had one other behavior to overcome, Meaghan’s aversion to sitting. When she’d gotten the small table and chair set on her birthday, she hadn’t hesitated to take a seat in one of the pint-sized chairs. But now that she sensed that we were planning to use the table to teach her, to place demands on her skills and attention, she wanted nothing to do with it. When we told her to come to the table, she either burst into tears or ran the other way.

Ruth and I brainstormed, trying to come up with a strategy to entice Meg to sit and stay seated. Giving bits of food wouldn’t work, because she’d jump up as soon as she finished eating. We needed some new and tantalizing reward to offer her. Meg had always loved music. She fell asleep listening to it every night. In fact, she couldn’t wait to get to bed each evening so she could have her music. Oddly enough, it had never occurred to me to get her a portable tape player so she could listen in the daytime. It occurred to me now.

“What if we play her music for as long as she sits,” I suggested. “If she gets up from the table, the music goes off.”

Ruth grinned. “You’re getting the hang of this. It sounds good to me,” she approved. “Just make sure that you only let her have the music when she’s sitting quietly at the table. Don’t let her play with the tape player at any other time.”

“I won’t,” I promised. If anything could soothe away my daughter’s fears, I felt music could. Still, I crossed my fingers that the plan would work.

That evening I set the new tape player on the table and put in one of the new Disney song tapes I had bought Meg. She eyed me curiously from across the room.

“If you sit at the table, Mommy will play you music,” I said, as casually as I could. (God forbid she sense my desperation.)

She edged closer to the little table. When she was beside it, she reached out to try to turn on the machine. I stopped her. “You have to sit down to get music,” I said.

Without taking her eyes off the tape player, she pulled out a chair and gingerly lowered herself into it. I pushed ‘play.’ The music came on and she smiled in delight. Then she stood up. I stopped the music. “You have to sit,” I said. She sat back down. I pushed ‘play’ again.

She listened for one minute, then pushed back her chair. I stopped the tape. She settled back down. This time she stayed seated for three minutes before trying to stand. I pushed “stop.” She sat right back down. “Music,” she said. This time she sat through the entire tape while I prepared dinner.

It was the weekend so we had three days for Meg to become accustomed to sitting. By Saturday, she was sitting happily at the table for tape after tape. By Sunday, she was continuing to sit even after the music stopped. I gave her some juice to drink and a few puzzles to do, and she sat on, unmindful of the fact that the music lure had been abandoned.

I couldn’t wait to share my good news with Ruth on Monday morning. She regarded me skeptically.

“You’ll see,” I said, like the cat that ate the canary.

When Ruth announced, “It’s time to go to the table,” Meg didn’t let me down. She hurried over and sat right down as though she’d been doing it all along. Ruth was amazed. I was delighted.

Now our teaching could begin.

Every skill or task to be learned had to be broken down into small, simple steps. The idea was to set the stage for success. So, rather than putting a six piece puzzle before Meaghan and instructing her to “Do this,” we put the puzzle before her with a single piece taken out of it.

We gave concise, understandable instructions. “Put in,” we said, pointing to the place the piece belonged. If she put the piece in, we applauded her. If she didn’t, we modeled doing it hand over hand. Then we took it out and gave the instruction again. When Meg was consistently putting one piece in the puzzle, we took out two pieces, then three, then four pieces and repeated the drill. If she began to fidget, we’d backtrack to make the task

simpler until she was confident enough to try more pieces again.

Although this step-by-step strategy can be tedious, it makes perfect sense because it takes into consideration the unique learning style of the autistic child. Because much of the information entering their brains is not completing the full processing circuit, it is not put into meaningful context but is rather processed exactly as it is received, as one big, unanalyzed and undifferentiated clump or “gestalt.”28

This inability to break wholes up into meaningful or manageable parts explains why many children with autism find new and unfamiliar tasks so overwhelming. They are tripped up before they start in figuring out how to go about performing them in a logical sequence because they perceive only the whole and not the individual components.29 By doing the breaking down for them, and helping them to integrate and expand upon segments gradually and sequentially, we make learning less frustrating and confusing for them and far more enjoyable.

In addition to breaking every task or activity into small steps, we enthusiastically praised Meg’s every small success. And when she successfully completed an entire task or met a goal, we lavished attention and rewards (her favorite things) upon her.

We also used tangible, food rewards (peanuts and popcorn) to prompt eye contact. I’d sit Meg in a small chair opposite me, bring a peanut up to eye level and say, “Look at me.” If she gave me so much as a fleeting glance, she’d get the peanut. If she didn’t, I’d hold her chin with her face directed toward me until her eyes met mine and say, “That’s looking.” I would never repeat the instruction while I was prompting her to look. I’d repeat it only after we had finished a trial.

It didn’t take long, using this technique, for Meg’s eye contact to improve. Before a week was out, I no longer needed to rely on the food prompt or the chin hold. I only had to say, “look at me,” and Meg’s eyes would meet mine. The next step was to teach her to look at me spontaneously whenever I spoke to her as well as when she wanted something.

To teach this, Ruth wrote out what would be the first of many programs. In these programs, the objective, the measurement system, the schedule and the setting (where and when the skill would be taught) were precisely specified. For consistency sake, every procedure and instruction to be used was described in detail, and every single teaching step was listed. And, once the final step of a program was mastered, there were more specifications on how the targeted skill was to be generalized and how often it would be post-checked to make sure that it was being maintained.

By the end of the second week of the home program one thing was abundantly clear to me; there would be no short cuts to getting Meggie better. If she was going to learn, it would take a lot of painstaking effort and a real commitment to play by and stick to the rules. I had to be ever vigilant so that I could ignore or prevent Meg’s bad behavior or reward her for being good. I could no longer simply tell her to do something without making darn sure she did it. Nor could I any longer allow her to play with her toys in her own fashion. I had to always be on the alert to redirect or teach. I had to monitor Meg’s every action -- her every intent -- so as not to give her opportunities to “get away with” misbehavior. And, if she did misbehave in any way, I had to be steadfast in correcting her.

Many times, as I struggled to keep up with this regimen in the weeks and months to come, the movie “The Miracle Worker” would come to mind. I’d recall how hard the marvelous teacher, Anne Sullivan, had worked with Helen Keller, how fierce had been her dedication and determination to make her stubborn, deaf-mute charge behave in a civil manner. She didn’t make any allowances for Helen’s handicaps, as her poor parents had done for years. She knew the child was clever enough to overcome them, to learn to behave and to communicate, if she was given the proper discipline and guidance. And, because her teacher never gave up the struggle, Helen was eventually able to achieve a remarkably normal lifestyle. It was my hope that, if I worked with her hard enough, I’d be able to achieve a degree of the same success with Meaghan.

Meg wasn't all smiles all the time.In the early days of her home program,

this was more of the face we saw.

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Chapter Ten

Step By Step

Our home program sessions had a structure of sorts. When Ruth arrived at eight thirty, I would catch her up on what we had done the previous afternoon. We would discuss any problems or progress. Then we’d go into the family room and sit on the floor with Meg to do some puzzles, peg work or pretend play activities. We were working here on getting Meg to be able to occupy herself constructively and independently. After about twenty minutes of this, Ruth would declare it time to “go to the table.”

She would get her notebook and out would come the program and trial sheets. The program sheets, as I indicated earlier, were detailed outlines of exactly how we were going to teach a specific skill. The trial sheets had a column on the left for program listing, then columns marked off for ten trials on each line and a final percent averaging column at the end of each line.

When we were running trials on programs, we would record a + or a - in each trial space according to whether or not Meaghan performed the task correctly. If she performed correctly at eighty percent or more of the opportunities for three consecutive days, the skill was considered mastered.

The initial program, motor imitation, consisted of five different gestures we had come up with for Meg to imitate: patting her tummy, rubbing her hands, rubbing her face, waving and touching her nose. Ruth and I would take turns sitting at the table with Meg. “Meaghan,” we would say to get her attention. When she was looking us in the eye, we would give the instruction “do this” and perform a gesture. If she imitated it correctly, she got a +. If she didn’t she got a -. When she got a - we would note above it which gesture was giving her difficulty, and if it was always the same one -- for Meaghan touching her nose was problematic -- we’d stop the trials for practice before resuming.

Meaghan was quite imitative by this point, so this initial program went pretty smoothly, and we moved onto pointing to body parts. First, we

targeted the major parts -- head, arms, hands, tummy, legs and feet. “Where is your tummy?” we’d ask, and Meg would have to point to it. If she didn’t respond within five seconds, we would model for her, taking her hand and placing it on her stomach, saying “this is your tummy.” Then we’d repeat the question. When we began the trials, we’d alternate between two body parts only to eliminate confusion; then we added in two more and then two more, eventually moving on to facial features.

We had to be alert always to the possibility that we were placing too many demands upon her too quickly. If we frustrated or confused her we’d lose a lot of ground, because Meaghan would tantrum and this would necessitate repeating the trial. She didn’t like to be wrong, nor did she like to be corrected. So we set modest goals initially and built upon them gradually.

Our primary language goal for Meaghan was simply to increase her functional vocabulary. Kerry Howland, the May Center speech therapist, had done a baseline evaluation the second day of our home program. Here is some of what she had to say:

“Meaghan is a responsive child who readily engaged in play activities with the examiner. She evidenced atypical interaction patterns including climbing on the examiner and snuggling in her hair. It appeared that Meaghan wanted to interact but didn’t always have appropriate strategies to do so. She was active and distractible throughout the evaluation...

“Expressively, Meaghan is using approximately ten single words to communicate, along with conventional gestures and signs. Meaghan readily imitates words when specifically asked to do so. She requests objects by naming the item, pulling a person to the item, or pointing and saying THAT. She understands a variety of directions when presented in contextually supported situations.”

In her summation Kerry wrote that Meaghan presented with “moderately reduced language abilities.” It pleased me that for once my daughter’s deficit hadn’t been labeled as “critical” or “severe.” Kerry wrote that Meaghan’s skills “clustered at the 18-20 month level,” not great for a thirty-six-month old but gratifyingly up from the dismal 6-9 month range of a year earlier.

Kerry’s foremost recommendation was that we expose Meaghan to a variety of object, action and relation words, focusing on items she could interact with or actively manipulate. The idea was to teach her words in the context of naturally occurring activities. If Meg was eating a cracker, we’d teach her to say “cracker.” If we were playing ball, we’d model “roll” or “throw.” We’d only focus on one word at a time. We’d model the targeted word and wait

for her to repeat it. If she did, we praised her. If she didn’t, we modelled the word again and went on with the activity. Our aim was to get Meg to use language to communicate her wants and needs. First we had to supply her with the words, then we had to get her to say them without our prompting, to initiate requests on her own.

To do this we set up situations where Meaghan would have to use the targeted word over and over to get what she wanted. For example, at snack time, if we wanted her to ask for “juice,” I’d bring the pitcher and a cup over to where she was sitting. “Juice,” I’d say as I poured a little into her cup. Invariably, she would reach for the cup, intending to get some. “What do you want?” I’d ask. If she responded “juice,” I’d praise her and give her some. Ruth had taught me to pour only a few sips of juice into her cup at a time, so one cup afforded us lots of teaching opportunities. Every time Meaghan handed the empty cup back to me, I’d pour in a few more drops and wait expectantly.

When she mastered this minimal language demand, which she did quite quickly, we upped the ante to two words. She had to ask for “more juice” in order to get some. Meg got the message. Never again would she merely be given food or drink. She would have to say what she wanted in order to get what she wanted.

In addition to working on food vocabulary at snack time, we made use of this time to teach Meaghan to say “no.” Ruth asked me to pick out a few food items that I was pretty sure she wouldn’t like. I selected a pickle, a black olive and a rotten lime. When snack time came, Meg climbed up into her chair expectantly.

“What do you want?” I asked.

“Banana,” she replied with a bright smile, having by this time mastered the ‘say the word, get the goodie’ game. I placed the olive on her tray. Her face fell. She frowned up at me. “Banana,” she repeated.

“Do you want this?” I asked, holding the olive out to her. She pushed it away. “No,” I modelled.

She said nothing, clearly baffled by my bizarre behavior.

I held out the olive again. “Do you want this?” I waited. “No,” I modelled, shaking my head with exaggerated emphasis.

I asked and prompted again.

By the forth time I presented her with the unwanted olive, she’d caught on. “No,” she said tentatively.

“That’s right,” I enthused. “You don’t want this ugly olive, you want a yummy banana.” I gave her a piece.

“More banana,” she said as she greedily swallowed down the first chunk. I handed her the pickle this time. “Do you want this?” I asked.

She was getting upset. “No,” I quickly modelled.

“No. Banana,” she said.

“Oh,” I said, slapping my forehead and hamming it up, “You want banana, silly me.” I gave her another piece.

A crucial strategy in teaching language impaired children is the ability to play dumb. I’m not going to say that this comes naturally to me, but I’ve become quite proficient at it. The more I deliberately misconstrue what my daughter wants, the more adept she becomes at telling me what she does want--at communicating!

Each week we targeted five new vocabulary words. We had to be careful not to add too many words too fast or Meg might get confused. A month or so into her home program, I decided to make a list of the words Meaghan had and used as a way of keeping track of how her vocabulary was growing. I counted them up. She was solid on thirty words, a gain of twenty words since we began. Not bad for a month’s work!

The flip side to teaching Meaghan to say words was teaching her to understand what they represented. We began to work on her receptive skills by having her identify objects we placed on the table in front of her.

Again, we took it step by step. First, she merely had to point to one of two objects we named. Then we added a third object, then a forth, fifth and so on. We continued to add new objects, replacing the ones she knew and reintroducing any she was hesitant about. We demonstrated matching hand over hand and when she mastered this concept, we used it to teacher her to recognize different shapes and colors.

We taught her to generalize the color concept from pieces of paper to objects and then moved on to having her point to objects of different color (identify them receptively). Eventually we would have her name the colors and then combine color and object names (“red car” or “yellow peg”) but we

dared not rush the process lest Meg become overwhelmed.

By this time I had no doubts about Meaghan’s ability to learn. Ruth frequently reassured me that she was very smart. But she could not learn like other kids, because her brain did not function like the brains of other kids. Concepts like shapes and colors, which most children grasp so readily and intuitively, were difficult for her to fathom.

A normal child would only have to be shown a red block once to understand that red was the color and block was the object. If I simply said “red block” while pointing one out to Meaghan, she might well have concluded that “redblock” referred to all blocks, regardless of their color. You could teach typical children colors, shapes, sizes and other descriptive qualities simultaneously and their brains would automatically sort through the information, process and organize it appropriately. But Meaghan’s “funny wiring” made it difficult for her to discriminate, interpret and categorize information in any kind of flexible, contextual manner. When she learned gradually, one step at a time, she learned readily and well.

Our first morning tabletop session would last for an hour or so. At ten o’clock we’d break for coffee and Meg would have a snack. Then we’d resume our tabletop work for another hour or, if Meg was getting antsy, we’d go back to floor play until it was time for Ruth to leave at noon. If all went well, we were able to run through six to eight programs a morning.

After Ruth left, Meggie and I would eat lunch and then go outside, either for a walk or to play in the yard. Most days, we did both.

When we returned inside in the afternoon, we’d play the child’s game for twenty minutes or so, followed by the parent’s game. Meg still wasn’t able to keep herself amused for very long, but we had made some headway. On a good day she would sit quietly on the floor playing with her puzzles, pegs and Legos for a half hour at a time. I was finding that the more competent she became at a particular activity, the more she wanted to do it. She would zip right through sorting her shapes and then dump the container out and do it again, over and over.

Often, late in the day, we’d squeeze in another tabletop session. Then it would be time for bath and dinner. While I dished up dinner I placed stacking cups, blocks or small puzzles on the tray of Meg’s high chair, so she seldom had an idle moment in her day. It was exhausting keeping her endlessly occupied, but exhilarating watching her progress.

By the end of May, after only two months in the home program, Meg was pointing to all her major body parts, matching shapes and colors, and

identifying both receptively and expressively all the items in her object I.D. bag. She was consistently using about forty words and looking us in the eye whenever we spoke to her or she spoke to us. Her hair fixation and mouthing had abated (as her play skills had progressed) and her attention to most tasks had increased tenfold.

Meggie doing a puzzle. She'd actually become quitecompetent at this through our step-by-step teaching strategy.

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Chapter Eleven

Beginnings and Endings

“I’d say Meaghan’s ready to start school,” Ruth pronounced over coffee on a Monday morning in early June. “In fact, I’ve made arrangements for her to begin attending afternoon sessions next week,” she said with a triumphant grin. “We’ll continue our morning work here, at least until we get her toilet trained.”

I was relieved on both counts; first, that I’d have some help keeping Meggie positively occupied all day, and second, that I’d have help getting her over the hump of toilet training. I hadn’t a clue as to how to go about this, as Meg had absolutely no interest in it and her wet diapers didn’t bother her a bit.

“Don’t worry,” Ruth reassured. “We can do it one of two ways. We can either sit Meg on the toilet for as long as it takes until she goes, and then give her lots of positive attention, or we can bring her up to the toilet every half hour and have her sit for five minutes. If she goes, she gets a reward. If she has an accident in between sittings, we bring her up to the toilet and do a positive practice.”

I opted for the latter interval training as the last thing I wanted to do was sit in the bathroom all morning. I knew Meaghan would be miserable and, with my luck, she’d do nothing until we got her off the toilet and then she’d be sure to pee. At least with the half- hour training we could continue to work on her programs in between bathroom sessions--and accidents.

“You’d better stock up on underpants,” Ruth advised. “As of tomorrow Meg won’t be wearing diapers anymore during the day.”

“I’ll get some,” I promised, frowning as the full import of her words hit me. Once we began the program I’d have to toilet Meg every half hour all day, every day. “You mean I won’t be able to put her back in diapers at all?”

“Not if you want her to succeed in toilet training. She must feel the wetness when she pees.”

For the next several months our lives would be ruled by Meg’s toileting schedule. Between her scheduled sittings and the repetitive corrections we had to do whenever she had an accident, Meg and I spent most of the month of June in the bathroom. Fortunately, she was spending her afternoons in school, so I got a bit of a break from toilet duty, enough time to run my errands.

Meg did have a lot of successes. She understood right away why she was sitting on the toilet and always attempted to pee, but she had yet to learn to connect the word “potty” to the action or need to go. And to make matters worse, her wet panties didn’t bother her any more than her wet diapers had, so the correction of having her pull her wet pants down and back up three times was not the punishment we’d hoped it would be. Ruth and I began to put more verbal emphasis on wetness being “bad” and dryness being “good.” We rewarded her for dry pants rather than for peeing in the potty and this helped considerably.

At the end of June Meg managed to have three accident-free days in a row, so we were able to up her toileting schedule to forty-five minute intervals.

By July, she was consistently saying “papa” when she had an accident or went on the toilet, having made the connection between the action and the word, but she had yet to achieve control over her bladder (a problem compounded by her poor proprioception). If I skipped or delayed a toileting, which occasionally happened during dinner, there would be a puddle in her chair when she got up. Or, if there was traffic on her rides to or from school, she’d arrive at school too late to make a bathroom run or at home soaked. So her remaining accident-free was as yet more dependent on our strict adherence to her toileting schedule than to any self-control on her part.

Adhering to this schedule was no mean feat in the summer months, when we all wanted to be out and about. On warm, sunny weekends, Brian, Meg and I enjoyed going for family outings. We’d pack up a picnic lunch and go to Wingaersheek Beach in Gloucester or to the peer in Rockport, or further afield to Kennybunkport, Maine or the Kangamangus Pass in New Hampshire. But, rather than relaxing and relishing this carefree time, we had to be ever mindful of the time and always on the lookout for restrooms. On longer day trips, we’d tote along a portable potty so we could toilet Meg roadside if no other facilities were available.

By August our perseverance was paying off. Meg was on a one-hour toileting schedule, and most days were accident free!

Meaghan was making progress on her other IEP (Individualized Education Plan) objectives as well. Because of her home training she’d adjusted readily and well to the classroom routine. There were eight children in her class. Meg was the youngest and the only girl. There was one head teacher, Barb Dimmock, and two assistant teachers.

During tabletop activities each teacher worked with two or three kids at a time. While a teacher was working one-on-one with a child, the other children were expected to occupy themselves independently doing puzzles, sorting, coloring or other assigned tasks. Aside from the small teacher-student ratio and the behavioral, step-by-step nature of the teaching, the classroom was run pretty much like any typical preschool classroom.

The children each had a cubby with their name on it, where they were expected to store and retrieve their belongings. They were expected to bring their chairs to the designated spot at circle time and return them to their respective tables for work and snack. They were expected to throw away their trash and wipe off their tables after snack. They were expected to line up at the door when leaving the classroom and to walk quietly, single file down the hallways.

These consistent expectations of normal, age-appropriate behavior were geared toward fostering each child’s independence and sense of self. Anxiety and confusion were kept to a minimum by stipulating rules and sticking to routine. The only time Meg tantrumed early on was when she was tired or frustrated by a task. In the main, she enjoyed going to school and heeded her teachers well.

As August drew to an end, we began winding down Meaghan’s home program. She had achieved most of the goals we had set for her, her toilet training was completed and her vocabulary was increasing weekly. Her independent play skills had improved but remained a weak point. When left to her own devices, she pretty much just filled and dumped things or trailed me around the house.

Meg still had little interest in books. Conventional children’s picture books were simply too much for her. Her gestalt processing caused her to perceive the renderings on each page as a jumble of lines and color, rather than as a grouping of individual pictures, each with its own distinct identity. This inability to fine tune her visual attention, to selectively focus on just one thing at a time, made looking difficult and uncomfortable for her -- especially when the subject matter was not salient to her.

When I made her a photograph book of familiar objects around our house and important people in her life, she had considerably less difficulty. Because she recognized the subject matter of the snapshots, she was intrigued by and even enjoyed looking at them. In this way she came to appreciate that pictures are merely representations of objects and people and that they share the same name.

Meg’s problems with looking carried over to watching TV. I tried implementing a TV watching program, rewarding her with praise and peanuts for every ten seconds of sustained viewing, but I abandoned the effort when it became clear to me that she was just glancing at the screen long enough to earn a peanut and had scant interest in the lively antics of Big Bird, Bert and Erie.

Fortunately, I had much better luck with the program I devised to get Meg to transition from her crib to her new “big girl” bed. The game plan was as follows: if she got into bed and stayed there, she got to listen to music. If she got out of bed more than twice, she lost the music privilege. If she came downstairs, she would be brought back up with the firm reprimand, “No, you have to go to bed.” If we had to repeat this more than twice, we would stand by the door to make sure she couldn’t open it and tell her firmly to “go to bed.” We would ignore tantruming. When the room was quiet, we would to in and check on her.

The first night we implemented this program, Meaghan got up four times and eventually fell asleep on the floor. The second night she got up twice before falling asleep in her bed. By the

third night, she was asking to go “night, night,” climbing into her bed and falling asleep without further ado.

The key to the success of this program, as with all other programs, is setting limits and sticking to them. Meaghan had to know what she could expect when she tested our authority. It was not easy ignoring her cries of protest, but we did it because we knew that the alternative of rewarding them by letting her have her way was far worse. Had we allowed her to keep coming downstairs, Meg would have never been certain when she really had to go to bed, and we would have suffered long-term consequences of our early failure to enforce a bedtime. To this day we’ve never had a problem with Meaghan objecting to or resisting going to bed.

We spent the final week of the home program re-evaluating Meaghan and charting her progress. It was encouraging. In the preacademic area, she had progressed one year in four months! Her self-care skills were almost up to age level and communicatively, she had progressed nine

months. Ruth’s prognosis was also encouraging. She said she thought it not unrealistic of us to expect Meg to attend regular kindergarten, given the great gains she had made and the fact that she still had another two years of full-day schooling to prepare. This was very heartening news.

On Friday, August 19th, four and a half months after she first set foot in the door, Ruth departed our home for the last time. I would miss her. In the brief time she’d spent with us, she’d seen us through lots of ups and downs with professionalism and humor. I remain indebted to her to this day for the valuable guidance she gave me, guidance that gave me the confidence I needed to feel in control; a key factor not just in behavior management but in day to day living with an autistic child. The more I was able to learn about how to work with Meaghan, the more involved and effective I became as both her parent and her teacher, the latter role being every bit as important as the former.

Now that I knew my daughter could learn, the pressure to play catch up, to keep her moving forward weighed heavily upon me, especially as I thought there was a time constraint. I’d been told that if Meaghan was going to get better, to learn to speak and behave fairly normally, we had better work this miracle before she turned five or six. Up until this age her brain was malleable. After this, all bets were off.

I now know better.

One thing Meggie has always loved is swinging on swings. No doubt the vestibular stimulation satisfies some inner

craving, but it never fails to put a smile on her face.

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Chapter Twelve

Too Good to Last

Meg had a week off before beginning full day schooling in September. We crammed a lot into the vacation.

On Monday we brought her into Boston to Children's’ Hospital for a follow-up appointment with her neurologist, Dr. Kuban. While I outlined Meg’s impressive gains in language, play and behavior, the doctor examined her. He tapped her knees, measured her head, shined a flashlight into her eyes. He had her take a cheerio out of his hand, draw a line on a piece of paper and, after examining her feet, had her walk barefoot across the room. He scribbled his findings on a sheet of paper and then looked up at us.

“Everything looks fine to me,” he said. “Meaghan’s head circumference and cranial nerves are normal. Her heel cords are a little tight and her muscle tone is slightly diminished, but overall her posture, bulk and strength look good. It sounds like she’s progressed considerably since I last saw her, so I surmise that her schooling is working out well.”

“It’s made a big difference,” I said, “so much so that it’s made me wonder whether her seizures could have contributed to her delays. She’s been doing so much better since they’ve been brought under control.”

“I’m afraid not,” Dr. Kuban responded. “Seizures are a symptom rather than a cause of some underlying brain abnormality. It’s important that they be brought under control, but eliminating them isn’t going to eliminate the problem.”

“Too bad, “ I said glumly, although I’d suspected as much.

“Speaking of controlling seizures,” he went on, “as Meaghan seems to be doing well on her current Tegretol dosage I see no reason to tamper with it. Continue the blood tests and, barring any problems, I’ll see you back here in six months. Oh, and Meaghan, keep up the good work.” He gave her the

thumbs up sign.

She gave him a hesitant wave in return, and we left the office feeling pretty much on top of the world.

The rest of the week we devoted to daily outings. Meg loved going for car rides. The destination didn’t matter, as long as she got to “go” someplace. Movement was soothing and organizing for her because of her innate craving for vestibular stimulation. She got very upset when we had to halt for stop signs or traffic lights, so we generally opted for outings that involved long stretches of open highway and a walking component.

We went to Newburyport and traipsed along Long Wharf and through Old Town. Adhering to this nautical theme, we took a day trip up to Kennybunkport, Maine. We ate lunch at one of the quaint, seaside restaurants and took a stroll along the cobbled streets of the town, admiring the profusion of hanging floral baskets and displays of crafty paraphernalia. I would have loved to browse in some of the enticing little shops, but Meg would have none of it. As with riding, she became instantly agitated at the slightest break in the rhythm of our exercise. She enjoyed eating and walking; stopping to shop or sightsee made her anxious and fidgety, so we were obliged always to keep on the move if we wanted to avoid a scene.

On Friday we packed up our beach totes and umbrellas for an outing to Wingaersheek Beach in Gloucester. This was our favorite beach because it was not too big, and a long sandbar under the water kept it shallow far out into the ocean. When the tide was low, Meg and I would wade out, getting splashed by the gentle waves along the way. As long as we were walking or frolicking in the water, Meg behaved impeccably. But she had little desire to sit and sunbathe, less to play in the sand.

Every time we came I’d bring the requisite bucket, shovel and sand forms. Meg wanted nothing to do with them. If I tried to get her to play along with me, she’d act as though I was submitting her to an extreme form of torture. Invariably she wound up either dumping sand all over our towels and belongings or getting up and scampering off, with me trotting after her. Hardly a relaxing day at the beach.

By the time Monday rolled around, I was exhausted by the outing regimen and more than ready to wave Meggie off to her first full day of school. Fortunately, she adjusted quite quickly to the extended hours, and I welcomed the chance to get the house and my life back into some semblance of order and to rest up a bit for her return.

Shortly after she started back to school, I noticed a big leap in Meaghan’s assertiveness. She entered into a “No” phase, saying “No” quite forcefully and often when she didn’t want to do things. I was pleased that she had generalized rejection but concerned that she was carrying it to the extreme, as “No” was her answer to just about everything. Her teacher, Barb, assured me that this negative stage was a healthy (if exasperating) one. It meant that Meaghan was coming into her own, asserting her individuality and independence.

This burgeoning spirit of independence was manifesting itself in other troublesome ways. Meg no longer wanted to hold my hand when we went for walks. This was fine as long as we stayed on the sidewalks around our neighborhood. I trusted her to stay by my side without wandering or dashing off. But trusting her on familiar turf, on a quiet, residential side street, was one thing. Trusting her elsewhere was quite another. When we went to malls or took day trips to other towns or into the city, where the streets were heavily trafficked and the sidewalks crowded with pedestrians, Meg fussed non-stop when I wouldn’t let go of her hand to let her walk on her own. With Meaghan I was rapidly discovering that it was either all or nothing. There was no middle ground.

I was particularly concerned about hand holding in busy venues because of Meaghan’s penchant for bolting. When she was outside Meg was a wild, free spirit, virtually oblivious of my presence. She quite often bolted down the street when she got out of our car or her school bus, dashing heedlessly off in the direction of the highway at the end of our road. Sometimes when I called her back she’d turn, but she never stopped. She was untroubled by the distance between us and utterly unaware of any danger. When she took off like this, there was no time to watch and wonder. I’d immediately rush after her, grab hold of her hand and steer her back toward the house, reprimanding her firmly along the way even though I knew my scolding would have no effect on the impulsivity that caused her to run off.

Around this time I became aware of a significant change in Meaghan’s auditory processing. As a baby, she had been very sensitive to loud noises. The sound of the vacuum cleaner had terrified her. I used to have to wait for her to take a nap, shut her door tightly and then cautiously vacuum only the far end of the house. The sound of the blender or a lawn mower also brought her to tears.

But, before she turned four, her fear of these sounds had turned to fascination. She loved it when I vacuumed and would ask for “more” when I stopped. She regularly requested Brian to “mow” the lawn (a request oft

denied) and when we were out walking she would turn and stare, as if mesmerized, anytime a car engine started up. She had, by virtue of being exposed to them often enough, accustomed herself to tolerating -- even liking -- sounds that had once tormented her.

As Meaghan’s hypersensitivity to sounds diminished, so did her hyposensitivity to speech. The more she listened to and began to understand words, the more salient they became for her. This improvement in her attention to and comprehension of language, however, did not translate into any gain in her expressive skills. If anything, her language growth began to falter. She was having a tougher time getting her words out and had even begun to stutter.

The school speech therapist, who served in a consulting rather than teaching capacity, assured me that this was a normal developmental stage, one that Meg would outgrow if we didn’t call too much attention to it. Still, I was concerned enough to opt for a second opinion.

Although I dreaded doing so, I called Dottie up at NSCH and arranged for a speech evaluation, a necessary prerequisite to getting therapy. When the day came my only hope was that Meaghan would remain calm enough to demonstrate some of her newly acquired language. It was dashed when we entered the evaluation room, and I gathered that Dottie was going to stand to the side and observe rather than structuring the session. Meg was left to do what she would with the toys that were scattered around the room. This reliance on autonomy was fraught with peril for a child like mine.

Meg initially zeroed in on a table of pegs and a pegboard. She took hold of a peg, rubbed her fingertips against it for a minute or two, and placed it in a slot. She placed several more pegs in the board before losing interest and unceremoniously dumping the rest out of the box and onto the floor. Her next target was a picture book. Rather than opening it and looking at the pictures, Meg took hold of a pen she found on Dottie’s desk and began scribbling on the cover. When Dottie intervened to replace the book with paper and crayons, Meg fell apart. She ran over to me in tears, taking a bite out of the crayon in her hand. On the few occasions when Dottie attempted to interact with her, Meg grabbed or yanked at her hair. My heart sank. What had happened to all the progress we had made?

Remarkably, Dottie was able to garner enough information during the harrowing hour to assess, quite accurately I felt, Meg’s level of communicative functioning. Among other things she wrote that Meaghan’s responses to speech were inconsistent and that she was most responsive when information was provided in a learned, stereotypic manner. She said that Meaghan appeared to listen to selected, salient words in an utterance; that her comprehension skills were adequate to understand simple

questions and concise action commands, but that she hadn’t yet developed an understanding of the communicative function of language. Expressively, Dottie allowed that Meaghan was combining words into simple phrases and sentences, although most of these were rehearsed or stereotypic in nature. When Meaghan did use language, her articulation was poor and she occasionally stuttered. She didn’t use words spontaneously at all to comment about things, relay experiences or ask questions.

Not surprisingly, intensive speech therapy was recommended and approved.

Along with her problems with language, Meaghan’s problems with looking continued to concern me. I couldn’t shake the feeling that the intermittent inward turning of her right eye and the way she sometimes tilted her head were indicative of some visual problem that might not be resolvable if we waited too long. Dr. Schey recommended Dr. Robert Peterson, an ophthalmologist at Children’s Hospital, and we brought Meggie to see him shortly after the New Year.

He examined her vision as best he could, ruled out an earlier diagnosis of forth nerve palsy as well as the lazy or crossed eye we were most concerned about, as both Meg’s eyes focused and followed fine. He told us he suspected that she was slightly farsighted but needed to conduct a more thorough exam before he could make a definitive diagnosis. He gave me a paper with six black and white rorschach-style images on it. I was to teach Meg to identify these images so that he could test her vision with Allen cards (larger versions of the same images held at a distance) at our next appointment.

I did get Meg to identify most of the images for me, but when we brought her back to Dr. Peterson’s office she refused to look at the cards he held up. He had little patience with her reluctance and made no attempt to accommodate his exam to her abilities or temperament. When she was anxious about having her eyes covered up to test the vision of each eye separately, he hastily gave up the attempt and, shaking his head, sat down at his desk and started scribbling.

One of the things he scribbled was a prescription for glasses. It was his feeling that Meaghan was slightly esotropic (farsighted) and that her eye turn and head tilt were her way of accommodating this impairment. Brian and I were skeptical, but for two years we’d run the gamut of optometrists and ophthalmologists and we were worn out. We’d give the glasses a try. Dr. Peterson said Meg would only need to wear them for her school work, and who knew but what they might have a beneficial effect on her fine

motor agility and coordination.

If you look closely at this picture, you'll seehow Meaghan's right eye does turn in a little.

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Chapter Thirteen

Doubts Creep In

In March of 1989, my mother and stepfather treated us to a much needed vacation on Sanibel Island in Florida. They had rented a wonderful house on a private cul-de-sac, complete with pool and spacious screened-in porch, and had invited my sibling’s families and ours to take turns going down to share it with them for a week at a time.

Our turn for this get-away came the last week of March, so we were able to celebrate both Easter Sunday and Meggie’s forth birthday basking in the Florida sunshine. By the end of our stay, we were also celebrating pretty sure signs that we had succeeded in the conception of a second child.

Brian and I had been thinking about having another child for some time, but I’d had a lot of misgivings. Meaghan was still very dependent upon me and, because of her delays, she would continue to be. A new baby would take away from my time with her, and I didn’t want to feel guilty myself or for her to feel shortchanged. I’d had to be sure that she would continue to receive all the special attention she needed before I could commit myself to having a second child, so her successful adjustment to full day schooling factored significantly into my decision.

Having made up my mind, however, I became very excited by the prospect of another pregnancy and, when we returned home from Sanibel, I immediately made an appointment with my gynecologist. His test confirmed that I was indeed with child and, if all went well, we could expect our baby to be born in early December.

In the meantime, life went on.

Meg’s annual IEP meeting was in mid-May and, on paper at least, her progress at the May Center appeared adequate. She had made the greatest gains in her pre-academic skills. She could now identify colors and shapes, pictures and her name. She could hold scissors and cut strips that were held

for her, draw vertical lines and color haphazardly. Her self-care skills had progressed to the point where she could perform the toileting sequence independently, including washing and drying her hands. She could take off and put on her coat but needed assistance to fasten it. She could use a spoon and fork appropriately at mealtime, although she tended to eat so fast that she was prone to spill.

Physically, Meg was now able to walk up and down stairs using alternating feet, to peddle a tricycle, to climb a ladder and slide down a slide. But she couldn’t yet pump herself on swings and, although she was able on occasion to kick a ball around and to catch a large ball tossed to her from a short distance, there was no consistency to her ball play.

In fact, Meg had considerable difficulty coordinating and carrying out many of the movements that come naturally to most children because she lacked a clear awareness of where all her body parts were and how they worked in conjunction with each other. Her proprioceptive uncertainty and gravitational insecurity made engaging in playground activities, particularly those that involved climbing, jumping or maneuvering over uneven surfaces, uncomfortable for her. She had to be prodded to engage in any type of physical play, preferring to sit on the sidelines and have her hair brushed or her back rubbed.

In the area of social skills, where Meg’s teacher and I had counted on her making the greatest gains, Meg had reached a plateau. Because we’d both felt that, despite her other shortcomings, Meg was inherently a very people-oriented child, Barb had arranged for her to spend supervised time in the integrated classroom three afternoons a week.

This classroom was run like most preschools, with four or five different activity stations: a table for manipulatives (Legos, pegs, puzzles), a house corner with a stove, crib and dolls, a dress up station, a table for playdough, one for watercolors, crayons and other art activities and a library corner. There were also alternating special activities, such as water or sand play, rock-a-boats, a post office, shoe store and so on. Aside from circle and snack time, there was little structure to the afternoons. The children were supposed to occupy themselves at the play stations of their choice. The problem, of course, was that most of these activities were beyond the scope of Meg’s limited independent play ability. She needed a lot of direction to know what to do and a lot of assistance at each station.

Meg was naturally attracted to the dress up station, where she could perseverate on shoes, and she liked rocking in the rock-a-boat; no doubt finding these familiar activities soothing amidst the excess stimulation. But she was never left alone to do as she pleased. Instead, the expectation was that she keep switching from station to station, from task to task, and that

she not only participate by imitating and interacting, but that she keep changing the ways in which she participated and interacted.

Looking back it’s easy to see how unrealistic these expectations of adaptability and flexibility were for were for an autistic four-year-old for whom every sight, sound and touch was a novel and sometimes frightening experience; a child who hadn’t the vaguest notion of what interaction was, much less of how to go about it. Not only did Meaghan lack adequate language and play skills but, realistically, she wasn’t going to learn these skills through imitation because she lacked any incentive to imitate. She felt no social compulsion to fit in. She had no understanding of the social point of the exercise; no understanding of what the other kids were thinking or doing or why they were doing it. The contrast between her mystifying fixations and behaviors and the intentional play and interaction of her peers was pronounced.

In short, Meaghan was in way over her head, and yet all the teachers acknowledged her interest in the other kids. She watched what they did and wanted to be with them physically. Had it been possible to do the integration in reverse, with the typical kids being brought into the secure environment of her structured morning class, I’m sure she would have benefited more from their role modeling. But this was not an option. Our only option was to continue the afternoon sessions or not and, although I doubted Meg would ever be on an equal footing with the others, I felt the experience of just being around other kids, even if she wasn’t actively learning from them, was too important to relinquish.

Apart from this lack of social progress, Meaghan’s behavior in general was on a down slide. True, she could now sit and attend for thirty minute work sessions, but she still tended to fall apart or tantrum in response to high demands or in situations where she was required to wait for something she desired or requested. Also, she’d begun to display some aggressive behaviors at school -- biting, pinching, grabbing or slapping -- behaviors her teachers attributed to a desire to call attention to herself.

These behaviors troubled me because Meaghan had never been an aggressive child. She was inclined more toward passivity and timidity than temerity. What troubled me most, however, was the vacillation of her teachers in dealing with Meg’s acting out episodes. Initially, they had treated them with a firm “hands down.” Then they had switched to a one second head tilt (applying their hand to the back of her head and angling it down) followed by redirection. I learned at the meeting that this technique was now going to be abandoned in favor of five stand up-sit downs. As I sat and listened to these randomly improvised and revised strategies, I got the impression that Meg’s teachers were grasping at straws; that they didn’t have all the answers after all.

The principle recommendation for dealing with the behavioral backsliding was to keep Meaghan positively occupied so that she would feel less need to test; a remedy far easier proposed than accomplished, especially during non-school hours. Fortunately, I had some help keeping Meggie busy on weekends during the summer months of my pregnancy as both Barb and her assistant, Leslie, had signed on with our local Association of Retarded Citizens (ARC) to do respite work and had requested Meggie as a client. They took turns taking her out for several hours on alternate Saturdays.

Meg loved going on these weekend outings with her “girl friends,” and having these two wonderfully experienced providers was a big help to me as I was busy painting and decorating a newly converted attic bedroom that would become Meaghan’s once the baby arrived. I was anxious to get everything in place well ahead of time, as I wasn’t sure how Meaghan would take to the new quarters.

I didn’t want her to feel that she was being forced out of her old room, so I kept her old bed downstairs and set up its twin upstairs. This way she could fall asleep wherever she felt most comfortable for as long as it took her to adapt. Surprisingly, it didn’t take very long. She liked going up and down the “big” staircase and, because her new room was twice the size of her old, she enjoyed having the extra space to move around in.

Just when I thought I had everything under control where Meg was concerned, the May Center sent out a bulletin announcing that the school would be moving to a new site in Arlington in September. The move meant that Meaghan’s commute to and from school would be doubled. On top of this came the even more distressing news that Barb would be leaving the May Center at the end of August.

The problem with many private, year-round, highly structured and demanding special education programs, I was fast learning, was that you couldn’t afford to get too attached to any one teacher. The hours were long, the routine exhausting, and the pay not commensurate with the demands placed upon the teachers, so there was bound to be a high turnover of teaching staff. Even the most committed teachers eventually succumbed to the lure of higher pay for less work, and Barb was no exception. I didn’t begrudge her the opportunity, but I hated to contemplate the consequences of losing her at this crucial, transitional time, especially as the teacher who would be taking her place as Meg’s case manager had woefully little experience.

Before setting her loose in this new regime, we brought Meaghan back to Children’s Hospital for her semi-annual check-up with Dr. Kuban. I

mentioned her difficulties in performing certain gross and fine motor tasks, but Dr. Kuban assured me that he could find nothing significantly amiss with her overall strength, muscle tone, balance or basic coordination. We moved on to the subject of her seizures. Since Meg had been seizure-free for a year and a half, she had undergone another EEG procedure to determine whether she was indeed free of seizures. Unfortunately, the results showed that some spike activity was still occurring during sleep, so discontinuing her medication was not an option at this point. Fortunately, Meg continued to tolerate the Tegretol well.

“Is Meggie autistic, doctor?” Brian asked point blank at the conclusion of our visit.

I waited with baited breath to hear his reply, while Meggie sidled over to him and climbed up on his lap. “Rub,” she requested, taking hold of his hand and guiding it to her back.

“I wouldn’t say so, no,” Dr. Kuban answered without too much hesitation, as he began to stroke Meggie’s back. “If she was truly autistic, she’d hardly be sitting here with me like this,” he added with a smile.

I exhaled a sigh of relief. If one of the top neurologists at Children’s Hospital and a professor of neurology at Harvard Medical School was saying that my daughter wasn’t “truly autistic,” that was good enough for me.

I knew why Brian had asked the question. With the due date drawing ever nearer, we were both concerned about our second child, especially since we’d learned through amniocentesis that our baby would be a boy. We knew that boys were four times more likely than girls to develop autism so, had we been told definitively at this juncture that Meggie was autistic, we would have had good reason to be apprehensive about our baby. As it was, I was able to breeze through the final months of my pregnancy with some peace of mind.

Meaghan's May Center Class. Meg is second from the the left, next to Leslie, the teacher who doubled as her respite provider.

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Chapter Fourteen

Coming to Terms

Our second child was delivered by Caesarian section in the early morning hours of December 8th. He emerged from my bloated belly with a dramatically loud wail, a lusty cry that instantly reassured me about the condition of his lungs.

I looked over at Dr. Schey, who had elected to be on hand for the delivery, and saw him smile as he unclasped his hands and raised his bowed head from prayer. He accepted the bawling bundle from my obstetrician and, after a cursory exam, pronounced an apgar of ten. With my awestruck husband in tow, he then left to take the baby down to intensive care (a precaution taken with all caesarian deliveries) to be weighed and measured.

Within minutes Brian burst back in with the news that his twenty one inch son tipped the scales at a hefty nine pounds eight ounces. As my mother would claim, he was big enough to walk home from the hospital. The reassuring news allowed me to succumb to my anesthesia induced exhaustion.

I awoke an hour or so later when Brian stuck his head in the door of the recovery room.

“Where’s the baby?” I queried groggily.

“He’s right down the hall,” he answered with a grin. “Wait until you see him. Do you feel up to it?”

“Of, course,” I said. “Let’s go.”

He wheeled me down the hall to the babies’ room and, before I knew it, I was holding the beautiful baby boy we named Michael in my arms. I looked down at him and, miraculously, he opened his eyes and peered up at me. I

was initially struck by the vivid blueness of his eyes, but Brian pointed something else out to me.

“Look at how he looks directly at you,” he said.

I glanced back down and sure enough, our baby’s intent gaze hadn’t wavered. I couldn’t recall whether Meaghan had been so aware and focused in the hours immediately following her birth, but I did sense that there was a different aspect to this baby.

I know, of course, that it is unwise and unfair to make comparisons between one’s children; that every child is unique and should be appreciated for his or her individuality. But having been through so much heartache with Meaghan, Brian and I couldn’t help but feel a degree of fear and uncertainty about the fate of this second child we had brought into the world.

Michael certainly appeared robust and healthy enough, but so had Meaghan. We had learned the hard way that, in some cases, appearances can be deceiving. So we couldn’t help but seek out the smallest, most incidental signs that this beautiful, beloved child our ours would indeed be unique from his beautiful, beloved older sister.

After three days in the hospital, I returned home in a lot of pain and a bit of a postpartum haze, so it wasn’t until several days after my return that I began to notice that something was amiss with Meaghan. She was having severe, but intermittent, stomach pains. She’d clutch her belly and cry. The first few times she did this I blithely assumed it was due to gas, although she’d never experienced this kind of cramping before.

“Maybe she’s constipated,” suggested my mother, who was helping me out until I got back on my feet.

I was taken aback. Having survived Meaghan’s grueling toilet training, I thought we were over the hump as far as my daughter’s bathroom habits were concerned.

I called Brian’s mother, who had taken wonderful care of Meggie (and Brian) while I was in the hospital. I asked her if she knew whether or not Meg had had any bowel movements during the four days she babysat. She said she couldn’t recall any. She’d just assumed that Meg was going to the bathroom at school. I scanned the school notes for the previous week. There was no mention of any BM. I double-checked with Meg’s teacher.

Mom was right. Meg was not only constipated but, near as I could reckon, she hadn’t had a bowel movement in well over a week.

I kept her home from school and dosed her heavily with milk of magnesia, mineral oil and prune juice. I sat her on the toilet hourly. Finally, just as I was about to abandon hope, she went.

But our relief was short-lived as she did not go the next day or the next. I repeated the milk of magnesia, mineral oil regimen. For snacks she ate nothing but raisins, apricots and prunes. Finally, in desperation, I chopped up laxatives in applesauce and fed them to her. Still nothing. I was at my wits end as to what to do, and Meggie’s belly was so hard and sore that she moaned when she moved about.

“You have to give her an enema,” Brian’s sister, an experienced mother of three, pronounced at the family Christmas party.

This seemed an extreme measure, but by this time I was desperate enough to try just about anything.

It worked. But only for a day or two, and then the pain and cramping returned. I plied Meg with all manner of laxatives daily, but her stomach continued to become impacted every third or forth day, so we’d have to resort to another enema -- and then another. Meggie hated and feared these, and I worried constantly that she was becoming so traumatized by the whole toileting business that she’d never be regular again.

Fortunately, with all my problems with Meaghan, Michael proved to be a fairly trouble-free baby. He had a hearty appetite and a great disposition, if you discounted his daily fussy period, which occurred every afternoon around five o’clock. This, of course, was when I had the least amount of time or energy to comfort him, busy as I was trying to deal with Meggie’s discomfort and keep her busy and out of trouble while throwing something together for dinner. I eventually resolved the problem by bundling Michael into a Snugly stomach pouch, although by the time I contrived to strap the weighty, wailing bundle onto my body I was near tears myself.

I engaged in this precarious juggling act for several months until Michael began sleeping through the night and napping on a much more accommodating schedule, so that he awoke refreshed and cheerful in the late afternoon. He loved being played with and was delightfully responsive to the slightest overture, but when I was busy with Meaghan he was content to sit in his infant seat intently watching everything we did.

I had feared that Meaghan might be jealous of the attention given her baby brother, but from the first she was very loving and protective of him. If I was feeding him his bottle, she would sit quietly beside me, seeming to

understand that this was “his” time with mommy. She would bend over his infant seat and give him gentle kisses on his forehead, saying his name softly and sweetly. She never had a moment’s confusion over who Michael was, somehow intuiting his importance in her life.

As Meaghan’s fifth birthday approached, I decided it was time to put a stop to her suffering. Her constipation had lasted for three months, and I was afraid that if I let it go on much longer she’d lose all control. The longer she went without eliminating naturally, the worse the problem was going to become. On the advice of her gastroenterologist, I checked her into the hospital for a thorough abdominal-intestinal clean-out, which essentially meant doing what I had been doing only in a more extreme manner.

This accomplished and verified by x-ray, our next job was to insure that her system didn’t get backed up again. The regimen we were given to follow included eliminating milk products and carbonated beverages from her diet, dosing her daily with Agoral and requiring that she sit on the toilet for ten minutes following each meal until an egg timer I set went off.

Fortunately, the regimen worked and by Spring vacation I was able to eliminate the Agoral. This was the first time in four months that Meg had been regular and out of pain, and her whole disposition altered. She was more relaxed, happy and cooperative. She bounded about the house with a huge smile on her face. I’d almost forgotten that she could smile, she’d been feeling rotten for so long.

Meanwhile, Michael continued to grow. At six months he was a hearty, healthy baby, who was achieving developmental milestones with ease and evidencing appropriate interest in everything and everyone around him. He smiled and laughed a lot, loved being the center of attention and babbled endlessly. He readily reciprocated any overture, his big, blue eyes staring directly into ours with a gaze that was unwavering and very reassuring.

Michael certainly appeared to be developing on track, but I knew that it was too soon to be counting our blessings. I’d heard countless cautionary tales of adorable children who had evidenced no problems or signs of atypical development at all up until their second year. These children had changed overnight from bright, verbal, personable toddlers into silent withdrawn little strangers -- a sudden, heartbreaking regression for which there was no known cause or explanation. So, while I was pleased that Michael was doing so well, I couldn’t be certain that he would turn out all right until he reached thirty months, by which time, according to all the books I’d read, we’d be out of the woods, at least as far as autism was concerned.

Fortunately, Michael continued to be an easy, happy, problem-free baby during the second half of his first year, as I had my hands full with Meaghan. When she returned to school after April vacation, she returned to yet another new teacher. Her classroom performance deteriorated as she set about testing this new person in her life.

She also began having inexplicable mood swings, alternating between extremes of feistiness, silliness, crankiness or tearful sadness. One minute she’d be was very silly or “full of it,” and the next she’d be inexplicably sad and weepy. Her behavior was as erratic as her moods, although she was definitely becoming increasingly willful and testy. She’d taken to pushing back her chair or jumping out of it when she didn’t feel like participating in an activity and, if she didn’t get her way, she was apt to flop to the floor in protest. Her teachers were coping as best they could, but I knew that Meg’s unpredictable mood swings and testiness frustrated them as much as they did me.

Then there were days when Meg was as good as gold -- calm, quiet, perfectly behaved. On these rare days her teachers would write that she was the “star” of circle time, that she breezed through all her programs, that she was an absolute delight. We would all get a glimpse of what Meaghan was capable of doing. But the next day her behavior would revert to wild noncompliance. She’d either be too hyped up or too upset to do much of anything.

I wasn’t having an easy time of it at home either. When I tried to engage Meg in tabletop work, she’d come and sit with me willingly enough, but the minute I placed the slightest demand on her she’d begin to tantrum. This drove my husband crazy.

“Why do you bother?” he’d ask.

I was beginning to wonder about this myself. Why was I so desperate to get through to this recalcitrant child? The honest answer was, because I didn’t want to lose her.

I understood that there were two distinct facets to Meaghan’s personality. There was the sweet, loving, docile child, as well as the child that was difficult, impulsive and often out of control. I knew that Meaghan’s acting out was not deliberate. She lacked the ability to self-regulate her emotions and behavior. Not only did she have “funny wiring” in her brain, but her body chemistry was so sensitive that the slightest thing could set her off. I knew that if I let Meaghan have her way, her wild, impetuous self would win out. But there was that sweet, innocent, and I believed quite intelligent child inside her that I refused to give up on. I couldn’t jeopardize that inner

child’s potential by not bothering to try to teach or reach her. So I kept trying to get Meg to look and learn, even as she did her best to frustrate my efforts.

Actually, it was at about this time that both Meaghan and I were beginning to come to terms with her learning and processing deficits. When Meg was making wonderful progress during our home program and her first year of school, I had held out hope that she might eventually catch up enough to be able to play and talk fairly normally. But, the more I worked with her, the more I realized that no amount of training was going to get her to play and talk like other kids, because she did not think like other kids. Although she continued to pick up new skills, her overall development was diverging further and further from the norm.

All Meaghan’s play was rote, rehearsed and repetitious. She had absolutely no capacity to pretend. To her, a cup was a cup and a block was a block. It was not impossible for her to pretend that a cup could be a hat or a block could be a car, but she had to be shown how. She could not conceive of doing so on her own. One object representing another makes sense only if you can free the object’s identity from the object. The acquisition of this “disembedded thought,” so crucial to the development of imagination, was not something that came naturally to Meg.

With Meaghan every pretend play action had to be taught, practiced and generalized. Had I not modelled how to feed a doll a bottle, she would not have made the connection between the doll as a miniature person and the bottle as food. Had I not shown her how to make a car go, complete with “eerm” sound, she would not have associated a toy car with a real one and would have simply continued to clutch toy cars in her hand, as she still preferred to do.

Meaghan could imitate or re-enact play strategies that were demonstrated for her when she was cued to do so, but she couldn’t spontaneously come up with ideas on what to do with her toys. Nor did it ever occur to her to attempt to expand upon rehearsed play actions in any way; to combine them into a sequence.

Because of her inability to “free up” her mind, to process or experience more than one thought at a time, it was a struggle for Meaghan to vary her play strategies. Once she had been taught or conceived of a way to play with something, she stuck with it. The same rigidity applied to her speech. Because she could only focus on one thing at a time and that thing was usually need-related, her speech had not expanded appreciably beyond the rudimentary expression of her own wants and needs after two years of schooling and nearly a year of therapy. Since her thoughts were concrete rather than representational, her expression of those thoughts was bound to

be literal or instrumental rather than expressive.

In fact, all of Meaghan’s speech, like her play, was rote, rehearsed and repetitious -- or echolalic. She simply echoed back what others said to her. Her typical response to a greeting of “Hi, Meaghan” was to echo “Hi Meaghan” back. If I asked her a question she didn’t know the answer to, she would simply repeat the question back to me. Sometimes she’d modify her repetition a bit to turn it into an answer. If I asked her “Do you want juice,” for instance, she’d respond “want juice,” a reduction of my question that indicated that she was applying some thought to her phrasing. This mitigated echolalia was a small step in the right direction, as was Meaghan’s delayed echolalia. When she said, “Want juice” without being asked, she was still echoing a memorized phrase, but she was doing it spontaneously, after an interval of time.

By the age of four Meaghan had progressed from pure echolalia, the immediate and unaltered repetition of words and simple phrases to mitigated echolalia, the delayed and modified repetition of rehearsed words and phrases.40 Because of her ability to imitate, to expand and reduce language segments to suit her particular needs, Meaghan’s expressive skills appeared to equal or exceed her receptive skills at this stage. But, in actuality, both were impeded by the same gestalt roadblock.

Meaghan could not learn to use or understand words in a flexible manner because she perceived and processed the whole sentences she heard as one big clump or gestalt. If I said, for instance, “How would you like to go for a walk?” She heard and processed, “H-o-w-w-o-u-l-d-y-o-u-l-i-k-e-t-o-go-f-o-r-a-walk?” For comprehension sake, she tuned into the parts of the syntax that had come to hold meaning for her, “go” and “walk.” The rest of the words, because they were all clumped together in her brain in a perplexing gestalt, she dismissed as irrelevant.

And, because she wasn’t attaching meaning to individual words, she wasn’t able to comprehend their use in different combinations or circumstances. Just as she acquired language in familiar chunks, she understood language in familiar chunks. If a question or instruction was phrased in a way other than the way she was accustomed to hearing it, it was difficult for her to comprehend.

A humorous example. One day Meaghan and I were walking at Breakheart Reservation, a place we frequented for our outings. At one point during our walk, I happened to ask her, “Where are you?” Rather than responding with the familiar place name, she replied simply, “Here I am,” using a phrase I had conditioned her to use when I wasn’t certain of her whereabouts in the house. Rather than considering the context of the question and actually thinking about her answer, she gave me a senseless (though undeniably

accurate) response. When I then asked, “Where are we?” she responded correctly, “Breakheart Reservation.”

At this point Meaghan’s language consisted solely of the rehearsed repetition of single nouns and one or two word combinations because the supplementary connecting words necessary to advance her speech to the sentence stage did not as yet exist for her as words. Beyond this, it never occurred to her to expand upon her rudimentary phraseology to give her utterances more meaning. She’d always ask to “go car ride,” rather than telling us some specific place she wanted to go. As far as she was concerned, the fewer words she had to use to get her point across the better. More words meant more thought and, if there was one thing Meggie hated, it was having to actually think about what she was saying.

It took her speech therapist, Jean, months to get Meaghan to utter a few simple, “spontaneous” comments, but these comments were never original. If Meaghan said “I see a dog” when looking at a picture of one, it was not because she was enthralled with the dog and wanted to talk about it. It was because Jean had modeled this phrase repeatedly.

For the most part Meg’s utterances still consisted of cued and context specific object and action words. She would expand her responses from a single word to multiple words without prompting if reactions were delayed, but her expanded utterances remained echolalic and situation specific. When Meaghan and I took walks together, rather than remarking on some interesting sight or attempting to share her thoughts, she would succinctly comment “step down” or “cross street,” echoing phrases I’d used countless times in trying to make her more aware of her actions. Nothing Meaghan said or did was original because she did not apply thought to the process of expressing herself.

She simply was not able to think the thoughts, much less put together the words, that would enable her to communicate more than the basics, and I was beginning to suspect that no amount of speech therapy would change this, especially as Meaghan’s behavior at the sessions, like her behavior in the classroom, had deteriorated to the point where it had become a struggle for Jean to get her to comply with even the simplest exercise. As I saw it, a lot of effort (and expense) was being squandered for minimal gain.

Moreover, the half hour evening drive to and from the hospital had become downright dangerous, as Meg had taken to worming her way out of her seat belt and flopping down on the car floor. I’d pull over and stop the car, get her resettled and refastened in her seat, only to have her repeat the stunt the minute we were underway again.

I wasn’t sure what all Michael was making of his big sister’s antics from his back seat vantage point, but I did know that he was taking it all in. My greatest fear was that he might one day come to regard his older sister as a delightful role model.

Meggie with her new baby Brother, Michael. Look at how he is looking at her. Little does he know what's in store for him.

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Chapter Fifteen

What’s in a Name?

If Michael was being influenced by his sister’s strange behavior, he showed few signs of it. In fact, he was rapidly coming into his own as a little boy. He took his first steps at eleven months, on his father’s birthday.

He’d made a pal out of our aging cocker spaniel, Shaunie, and delighted in chasing him around the house, trying to interest him in playing “ball.” He had half a dozen words, responded instantly to his name and understood everything that was said to him. He waved “hi” and “bye,” blew kisses, gave ‘high fives’ and used his index finger to point at all manner of things he wanted to share with me. He loved to explore, to climb, to maneuver his toy cars and trucks around the room, but his favorite pastime was looking at books. He would climb up on my lap and sit there contentedly, pointing to pictures in picture books and listening intently as I read him Mother Goose rhymes and fairy tales. He was interested in and curious about everything and had a prodigious memory, I thought, for a one-year-old.

The contrast to Meaghan’s behavior at one year was striking. She hadn’t been nearly so interested, interactive or intentional and yet, according to all the baby books, she had been on target in meeting all the developmental milestones. Would I have caught onto her delays sooner had their birth order been reversed? Probably. Certainly, with Michael’s example of “normalcy” to judge by, I’d have suspected something was amiss with her mounting aloofness. Then again, I might have attributed the difference to her unique personality rather than to her unique problems.

Now, however, I knew better. I’d had three years to come to terms with the reality of my daughter’s “funny wiring.” I knew that her problems were serious, possibly severe, and that there would be no quick-fix. I was rapidly facing up to the fact that a time would come--sooner rather than later -- when Michael’s development would overtake his older sister’s. This thought saddened me. But what troubled me most was my uncertainty over Meaghan’s diagnosis. Her paperwork still described her problems as “developmental delay with a seizure disorder and atypical behaviors.” What did this really mean? Was my daughter retarded or autistic or both? Or was there possibly some other explanation for her delays; some undetected cause or condition and, more

importantly, some treatment option we were overlooking?

Seeking answers to these questions, Brian and I brought Meaghan into the National Birth Defects Center in Boston. We had sent ahead all the pertinent records and reports from NSCH, her pediatrician and her neurologist, so Dr. Angela Lin, the geneticist assigned to Meaghan’s case, already had considerable familiarity with her before our meeting. She spent two hours with the four of us, patiently answering our questions and asking many of her own. She observed Meaghan as we spoke.

Meg spent most of the time up on the examination table, humming to herself and repeatedly taking her shoes and socks off and putting them back on again. Every now and then she would climb off the table and come sit in our laps, asking to be rubbed. She went readily over to Dr. Lin and was very cooperative during her examination, but she didn’t respond verbally to the Doctor’s attempts to engage her.

“She’s a beautiful child,” Dr. Lin said. “Absolutely perfect. No birth defects, facial or physical anomalies, so I doubt very much that there is an underlying genetic condition.”

We waited with baited breath to hear more.

“Her records show a normal result of the chromosome analysis she had done back in 1987, but if you’d like we could run a blood test for Fragile X syndrome.”

“Do you think she has Fragile X?” I asked, instantly alert.

“There is no physical indication of it,” Dr. Lin responded honestly, “but for completeness sake it would be a good idea to rule it out as the cause of Meaghan’s developmental delays and autistic-like behaviors. Also, we could conduct urine tests to screen for amino and organic acids, although again, given her normal height, weight and physical condition, I doubt very much that we’ll uncover any significant metabolic problems.

“As for the stereotypic hand movements you expressed concern about, Mrs. Buckley,” Dr. Lin continued, “they don’t seem to be the excessive type characteristic of Rett syndrome. Many other features of this syndrome are lacking as well, such as the fact that Meaghan hasn’t had a prolonged period of normal development, her head circumference is not lagging and there has been no deterioration in her overall skill level.”

“So how do you explain her repetitive “Wheels of the Bus” movement?” I asked. Recently, Meg had begun to rotate her hands, round and round, in the gesture used with the familiar song.

“I haven’t observed it here and, as you say, she only does it sporadically, so I’d surmise that it’s of a self-stimulatory nature. But I have observed her taking on and off her

shoes, so I can see that she hasn’t lost the ability to use her hands purposefully, as children with Rett syndrome eventually do.”

My eyes widened. I’d never realized how many sad and scary syndromes there were out there. I steeled myself. “Meaghan’s never flapped her arms and hands, as I know many autistic children do, but she does occasionally flick one hand, kind of twist it from side to side. Given these self-stimulatory gestures, her significant language, play and social deficits and her various behavior problems, I can’t help but feel that she probably is autistic. What do you think?

“I believe that a diagnosis of Pervasive Developmental Disorder would best characterize her condition. She does fit into the autism spectrum clinically, but she isn’t classically autistic.”

Was this subtle distinction supposed to reassure us?

“How did this autism come about?” Brian wanted to know. “I mean, if there’s nothing genetically wrong with her, and her CT scan shows no brain aberration or disformity, why is Meaghan the way she is?”

“I wish I had an answer for you,” Dr. Lin admitted with a rueful smile. “But my expertise is in genetics and, although some children with autism have contributory genetic factors, this is not the norm. No one knows as yet what causes autism. In Meaghan’s case, since there is no underlying etiology, I agree with Dr. Kuban’s assessment of “cerebral dysgenesis.” Her problems, which I’d judge to be confined to her central nervous system, are probably prenatal in origin and, as there are no anatomic abnormalities, the pathophysiology probably lies at the histologic (cellular) or biochemical level.”

“Would Magnetic Resonance Imaging be able to tell us anything more?” Brian asked. We both felt that, if only we could pinpoint a concrete problem, there might be a way of remedying it.

“An MRI would provide additional imaging of Meaghan’s brain structure,” Dr. Lin confirmed. “In contrast to the CT scan, the MRI would be able to distinguish between gray and white matter migrational abnormalities and, if such heterotopias were detected, it would be compatible with her seizure disorder, developmental delays and behavior problems. But having such an explanation for her condition would not alter the way you are managing it. There would still be no effective treatment beyond the educational options you are already pursuing.”

“You couldn’t help her with any services here?” I asked. I’d heard such great things about the work being done under the aegis of the Genesis Fund, I’d hoped they could help Meg.

“I’m afraid not,” Dr. Lin shook her head, sincerely sensitive to our plight. “Not as long as

Meaghan’s condition isn’t of a genetic nature,” she explained.

This was not all bad news. In fact, I was rather relieved that Dr. Lin didn’t suspect any genetic basis for Meg’s problems. To my mind, this meant that they were not irreversible. I could still hold out hope that some magic pill or potion might be discovered down the line that could either remediate her anxiety-driven behaviors or do away with them altogether.

Fortunately, the analysis of the blood Meg had drawn that day came back negative for Fragile X, and her urine screening for amino and organic acids yielded negative results as well.

We met with Dr. Kuban at Children’s Hospital on Christmas Eve, and he approved our scheduling of an MRI. The test was performed in early January and the results were completely normal. As far as Dr. Kuban and his fellow neurologists at Children’s Hospital could discern, there wasn’t a thing wrong with the architecture of our daughter’s brain.

So, although we now had a definitive label for Meaghan’s condition, Dr. Lin was right. We had no further clue as to the cause and not much hope of a cure beyond education.

In November, a bulletin arrived from the May Center announcing more staff reshuffling. Leslie, who had taken over Barb’s post as head teacher, had resigned and another teacher had been promoted to the position. This departure of the “old guard,” of the last of the teachers who had any longstanding familiarity with Meaghan, prompted me to think seriously about her future at the school.

It wasn’t just the deterioration of Meg’s behavior that concerned me, it was the overall levelling off of her learning. I suspected that she had come as far as she was going to come with behavioral modification. She wasn’t making the gains she had made in the program initially, probably because she had become inured to the routine. I myself was growing impatient with the endless trials and unrelenting data taking, where a child’s one bad day could regress her progress in any or all areas by a full week, time and time again. Although I was indebted to the May Center for the considerable developmental headway Meg had made in the two years she had spent there, I felt the time had come to move on.

Having made up my mind, I made no secret of my intent to seek out another placement. Meg’s teachers and the administrative staff were very gracious, making every effort to cooperate with my search, but our options were limited. Clearly Meaghan was not ready to participate in a regular Kindergarten classroom, as Ruth had so optimistically predicted back in our home program days. Even with a trained aide, she would have been lost. There were no options for her locally, Lynnfield being such a small community and Meg’s needs being so unique. I did go and observe several special needs classrooms

in the public schools of other towns, but nothing I saw looked right to me.

Just as I was resigning myself to Meg finishing out the school year at the May, I got a call from our Sped Director, Denise Christian, inviting me meet with her and Beverly Hegedus in her office. She said they had an exciting proposition to make me. At the meeting they informed me of a pilot program that Lynnfield and several neighboring towns were launching in conjunction with the Boston-based Language and Cognitive Development Center. Denise said that she felt Meaghan would be a perfect candidate for this new program.

The proposed classroom would be in the neighboring town of North Reading, so Meg would not have to travel so far to school every day and could be more effectively monitored locally, Also, if Meaghan attended this program, she’d have the opportunity to observe and interact with typical peers during her school day, as there were several other preschool and kindergarten classrooms in the building.

Beverly Hegedus then took the floor to describe some distinctive features of the LCDC methodology, such as how the children walked around on elevated platforms to keep them focused on tasks and sat at tables uniquely designed with body conforming indentations rather than desks. This sounded rather bizarre to me, and I let both women know that my preference was to have my daughter educated in a more typical school environment.

I won’t say that our Sped Director pressured me, but she was blunt in informing me that she knew I was looking at other schools, and that it had been largely with Meaghan in mind that she had consented to Lynnfield’s participation in the LCDC collaboration. In fact, Meaghan and another little Lynnfield boy would be the only two pupils in the classroom initially, which meant that until the class expanded, the staff to teacher ratio would be one-on-one.

“Would you at least consent to having Meaghan evaluated for the program?” she asked, as if I actually had a choice.

“Of course,” I agreed, thinking no harm could come from taking a look. It wasn’t as though I had a slew of other options.

Brian and his most precious possessions.

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What’s Going On?

ATYPICAL DEVELOPMENT AND THOUGHT PROCESS

Why are toddlers with autism able to walk but not talk?

The simple answer is that not all the actions or movements we learn to make require conscious attention or volition. Sitting up, crawling, standing and walking are reflex motions or postural reactions that are centrally programmed into the brains of most toddlers.41 When their nervous systems reach a certain level of maturity, they are automatically able to do these things because these movements do not require complex sensory processing; they do not require conscious attention. Talking, on the other hand, and in particular learning to talk, requires very complex motor planning and concentration.42

How might the early or late onset of autistic symptoms influence whether or not a child speaks?

Temple Grandin has posed an intriguing theory about the timing of sensory processing problems that result in autism. She hypothesizes that “oversensitivity to touch and auditory scrambling prior to age two may cause the rigidity of thinking and lack of emotional development found in (children with) Kanner type autism.”43 These children begin to recover the ability to understand speech between the ages of two and three and generally go on to develop some language.

On the other hand, children who develop relatively normally up until the age of two before regressing into autism are less likely to re-acquire the language they lost. They may be more emotionally normal, however, “because the emotional centers in their brains have had an opportunity to develop before the onset of sensory processing problems.”44

In short, if autism manifests itself in infancy, early parent-child bonding is most disturbed, affecting a child’s ability to form emotional attachments. If the syndrome manifests itself in toddlerhood, when sensory systems are

more mature, the parts of the brain that control the acquisition of language are most affected.

Why is autism often so belatedly diagnosed, and how can you tell if a child is at risk for developing autism?

Autism is an invisible handicap. There are generally few obvious outward manifestations of this neurobiological phenomenon. Even the most sophisticated neuro-imaging machines often fail to detect any abnormality because the underlying problem is most likely chemical rather than structural. Also, the syndrome usually doesn’t manifest itself in any diagnosable way until a child is old enough to have developed a repertoire of abilities. Some children develop those abilities just fine and then wake up one morning and they’re gone, never to return. But whether autism creeps in stealthily or invades by precipitating a sudden regression there are some unmistakable tip-offs that some force is at work disrupting the way a child thinks and perceives the world around him in the way he behaves.

You may have a problem if, by age two, your toddler:

1. Isn’t looking at you in the eyes with communicative intent;

2. Isn’t recognizing and responding consistently to his/her name or the names of others in your household;

3. Isn’t very interested in speech or in learning to talk;

4. Is more alert to sounds than to voices;

5. Isn’t laughing or smiling in response to praise;

6. Isn’t pointing or otherwise attempting to solicit your attention;

7. Isn’t wholeheartedly reciprocating your affection;

8. Is content to play autonomously most of the time without seeking out your praise or approval;

9. Is showing a preference for one or two toys and ignoring the others;

10. Isn’t vocalizing or babbling to his/herself when he/she plays;

11. Isn’t missing you when you leave the room;

12. Isn’t showing an interest in the activity of his/her peers;

13. Isn’t imitating simple gestures or words;

14. Isn’t responding to simple yes or no questions with a nod or head shake;

15. Is evidencing finicky or peculiar eating preferences or habits.

How does the autistic thought process differ from the norm?

What and how we think is a function of the meaning we give to the sensations we experience. It takes a fully functional neural connection network to fully understand what we see and hear. If this network is lacking in any way, the meaning of visual and auditory information would be distorted or diminished and, if this crucial distal information is incomplete, our thought process as a whole would be incomplete.

Most peoples’ thoughts move from the general to the specific but the reverse seems to be true with autism. Temple Grandin claims that her thoughts move from video-like specific images to generalization and concepts.45 This difference may be attributable to the level of associative processing. In the ‘normal’ brain association tracts are well established, allowing impulses to complete the full processing circuit before an idea or perception is formed. In the autistic brain, sensory impulses may get held up in one lobe or another before being released and relayed in a haphazard way on to other lobes, accounting for the restrictive or fragmented nature of autistic thoughts.

Uta Frith aptly uses the metaphor of a jigsaw puzzle persisting as fragments or a bunch of pieces even when put together to characterize the autistic mind-set.46 For people with autism, meaning is derived from parts of sensory experience rather than from the whole. They are able to make simple, concrete connections and associations but have a hard time fathoming abstract ideas and concepts. The degree to which some individuals with autism are able to advance to the conceptual thinking stage may well depend upon how actively and often the final-stage associational circuitry is engaged.

What is a theory of mind, and how might the lack of it affect the autistic thought process?

One abstract concept a child must figure out early on in order to develop a normal personality is the concept of other minds. Normal toddlers instinctively understand that others have a mind capable of thinking and

comprehending things the same way as their mind does.47 This belief, or theory of mind, is notably absent in autistic children, because their fragmented circuitry only allows them to carry the thought process of others’ minds as far as their own thought processes take them. As Uta Frith puts it “autistic children make no distinction between what is in their mind and what is in anybody else’s mind.”48

At an autism conference I attended a while back, one of the lecturers related an experiment he conducted relating to this theory of mind. He brought several high functioning autistic boys into his office and showed them a band-aid box. When he asked them what they thought was in the box, they naturally responded “band-aids.” He opened the box and showed them that there were crayons inside, not band-aids.

He then closed the box and returned with the boys to the reception area where their parents were waiting. He showed the parents the box and asked the autistic children what their parents would say was inside. Each one thought his parent would say “crayons.” Because they knew the secret of what was really inside, they assumed that their parents would know as well--regardless of the fact that their parents logically had no way of knowing that a substitution had been made.

How might a lack of or limited theory of mind cause or compound problems with interaction and communication?

Look into the eyes of young children with autism and you won’t find much expression. As a rule they don’t use their gaze to communicate, to either convey what’s in their minds or to try to read the minds of others, because they don’t understand the minds of others. Neither do they bother to point things out to their caretakers because, lacking a theory of mind, it simply never occurs to them that there is any need to do so. Presumably, the other person is already aware of what’s on their minds. By the same token, children who believe that others have the same thoughts

and feelings as they do would feel little compulsion to communicate anything beyond their basic wants and needs.

As autistic children mature, many of them do develop a limited theory of mind. They figure out that others think and feel, even perceive things differently, but they often fail to appreciate that others might have different interests or intentions. They don’t assess or evaluate what they hear, nor do they infer, intuit or grasp intangibles. A person with autism could have a genius I.Q. and yet be unable to tell a story or get a joke. People with autism tend to take everything at face value. Nuances, shades of meaning or hidden meanings, irony and witticisms generally escape them. Their

expression of language is concrete and instrumental, their comprehension, excessively literal.

How does the fragmented processing of sensory impulses factor into the restrictive and repetitive behavior and thought patterns characteristic of autism?

The author Uta Frith theorizes that “repetition is the natural setting for (the sensory) input and (motor) output systems (in the brain), and that they are normally stopped from repeating when their products are acknowledged by a high-level central monitor. Such acknowledgement signals for the input device to start processing new information and for the output device to change to a new action.”49 But, if we assume sensory impulses are short-circuited at the association level in the autistic brain, they might never reach the “higher level context using mechanism” so that they can be “switched off.” They might just keep looping around and around the dysfunctional circuitry, causing thoughts and actions to get stuck in a repetitive, restrictive mode.

Fragmented perceptions continuously looping around poorly established association tracts might result in a thought pattern that is not just perseverative, but is excessively associational as well. Temple Grandin postulates that it is the inability to stop endless associations (rather than the inability to associate) that causes more severely impaired autistics to have difficulty keeping their minds on track.50

What is the nature of the autistic spectrum and how does knowing where a child falls on the continuum help to determine prognosis?

Temple Grandin writes: “It appears that at one end of the spectrum, autism is primarily a cognitive disorder, and at the other end, it is primarily a sensory processing disorder.... At a midpoint along the spectrum, autistic symptoms appear to be caused by equal amounts of cognitive and sensory problems. There can be mild and severe cases at all points along the continuum.”51 She goes on to suggest that there is a continuum of visual and auditory processing as well, which goes from fractured, disjointed images at one end to a slight abnormality or oversensitivity at the other.52

This would certainly explain why every child presenting with autism is unique. The latitude of variations in symptoms, not to mention the behavioral manifestations of those symptoms, would be broad indeed given such an all encompassing spectrum. But, if one can pinpoint where an autistic child falls on the continuum, it might prove a useful indicator of how much educational intervention is required or how useful or successful that intervention might be. Put another way, the level of cognitive functioning

and sensory scrambling has a direct bearing on how well interventions work.

For example, young autistic children with severe sensory scrambling would have to work so hard to make sense of what they saw and heard that the temptation would be to give up the struggle and just tune out--or act out in frustration. If these children were severely retarded as well, there might be little you could do to help them cope and connect with the world around them. But, if they were not seriously impaired cognitively, it would be possible to reach them through education. They could be taught to use their intelligence to control and accommodate their sensory processing limitations, as Donna Williams was able to do.

Children with mild to moderate sensory distortion and mild to moderate retardation would need more intensive education and intervention to achieve this control and accommodation but, with hard work and the right type of training, it could be done.

Children with high functioning autism or Asperger’s syndrome probably have mild to moderate sensory problems with normal to above normal I.Q.s. These children generally fare pretty well in school. Many even excel in the classroom because much of academic learning is concrete. Facts are facts, and the autistic mind is able to process facts with relative ease. The problems of high functioning autistics generally manifest themselves later in life when they attempt to make a go of it out in the real world, where “people skills” count for much more than mere intelligence.

As smart as she was, Temple Grandin had to fall back on the use of concrete symbols to understand such abstract concepts as getting along with people and moving on to different stages in her life.53 To understand and get along with others, a mind must be able to access and make rapid associations among a wide range of ideas and experiences, and this is where the processing of even the highest functioning autistic falls short.

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Chapter Sixteen

She Has a Way About Her

The first week in December I brought Meaghan to the handsome, three story brick building that housed LCDC in Jamaica Plain, a rather dreary, downtrodden section of Boston. Meaghan and I were greeted cordially by Dr. Arnold Miller, the founder and Director of the program, and his wife and LCDC’s co-founder, Eileen Eller-Miller. He’s a psychologist and she’s a speech-language therapist. Together, they conceived of and developed every aspect of what they term the cognitive-developmental systems approach they use to treat and teach children they characterize as “disordered.”

They ushered Meaghan and I downstairs to a large, gym-like room in the lower level of the school building. Inside were all manner of odd looking wooden structures -- planks and platforms, tunnels, steps that tilted, a complex climbing structure with a long slide and, in the center of the room, a big red ball suspended from the ceiling on a long rope.

The Millers began the evaluation by having Meaghan take off her shoes and climb steps to a six foot long board suspended three feet above the ground between two sets of steps. The idea behind this elevated platform, the Millers explained, was that most disordered children have a poor sense of their bodies’ boundaries, and the “edge experience” produced by the elevated boards helps to focus their attention, to heighten their awareness and concentration.

Initially, Meg merely had to walk across the board and descend the steps at the other side while Mrs. Miller cued “Up, up,” “Walk, walk” and “Down, down.” When Meg reached the ground she was immediately guided back to the “up” steps and the exercise was repeated, only this time I was instructed to stand at the other end of the board and call her to “Come, come.” When Meg reached the floor at my end, the Millers stood back and watched to see if she would cross over to the “up” steps on her own, whether she had internalized the ritual.

Next, they removed a five inch centerpiece from this Primary Board platform, so that Meg had to straddle this gap as she made her way across the board to me. She did so, but not without considerable fear and hesitation and some assistance from Dr. Miller. Then, the centerpiece was replaced but another, more formidable obstacle was added--a vertical fence-like barrier placed diagonally across the length of the board. This barrier, which the Millers called the Anticipation Board, had three gradations of height, so that while it was relatively easy to step over at one end, if Meg reached the other, higher end before stepping over it, not only would she be barricaded from reaching me, but, because of the narrowness of the remaining space, she would be forced off the platform altogether.

What the Millers were trying to assess was whether Meaghan had the ability to address more than one task at a time--walking towards me and climbing over the fence--and could she anticipate the outcome of her actions. Could she figure out that to reach me she had to step over the lower end of the fence so that the platform would widen rather than narrow as she proceeded toward me. She was eventually able to negotiate her way over to me, but it took several trials, a lot of cuing and some physical support.

Next, Meg had to traverse another elevated structure the Millers referred to as the Swiss Cheese Board. This board was three feet wide, eight feet long and interspersed with a variety of irregularly shaped holes. The challenge here was for Meg to make it from one end of the board to the other without stepping in the numerous holes. I was to stand at one end, and call her to “Come,” while Mrs. Miller guided her across, holding her arm so she wouldn’t fall.

The Millers were interested in Meaghan’s response to the holes. Did she step into them, over them, or around them? Did she have to feel them to sense them or was she able to keep track of them visually? And, if she did step into one, was she able to learn from the experience and subsequently avoid mis-stepping? Also, could she integrate the two tasks of avoiding the holes while looking my way in response to my beckoning. Meg clearly wanted to reach me, but it was difficult and frustrating for her to have to split her concentration.

Next, Meg was tested on the slide. She had to climb up steps, sit down and slide down, while Mrs. Miller again narrated “Up, up, Sit down” and “Down, down.” When Meg reached the bottom I was to call her right over to the steps to climb up again. We repeated this sequence until Meg got the hang of it, although she still hesitated at the top and bottom of the slide, looking to us for guidance. Dr. Miller then attempted to expand or complicate the sequence by telling Meg to “Stop” at the top of the slide and handing her a block. “Block down,” he instructed. Meg glanced at him uncertainly,

confused by this change in the game plan. He pointed to the block in her hand and repeated “Block down.” She reluctantly let go of it and it tumbled down the slide. Now, “You, Meaghan, down,” he commanded and she complied, although she was clearly growing tired of the ritual. She’d had enough of slide.

We let her wander about and wind down for several minutes. She was attracted to the eye-catching, red ball hanging in the center of the room, and Dr. Miller gave her a few minutes to play with it before he intervened. He had Meg stand on one side of the room, with me behind her, while he positioned himself across the room from us. “Here it comes,” he announced as he swung the ball toward her. Meg reached out her hands, anticipating its arrival, and caught it. “Push,” Dr. Miller prompted. I leaned over to assist her but Meg surprised me by complying on her own to his request. Dr. Miller swung the ball to Meaghan several more times, from different directions, assessing her ability to visually track, anticipate and reciprocate. She did quite well.

The next several tasks were conducted at a table. Dr. Miller brought out a box of large, natural wood blocks and began to stack several of them. He then handed a few to Meg and watched to see what she would do with them. After a brief hesitation, she put one block on the stack and then the other. Her attention began to wander and Dr, Miller clapped his hands, handing her another block. “Put on,” he cued. Meg put it on lopsidedly and, although we could tell that the tower was about to topple, Meg gave no indication that she was aware of this, nor did she seem particularly interested when the tower did collapse. She showed no initiative in rebuilding it.

Next, Dr. Miller took a block and threw it back into the plastic box. He handed one to Meg and she dropped it into the box lackadaisically. He picked up another block. “I go,” he said, tossing the block into the box with exaggerated emphasis. “You go,” he said, and waited for her to join in the game. She did. Little did he know that she far preferred this activity of “putting away” blocks to actually playing with them. She did pretty well complying with the “I go/You go” turn-taking aspect of the game as well, although if Dr. Miller delayed taking his turn, she would just go ahead and throw her block in the box, evidencing more regard for the ritual than for him.

Meg was not nearly so proficient at the next task. Dr. Miller placed a soda cracker on the table out of Meg’s reach. He then positioned a wooden, blunt-edged rake on the table near the cracker and waited to see whether she would take hold of it and pull the cracker toward herself. She opted instead to attempt to climb up on the table to get to the cracker. I set her back down on the floor while Dr. Miller modeled the use of the rake. He then

repositioned the cracker and rake, putting the cracker inside the crook of the rake, so all Meg had to do was pull it. This she did and quickly gobbled up the cracker. But when he complicated the task by placing the cracker behind the rake, Meg could not figure out how to lift the rake to cover the cracker before pulling it towards her, and she grew increasingly frustrated in her attempts. We gave her some crackers to munch on and moved on.

The next task involved the stacking plastic coffee cups and bowls. Dr. Miller began by stacking two coffee cups right side up and handing a third to Meg to stack. She complied by putting her cup inside the others. After stacking several cups right side up, Dr. Miller had her take turns stacking the cups upside down. So far, so good. Now came the interesting part. He stacked two cups right side up again, but when he handed Meg a cup he inverted it. “Put on,” he cued. She attempted to comply, but since her cup was upside down it didn’t fit inside the others. It surprised me that it didn’t occur to her to first turn the cup over.

Next Dr. Miller tested her discrimination ability by alternately handing her a cup and a bowl right side up to place on stacks of each several inches apart. At first, he carefully handed her the cups over the cup stack and the bowls over the bowl stack, so her sorting job was a relatively easy one. Then he complicated matters by handing Meg the cup over the bowl stack. Her initial response was to just put the cup down where it was handed to her, having fallen into the pattern, but she caught herself and was able to sort correctly. What really threw her was what Dr. Miller did next, not only handing her the cups and bowls over the wrong stacks, but inverting them before handing them to her. This dual challenge of turning the cups over and placing them in the correct stacks proved too much for Meg. She couldn’t sustain attention to the task long enough to follow it through. It was becoming clear to me that Meaghan participated willingly and well in tasks as long as she didn’t have to apply much thought to what she was doing.

The evaluation was almost over. There was just one more thing Mrs. Miller wanted to try.

“Can Meaghan read,” she asked me.

“No, she can’t,” I answered, a bit taken aback.

“Can she identify pictures,” she asked.

“Some,” I hedged, “provided they’re of familiar things.”

“Could she identify a cup, a bird, a cat and a gun?”

“All but the gun, I suppose,” I said, a bit leery about why a gun should be a familiar sight to any young child.

Mrs. Miller seemed satisfied with my responses and brought out several packets of flash cards. She took one of the spiral bound packets and showed Meaghan the top card--a black and white picture of a cup. Meg identified it. Mrs. Miller then flipped the two cards below it and the contours of the picture shifted so that the image of the cup transformed itself into the word “cup.” She repeated this fascinating procedure with the other sets of cards. A picture of a cat became the word “cat.” A picture of a bird became the word “bird.” Meg named the pictures and “read” the words. Mrs. Miller then just showed her the conventional word cards and, amazingly, Meg was able to recognize “cat” and “cup.”

“Could you really teach her to read?” I asked.

“I see no reason why not,” Mrs. Miller replied with a smile. “As long as she is able to identify pictures, we can build upon that skill using our Symbol Accentuated Reading Program.”

Take a look at this,” Dr. Miller interjected. He showed me a toy dog with a detachable head. He then showed me a card with a black and white rendering of the body of a dog with a hole cut out where its head should have been. He inserted the three dimensional toy dog head into the hole and voila, the picture was complete. He then flipped to a completed two dimensional picture of a dog.

“This is how we train our children to identify pictures. It helps them to understand pictures as representations of real things,” he explained proudly.

I shook my head, awed and not a little impressed by the sheer ingenuity of their work. Never had Meg undergone such a painless, appropriate and worthwhile evaluation. All of the conventional, standardized tests that her various therapists and diagnosticians had used on her to date had been designed for typical children, assuming a mind-set that was readily able to process, assimilate and respond to a preponderance of verbal or visual input without distraction or confusion. Unfortunately, such standardized tests did not take into account perceptual variations, or the unique or “disordered” mind-sets of children like Meaghan.

By contrast, the evaluation that Meg had just undergone, which the Millers termed the Umwelt Assessment, was clearly devised and designed specifically for children with such “disordered” mind-sets. There were no right or wrong solutions. There was no ultimate score that would reflect how well or poorly Meg measured up to the norm. The Millers hadn’t expected

her to perform every task correctly. If she had, she didn’t belong in their school. What they had expected, and what Meaghan had demonstrated, was that she had unique ways of coping with and responding to the demands they had placed upon her. Clearly, her perception of reality was different from the norm, and this distorted way she experienced the world around her was affecting her overall level of cognitive and communicative functioning.

In order to address these deficits, to devise effective interventions, the Millers felt it was imperative first to pinpoint the stage at which Meaghan’s development got held up or stuck, figure out the reason it got stuck, and then intervene at the sticking point in a developmentally appropriate manner to address her shortcomings and smooth the path for further progression. In order to do this they had to figure out exactly how Meg “ticked.” How did she process and interpret information? How readily was she able to learn from experience or repetition (to form what they termed “systems”)? How did her limited body awareness factor into her overall coordination and task performance? How much was her distractibility impinging upon her problem solving capacity? And, perhaps most important, how did she tend to relate to others?

I was not privy to all the information the Millers gathered about Meaghan during their two hour assessment, but they did tell me that they felt she would indeed be an appropriate candidate for their program in North Reading. They felt that, while she had some good skills, few of her actions showed intention. She evidenced little control over her environment but was rather acted upon by it. They suggested that one of the reasons her language was not progressing was that, although she had a lot of words, many of them were not solidly grounded in experience. They felt that their cognitive systems approach would benefit Meaghan significantly and, based on what I had just seen them do, I was inclined to believe them.

But I was still leery of committing Meg to a venture sight unseen. I would have felt a lot better had the collaborative classroom actually been set up and operational. The Millers led me on a tour of their school, and I was able to observe several classrooms so I could get the gist of what they were proposing to do in North Reading. But I had to take it on faith that the teacher they had hired was as good as they claimed she was, and that the services the children were receiving here would be duplicated in their satellite setting.

“Of course, Mrs. Miller and I are going to be very much involved in the new classroom,” Dr. Miller added, noting my hesitation. “We both intend to spend at least one full day a week there, possibly more if we can arrange it.”

This assurance ultimately convinced me, as I felt the couple were highly intelligent, motivated and caring. I would take the gamble. I informed Steve

Anderson and Meg’s teachers that she would be leaving the May Center at Christmas break. She would then have two weeks of vacation before beginning her new school experience in the New Year.

Send in the clowns. Meg and Mike dressed up for Halloween 1991. Not going to scare away very many "trick or treaters," huh?

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Chapter Seventeen

The Theory Behind the Practice

Meaghan’s experience at the LCDC-SEEM collaborative began promisingly enough. I liked her teacher, Lisa, very much. She struck me as very capable and knowledgeable and was eager to work with Meaghan. Lisa had an aide, Jill, and, as there was only one other child in the classroom initially, Meaghan and this other little boy received a lot of one on one attention. In March, another student was added, but the ratio was still favorable. I was only slightly concerned that Meaghan’s two classmates were two years younger than she and both non-verbal.

At the time of Meaghan’s intake evaluation in Jamaica Plain, Dr. Miller told me that Meaghan was, in fact, a bit older and higher functioning than they had anticipated for the class they were forming. He assured me, however, that as soon as he and her teachers felt she was ready, they would form another classroom for older children with language. I believed him. I certainly understood that in launching a new school you have to take it one step at a time.

Meanwhile, in anticipation of the wondrous progress Meaghan would make, Dr. Miller had requested that the Lynnfield school system conduct base-line speech and psychological evaluations of her. I had no problem with this. Lord knows, I was as eager as anybody to see how far Meg would come.

The speech assessment was conducted by the elementary school speech therapist. After observing Meaghan for an hour in class and working with her individually for twenty minutes, she assessed Meaghan’s play skills to be at the 12 month, pre-symbolic level. She recognized the function of objects but could not engage in any pretend play. No surprise here. She estimated Meaghan’s language comprehension and expression to be in the range of 18 to 24 months. On the low side I felt but, given her lack of familiarity with Meg and the minimal time invested in the evaluation, again not surprising. On the up side, she reported that she was encouraged by the overall consistency of Meaghan’s behavior -- odd or obstinate as she was at times.

I wasn’t sure what to make of this.

The Lynnfield school psychologist’s base-line report was far more encouraging. Regarding Meaghan’s testing behavior, Beverly Hegedus wrote, “Meaghan maintained good attention and was focused and cooperative throughout the testing.” She concluded that “Meaghan is functioning at a level greater than 1 standard deviation, but less than 2 standard deviations, below the mean for her age based on the Stanford-Binet IV subtests of Comprehension, Pattern Analysis and Memory for Sentences.” I wasn’t sure what deviations were, but Beverly assured me this was great news!

A third evaluation of Meaghan’s vision was requested by Lisa, her teacher. In observing Meg in class she noted that she often looked over the tops of her glasses when maneuvering around on the elevated boards, and that she tended to bat at objects rather than reaching directly for them. Lisa also reported several instances of stumbling while Meg was wearing her glasses. I told her that she was only supposed to wear them for close work, but we reasoned that it would be difficult for her to keep putting them on for tasks and taking them off for movement.

I brought Meg back to her ophthalmologist, Dr. Peterson, to see what could be done. Although he had no better luck formally testing Meg’s vision with the Allen cards this time than he’d had on our previous visits, he somehow concluded that there was no longer any need for Meaghan to wear glasses. I asked him whether Meaghan’s inability to maintain focus on tasks or people might not be due to an effort on her part to block out an excess of visual stimulation. He agreed that this could well be the case and, if the problem was not with her visual acuity but rather with the way she processed visual information, than the matter of resolving it was out of his hands. I don’t know what pleased me more, Meaghan not having to wear glasses or our not having to pay any more visits to this particular eye doctor.

Meg adjusted fairly well to her new school regimen, although it was a lot different from her old. The manner of teaching, aside from the unusual structures and paraphernalia, was not so unique as the theories and practices underlying it. I pass along what I gleaned about these theories and practices from reading the Miller’s comprehensive tome, From Ritual to Repertoire.54

It is their contention that even the most disordered child is genetically endowed with an impressive array of “partial systems,” and that these systems can be expanded upon and new ones formed through the introduction of repetitive and increasingly complex rituals or spheres. This type of ritualistic intervention helps a child to evolve from the stage of development at which he is stuck by helping to transform disordered

behavior into functional, behavioral repertoires. Hence their book’s title.

In order to help “disordered” children, you must first assess why they are the way they are and when and how their development went astray. Nine times out of ten problems can be traced back to a failure to achieve a cohesive, organized sense of self (or body percept) in infancy, so that early reflexive responses are never or poorly transformed into intentional, functional behaviors and actions. The reasons disordered children fail to achieve this organized sense of self are threefold, depending upon specific variations in their sensory processing systems.

Briefly, children who overreact to stimuli and can’t relax enough to order their actions are characterized as having a system-forming disorder. Children who under-react to stimuli, who often seem oblivious to everything and everybody around them, are classified as having closed systems. And then there are childhood schizophrenics, whose sense of self flounders because they tend to confuse internal experience with external events and visa versa.

Although these are three very different types of children, they all share an impairment in their ability to process information in a way that would enable them to adequately function in the world around them. Lacking a clear sense of their bodies and themselves, they do not understand that they can actually exert some control over the situations in which they find themselves. The notion that they can “cause things to happen” --a discovery essential in developing meaningful, intentional action and behavior-eludes them.

So, how do you teach such children to become more aware of their bodies and their abilities to “cause things to happen?” The first goal, according to the Millers, is to broaden the scope of their involvement with objects. Normal infants naturally manipulate and explore things--they grasp them, shake them, drop them, hide and find them and otherwise act upon them to discover their various unique properties. But many disordered children, lacking any sense of efficacy, tend to relate to all toys or objects in a repetitive or stereotypic way. They might twirl them, mouth them or line them up, but rarely does it occur to them to try to figure them out.

To broaden this ritualistic behavior, the Millers came up with a complex system of spheres. At the core of this system is a minisphere, which involves a child doing one thing with one object. Minisphere tasks might include such activities as stacking blocks, pouring water, pulling a rake or climbing a ladder. Once a child masters a minisphere, the task is varied and expanded upon to help the child to generalize the action or behavior. The next step is to combine minispheres into integrative spheres; to teach a child to perform tasks in a functional sequence. This is where the elevated

boards come in.

In the beginning the boards are used to guide a child and keep him focused as he moves from task station to task station carrying out the various components (minispheres) of an integrative sphere. For example, a child might pick up a cup at one station, fill it with water at the next station, pour the water into a container at the third station and hang the cup on a hook at the forth station. A child who is able to complete all the components of a multi-step sphere without assistance is said to have internalized an integrative system. When a child masters many integrative systems, he is weaned off the boards to the ground to increase autonomy.

Helping a child to function in a more intentional manner, thereby achieving a better sense of self, is only part of the solution, however. Disordered children also often fail to develop the typical toddler capacity to mediate, to use pointing or some other intermediate means to achieve a desired objective or to call attention to something of interest. They often fail to achieve a sense of reciprocity with those that care for them. Lacking the understanding, responsiveness and interactive skills of their typical peers, they have little confidence in their ability to influence others to meet their needs. One consequence of this lack of confidence, this failure to grasp the nature of normal human interaction, is an excessive preoccupation with objects, which are far more predictable and easier to figure out. Another consequence is the failure to develop language in a typical fashion.

Disordered or autistic children tend to get held up or “stuck” at some point along the communicative progression, just as they get stuck on the developmental progression. Often the sticking point is in the transition between sign-stage and symbol-stage functioning. Just as many disordered children have difficulty “freeing up” words from their physical referents, they have trouble grasping that words, as symbols, can be subject to their own initiative and intent.

The LCDC approach to teaching speech in its simplest sense is that you first have to make a deposit (put language in) before you can make a withdrawal (get language out) and the kind of deposit that is most helpful is to say the relevant words while a child is involved with a particular task (pair the words with the action) Once a child demonstrates receptive understanding of words, actions can be halted or interrupted to elicit them. In this way, not only is the meaning of words reinforced, but children learn to respond to and use language to express their intentions.

Only after children are able to comprehend and use words as symbols, independent of their referents, are they ready to grasp that certain graphic forms (printed words) can represent objects without in the least resembling them. Because disordered children often need special help in achieving this

“fiat insight,” in bridging the gap from object and picture recognition to assigning meaning to the arbitrary forms of printed words, the Millers devised their Symbol Accentuated Reading Program.

At Meaghan’s TEAM meeting in mid-April, her teacher reported that Meg was making great strides in all areas; that her fine and gross motor coordination had improved considerably with the removal of her glasses. She presented a list of over fifty, quite challenging objectives that she felt were well within Meg’s annual grasp of achievement, and the Millers readily approved them. In fact, Dr. Miller was so pleased by Meaghan’s rate of progress that he told me she would soon be ready to begin the reading program. He also said he felt the time had come to set about actively recruiting some older, more able children for a second classroom.

I was thrilled. Everything seemed to be falling into place.

What can I say. For all her problems, there is a winning quality about Meg that's hard to resist.

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Chapter Eighteen

Do as I Do, Not as I Say

Perhaps what delighted me most about this time period was the budding friendship between my two children. Meggie, at six years old, had never had a real playmate and neither, of course, had Michael. Although she’d always been very protective of and loving toward her younger brother, very pleased by his presence in her life, Meaghan had not known exactly what to do with him. Now, at eighteen months, Michael was able to take charge and lead the way to interaction. He was her role model for instigating “games,” but she was his role model for how they played them.

It’s amazing really is how clever and adaptable toddlers can be. It didn’t matter to Michael that his sister’s play strategies were so limited, he simply found a way to join in, to make himself a part of whatever she was doing, and she reciprocated his attention. Mostly they just took turns handing each other Lego blocks and stacking them or alternately putting pieces into a puzzle, but it was clear that they both enjoyed each other’s company.

Michael learned that he could provoke Meggie into chasing him if he grabbed her blanket or a toy she was holding and ran away. She’d protest initially but her upset was quickly replaced by laughter as they’d both get caught up in the excitement of the chase. Sometimes I’d find the two of them jumping on our bed, holding hands and giggling hysterically. Then they’d tumble onto each other or onto the floor, and this sent them into greater fits of laughter. They were both clearly feeling each other out, discovering what it was like to have and be a friend or companion.

When they were not actively playing or cavorting, Meaghan kept track of Michael, watching him out of the corner of her eye. She smiled whenever he did something funny -- or got into trouble -- and he was very aware of her observation. A budding comedienne, he’d go to any length to make her laugh and laugh she did, freely and often. Sometimes in the evenings when I was putting Meggie to bed, Michael would stand outside her door and peek through the crack. He’d wait until she spotted him and then back away.

She’d murmur “Michael” and watch the door in anticipation until he reappeared, giggling when he did. She got a big kick out of her little brother’s antics, and he delighted in “performing” for her.

I wanted to freeze these special moments in time, because I knew that their relationship would not always be this carefree. I knew that in a few years, when Michael was old enough to go to school, he would make other friends and would discover the limitations of his sister’s companionship. But I hoped that their genuine caring for each other, their appreciation for each other as brother and sister, would not diminish even as he outgrew her as his first friend.

I also hoped that Michael’s burgeoning communicative skills would have an impact on Meggie’s limited ones. At this point they were almost on a par language-wise, although Michael’s vocabulary was much more varied and flexible than his sister’s. He “owned” his words while she was just sort of borrowing hers to say what she had to say.

Meaghan knew that words were tools she had to use with people if her wants and needs were to be met, but she had not yet reached an understanding of words as symbols; as separate entities that could be separated and combined in all manner of ways. When she was tired, she would ask to go “night, night bed.” She would say this because when she was a baby we had used the words, “It’s time to go night, night bed” to put her to bed. It didn’t occur to her that she could simply ask to “go to bed;” that “bed” was, in fact, a separate word from “night, night” and could be used independently.

To illustrate how fragmented and compartmentalized her thinking was at this stage, although Meaghan could readily identify a bed if shown a picture of one, she had not made the connection between the “bed” in the context of a picture and the “bed” in her nightly request. This is to say that she learned or acquired words only in absolute, context specific terms. Her speech was stuck at the stage at which her thought processes were stuck--the rudimentary association or early naming stage. She said “ball” when she saw a ball and asked for “juice” when it was snack time. Her words were directly and inextricably linked to her involvement with specific objects or activities.

Not only could Meaghan only use words in the context of her actions, but she had considerable difficulty moving beyond her initial pairing of action and object. For instance, Meg first learned to use the verb “open” in telling me to “Open door.” From then on, whenever she wanted something opened, whether it was a door, a box, a jar or a locket, she would rotely say “open door.” The word “open” had become fused in her mind with the word “door.” Also, because of discrimination or retrieval difficulties, she tended to over-

generalize many of the words she had. “Car” meant any vehicle that moved on wheels. “Juice” was anything to drink. I didn’t press her too hard to make distinctions because I still thought of her language as being terribly fragile.

I did, however, always attempt to build upon her narrow understanding of words and what they were all about. To help her to understand sequencing I made a photograph book of her doing everything she did in a typical day: waking up, brushing her teeth, getting dressed, eating breakfast, getting into the bus for her ride to school and so on. We’d look at this book together each evening. Initially, I did most of the narrating, but she was soon able to tell me what she was doing -- with and without the aid of the photographs. She was also able to tell me what came next when I questioned her about her morning or nightly routine, readily combining two and three words to describe her actions (“take clothes off,” “put clothes in hamper,” etc.).

Sometimes she would self-narrate her actions without any question prompt. When getting dressed she would say, “put shoe on” as she was doing so. Like her “step down” or “cross street” remarks, these self-narrations didn’t constitute comments, but I was pleased anytime she put her actions into words. At least she was using her language for some purpose other than getting her needs met.

Because Meaghan loved music so much, we tried to use singing to elicit language. Meg particularly liked songs with repetitive phrasing, like “Happy Birthday,” “Row, Row, Row Your Boat” or “The Wheels On The Bus.” She also liked the “Good Bye” song they sang at the end of each school day (“Bye, Bye Meaghan... We hate to see you go...”) Lisa wrote that Meg sang all the words to this song and one other quite clearly at circle time, which was a real coup as lyrics generally weren’t Meaghan’s strong suit. In the main she was more attuned to the melody of songs than to the words. If I tried to engage her in singing, she would listen to me sing and then repeat or approximate what I sang after I finished each phrase. She never joined in and sang along with me. I suspect the “funny wiring” in her brain made it difficult for her to coordinate her listening skills with her vocalizing ones.

However, Meg’s listening skills were overall much improved. Not only was she attending more reliably and less selectively to everything we said, but she was responding more readily as well. Sometimes too readily, as she swiftly answered yes or no questions directed not just to herself but to anyone else in the room. If her brother misbehaved and I tried to solicit an apology out of him, Meggie would promptly reply “I’m sorry” before the words were even out of his mouth. Her auditory attention was definitely more acute than her auditory discrimination.

Sometimes Meaghan surprised us with the naturalness of her responses. On

Father’s Day morning, I told her that we couldn’t eat the special breakfast I was preparing until daddy got up. She turned on her heel, flounced up the stairs to his bedroom and quite forcefully told Brian, “Get Up!” Michael, of course, immediately followed suit, so Brian had little choice but to rouse himself. Any consternation he may have felt over having his rest so abruptly terminated melted away when he heard his daughter say, “Happy Daddy’s Day!”

Moments like these, when Meaghan behaved so naturally and normally, were ones we treasured because we got a glimpse of our daughter as she could be when her autism wasn’t getting in the way. She could be such a funny and delightful child when she felt calm and secure, but unfortunately her discordant sensory processing rarely allowed her to remain in a tranquil state for very long.

As the late spring warmth began to settle in, the parks and playgrounds beckoned, but I soon realized that a year had made a big difference in my ability to safely and simultaneously monitor both my children in a public place. The previous year, Michael had been a docile baby content to sit in his stroller and trail his big sister about. This year he was an agile, active toddler, who loved to run and scamper about.

Had Meaghan been a normal six year old I could have let her play on her own while I tended to Michael. But, of course, I didn’t dare leave her side, or she would either dash off or engage in some inappropriate behavior. She preferred to swing on the swings; he preferred to climb. Both needed intensive one-on-one supervision, and neither as yet had any understanding of the concept of compromise.

I had two options. Either I could keep both children close to home, or I could see about getting some help. Since we’d lost both Barb and Leslie as providers the previous fall, I’d made no attempt to replace them. I did so now, placing a call to my service coordinator at ARC. As luck would have it she had just finished interviewing a young woman, Jeanette Hyde, who was going for her masters degree in special education and looking to fill in her afternoons with respite work. She had no experience with autistic children, but she was open to working with any child. She sounded perfect.

Jeanette came to the house to meet us several days later. The children were out in the back yard when she arrived, and I pointed Meaghan out to her as we walked outside.

“Oh, she’s so pretty,” she said.

Meaghan’s long blond hair was tied back in a ribbon, and I had dressed her in a pretty, floral jumper for the occasion. She did look adorable. But when I called her over to come say “hello,” her autism revealed itself. Rather than greeting Jeanette, she grabbed hold of her bead necklace and yanked at it until it broke. So much for positive first impressions.

I was mortified. Jeanette too was taken aback, but she recovered quickly, reassuring me that the necklace was just a cheap piece of costume jewelry (only later did she reluctantly reveal its real value). I apologized profusely and went to retrieve the broken necklace from my daughter, who was on the verge of destroying it further by picking off the individual beads. When I took it away from her, Meg began to tantrum.

“It’s okay. She can have it,” Jeanette said, trying to be helpful.

“No, she can’t,” I said. “She has to learn that she can’t get away with bad behavior.”

Meg cried on and off for the rest of Jeanette’s visit, but she did come and sit with us at the picnic table while we talked.

“What do you do when she cries?” Jeanette asked.

“If there’s no real cause for it, aside from wanting something she shouldn’t have, I either ignore it or engage her in some activity to take her mind off her misery,” I said. “It would be helpful if Meg could tell me why she’s crying, so we could talk things over, but she isn’t able to do this yet.”

I told Jeanette a bit more about Meaghan and her schooling, and she filled me in on her background. I asked if she would be able to come a few afternoons a week to take Meggie out for a few hours, and she said this arrangement would work out fine with her current school schedule.

From this inauspicious start began a wonderful relationship. Jeanette proved superbly capable and competent and was marvelous with Meaghan. She had no hesitancy about getting her out and about in the community. When she discovered that our local elementary school had an extended day program, she began bringing Meggie there to mix with the kids. She’d come back with glowing reports of how the other kids all took to Meggie and how much she enjoyed being with them.

The biggest surprise for me was the news of how well Meg performed on the jungle gym. Jeanette said that she climbed up chain ladders, walked along swinging wooden planks and went down all the slides without needing any

assistance. With the encouragement of her new “friends,” she was also learning the pump herself on the swings. Clearly, her gross motor work on the elevated boards was paying off.

Unfortunately, this after-school program ended for the summer at the end of June, but Jeanette found plenty of other fun things to do with Meaghan. They went on outings to parks, to the beach and to the pools of Jeanette’s friends, while Michael and I did our thing. Occasionally, she and I would take the kids out together, and I’d watch Meaghan while she spent some time getting to know Michael. She quickly became an essential fixture in our lives.

Our routine when Meg was home from school was that I would work with her on her skills (here we are working on her language

generalization) while Michael contentedly occupied himself nearby.

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Chapter Nineteen

It’s in the Hair

One day, a month or so after she began working with Meaghan, Jeanette called my attention to the dark circles under her eyes. “Have you ever had Meg tested for allergies?” she asked me.

I knew Meaghan was allergic to pollen and mold, as she suffered miserably with an itchy, runny nose from late spring until late fall, but I’d never had her formally tested.

“I’m asking because this type of dark circling is usually indicative of an allergic condition,” Jeanette said, indicating the shadowy area beneath Meg’s eyes. “I have the same thing. If you’d like, I can give you the name of a woman in Lynn that I’ve used and my family swears by.”

“What exactly does this woman do?” I asked.

“She does hair analysis to detect food allergies. She knows a lot about nutrition and how various foods and minerals affect the body. She claims she can cure just about anything.”

“Do you really think she might be able to help Meg?”

“It can’t hurt to give her a call and see what she has to say,” Jeanette said. “Her name is Virginia Lucia.” She wrote the name and number on a piece of paper and handed to me.

I didn’t rush to the phone. In fact, the business sounded a bit gimmicky to me. It wasn’t as though the food-allergy-behavior link was news to me. I had looked into it. I’d read Doris Rapp’s book, Is This Your Child, and had tried eliminating milk and a few other foods from Meg’s diet. We’d also tried the Vitamin B6-Magnesium combination that Dr. Bernard Rimland recommended, and we’d had experimented with the food nutrient

Dimethylglycine (DMG) purported to alleviate autistic symptoms. None of this had helped. More recently, I’d gotten Dr. Kuban’s sanction to give Ritalin a try, again with negligible results. In fact, I’d tried just about every pill, potion or powder that had been linked in a remedial way to autism, attention deficit or hyperactivity and, to date, nothing had worked. This didn’t mean that I wouldn’t keep trying anything and everything to make Meggie better. It just meant that I was growing more skeptical.

A few days passed before I gave into curiosity and placed the call. Virginia Lucia turned out to be a consummate saleswoman. By the time I hung up phone, I was utterly convinced that this woman and the work she was doing were the answer to my prayers. Where I had expected half-hearted promises and platitudes, she gave me full-blown assurances. She not only assured me that righting Meggie’s body chemistry, ridding her system of all toxic substances, would help improve her behavior and learning difficulties, she boldly stated that the treatment would cure her. She was confident, enthusiastic and convincing. She said she couldn’t wait to get started.

Fortunately, I hadn’t washed Meg’s hair in a few days, so it was ripe for sampling. I grabbed her by the hand and we rushed out to the car and over to Virginia’s house. She welcomed us at the door as though we were long lost relatives.

I was concerned about her cutting tufts of Meaghan’s hair, but she assured me that I wouldn’t even notice the little she would take. She would be snipping the first inch and a half of growth closest to the scalp at the nape of her neck. While she did this, she explained the why of the procedure. She said that hair is exposed to the body’s internal metabolic processes as its follicles are forming, and that as it reaches the surface of the skin, its outer layers harden, locking in the metabolic products accumulated during its growth. Thus hair samples provide a blueprint of our biochemistry, of the nutritional and digestive activity that has occurred in our bodies over a matter of months.

When she finished clipping, Virginia put the hair into an envelope, labeled and sealed it. She would be mailing it to a laboratory in Dallas, Texas, Trace Elements Incorporated, where it would be put through a series of chemical and high temperature digestive processes and then thoroughly tested and analyzed. She would receive a comprehensive profile back in about a week, she told me, at which time we would meet again to go over the results and recommendations.

“What exactly are trace elements?” I asked, curious about the company name.

“Essentially, they’re minerals,” she explained. “Calcium, magnesium, sodium, potassium, iron and many others. Everybody is very concerned about vitamins these days, but minerals are actually more important in determining our overall health and well-being. The body can manufacture many vitamins, but it can’t produce the nutrient trace minerals it’s deficient in or rid itself of any toxic excesses to achieve a healthy biochemical balance. This is what this program is intended to do.”

It sounded good to me. As we were leaving Virginia handed me a video tape. “Watch this,” she instructed, “it will explain a great deal more.”

The tape was of a lecture given by Dr. David Watts, who headed up Trace Elements Inc., to the doctors at Massachusetts General Hospital. In it the doctor spoke of the methods and merits of trace mineral analysis and on the effects of various mineral toxicities or deficiencies on the body. By the time Brian and I finished viewing it, we were both seriously contemplating undergoing the analysis ourselves. We had a few aches and pains. Had the cost not been so prohibitive, we might well have succumbed to the lure, but for the present Meaghan was our priority.

Her metabolic profile came back the first week of August. The first page contained four separate bar graphs representing nutrient mineral levels, toxic metal levels, nutritional ratios and toxic ratios. This summation page was followed by ten other pages that described and explained the test results in detail and gave specific dietary recommendations.

The most significant findings were the following:

1. Meaghan was classified as a fast metabolizer, which meant the sedative minerals in her system were low in relation to the stimulatory minerals. Fast metabolizers were characterized as having warm body temperatures, energy and mood swings, undirected mental activity, easy agitation and stress seeking personalities; all of which applied to my daughter.

2. Meaghan’s calcium and magnesium levels were critically low, which explained her body type classification, as these two minerals have a sedative effect on the central nervous system. When they are low, increased CNS stimulation occurs producing hyperactivity and other anxiety states.

3. Meaghan’s sodium and potassium levels were critically high. These two minerals have a symbiotic relationship, with increased potassium retention resulting in sodium retention and visa versa. Too much of either mineral was not a good thing, particularly as potassium is antagonistic to calcium utilization and retention.

In his lecture, Dr. Watts had stated that this low calcium and magnesium, high sodium and potassium pattern was one he typically observed in children with ADD and other learning disabilities.

4. Meaghan’s calcium deficiency was also exacerbating her allergy symptoms, as adequate calcium is required for the reduction of serum histamine. High histamine levels are frequently found in fast metabolizers.

5. Meaghan was also deficient in the metals iron, manganese and chromium. In addition to being associated with anemia, low iron was linked to attention and cognitive deficits and to an imbalance in neurotransmitters. As manganese and chromium help with carbohydrate metabolism and energy production, a deficiency of these minerals adversely affects blood sugar level regulation.

6. Finally, the report stressed the importance of maintaining the proper balance between the various minerals, so that the metabolic impact of a toxic metal wouldn’t interfere with or predominate over the work of a nutritional one. In Meaghan’s case, not only was her calcium level low, but her calcium to lead ratio was low as well, which meant that, although her lead level wasn’t excessive, what lead there was in her system could be having an exaggerated adverse effect. Even I knew the dangers linked to lead toxicity-everything from ADD and mental impairment to neurological disorders and immune system deficiencies.

The upshot was that we had to get Meaghan’s calcium levels up A.S.A.P. I cursed the fact that, in my determination to keep her bowel movements regular, I’d done what her doctor advised and eliminated milk and cheese from Meg’s diet. By depriving her of these calcium-rich foods, it now seemed that I’d been doing her considerably more harm than good. From now on, Meg would get all the milk, cheese, yogurt and ice cream she wanted. She would also get plenty of nuts, bananas, corn and other and magnesium-rich foods. On the down side, carbohydrates and sugars were out. Meg could no longer have any whole grain products--cereals, bread, crackers, noodles--all her favorites. Wheat and rye products were especially bad because they contained a high amount of phytic acid, which apparently led to reduced calcium absorption. Meg was also to avoid sodium-rich foods, including most of her favorite snacks, and we had to increase her intake of foods rich in amino acids to enhance her absorption of calcium.

The report also recommended that I give Meaghan calcium, magnesium, copper, iron, pyridox and thymus complex supplements, along with two other Trace Elements formulations. The dosages were very specific. She would get some pills three times a day, others twice a day. Since she wouldn’t swallow pills, I had to chop them up or pulverize them in a blender and give them to her in yogurt or applesauce. No small production.

But Virginia assured me that, if I adhered to the diet regulations and gave Meg all the supplements, we’d see a miraculous improvement in a matter of weeks.

It didn’t take that long. We noted a marked change in Meaghan’s temperament almost from the moment she bit into her first hunk of cheese. She became less hyper, more compliant. After a week we noticed a brightening of her eyes. By two weeks she was more alert, focused and attentive. She began to say more to us and to say it more clearly. It struck me that she was thinking more about what she was saying. Her teachers at school noted a big improvement in her speech and behavior as well.

July and August were banner months. I really believed we were onto something positive with the new diet regimen, but sticking to it was no mean feat. The hardest part was eliminating wheat. Just about every product stocked on supermarket shelves contains some wheat or grain, not to mention sugar or salt. We had to make a weekly trek to a specialized health food store in Cambridge to stock up on sprouted grain bread, wild rice, and other unrefined, sugar-less, salt-free products.

Our weekly grocery bill doubled, and Meg was not at all pleased with her substitute noodles, crackers and bread. They didn’t look or taste like the real thing. We didn’t dare go out to eat because just about everything on restaurant menus from rolls to desserts was forbidden. Fortunately, Meg had never cared much for cake or cookies, so eliminating high sugar foods was not much of a problem, and I found a few salt-less, wheat-less snack foods that she tolerated. She did miss some of her favorite fruits, such as strawberries, grapes and apples (contra-indicated histamine stimulators). But she was quite pleased with the substitution of cashews for her usual peanuts, and she was delighted with the inclusion of ice cream and cheese back into her diet.

Everything continued to go smoothly until around mid-September, when I noticed a cluster of small pimples sprouting up on Meggie’s forehead. Her attention began to deteriorate and some behaviors I’d hoped we’d seen the last of resurfaced. She began mouthing and twirling her toys again, and her head tilt returned.

In early October I brought Meg back to Virginia for a second hair sample analysis. I was distressed and discouraged by the deterioration in her progress; Virginia was delighted. She cheerfully informed me that Meg’s regression meant that she was, in fact, getting better. She was probably just de-toxing. When the body is ridding itself of toxic metals stored in the tissues and organs, she explained, these substances enter back into the

metabolic system and tend to reproduce the symptoms that occurred during the time of exposure. Meaghan’s body was merely responding to the stress of detoxification, Virginia said. It would go through three stages: alarm, resistance and recovery, and any of these stages could produce early symptoms of toxicity.

This explanation reassured me to a degree, and when we got Meg’s tissue mineral analysis back it showed that her cadmium level was highly elevated. She was “dumping” this toxic metal, hence her retracing symptoms. The bad news was that her calcium and magnesium were lower than before, aggravating her attention and behavioral setbacks. The report attributed this further reduction to an increase in Meg’s metabolic rate, due to her toxic metal elimination. This explained why she had been calmed for a while by the increase in her dietary calcium, but then, when she began detoxing, her anxiety and hyperactivity returned. The report also showed that Meg’s zinc tissue level had decreased significantly, a deficiency that could result in moodiness and poor concentration.

There were additional dietary recommendations, and Meg’s supplement doses were adjusted with the deletion of copper and the addition of manganese and zinc. I resolved to continue the regimen for as long as it took to bring about the “miraculous transformation” that Virginia continued to promise.

Meg and our wonderful Jeanette.

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Chapter Twenty

Promise vs. Practice

My high expectations for the new school year were not panning out. Lisa suddenly resigned her position as head classroom teacher at the end of the summer session, leaving the Millers in the lurch and her assistant, Jill, in charge. I had mixed feelings about this. On the one hand, Jill was familiar with Meg and this certainly counted for something. On the other, she had very little experience and had yet to get her teaching certification. She was not officially qualified to teach any children, much less children with severe special needs. Still, I was willing to give her the benefit of the doubt, reasoning that Meaghan probably wouldn't remain in the classroom long if Dr. Miller kept his word about recruiting some older, verbal students to form a second class.

I was disabused of this notion, however, when Dr. Miller drew me aside shortly after school reopened to inform me that his recruitment efforts had been unsuccessful. He said that school systems were tending to hold on to their more able special needs students, but he did promise that he and Mrs. Miller would carefully evaluate any new prospects for the present class to ensure a more equitable mix.

Two weeks later a new student started in the classroom; a non-verbal, severely impaired three-year-old with such challenging behavioral problems that Meggie's seemed incidental by comparison. This little girl had to be monitored constantly as she had a mania for biting anything and everything, including the flesh of her classmates. Even if Jill had been superbly qualified, she and her aide had their hands full just keeping the four children in their charge safe for the duration of the school day.

Meaghan's behaviors continued to deteriorate. She was flopping, whining and acting out. Her attention had regressed to an all time low. But most disconcerting to me was her propensity to remove her clothes, to strip down to her undergarments. When Meg first returned home with her slacks taped to her shirt with layers of duct tape, I was taken aback. What kind of

treatment was this? Certainly not the more sensitive, less stigmatizing alternative to behavioral modification I had been promised. Bad enough that Meg returned home daily with her clothes bound in duck tape, but she began to engage in the stripping pattern at home.

She never stripped in my presence. But when I tucked her into bed at night and closed the door, she'd immediately shed her pajama bottoms. I went out and bought her one-piece, short-sleeved pajamas. Before bedtime I'd take shoe laces and tie the shoulder straps of the pajamas in double knots behind her back so she couldn't slip out of them. In the winter I kept her clothed by poking holes on either side of the zipper at the neckline of her blanket sleepers, lacing string through the holes and through the zipper tab and tying the string in a tight, quadruple knot. Anything less Meg could undo in a matter of minutes -- without even looking at what she was doing!

Unfortunately, this fetish for getting out of things didn't end with her clothes. By mid-October, Meg's transportation provider was at his wit's end as to how to keep her safely seated and buckled into her seat belt. He suggested a special harness type of belt used by stunt pilots during risky airplane maneuvers. The town okayed the purchase of one, and he installed it into the back seat of his car. We fastened Meg securely into it, with thick leather straps over both her shoulders, between her legs and across her stomach, locked into heavy steel buckles. I hated to see her so confined, but at this point I was more concerned with her safety than with her comfort.

"Your daughter is an ingenious escape artist!?" the driver reported back to me after Meaghan's inaugural ride in this supposedly fail-proof contraption. She had somehow maneuvered her way out of it before they had traveled the ten miles from our home to her her school. We ended up using the pilot seat belt in conjunction with two other seat belts to keep her seated safely, but having to go to these extreme lengths to control my young daughter's behavior was very distressing to me.

Even more distressing was Mrs. Miller's request that I cut Meaghan's hair. She said she felt that the barrette or bands I was using to pull Meg's hair back off her forehead were causing her to tilt her head to the side. I explained that Meaghan's head tilting tendency dated back to her infancy, and that I seriously doubted that it could be attributed to her hair style. She countered that she felt Meaghan would be "more comfortable" with bangs and shorter hair.

Pushover that I was, I brought Meaghan to the barber and sacrificed her beautiful long hair for a short, Dorothy Hamill style bob. The look was cute but very high maintenance. I'd soon had enough of traipsing back and forth to the barber every three weeks for t trim, but my resolve to let Meg's hair

grow out again was thwarted the first time I tried to pull her bangs back with a barrette. She immediately removed it. I put it back in. She pulled it out. I tried hair bands. She no longer tolerated them. So I was left with no option but to keep her hair short.

I felt I was losing control over my daughter; that she was slipping away. What had become of the little girl who had shown such promise only a few months before?

In October a brochure had arrived in the mail advertising a "School's Out" program run by the Beverly YMCA. I thought it might not be a bad idea to try out an after school program, as Meggie had the better part of every afternoon free due to a shortened school day. The brochure said that the program serviced "children with mild to moderate special needs" and, unsure whether Meaghan fit into this category, I called the program director. She suggested that I bring her in for an interview. I obliged with some trepidation, given Meg's current state of detoxification, but fortunately she behaved passably enough to be accepted into the program on a trial basis.

I brought Meg to her first after school session the following afternoon. The group activity when we arrived was a game of "Duck, Duck Goose," being played in an open field behind the YMCA building. Meaghan sad down in the circle and began munching on popcorn I'd given her, paying little attention to the activity going on around her. When someone tapped her on the head, she at first ignored it, but with coaxing we got her to stand up and take her turn. She was familiar with the game, having played it at school, and went through the motions of tapping a few heads but, rather than picking a "goose," opted to turn on her heel and dash away from the circle altogether.

Inside, with fewer distractions, things went a bit better. But, as Meg had little interest in the arranged art activity, her cooperation was sporadic and largely dependent upon my attention. If I backed away or turned to talk to one of the staff, she'd stop participating or revert to some sort of mischief-making, toppling the paint jars or breaking up the crayons. For me, this provocative behavior was the norm. For the staff, it was a real eye-opener. Accustomed as they were to the docility of the mostly down's syndrome clientele, they were clearly not sure what to make of my impetuous and impulsive daughter.

At the end of the session, the program director called me into her office and, not surprisingly, informed me that things were not working out as she had hoped. I apologized and said that I wouldn't be bringing Meggie back.

"Oh, I do hope you'll reconsider," she said. "I think having Meaghan here is good for us." She smiled at my stupefied look. "But she'll need some one-on-one supervision for a while," she went on," until she adjusts. I happen to know of a girl who is available Tuesday and Thursday afternoons and, if it's okay with you, I'll arrange for her to come in and work with Meaghan."

Naturally I said it was fine with me.

The girl, Noel, turned out to be terrific. She knew exactly how to handle Meaghan and, sensing this, Meg settled down and began to participate positively in the various activities, including the swimming sessions, which entailed her commuting in a van with the other kids to and from the pool building. I lived in dread of hearing of the havoc she caused by refusing to stay buckled in her seat belt for the ride but, when several weeks passed without reported incident, I allowed myself to relax. Maybe the program would work out after all. If so, it would be just about the only thing that was working out.

As the school year was progressing, my disenchantment with the education Meaghan was receiving was mounting. One of the reasons I had opted to put her into the LCDC classroom had been the promise of the on-site opportunities she would have to interact with other children. According to the social development objectives in her IEP, Meaghan should have been participating in recess and gym with normal peers on a daily basis and joint music sing-along every other week. There should also have been some reverse mainstreaming going on, with typical kids being brought into her classroom twice a week.

By November, I was still waiting to hear whether any of these initiatives had gotten under way. In fact I was waiting to receive any pertinent word about what my daughter was doing in the course of her school day. All my inquiries about how Meg was progressing on this goal or that went unanswered.

Certainly, the reality of Meaghan's classroom experience in North Reading bore little relation to the insightful, practical work I'd observed during her Umwelt Assessment, nor was there evidence of any consistent or individualized application of the meticulously developed methodology so eruditely expressed in the Miller's book. Meg and her three classmates did traipse up, over and across the elevated boards for forty-five minutes every morning, and there was a half-hour minisphere period in the afternoon when some structured teaching was supposed to take place. But any lesson plans Jill had were haphazardly implemented at best, with one activity

generally sufficing for all four students. The rest of the school day was taken up with circle, snack, recess, lunch, rest time and walks around the school grounds.

In fact, the only time Meaghan stood a chance of learning anything, the only time she was challenged to think about what she was doing, was during her weekly forty-five minute C-D (Cognitive Development) sessions, which were taught by a highly experienced and competent teacher, Laurie Ross. I attended these sessions regularly and, although they started off well enough in September, by November, despite Laurie' enthusiastic coaching and coaxing, Meg was spending most of the time in or near tears. She hated school. I was beginning to hate it too; to regret that I had let myself be swayed by the Millers many years of experience.

I sat down with them a few days before Thanksgiving and laid out my concerns. I said that my daughter was not getting the education she had been promised. There was too much "down time" and way too little structure, stimulation and education. Meaghan would turn seven in the spring and yet, rather than working with her on the basic reading and writing skills she would need to move on to academics, her teachers were napping and playing with her, having her watch videos and practice signs for single, functional words that had been a fixture of her vocabulary for years.

The Millers listened to my complaints and promised that changes would be made. Another aide would be hired immediately to work with Meg individually during rest period on her fine-motor and pre-academic skills. A videographer had already been hired to record the goings-on in the classroom daily, so that Dr. Miller could more closely monitor and supervise the activities of the children and the teachers. Mrs. Miller assured me that she was in the process of selecting the "right" children and hoped to begin some active mainstreaming before the end of the year. She would also be speaking to the teachers about using recess time more effectively for social integration.

I knew these promises were meant to placate me and, if the Millers proved as good as their word, I would be satisfied for the time being. I really didn't feel that another school transition was in Meaghan's best interest and, with Michael's second birthday and Christmas fast approaching, I had plenty of other matters to occupy my time and attention. Of course, Meggie factored into all of them. I knew I had to do all of my holiday shopping and preparation before her school broke for vacation in mid-December, as there was no question of getting anything done while she was home. Keeping constant vigil over her was a full time job.

Meggie's new cropped hairdo. Note how her head is still tilting to the right. So much for Mrs. Miller's theory.

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Chapter Twenty One

Merry Mayhem

I had hoped that Meg would be over the worst of her de-toxing by the time the holidays rolled around, but unfortunately she was still in the throes of it, which meant that her behavior was more unpredictable than ever. What was predictable was that she would not be at her best when I most wanted her to be, when we were having company to the house.

Meaghan loved having company. She wanted to be around others, but being around others catapulted her nervous system into a state of overdrive. Her brain, barely equipped to organize and process sensations from her body, simply couldn’t cope with a flood of extraneous sensations involving many people in unstructured situations or surroundings. The result was severe sensory overload and over-arousal; a state that made it virtually impossible for her to have any control over her behavior.

Michael’s birthday party was little different from other family parties. Any interest Meaghan showed in interacting with her cousins was not reciprocated. She was older and most of them were too young to figure out what to make of her much less how to play with her. Nor did it help that she had developed a penchant for picking on babies, for tapping or whacking them on the head, so that a loud wailing invariably erupted whenever she was let loose in their proximity. The upshot, of course, was that, even though she wanted to be with the other kids, I couldn’t let her for fear of the upset she would cause.

So she wound up spending her time at her brother’s birthday much like she spent her time at every social function, wandering about gobbling up all the food in sight or singling out a favorite relative and relating to them in the only way she knew how, by positioning herself on their lap and requesting a back “rub.” The soothing tactile stimulation and physical closeness of the person she cared about calmed her and helped her to cope with the overload of sensory and social stimuli. It also kept her out of harm’s way and allowed me to take a bit of a breather from trailing her about.

Unfortunately, even the most accommodating relative would eventually grow tired or bored with “rub duty,” and Meg would be on the loose again.

I had to be extra vigilant during this time period because Meg had developed a penchant for grabbing hold of any untended soda cans or glasses, upending them and spilling out their contents. This disconcerting drink dumping behavior had been going on since the fall, when she began pouring out her juice during snack time at school. At first I thought she was just over-generalizing her pouring training but, because the behavior was most pronounced whenever we had company, I now suspected a more provocative intent. Perhaps because I didn’t allow her to have soda herself, due to its high sugar content, she felt the need to deprive others as well. Of course, we’d forewarn all our guests to “watch their drinks,” but Meaghan could be amazingly stealthy and quick when she set her mind to something.

The ordeal of Michael’s birthday was followed by the ordeal of the annual Buckley family Christmas party. This year Meaghan was alternately hyper and out of control or spacey and just out of it. It saddened me that our relatives only got to see her at her worst, but I was becoming resigned to the slim odds of their ever seeing her in a more favorable light.

The nadir of the holidays came when we went to Brian’s sister’s house for a “Santa sighting” party. (Santa rides through the streets of her town on a fire engine every Christmas Eve.) When I emerged from a back room where I had been changing Michael and looked about for Meaghan, I didn’t spot her anywhere. Alarm rising, I queried Brian.

“I thought she was with you,” he replied, growing pale himself. “She was looking for you.”

“Well, she didn’t find me,” I stated the obvious.

He immediately dashed for the front door, while I hurried back down the hallway to search the bedrooms and closets. By this time our relatives had caught on to our panic, and several of them grabbed coats and hastened out the door. I was on my way out myself when Brian returned with a gleeful Meaghan in tow.

“Where was she?” I breathed, the sheer force of my relief leaving me weak in the knees.

“I found her up the street playing with Santa and his reindeer,” Brian said, referring to the brightly lit plastic figures festively displayed in a neighbor’s yard.

“She must be freezing,” his sister said, since Meaghan had waltzed out into the twenty degree evening without a coat. But she didn’t seem cold or in any distress. If anything, she was baffled by all the fuss we were making over her. She hadn’t a clue that she’d been in any danger.

The party resumed and I let the laughter and conversation flow around me. In truth, I was tired. I was tired of putting on a smile when I was really dying inside because, unlike my daughter, I could well imagine what others were thinking. I was tired of feeling anxious and embarrassed or unbearably sad because nobody ever saw Meggie as she could be when her sensory processing wasn’t on overload. I was tired of making excuses for behavior that neither my daughter nor I could help or control. I was tired of people saying Meg was doing well when they had absolutely no basis for comparison. Above all, I was tired of people talking down to Meggie or asking me what she wanted or didn’t want as if she wasn’t there.

It would have been so easy just to stay home and never take Meggie out anywhere, but I knew this wasn’t an option. Not only would I be denying myself the company of friends and relatives I cared about, but more important, I would be depriving my daughter of opportunities she desperately needed if she was ever going to learn to feel comfortable around people.

So, I’d go on putting a smile on my face and trying to pretend that our lives were just as normal as the next persons. One thing being the parent of an autistic child does for you; it gives you a far broader perspective on life than most parents ever have need to develop. You cease fretting about the small stuff. You become so inured to feeling anxious, exhausted, embarrassed and overburdened that you achieve a kind of karma -- accepting all things with equanimity, except for those that pertain to the welfare of your child. This out-of-body state carried me through the rest of Christmas Eve and Christmas day.

Although Meg now had some understanding of the holiday and had mastered a great “ho, ho, ho” when asked what Santa said, she was not any more interested in her presents this year than in the past. Michael, however, got right into the spirit of things, dashing about excitedly, tearing into everything and exclaiming over Santa’s largesse. It was a joy to watch him, and I managed to keep my disappointment over his sister’s apathy at bay.

After all, one couldn’t have everything.

Meaghan’s afternoon School’s Out program had gone on a two week hiatus during the Christmas break, and when it started up again in mid-January I learned that Noel, the girl who had been working with Meg, had left to go back to school.

“But Meaghan has adjusted so well during the last several months,” the program director said, “I think we can manage her without the help now.”

The phone rang an hour after I dropped her off.

“Could you please come and pick your daughter up,” the flustered voice on the other end of the line said. “She has taken her jeans off and refuses to put them back on.”

I went and retrieved my wayward daughter. The program director was not around. Even if she had been, I wouldn’t have asked her if there was any way for Meg to continue the sessions. The counselors’ wariness, their uncertainty in dealing with behavioral issues, would only provoke Meg into testing them further and getting into more trouble. Best to just call it quits.

I was beginning to question the merit of continuing on with Meg’s dietary regime as well. I got back a third tissue mineral analysis (TMA) report the second week of January. The good news was that Meg’s sodium and potassium were way down, and all the toxic metals in her system were at low levels. Her zinc retention had improved as had her calcium to lead ratio, meaning the lead was no longer interfering with her calcium absorption and that it posed less of a threat of toxicity. The bad news was that Meg’s sodium and potassium ratio was unbalanced, which could cause neurological distress, and her calcium had gone down instead of up.

I found it amazing that the calcium could remain so low despite all the supplements and the abundance of cheese Meg ate. Virginia said it was because she was such a fast metabolizer, her body was not absorbing all the calcium we were giving her. Also, a lot was being used up in the detoxing process. My question was, when was this detoxing process going to end? When would all these dietary changes and mineral metabolic adjustments start having a consistently positive effect on Meaghan’s attention and behavior?

Virginia counseled patience. She said the benefits of changing one’s body chemistry did not necessarily manifest themselves overnight.

What had happened to her promise of “a miraculous improvement in a matter of weeks?” I was beginning to wonder if I was being played for a fool. But what if the promised transformation was just around the corner, as

Virginia kept insisting? Having come this far and invested this much, I hated to give up just when we might be on the brink a pay off. I resolved to continue the costly regimen for three more months.

Boy, can looks can be deceiving. You wouldn't know it by lookingat this picture that the little girl smiling so adorably into the

camera could possibly be the same one I've just described above.

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Chapter Twenty Two

A Parting of Ways

As February passed into March, my frustration with Meaghan’s school situation grew as the gulf between promise and practice remained un-bridged. True, the elevated board work Meg was doing had helped her conquer some of her physical fears, but this increased physical agility was not impacting her mental confidence.

As with everything else, her teachers were on the right track in the work they were doing, but they weren’t carrying it far enough. Rather than continuously challenging Meg with new and varied board configurations and a variety of multi-sphere hand-eye activities, designed to engage all areas of her brain and body, they opted to follow essentially the same routine day in and day out. No doubt they found limiting challenges a handy way to limit resistance but, by not pressing Meaghan to do things that were frustrating or difficult for her, they were not making any significant headway in teaching her.

I believe the only way to expand the mind of children with autism is to keep stretching the limits of their tolerance. Just about everything I did with Meaghan was aversive to her initially, but the fear and uncertainty that underlay this resistance were not insurmountable. In fact, Meaghan was starting to like learning. I’d never stopped working with her at home. Actually, I didn’t have much choice in the matter, as Meg still had virtually no independent play skills. Either I worked with her or she did nothing, and if she did nothing she learned nothing. Jeanette shared my concern for Meggie and my belief that she was capable of doing a lot more than she was being challenged to do in the classroom, so I was able to enlist her help as assistant teacher.

We had worked out a pretty clever respite arrangement for the winter months, combining afternoon outing with homework. Jeanette would pick Meggie up after school two or three days a week and take her to a nearby coffee shop for a soda. They would then proceed on to the local library,

where I’d arranged for them to use a small, private upstairs storage/meeting room for study sessions. I put together a big, canvas tote bag of materials, including counting and patterning activities, puzzles, several sets of flashcards, a pad of paper, crayons and pencils.

On the afternoons that Meaghan didn’t go out with Jeanette and on weekends, I conducted my own study sessions. We worked on visual motor skills, alphabet and number recognition, pretend play and reading. As Jill wasn’t making much headway in the reading program at school, I had asked for and received several packets of symbol accentuated flashcards from Mrs. Miller. Meaghan enjoyed these cards, and I was surprised at how well she did with basic sight reading. The only difficulty she had was in mastering some of the pantomime gestures she was supposed to use to reinforce her understanding of the meaning of the words she was reading.

Michael participated in most of our study sessions, and he loved being involved. I used him as a role model for language and play, and Meg had no problem with his participation up to the point that she wanted to be “all done” and he didn’t. She didn’t like me to continue working with him when she wasn’t involved. She was very possessive of me. As for Michael, he demonstrated a maturity well beyond his two years, evidencing an innate appreciation and understanding of his sister’s limitations. He was always very patient with her and willing to go along with any and all lessons, even those he was developmentally well beyond, like our work on simple pretend play sequences.

Acting on Mrs. Miller’s suggestion, I used the little figures and furniture from Meg’s doll houses to have her perform and talk through pretend play routines. First I’d model and describe an activity using the dolls and toys, and then I’d tell her to do it. After she imitated me, I’d have her tell Michael what to do. In this way we were working not only on her play skills, but also on her ability to describe what she was doing and to talk to a peer.

I’d use the clean up from our sessions to work on Meaghan’s scanning ability -- or disability. Her range of visual focus was very narrow. She had no problem handling lotto or sorting activities when the cards or objects were placed right in front of her, directly in her line of vision. But she had difficulty shifting her gaze further afield to search out a requested item. So, rather than having her just gather up all her toys and put them away when we finished our work, I’d ask her to hand me a specific one. Her tendency was to just grab the first toy she laid her hand on and give it to me without looking around at all. When I pressed her to hand me the “right” toy, she’d often collapse into tears.

Because looking was neither easy nor enjoyable for her, engaging in any activity that required her eyes to direct her hands was neither easy nor

enjoyable. Meaghan could scribble with a crayon or pencil, but she couldn’t color within boundaries or trace or draw anything other than a strait line. With practice she was able to discern spatial relationships well enough to do simple puzzles, but puzzles with many interlocking pieces were beyond her. She couldn’t use the completed picture as a guide, because she couldn’t look at it long enough for it to attain any meaning for her. She could look at a single picture or word, but she couldn’t make sense out of a group of pictures of a line of print.

Every evening I read to the children. Early on Meg resisted my attempts to draw her into the stories, but after awhile she settled into the routine and began to enjoy the auditory input. Unlike her brother, she rarely glanced at the pictures on the pages unless prompted to do so. I knew that she would never learn to enjoy looking at picture books--or anything else for that matter--as long as there was so much information or visual clutter on each page. But what if there was only a single picture on an otherwise blank page, with no other stimuli to confuse or overwhelm her? Perhaps I could train Meaghan to look in the same way I had taught her other skills, by taking it one small step at a time.

With this idea in mind, I set about making Meaghan a sticker book. I purchased several varietal boxes of stickers, depicting everything from apples to zoo animals. I got a packet of plain white paper and began sticking the stickers on the sheets, which I then inserted into plastic sheaths to protect against Meg’s propensity to rip. On the first page I simply put an apple. On the second page I put a house. On the third page I put an apple and a house, widely separated. I continued on in this vein, adding additional stickers to successive pages.

At first I made sure that the sticker objects were all different colors to aid Meg’s visual discrimination, but then I began putting different object stickers of the same color on a page, or same object stickers of different sizes. I used an apple with a worm in it and one without. I put a gray sticker of a mouse in the far right corner of one page and another gray mouse on the lower left corner of the opposite page, with several gray cats and dogs scattered about in between. Meg had to scan and discriminate to find the two mice.

The more sheets I did, the more ideas I came up with for using the stickers not just to strengthen Meaghan’s visual attention, but to help teach her other basic skills. I had her count how many stickers there were on a page. I addressed color and shape recognition by adding progressively more colors and shapes to a page, and then I tackled letters. I began by putting a single letter on a page, then two, then three. On the opposite page I put several stickers of things whose names began with the letters. Eventually, I added some words. Always, I had to resist the temptation to put too much on a

single page. On the one hand, I wanted to make looking as easy and enjoyable for Meg as possible. On the other, I wanted to keep challenging her visually.

Sometimes Meaghan balked at the demands I placed on her, but when we’d come to a stopping point she’d always ask for more. When working with Meg I made no allowances for testing behaviors or emotional outbursts and, in this respect, I was finding myself more and more at odds with the Millers, who believed in placing the child’s needs and feelings above all else. Rather than treating my daughter’s disorder, I felt they were catering to it, allowing her tantruming and maladaptive behaviors to go on day after day, week after week and month after month with no redress.

In a letter stating their point of view, Mrs Miller wrote:

“We consider one very important drive behind Meaghan’s (behaviors) to be her need to experience herself as a person who has an effect on others. Lacking this experience of self, we think she goes through these provocative behaviors to get people to respond to her so that she can feel-through their response to her- her own separate existence....One of the major differences between LCDC’s approach and that of behavior modification programs is that we try to nurture this sense of self whenever possible while helping children organize their behavior....For example, our response to dealing with (Meaghan’s) crying while doing a task is to allow her to put on earphones so she can listen to softly played favorite songs while she is working. Here, while a behaviorist might argue that we are “rewarding” her crying behavior, we maintain that we are substituting a gratifying experience that she enjoys--and are breaking up the whining mind set--while requiring her to continue her work. The message we try to send is that we are sensitive to her needs while she is responding to our demands.”

This was the last straw. The Miller’s concern with my daughter’s “sense of self” was commendable but, as I saw it, some balance had to be struck between nurturing and disciplining. The very last thing I would consider if I was serious about getting Meg to stop crying would be to reward this negative behavior by playing her favorite music. Granted she would learn something from the introduction of this “gratifying experience” in the midst of her tantruming. She would learn in a flash that if she cried long and hard enough she would get music.

Clearly, the Millers and I were on disparate wavelengths when it came to disciplining and educating my daughter. I might not have a doctorate in psychology, but I knew my daughter and what she needed more than anything was a sense that somebody was in control. The way I saw it, she was using her behaviors to draw attention to herself, not out of any need to “experience her own separate existence,” but rather out of a desperation to

have someone set some limits. The Millers had had one year to prove the efficacy of their sensitive approach, and the results were not only not convincing, they were downright disastrous. I could no longer afford to sacrifice my daughter’s education on the alter of their professional egos.

I headed out to Meaghan’s TEAM meeting in April with a heavy heart. I knew I had another school search ahead of me. On my way to the conference, I stopped off to peek in on Meg’s classroom through the two-way mirror. It was after lunch and I was interested to see what she was up to. I saw her, sitting placidly on the floor in front of a reclining Jill, having her back rubbed.

I could barely contain my anger and disappointment as I proceeded on to the conference room and greeted Dr. Miller and my school system representatives. A few minutes later, Jill entered the room and took a seat, smiling across the table at me.

I let go my restraint. “What were you doing in the classroom just now with my daughter?” I asked.

“I was rubbing her back,” she replied, taken aback. “It’s rest period.”

“Let me get this straight,” I said. “Every day after lunch, Meaghan lies around getting her back rubbed for half an hour?”

“Sometimes we do other things,” Jill responded, looking to Dr. Miller for a clue as to what this interrogation was all about.

“The materials I sent in back in December, specifically for use during down time, do you ever use them with Meg?” I queried. “Do you do the puzzles, read the books, work on pre-writing skills?”

“Not during rest period,” Jill replied, nonplussed.

“I know you’ve been disappointed in the classroom, Mrs. Buckley,” Dr. Miller intervened. “But Jill is doing the best she can. As you know, we’ve recently hired another aide who’s due to begin working in the classroom next week, so you can count on Meaghan getting more one-on-one time then.”

Too late, I thought, as my disbelieving eyes met his. I’d heard it all before.

“Perhaps now we can get on with the meeting,” he continued in a condescending tone, passing around copies of a hastily scribbled IEP along with several other reports.

Jill began her presentation. As she went on, I marvelled at her calmness and composure, the utter lack of concern she displayed in recounting the utter lack of progress my daughter had made under her stewardship in a year’s time. Of course, nobody at the meeting had Meaghan’s previous year’s IEP on hand to refer to, so they probably had no inkling that every goal had gone unmet. But I knew. I knew that rather than progressing, Meaghan had, in fact, regressed significantly in the last year.

I said nothing.

Jill concluded by cheerfully asking if anyone had any comments or questions. I could have livened things up a bit by asking a few pointed ones, but I was too defeated to care.

I listened numbly to LCDC’s speech therapist, Anita Maloney, tell me that Meaghan’s awareness and use of language to connect with others was limited. In addition to this astounding news, she reported that my daughter experienced severe word retrieval difficulties and that most of her speech consisted of old, well-learned statements or phrases. Corrections and redirection upset Meaghan, she went on to say, so she was to self-narrate her actions and repeat all directions while she carried them out, in order to help her process the information. After enumerating several other deficits and recommendations, she concluded by saying that we had to instill in Meg some degree of control over her communication disability if we were to succeed in reducing her overall frustration level.

All these ideas and suggestions had validity, if one could assume some level of consistency in their implementation. But, in fact, this speech therapist was the third Meg had had since starting at LCDC, and there had been several month long gaps in between hirings. As it was Meg was only scheduled to receive speech services for half an hour one day a week so, even if this therapist proved to have more staying power than the others, the odds of her affecting any significant improvement in my daughter’s speech were not ones I cared to wager on.

Finally, Beverly Hegedus, our school system’s resident psychologist, took the floor. As Lynnfield’s speech therapist had been unable to make the meeting, Beverly began by summarizing her follow-up assessment. She quoted from the report. “In looking at Meaghan’s progress from last year, I feel she has made growth in her listening skills and use of spontaneous use of eye contact and facial expressions in order to engage the speaker. There is more inflection in her voice and her production is matched by more appropriate body language. Her spontaneous us of ‘I want....’ statements appears to be emerging, and she appears to be more aware of the use of language in relationship to functional needs.”

How wonderful that this woman, who had spent all of forty-five minutes observing my daughter, could feel so pleased in informing me of abilities that Meg had possessed for years.

Dr. Hegedus seized upon the report’s concluding comment that Meaghan “appeared to have developed more affective behaviors in relationship to her language” as a lead in to her psychological assessment. Not surprisingly, Meaghan had been unable to complete any of the battery of intelligence tests she had attempted to have her perform, but the doctor tried to put a positive spin on things by listing some of her strengths: her willingness to attempt the tasks, her ability to stay seated and attentive, her ability to utilize structure and her clear vocalization of her needs.

Of course, she also had to mention some of Meg’s weaknesses: her problem in accepting the fact that the testing involved correcting her mistakes as a way of feedback, her low frustration tolerance and the inconsistency of her performance. In comparing Meg’s performance to the previous year’s, Beverly reiterated her strengths, calling them gains. But, in fact, Meg’s performance the previous year been far more encouraging. Not only had she been focused and cooperative throughout the testing, she had completed enough of the tests for Beverly to enthusiastically assess her level of functioning as “less than 2 standard deviations below the mean for her age.” Beverly made no attempt to assess Meaghan’s level of functioning this year, but she did say something at the end of her presentation that I will never forget. I can’t recall the exact words she used, I was so numb by this point, but it was something along the lines of, “Perhaps Meaghan has come as far as she is capable of coming.”

The tears I had been holding back erupted, not because I believed for a moment that this might be true, but because I felt so impotent against these people who had so little understanding of my daughter and yet presumed to pass such crushing judgement upon her. There was no question in my mind but that Meaghan was capable of coming a lot further, of learning a lot more. She just needed the right teachers and the right school!

When we brought Meaghan into Children’s Hospital for her semi-annual neurological exam, and Dr. Kuban learned of her daily distress and lack of developmental progress, he concluded that she had simply “outgrown” her LCDC placement. He also felt the time had come to begin weaning Meg off Tegretol, as there had been no outwardly observable seizure activity in well over two years.

Virginia Lucia couldn’t have been more delighted when she heard this news. She told me that once the drug was out of Meg’s system we should see

some significant progress. I didn’t believe her. In fact, I was pretty fed up with her nutritional wizardry and the whole diet and supplement business. So was Meg, who had taken to spitting out most of the mineral mix I gave her through the newly formed gap in her front teeth.

I’d recently come across mention of hair sampling and vitamin/mineral supplementation in Charles Hart’s book, Without Reason. He wrote that the technique had been tried by numerous parents of autistic children anxious for a “cure,” and that it had failed to effect one. I mentioned this to Virginia and asked her if she knew of any case histories that would refute the author’s skepticism. She said no, that Dr. Watts work with autistic children was relatively new and that I just had to have faith. I pointed out that I’d had faith for nine months, and that if I was going to continue to believe, I had to have some proof positive that we were on the right track.

When we got back Meaghan’s forth TMA in early April, it failed to sufficiently reassure me. Granted, Meg’s overall metabolic profile was looking better. The levels of the minerals I had been supplementing were up, as was her calcium level, and the toxic metals were still down. But her magnesium and manganese levels were below the lowest calibration limit. After nine months of sticking to a difficult wheat-less, sugar-less, high dairy diet and forcing hundreds of dollars of supplements down my daughter’s throat, not a single nutrient mineral or mineral ratio had reached the “ideal” level. I was beginning to suspect that they never would; that Meg would never achieve a perfect profile. There would always be gains in some areas and setbacks in others.

I wouldn’t have minded this so much had the gains translated into behavioral or attention improvements, but this was not the case. For over three months now Meaghan’s toxic metals had been at extremely low levels, so dumping or detoxing could no longer explain her maladaptive behaviors or mood swings, yet they continued. According to this latest report she had finally started to reabsorb calcium, yet I failed to detect any calming effect on her emotions. Of course, I could always count on Virginia to have an explanation for everything. This time she hinted that undetected food allergies or sensitivities might be the problem. Perhaps Meggie was allergic to one of the unrefined grains in the sprouted grain bread I was giving her. Perhaps. But I wasn’t buying it. I told her that I would continue to give Meaghan the supplements I had on hand to use them up, but that, unless her behavior took a decided turn for the better within the next several weeks, we wouldn’t be coming back.

I was growing wiser. I had invested my heart and hopes in two programs I thought would answer my prayers and make my daughter better. Neither had panned out, but I had learned from the experience. I had come to accept that I was unlikely to come across any miracle cure for what ailed my

daughter. I was pretty convinced that Meg’s problems had a chemical or biological basis, but the biochemical root had branched out to impact so many areas of her physiology and personality that, even if the core problem could be contained, the neurological havoc it had already caused would not vanish overnight. If Meggie was going to get better, it was going to be a long, drawn out process, and it would take a lot of effort, a lot of help and no small measure of luck.

Meg and Mike, Easter 1992.

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Chapter Twenty Three

About Behavior

One thing can be said with certainty about autism; it manifests itself in different ways in different children and at different stages of development. As autistic children emerge from the self-absorption of toddler-hood, they become more aware of, confused by and frustrated with their processing limitations and this can cause a deterioration of behavior. I believe this was what was happening with my daughter.

For Meaghan, the world was a frightening and threatening place. Testing and acting out were her way of trying to exert some control over her fears and insecurity. They were her way of coping with a flood of extraneous sensations she could neither modulate nor effectively process and put into any kind of meaningful context. The harder she had to struggle to make sense of the world, of the things people did and the jumble of words she heard in conversations all around her, the harder it was for her to feel good about herself.

Because of her "funny (faulty) wiring", the verbal and visual messages she was receiving were never fully comprehensible. Information was short-circuited just at the point where she needed it most, so she had to struggle constantly to come up with strategies that would help her cope and connect; a struggle that understandably exacted a toll on her behavior.

Not that she always behaved badly. The problem was mot that her behavior and emotions were so volatile and unpredictable. One moment she would be calm, alert and attentive, and the next she would be anxious, testy and out of control. Sometimes she would go a whole week without any serious behavioral episodes and, just when I dared let myself hope that we were on a roll, she'd revert to her temperamental outbursts and troublesome ways.

Here I feel I must clarify, as the troublesome ways of autistic children are not at all like the troublesome ways of typical kids. Actually, behaving badly -- or oddly -- isn't a core symptom of the syndrome. Autistic children do not

act out or misbehave because they are autistic. They don't intend to harm anyone or hurt anyone's feelings by their behavior, nor do they deliberately set out to anger or annoy. In fact, they rarely have an ulterior motive for what they do. They simply do what they feel like doing when a lack of modulation of the chemicals coursing through their brains causes them to feel like doing it.

Because most autistic behaviors are internally driven, they at first appear maddeningly unpredictable and uncontrollable. But, if you work closely with autistic children, you discover that they are not as hard to figure out as they would have us believe. What autistic children have in common is their tendency to follow their own impulses, regardless of what others may think or feel about their conduct, and their desire for -- or obsessive reliance on -- sameness, which results in repetitive behavior and behavior patterns. The “restricted repertoire” catch phrase for their reliance on sameness factors into their behavior as well as their interests and activities. In fact, I can ascribe every single one of my daughter’s odd or maladaptive behaviors to one of five categories: sensory compulsions, enigmatic fixations, “testing” behaviors due to excess anxiety or arousal level or desire for attention, perseverations and impulsive acts.

The earliest behavioral manifestation of Meaghan's autism were her sensory compulsions. These are physical obsessions of a self-stimulatory nature. From here early hair touching or pulling fixation, Meg moved on to the tactile need to hold small objects in her hands, which led to her penchant for getting into things. Then came her need to touch or feel certain textures, which resulted in the inappropriate grabbing of people's clothes, particularly if they were made of or had designs of a nylon or polyester type fabric. She also craved the feel of plastic and would zero in on any plastic bags or tape she found around the house. Paper shredding was another tactile compulsion. She liked the sensation of ripping and the feel of tiny bits of paper between her fingers.

Sometimes Meaghan would satisfy two sensory needs with one behavior, as when she picked leaves off buses or plants, shredded them and put them in her mouth. This was not pica. She didn't eat the leaves (and sometimes dirt) she put into her mouth. She always spit it out. But she needed to experience the taste or feel of it orally. Her mouthing and biting of toys or small objects and stuffing large quantities of food into her mouth before swallowing were indicative of her poor oral-motor awareness and intense need of oral-motor stimulation. Sucking and blowing exercises have helped to diminish Meg's need to experience things orally, but her mouth remains the most sensitive part of her anatomy.

Other sensitive areas include her wrists, lower arms and the back of her neck. Meg will sit contentedly for hours if I (or some other obliging soul)

gently stroke one or more of these areas. She has now discovered that she can afford herself this soothing tactile stimulation, and I often see her rubbing her lower arm or wrists with her finger tips or the edge of a magazine I've given her to look at when she is sitting in front of the TV. When I first noticed her engaging in this self-message, I grew alarmed and told her to stop. I've since realized that this was unfair and frankly, stupid. She is not harming anyone by this unobstrusive behavior. It doesn't interfere in any way with her learning or any other daily activities. In fact, it is no big deal.

There are two types of sensory compulsions: Those that are annoying or harmful and those that are not. The annoying behaviors, like inappropriate touching or grabbing, picking leaves off plants or paper shredding, should be dealt with firmly and unequivocally. The child must be made to stop. The other behaviors, those that are merely satisfying a sensory craving or need, should be allowed in leisure situations. Autistic children are so frightened and anxious so much of the time that harmless behaviors or rituals that afford them a measure of contentment and comfort should not be discouraged.

Not all of Meaghan's early sensory compulsions were related to her tactile or oral needs. Her need to keep moving when walking or riding was the result of her craving for vestibular stimulation. She still likes swinging on the swings in our backyard, not just because of the vestibular feedback but because the swings need oiling and make a low squeaking noise as they move back and forth which she finds appealing.

When she was very young she would bang her bedroom door against her bed over and over. As a variation, she would lie in her bed and kick her wall or shake the headboard so that it hit the wall. I suspect it was not the banging noise she enjoyed so much as the rhythmic repetition. Her fascination with motor sounds, her need to open and close doors just enough to get a squeak or to scrape her chair back and forth on the kitchen floor were other auditory compulsions.

While she was intrigued by some sounds, for a long time Meaghan was resistant -- or sensitive -- to others. When she was young she couldn't tolerate listening to voices on the telephone. If I put the phone to her mouth so she could say "hi" to someone, she would shove it away from her ear before the caller could respond to her greeting. Also, she tended to hear or "tune into" familiar voices (mine and Brian's) better than to unfamiliar ones. If friends or relatives asked Meg questions, we would have to repeat what they said to her before she would answer.

These unusual auditory behaviors led me to wonder whether there might be some imbalance in Meaghan's hearing that might be remedied by auditory

integration training. The premise behind AIT is to modulate auditory peaks or sensitivities through sustained, filtered exposure to sounds or music. In Meaghan's case, an initial audiogram reading was never obtained, so there was no way of knowing what frequencies she was sensitive to or of measuring the overall efficacy of the ten hours she spent hooked up to the earphones of the audiokinetron.

My own observations post-treatment, however, were that her speech and auditory attention improved slightly. She began to "tune into" every voice she heard and had less trouble listening to voices on the telephone. But, whether these improvements were specifically linked to the auditory training or whether the "desensitization" would have occurred naturally as a result of repeated auditory exposure over time is hard to say. I can say that the training did not have any significant effect on Meaghan's behavior, not did it diminish her fascination for motor or rhythmic noises.

Meaghan has visual fixations as well. The most pronounced of these is when she stares out our front window, down the street, as if expecting someone. She has done this since her toddler days and would remain riveted for hours if we let her. We used to tease her about waiting for the "second coming," but I have since come to suspect that the source of her fascination is the highway at the end our our street. There is something about the sight of moving traffic that intrigues her (even though that traffic is barely visible from our window).

When riding in our car I often catch her looking out the rear window, intently watching all the cars behind us. A variation of this odd looking behavior sometimes occurs when we take walks. Meaghan will turn her head and look behind us, as if she thinks someone is following us. I'm not sure what motivates this backward glancing. It's not traffic because it occurs whether we are near a road or not. This is one of several behaviors that I term enigmatic fixations.

Another one is Meaghan's obsession with certain articles of clothing. This began when she was about five or six. She developed a fetish for two particular sweatshirts of mine; one with a nylon patch she liked to feel and the other, just a plain, gray sweatshirt. She would get upset if I didn't don one or the other of these when she told me to "put on sweatshirt." Then, this fixation shifted to a particular coat of mine. She wanted me to wear it every time I went out. Of course, I didn't and when I didn't I explained to her why, which generally placated her. But still, for a while there she was overly concerned with everybody "putting coats on. Fortunately, these enigmatic fixations tend to come and go.

When we are out walking I'll sometimes notice Meg staring at the collar or zipper of my coat, or she will stare at a design on a sweater or top I am

wearing. She does this with others as well. Her interest in clothes is not limited to these fixations. Her own taste is eclectic. She sometimes plays "dress up" with clothes she finds lying around the house -- picking up a hat here, a belt there, a scarf or jacket. We get a real kick out of some of the 'Annie Hall' get-ups she contrives to put together. Meaghan can be very amusing at times -- and she senses this!

I know autistic kids aren't generally known for having a sense of humor, but Meg actually has quite a good one. She smiles and laughs appropriately and readily when we are being silly or making fun. She also smiles and laughs inappropriately at times, like when we are scolding her or being very serious. I'm pretty sure the latter is an anxiety reaction. She definitely can discriminate between humor and anger. Positive emotions make her happy and negative emotions make her nervous. The problem is that when she gets nervous she can't help smiling or giggling, which is extremely annoying, especially when you are trying to drive home a serious point. Meggie knows this, but it is a real struggle for her to keep a strait face.

Two other behaviors that I have no explanation for are Meggie'e propensities to kick or hit dogs and to slap babies on their heads; propensities that have led to some pretty embarrassing moments. Because Meaghan looks so normal, people have normal expectations of her. They don't expect a lovely little girl to walk over to a harmless infant and whack it on the head, and they are often (understandably) stunned and mystified when they observe her do so. Fortunately, I have learned to anticipate provocative situations and am careful to keep Meggie at arms length from infants and puppies when we are out in public.

The good news is that, just as the problems autistic children have with registering, integrating and modulating sensory input often diminish with time, so do sensory sensitivities, obsessions and compulsions. As the senses mature and start functioning in a more conventional manner (due to the energizing of connections) the need to gratify them compulsively lessens. Sensory problems or behaviors may not disappear altogether but, with training and experience, they become more manageable and less of an obstacle to learning.

The bad news is that these early sensory driven behaviors are often replaced by far more aggravating testing behaviors or "acting out." These behaviors also have a sensory basis in that they are often due to excess anxiety or arousal level, but they are also meant to be attention getters. Temple Grandin explains her childhood trick playing as "a substitute for deeper human connection." Tricks, she says, enabled her to "penetrate the world of other people without having to interact with them."102

Transitions, not from place to place so much as from person to person, are

problematical for Meaghan. For years, the mere proximity of another person, outside of our immediate family, would set her on edge. She would often flop to the ground when meeting new people or when confronted with new situations. Any changes in her routine were stressful for her, causing her arousal level to skyrocket. And the more over-stimulated she became, the more difficult it was for her to gain control over her impulses; impulses which drove her to test or act out.

Not all of Meaghan's testing was due to sensory overload, however. Her shenanigans in the LCDC classroom was most likely due to under-stimulation. She was not being consistently challenged to do much of anything, so she opted to amuse herself in her own way. Or perhaps her provocative antics were her way of asserting her identity or individuality. If so, her teachers were remiss in not stepping in immediately to teach her more appropriate ways of doing so.

When an autistic child is allowed or contrives to get away with a behavior more than once or twice, it becomes a "pattern." The child comes to associate the behavior with the person or set of circumstances and will "try it out" anytime he/she is in that situation. Behavioral patterns, once set, are very hard to break, which is why it is so important to stop any undesirable behavior at is onset. There can be no reasoning, coddling or soft peddling. Those who make allowances for bad behavior are doing the very worst thing they can do for an autistic child.

Autism is not an excuse for bad behavior.

Meaghan learned early on that she wouldn't be able to get away with much here at home, although for many years this didn't stop her from trying. Sometimes she would make a game out of behaving badly. She'd look me right in the eye as she picked up the salt shaker and tipped it or spilled the mail off the sideboard. If I told her to stop something, like pushing her chair back from the table over and over, she'd tease me with it, almost doing it but not quite. She'd watch me with a sly little smile and bright eyes, clearly getting a kick out of our contest of wills.

Sometimes I could get away with exploiting her innocent credulity. If she started to do something I disapproved of, I'd threaten to cancel a promised outing or to call her teacher and tell on her. She'd sober right up and promise to "be good." Occasionally, however, she'd call my bluff. She'd look me right in the eye and tell me to "call," or she'd go get the phone herself and hand it over to me.

One thing I've learned is that you must regularly vary your behavioral strategies when dealing with an autistic child. They are very bright and

quick to catch on to your methods. You must also use methods that your child clearly understands. Making promises or withholding privileges would only confuse or frustrate a child whose auditory processing was less than reliable. But setting limits and sticking to them is essential, especially early on.

Every autistic child has the potential for learning to behave acceptably, they just can't develop that potential on their own. They need to be motivated externally to achieve control over their impulses. I've always made it clear to Meaghan that there would be a consequence for her every action, be it positive or negative.

When she was younger, if she put a toy in her mouth, it got taken away. If she dumped her toys off her shelves or toppled over furniture, she had to pick them up. If she misbehaves more than once, she doesn't get her favorite food for dinner or to listen to her music at night. When I can predict a provocative episode, I warn her ahead of time what the consequence will be. I also apprise her of what she stands to gain if she behaves acceptably. I am able to use verbal "threats" and promises because I know that Meaghan fully understands the import of what I am saying. She also understands that I mean what I say; that I never fail to back my words up with actions.

Meaghan definitely knows the difference between good and bad and will tell me freely herself when she has done something "bad." This ingenuousness is an interesting aspect of autistic behavior. Even though Meg knows she will be scolded or punished if she does something she shouldn't do, she always comes to me and confesses her actions or shows me the evidence. It never occurs to her to hide anything from me, much less to lie or deny anything.

In fact, autistic children are among the most honest, generous and guileless of human beings. They do not lie, cheat, brag or talk back. Neither do they judge or attribute motives to the behavior of others. They accept people at face value. They seldom get angry or hold a grudge, even when they are treated poorly. They are rarely jealous, envious, resentful or competitive and are never petty, spiteful, mean or manipulative. Unfortunately, most of these positive traits go unnoticed or uncelebrated.

In living and working with a child with autism, it is all to easy to fall into the trap of just focusing on the negative; a trap that can only make both parent and child miserable. Although their conception of feeling states may be limited, autistic children can readily sense impatience, aggravation or disappointment in those they care about, and this makes them feel anxious, confused and incompetent; feelings that invariably undermine confidence and compound problem behaviors.

So, along with discipline, there must be plenty of love, support and encouragement. Because their behavior rarely warrants praise and approval, autistic children are often denied this ego-enhancing feedback, yet they need it every bit as much as other children -- if not more!

Meggie is delighted not by sitting on Santa's lab, but by the feel of all that hair in his beard. Santa

doesn't know just how close he is to being unmasked.

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What's Going On

SOCIAL BEHAVIOR, EMPATHY AND EMOTION

What is the core cause of the social impairment in autism?

In her book, Autism: Explaining the Enigma, Uta Frith writes: "The puzzle we must solve is why, despite an adequate level of intellectual development, there is communication impairment, and why there is no pretend play and what this has to do with social impairment.131 The answer might be that the triad of impairments that define autism: social, communicative and imaginative, all require that neural processing not only be well organized and highly sophisticated but that it be comprehensive as well.

The principle problem with social behavior is that it is driven by complex feelings rather than logic, and people with autism have a limited understanding of complex emotions (perhaps because of the immature cells and stunted connections in their limbic systems).

If neural impulses do not complete the full processing circuit then resulting perceptions might be adequate to allow for the mastery of some academic learning, but they will not allow for the ultimate self knowledge, the consciousness of self, that is necessary for any kind of successful interaction with others, be they real or imaginary.132 The ability to be aware of one's own thoughts, beliefs and emotions and to distinguish these from the thoughts, beliefs and emotions of others requires an intelligence that can only be achieved through the active engagement of every cell and circuit in every area of the brain.

What specific handicaps do people with autism have to overcome in order to cope and find acceptance socially?

For people with autism all behavior has to be learned and social behavior, because it does not follow a predictable pattern and cannot be practiced in a step-wise manner until it is gotten right, is the most difficult behavior to learn. Beyond this, people with autism often have little self-consciousness,

so they rarely feel any sense of shame or guilt over their actions. It rarely occurs to them to alter or inhibit what they feel like doing just because they are out socially.

Social interaction is another hurdle to overcome because autistic individuals don't really understand other people. Their minds simply can't effectively or efficiently grasp, analyze and interpret a broad range of "people" information in a coherent and flexible manner. And, without an understanding of how others are the same or different from themselves, they have no solid basis for either interaction or conformity. It's hard to "act like everyone else" if you can't figure out the ways in which you are acticin differently.133

Social interaction is further complicated by the physiological problems many autistics have with rapid attention shifting between auditory and visual stimuli. Their narrowness of focus and mono-channel processing makes it exceedingly difficult for them to follow, much less actively participate in, rapidly changing conversation and social intercourse.134

Flexibility and adaptability, two traits that are essential to achieving any degree of social success, are in fact, the very antithesis of what autism is all about. As a rule, people with autism prefer sameness, routine, familiarity and predictability in all things; preferences that invariably put them out of sync with the transient social world.

Is there a difference in the social behavior of a child with autism and a child with PDD?

Autistic children frequently demonstrate little awareness of other people; they are often characterized as being “aloof” or “in their own world.” PDD children, on the other hand, are aware of others, they just have no idea how to relate to them.135 You’d think, because of their interest in people, PDD children would fare better in social situations than classically autistic children, but actually the reverse is often the case -- at least in their younger years. Being essentially oblivious of others, many autistic children tend to just focus on amusing themselves when they are out socially, or they might isolate themselves either physically or mentally, by simply tuning out what is happening around them.

PDD children, on the other hand, want to be part of the group, so it is all the more frustrating for them that they can’t figure out how to do so. Temple Grandin writes that, in social situations she felt like "a scientist trying to figure out the ways of the natives. I wanted to participate, but I didn't know how." She always felt "like an observer... like someone who watches from the outside."136 Because PDD children cannot understand the

intentions people have, the emotions they feel, the reason people act the way they do or say the things they say, they are apt to feel confused and overwhelmed by it all. For many, the stress of wanting to belong but being intrinsically unable to do so results in negative behavior.

How does a lack of empathy compound the problem of learning to behave acceptably?

Perhaps the biggest stumbling block individuals with autism must contend with in their struggle to cope and find acceptance socially is their inherent lack of empathy. “What empathy requires is the ability to know what another person thinks or feels despite the fact that this is different from one’s own mental state at the time. Empathy presupposes a recognition of different mental states.”137

Imagine how difficult it would be to get through a day if you could not read minds. Whether we are consciously aware of it or not, we all do this all the time -- not just when we look at and talk to each other -- but when we are simply around others. In large part we base our behavior, our thoughts and feelings, on the behavior, thoughts and feelings of those around us.

But, if you lacked this basic 'mentalizing' propensity, this innate ability to intuit or interpret the minds of others, as people with autism do, if other people were merely physical presences in your midst, you would be at a loss as to how to react or conduct yourself in many situations. It wouldn't occur to you to alter or adjust your behavior in response to its effect on others, as you would have no way to judge what others were thinking about you. You'd be unable to intuit the expectations and pick up the social cues that would allow you to fit in and participate.

Beyond this, if you lacked the ability to conceptualize states of mind, to make sense out of what motivates people to do and say and feel the things they do, than you would have no basis for comparing or reflecting on your own mental state.138 And, if you had so little consciousness and confidence in your own self as an individual, it would be mighty hard to relate to others in any meaningful way.

Why do people with autism often have such difficulty recognizing and understanding emotions?

For every emotion there are three elements. How we feel subjectively, how our body responds and the behavior we associate with how we feel.139 This latter association element is where autistic emotional processing (like the cognitive processing) breaks down. The right parietal lobe is the processing center for the perception of emotions.140 This is where the association

aspect of emotion comes into play, the point at which processing switches to a response mode. If there is damage to this lobe of if it is not getting consistent sensory input and feedback, a child would have difficulty reading facial expressions, recognizing tone of voice and interpreting and reciprocating feelings.

It all comes back to an impairment in the limbic system, particularly in the amygdala and portions of the thalamus. (See Sensory Processing, Behavior & Memory. If these structures in autistic brains are failing to signal to babies the importance of faces early on, then the babies become biased to look at things rather than people, and this early preference shapes their developing brains.141 Because they are not paying attention to faces, using the Temporal lobe fusiform gyrus, brain circuitry to and from this area is not developed and built upon, resulting in diminished affiliative drive and social orientation.142

Temple Grandin speculates that because humans have larger cortexes in their brains and therefore have greater abilities to precess information, their expression of emotion is more complex that that of animals.143 But, if the neural communication network in a human brain is atypical or dysfunctional, as it is in autism, this might result in a more limited processing of information, which would, in turn, reduce emotional interpretation and expression to a basic form more akin to that of animals.

For people with autism there is little or no relating or comparing of emotional memories, ideas or experiences. Each emotion triggering stimulus is dealt with on its own merit, and most often, because of a lack of modulation, that stimulus is either mitigated or exaggerated by the time it reaches the limbic system and parietal lobe. This is why the emotions of people with autism are often so unbalanced. If they are frightened or upset, they are intensely frightened or upset. Or they might be laughing crazily one moment and weeping uncontrollably the next. Their arousal level, dictated by the unbalanced modulation of input, fluctuates from one extreme to another. And people who have so little control over their emotions are going to have little control over the behavior those emotions elicit.

What strategies are most effective in helping individuals with autism with social adaptation?

Temple Grandin writes that she struggled in the social arena until she latched onto a concrete visual corollary for the abstraction of "getting along with people."144 She used symbols of doors and windows. Each time she faced a new experience or social challenge she would visualize herself opening a door. The symbolic action of going through the door helped her to

fact and overcome her fears and anciety about changes and new people in her life.

This type of symbolic crutch may help some individuals with autism, however, not many are as clever, creative and confident as Temple Grandin. Most are plagued by considerably more uncertainty in social situations. They need social cues and "people" reactions to be spelled out for them, so they can grasp the reasons for behaving or not behaving in certain ways. In Temple Grandin's words: "Teaching a person with autism the social graces is like coaching an actor for a play. Every step has to be planned."145

For those individuals who can read, social stories and rule cards can be helpful in making people and social situations more predictable and understandable. Social stories are simple stories that focus on a single behavior and suggest positive alternatives or define a desired social skill and explain why it is important. As Carol Gray's guidelines recommend, these stories should be written entirely in the first person, thereby validating the perspective or point of view of the autistic reader, while at the same time trying to put an instructive spin on things.146

Rule Cards consist of a single rule written in bold print on an index card. For literal-minded autistic children rules can be very effective. They might not pay a lot of attention when you remind them over and over not to do something, but if you put those reminders into official looking visuals (even going so far as to circle in red and draw a black line through the word "No") they tend to take them very seriously indeed.

For higher functioning autistics, those who are smart enough to discern their social deficits, family, friends or teachers can serve as valuable role models and guides. At a conference I recently attended an extremely intelligent and disarming autistic adult recounted how, as a teenager, she used to go around asking her friends and acquaintances pointblank what she did that they found bothersome or annoying. As bright as she was, she couldn't fathom this most basic information nor ascertain how the things she did were perceived by those around her. But the explanations and constructive criticism she got in response to her frank queries helped her to make sense of much of what was a mystery to her and to adjust her actions and behavior accordingly.

Temple Grandin also attributes the gains she has made in social adaptation to long discussions with friends and relatives, who were able to serve as translators of the emotions underlying interactions. She no longer needs to rely on visual symbols to get her through social situations because of the advise she has gotten and the knowledge she has garnered from reading and experience. But it took her four decades to learn enough to feel relatively comfortable around others. How much easier a time might she

have had if she had found more acceptance and help along the way.

What changes must society make in order to better accommodate its autistic population?

Certainly, there is no substitute for real life experience. Unfortunately, this experience is not easy to come by, especially for less able autistics who need more support and supervision. Because of the level of monitoring they require, the vast majority of children with autism experiences only the sheltered, highly structured and predictable existence they are accustomed to leading at their schools and residences for the first two decades of their lives. They are given few opportunities to participate with typical peers in social, recreational and vocational arenas, so most reach adulthood with tragically little real life experience.

Part of the problem is that, as things stand, people with autism are expected to do all the adapting or remain shut off from the world. Cities, towns and individual communities are not doing their part. Segregated special needs groups and activities do not fill the bill. There must be more genuine acceptance, more opportunities, more education and support, regardless of cost of inconvenience, and social instruction and inclusion must begin early enough in an autistic child's life to make a difference.

What’s Going On?

SENSORY PROCESSING, BEHAVIOR AND MEMORY

How does sensory information travel to and from the brain?

Sensory receptors in our eyes, ears, nose, mouth and all over our skin pick up sensory energy and change it into streams of electrical impulses. These impulses are picked up by nerve cells or neurons. Neurons consist of a cell body or nucleus and projecting fibers called axons and dendrites. They are generally arranged in long, thin bundles called nerve tracts.

Sensory impulses travel along nerve fibers and tracts to and through our spinal cord and brain. Ascending, or sensory input, tracts, carry electrical impulses concerned with sensation up to the brain. Descending, or motor response, tracts, carry movement messages from our brain down to the muscles and organs. Some nerve tracts carry both types of information.

What structures are involved in processing sensory information once it reaches the brain?

The nerve tracts of the spinal cord join up with the brain at the brain stem. The brain stem contains clusters of nuclei that serve to combine and coordinate incoming sensory impulses, relating them to other information in the central nervous system. The cerebellum, wrapped around the back of the brain stem, contributes to the integration of sensations, dealing primarily with those concerned with balance and movement.

The thalamus, corpus callosum, hippocampus, amygdala, hypothalamus and other structures that comprise the limbic system, located in the central portion of the brain, are involved in fine-tuning perceptions, in regulating the expression of feelings and emotions and in the organization of voluntary behavior.

The remaining bulk of the brain, consisting of the cerebrum and its thin outer layer called the cerebral cortex, round out the processing process. The

cerebrum and cerebral cortex are divided into four lobes where specific functions are housed. The frontal lobe, which takes up the entire anterior or front half of the brain, contains regions involved in motion, mood, intention, memory and intellect. It functions in an “executive” capacity, while the posterior areas of the brain are primarily involved in carrying out its orders.2 The parietal lobe, located at the upper rear (superior posterior) of the brain, primarily processes touch sensations. The occipital lobe at the back (inferior posterior) of the brain, deals with visual input. And the temporal lobe, located at the base of the brain, primarily copes with hearing and language.

Although each lobe is specialized to interpret information from just one or two senses, each receives information from the other senses as well. In this way, the cerebral cortex works to refine and integrate the basic information passed on by the brain stem into precise, detailed perceptions.

At the very end of this refinement process are the cortical association nuclei, which serve to coordinate different kinds of sensory experience into a meaningful, coherent whole. Simply put, a child sees a dog. His brain stem makes him aware that he is seeing something familiar. The details of the dog’s visual image become more precise as electrical nerve impulses travel to the occipital (visual) lobe of his cerebral cortex. The impulses then travel to and from other association areas where the dog image is compared with ideas and memories of other dog experiences. This information is then relayed back down to limbic structures, a mental evaluation is formed and a response to the sight of the dog is planned and initiated. The child either pats the dog or runs away from it depending upon the information generated in the association areas of his brain.

What factors might impede or interrupt the smooth relaying of sensory impulses to the association areas of the brain?

A lack of adequate sensory stimulation might fail to trigger the growth of neuronal fibers, or the fibers might form but fail to connect with other fibers. Neurons that don’t connect, or make use of their connections, die off. Connections, or synapses, that are not actively generating and transmitting electrical impulses and therefore are not receiving any chemical message to stay live, “commit suicide.”3 When neurons die off or disappear, so do their connections and interconnections, which would account for a breakdown in information processing.

Another explanation for the delayed or inefficient relaying of messages might be that some connecting axons are not myelinated. Myelin is a fatty substance that covers and insulates most axons in segments or sheaths. Nerve impulses or signals jump along the insulated segments of a myelinated axon, receiving a fresh boost of energy at each uninsulated gap

to speed them along. Axons that don’t have a myelin sheath conduct their signals more slowly and less efficiently than those that do.4

The primary problem, however, probably occurs at the “synaptic gap,” as the result of a neurotransmitter imbalance. Neurotransmitters are chemicals that carry nerve signals across synapses. They bind with or lock onto receptors on receiving neurons affecting the neuron’s ability to “fire” or send messages.5 Some neurotransmitter molecules released into synaptic gaps are excitatory or facilitatory, making neurons more likely to fire, while others are inhibitory, making them less likely to fire.6

The combination of facilitatory and inhibitory messages produces modulation, which is the nervous system’s process of self-organization.7 An imbalance in neurotransmitter levels would adversely affect the conductivity of the synapses, affecting both the modulation and communication of input and throwing the entire nervous system out of kilter. The crucial neural message sending activity within the brain would either be slowed, speeded or interrupted, making it exceedingly difficult for neural impulses to stay on track and on target.

What might happen to sensory impulses in the autistic brain?

From the brain stem, every impulse or message divides and subdivides through a complex maze of nerve fibers and across countless millions of synapses en route to the association areas of the cortex. An appropriate perception and response behavior is produced only if these impulses stay on track. If they veer off, if they miss a synapse or two along the way, if they get lost or held up somewhere along the line, resulting perceptions would be fragmented, their meaning distorted or incoherent, and response behavior would be delayed and, more often than not, abnormal or inappropriate. I believe this is what happens in autism.

Uta Frith asserts that in autism, “there is hazard, followed by havoc, followed by harm.”8 If we assume that the underlying problem is a faulty neural connection forming mechanism (hazard), than neurotransmitters could certainly be implicated in causing the havoc. At every step along the way, one or more of these brain chemicals kick in to impede or wreak modulatory havoc on synaptic processing by failing to provide the proper amount of stimulation. This results in serious neurological harm as connections fail to form or function, and neurons in key processing points, like the limbic system, fail to thrive or die off. Because of a connection network that is incomplete or dysfunctional, the thought process is incomplete and, consequently, atypical.

Why are the association nuclei particularly susceptible to impairment due to a

breakdown in synaptic processing?

The cerebral cortex is comprised of densely packed neuron nuclei, while the cerebrum consists of the fibers or axons of these nuclei. Specifically, it consists of projection fibers which connect the left and right brain hemispheres and convey impulses back down to the brain stem and cerebellum via the thalamus and limbic structures. It also consists of short association fibers that link adjacent areas of the cortex to one another and of long association tracts that convey signals from lobe to lobe, connecting anterior and posterior cortical regions.9

In the cerebrum, these long association tracts are most susceptible to synaptic dysfunction because of their complexity and the number of synapses involved. If any connections along these tracts are impaired, neural communication would be slowed or shortcircuited, resulting in a deterioration of the nerve cells receiving the transmission. Many of the nerve cells receiving input from these tracts are located in the limbic system and cerebellum, which are responsible for planning and coordinating motor responses, perceptions and intentional behavior.

How does this breakdown in processing jive with the findings of neuroanatomical studies of autistic brains?

Although there is much we don’t know about the pathology of autism, high-tech neuroanatomical research has come up with a few key findings. One of the most significant is in the limbic system, particularly in areas of the amygdala and hippocampus, where neural cells have been found to be abnormally small and tightly packed.10

Both findings are consistent with a lack of adequate stimulation; nerve cells surviving but failing to sprout as many bulky, myelinated connecting fibers as normally sized and spaced cells. Functional MRI studies on autistic brains have revealed areas of the amygdala filled with cerebral spinal fluid, confirming a lack of brain activity in parts of this structure. Brain activity increases blood flow and oxygen delivery to regions of the brain. Those regions failing to receive enough oxygen fill with fluid.

Autopsy research has also revealed both cerebellar cell loss and immature neuron development in autistic specimens; findings that can also be explained by a breakdown in neural communication; cells not developing or dying off because they are not receiving enough feedback to keep them active and alive. A congenital reduction in the number of cerebellar Purkinje cells with preserved olivary neurons may indicate that the neurological damage resulting in autism occurs in the first trimester of prenatal development.11 Age related anatomical changes in neuron size and number

in the cerebellum and brain stem inferior olive indicate that the neuropathology of autism is probably an ongoing process that continues into adulthood.

How might these cerebellar and limbic system findings cause or contribute to autism?

It is more difficult to correlate the autopsy findings in the cerebellum to the clinical features of autism than it is to link impaired limbic system structures to the syndrome. It is possible that, in addition to its involvement in balance and coordination, the cerebellum plays a role in the areas of emotion, cognition, behavior, mental imagery, anticipatory planning, spatial orientation and some aspects of language processing and attention.

More compelling and clear-cut is the correspondence between behaviors seen in autism and the limbic system’s recognized roles in memory, emotion and social expression. Specifically, the amygdala controls aggression and emotions, which ties into both the aggressive and self-abusive behaviors of some autistic individuals, as well as their extreme passivity and appearance of being emotionless or “flat.” Neuronal activity in the amygdala is related to memory formation, especially under conditions of emotional arousal.

Experiments have shown that when their amygdala is removed or damaged, animals exhibit autistic-like behaviors, including social withdrawal, compulsivity, loss of fear of normally aversive stimuli, difficulty adjusting to novel situations and difficulty retrieving information from memory. Additionally, the amygdala is highly responsive to a variety of sensory stimuli, such as sounds, sights and smells.

The hippocampus, the other limbic structure evidencing neural abnormalities, is primarily responsible for learning and memory. Damage to or removal of this structure results in an inability to store new information into memory, as well as in stereotypic and self-stimulatory motor behavior, hyperactivity and disordered responses to novel stimuli.

All three brain structures (cerebellum, amygdala and hippocampus) play some role in the laying down of memory.

What do we know, or think we know, about memory?

Memory is far more than just a vast store of mental images or representations of past experiences. Not only are most memories, not stored as images, but recent studies have cast doubts on the premise that any memories are representational. The one thing that is certain about memory is that it is a complicated business; a product of the activity of

numerous neuronal networks in the brain.

Memories are formed by a strengthening of the communicative links between neurons. The stronger the links, the stronger the memory. Association comes into play in that the more links there are to other similar facts, the more substantive a memory is and the more easily it is recalled.(M,130) Of course, chemical changes, the synaptic activity of neurotransmitters, underlie the formation of all memories, whether they involve the laying down of basic skills or the mastery of a foreign language.

Not only is the memorization process different for these two types of learning, but the areas of the brain involved in the process are different. Procedural memories, which involve the acquisition of motor skills or abilities through repeated trials are formed primarily in the cerebellum, while declarative memories, involving the integration, internalization and generalization of factual information and experience, have their genesis in the amygdala and hippocampus of the limbic system. These memories are then screened by the thalamus and stored in the frontal cortex. Declarative memories having to do with language or significant events, along with the ability to recognize familiar faces, are filed away in the left temporal lobe.

These are all forms of long-term memory, but our brains must also accommodate short-term memories, which enable us to put together a coherent sentence, do a math calculation or remember our place in a book we are reading. These memories, which are sorted and filtered through the thalamus, involve a collaboration of phonological, visual-spatial and executive capacities.131

In autism, procedural (or rote) memory, which presents very early in development and involves less neural circuitry, appears to be more or less intact. The problem lies in the laying down of declarative memories, which comprise all sensory modalities and mediate the processing of all facts and experience. This latter memory system is highly associative, involving the integration. internalization and generalization of all types of information.

How does the short-circuiting of sensory impulses affect memory and intentional behavior in autism?

Brain function is hierarchically organized. Sensorimotor activities are carried out by individual neurons in networks, whereas perceptual insights leading to intentional behavior are organized by large masses of neurons. The association nuclei in the limbic system are the highest echelon in the information processing hierarchy. If sensory impulses are somehow impeded from reaching these final organizational nuclei, or if there are too few nuclei to do the job, the meaning of sensations or perceptions would be

skewed or incomplete -- as they are in autism. And if perceptions are “off,” than responses to those perceptions--in the form of actions, emotions or behavior -- are bound to be “off.”

If memories are formed by a strengthening of the synaptic connections between neurons that are activated in specific patterns as a result of learning and experience, it follows that any problem with neuronal or synaptic dynamics would cause a problem with remembering or with relating new information to previously stored information, as Dr. Bernard Rimland theorized in his book on Infantile Autism three decades ago. And as “learning and memory constitute the fundamental processes of experience and provide the substrates for cognition and adaptive behavior,” the lack of an intact, fully functional memory system would severely impact both learning and intentional behavior as is the case in autism.

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Chapter Thirty Six

“And the Good News Is”

In winding up my daughter’s story, I have to acknowledge how fortunate we have been on many counts. We were fortunate that Meaghan was born when she was and not a decade earlier, when there were no schools specifically for autistic children around. We were also fortunate in being in the right place at the right time to be able to give Meaghan the best education she could get. I know that she would not be the child she is today had she not had the benefit of some of the best private schools and teachers in the area; teachers whose unstinting patience and guidance has, over the years, enabled me to do my part in helping to bring Meggie along.

Of course, our journey is far from over. As Jerry Newport, an autistic savant, claims: “Autism is a dynamic condition: the only thing that’s constant about it is that it’s constantly changing.”199 And in this change there is both hope and despair.

I feel fortunate that the changes I have observed in my daughter over the past year have, for the most part, been positive ones. One wonderful change has been in Meaghan’s attitude. She is no longer afraid to try or experience new things. Last Christmas, for the first time ever, she actually enjoyed opening her presents and spent time playing with each gift. She now understands what the holidays are all about and looks forward to them and to family get-togethers, up here or down in New York, with pleasure.

Not only is Meaghan more open to experience these days, she is more aware of and interested in everything around her. Years of exposing and conditioning her vision to stimuli, have brought her to the point where she is now able to take pleasure in looking. One of her favorite pastimes is browsing through books and magazines. She really studies what’s on the pages rather than absently flipping through them as she once did, and this ability to sustain her visual attention has made learning easier and far more enjoyable for her. She just needs to learn to trust in her newfound ability to use her own mind, and we need to keep challenging her to exercise it. “I

must think,” she often says to me, pointing to the top of her head.

Meaghan definitely thinks more about the use of her language these days. She now has an extensive vocabulary, understands and uses tenses, pronouns, plurals and all connecting words correctly. Best of all, she no longer needs to rely on me to say what she has to say. She is more conscious of the meaning and usage of words and is using them in different combinations more freely and intentionally.

Some of these positive changes are undoubtedly attributable to positive changes in Meaghan’s body chemistry. A child who feels better is going to learn and behave better. But the use of drugs or supplements to improve any aspect of an autistic child’s brain or body functioning is not going to make them better unless you couple dietary therapy with plenty of cognitive, social and behavioral intervention.

Because of June, I no longer have to say “if only” to social opportunities where Meaghan is concerned. I know that her “real life” training is in the best possible hands. I also know that she is receiving the best possible education at Higashi, where she is continually being challenged to do more and to think more about what she is doing.

Not that Meaghan doesn’t still try our patience at times. Although she is less prone to test, she has not entirely abandoned her mischievous ways. But I believe Meaghan is beginning to come to terms with her autism. We both are. We are able to talk about her actions now and weigh the consequences together, and this communication has helped to curb her impulsivity. Of course, there is no telling what the rest of her teen years will bring. And lurking behind them is the unfathomable specter of adulthood. Like most parents I pray that things will only get better for my child, but a lot will depend on what happens on the medical front in the next few years.

Neuroscientists are learning more about the brain daily as technology makes possible ever more intricate imaging and diagnostic techniques. One in particular, Magnetic Source Imaging (MSI) measures the brain’s magnetic forces and electro-chemical waves and pinpoints epileptic and sub-epileptic activity, which can then be surgically treated. This technique, along with others that show promise in treating or reducing autistic symptoms, are already available, they just need to be identified and made accessible.

Other advances are being made on the genetic front. Researchers are edging ever closer to pinpointing a genetic basis of the syndrome. Examination of blood samples of people with autism has revealed a variant

allele (mutation) of the protein coding region (exon) of the HOXA1 gene that resides on chromosome 7.201 Having this deviant allele approximately doubles a person's risk of developing autism, but not all persons who develop autism have his allele, which means other genetic /biological /environmental factors must be implicated.

Because most genetic disorders result from many different deviant alleles of the same gene, the fact that scientists have been able to narrow their search down to variants of HOXA1 is a huge step forward. If more alleles associated with autism are found and transferred from humans to laboratory mice, researchers should be able to learn more about the brain damage or difference that underlies the syndrome.202

In an article that appeared in the New York Times the 28th of December, 1999, Dr. David Amaral is quoted as stating, “In autism an entire brain circuit has been compromised.” The article goes on to say that “researchers have only just begun to study how different brain regions interact dynamically to give rise to (neural) circuits, which puts autism at the frontier of modern neuralscience.”203 I find it encouraging that the intriguing neuro-biochemical nature of the syndrome has finally been recognized by the medical establishment. The shame is that it has taken this long to get this far.

While millions of government dollars are spent annually to fund research on other types of syndromes, injuries or diseases, individuals with autism have been left to struggle and suffer; to live lives that never reach maturity or fulfillment, because there has been little sense of urgency where autism is concerned. True, autism is not degenerative or fatal. It’s victims are not dying, but neither are they truly living.

I recently attended an autism conference at which one of the lecturers, Anne Donnellan, wound up her remarks by stating, “the lesson of my experience (in teaching autistic children) is great humility. Many of the individuals I once worked with are now young adults, who have spent their entire lives getting over their autism. Yet, they are still living what Thoreau might have called “lives of not so quiet desperation” surrounded by people paid to be with them.204

Fortunately, some private organizations, like the Autism Society of America, have taken up much of the governmental slack and have made great strides with important projects like DAN (Defeat Autism Now) in affording us the knowledge and tools to treat and hopefully one day cure this insidious syndrome. But, while I am grateful for and encouraged by all the progress that has been made over the past decade in both “treating” and “managing” autism, my optimism is given pause by those, long in the forefront of the autism cause, who are beginning to question whether we have really come

as far as we think we have come.

Anne Donnellan, once a staunch advocate and practitioner of applied behavioral analysis, allows that she has, over the years, come to question the merit of this approach. She asserts that much of what we claim to know about autism is “invented knowledge,” having no real basis in fact.205 This knowledge “permits us to move incautiously toward an assumption that we can know or understand the motivation or preferences of people with autism by observing their outward behavior, when, in fact, the observable behavior of individuals with autism often has little to do with our assumptions about what motivates it.206

More and more first hand accounts are emerging of what it is really like to be autistic. Donna Williams writes of the inconsistent and unpredictable nature of her daily experience, referring to “sudden system shifts and shut downs” caused by such elusive things as florescent lighting, the scent of someone’s perfume or a variation in their tone of voice. These shifts caused her to be unable to move or speak or to behave in ways that were as confusing to her as they were to others.207

Other first hand accounts of unsuspected problems in “starting, stopping, executing, combining and switching related to actions, perceptions, communication, thought and memory” must, at the very least, call into question the blithe assumption on the part of many that they can adequately or validly evaluate people with autism with standardized intelligence or performance tests.208

As far as we have come, there is still much that remains a mystery about autism, even to those of us whose lives are immersed in the day to day reality of the complex syndrome. But we can help by broadening the understanding of those around us who lack our first hand knowledge. At the very least, the basic facts about autism must be disseminated, the myths and stereotypes dispelled. Autism need not, should not, disqualify anyone from leading a rich, full life.

In the words of Jerry Newport, a man who “still struggles daily with some autistic features and benefits from others,” we must replace the “one size fits all” American credo with an inclusion mentality.209 People with autism did not ask to be different, nor does their unique way of thinking and acting make them any less human than the rest of us. Not only must there be more acceptance of those who think and learn differently, but they must be granted more of a voice in making decisions about their personal lives and about public policy.

If no cure is in the offing, at the very least we should be able to look

forward to a day, in the not too distant future, when children and adults with autism will be better understood and welcomed into the mainstream. Whether this societal change will occur in time to make a difference for my daughter, I cannot say. But I do know that I would not trade my experience in raising my unique child for any other.

My daughter has taught me far more than I have taught her about courage and perseverance. She has had to struggle hard to overcome many obstacles in order to make the gains she has made to become the person she has become. I have a lot of faith in her. I know that, as age and experience make her more confident and afford her more self-control, she will find her way in life. And I look forward to taking the rest of the journey with her. Who knows, we may reach that mountain top yet!

One of my favorite pictures of Meaghan - one of thousands of faces of Autism in America and around the World

- and their numbers are multiplying daily.

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Chapter Thirty Five

What Might Help

(Bear in mind this was written three years ago, when secretin was "big news")

Meaghan remains a work in progress. Every month there are changes -- new behaviors to be dealt with, problems to be addressed, improvements to be celebrated and built upon and treatment ideas to be tried out.

When we first learned about “the secretin cure” last fall, we jumped right on the bandwagon. After numerous gastrointestinal procedures failed to detect a problem, Meaghan underwent an endoscopy last December, during which she was given an infusion of secretin.

Within days of receiving this hormone, she began to talk more and to say a greater variety of things. It was as if her mind had finally been freed up from the same old cycle. She also evidenced greater awareness of and interest in her surroundings. She began playing with dolls and toys she hadn’t noticed or touched in years, and she became noticeably happier. Her gastrointestinal problems also improved, although whether this was due to the secretin itself or to the fact that her appetite diminished a bit is hard to say. In any event, she was no longer so prone to gobble down her food, so there was less stomach distress and loud, frequent burping.

The local supply of secretin (at least the supply at the hospital where Meg’s gastroenterologist was based) ran out after her endoscopy, so there was no follow-up injection until we found another source in mid-March. Meg received fifty units of secrepan, the Japanese version of secretin, a week before her fourteenth birthday. Following the injection she was keyed up for several days, but when she settled down we thought we noted some of the same benefits we observed with the first dose. The three month interval between infusions was too long for the secrepan to have any cumulative effect.

Meaghan received three follow-up injections one hundred units of secrepan

last spring and summer at six to eight week intervals. Although there appeared to be some improvement in her awareness and verbal expression, the gains were minimal and might have been due more to wishful thinking on our part than to the secrepan. I have since learned that the amount of actual secretin in secrepan is subject to debate, and that perhaps higher doses of secrepan are necessary to achieve the same benefits of the Ferring formula.

For the time being we have opted to suspend further injections pending the initiation of clinical trials by the Massachusetts based Repligen Corporation; trials that will involve a synthetic, human form of the hormone purported to be purer than the Ferring porcine version. If the results of these trials are positive, the government will be obliged to sanction the use and efficacy of secretin in treating autism, and hopefully the hormone will become more readily available and attainable. Until such time, however, I am pursuing other options.

Because of the miraculous change I observed in Meaghan’s behavior after she started on birth control pills two years ago, I know that autistic symptoms can be alleviated, if not eliminated, biochemically and pharmacologically. Unfortunately, the high level or particular combination of estrogen and progesterone in the original prescription caused a tremendous surge in Meg’s appetite along with a serious water retention problem. When neither problem showed signs of abating after six months (and a gain of forty pounds) I was forced to switch Meg to a less potent pill.

On the new pills she shed the extra weight and was no longer so ravenous, but neither was she as calm. In fact, her behavior began a gradual decline. The whining and repeating started up again, and she began cocking her head as if listening to some inner voice and making an annoying squeaking sound. Her new way of greeting people was to take their hand and bring it to her face, saying “slap me.”

She also became overly food conscious, picking at morsels and helping herself to appealing fare on other people’s plates. Instead of grabbing at people’s clothes, she would zero in on the food they were eating, snatching french fries or ice cream cones right out of their owner’s hands. This fetish threw a wrench in our efforts to broaden her social horizons. Rather than focusing on community-oriented goals, June had to backtrack and just focus on keeping Meg out of mischief.

I was sorely tempted to switch Meaghan back to the original pills and let her bloat up, but I resisted the urge and focused instead on finding some alternate chemical means to control her behavior. I bought several books on nutritional supplements and poured over their contents. I found the reading eye-opening. Although I had tried numerous pills and potions over the

years, I had not bothered to look into exactly how it was that they were supposed to be helping Meg. I’d just given her the stuff and hoped for the best. And, because I didn’t understand the metabolic role each substance played in the body, I didn’t bother to prolong any trial if I failed to note improvement within a few weeks.

This time I did my homework and familiarized myself with the functions of the various nutritional supplements. My goals in selecting supplements were first and foremost to calm Meg’s anxiety. Then I wanted to increase her awareness and focus, bolster her memory and cognitive capacity, combat her obsessions and perseverations, alleviate any gastric distress and vanquish any harmful antibodies, opioids or toxins in her system. In short, I wanted to make her body the best it could be, so that we could work on making her brain the best it could be.

I began with vitamins. First and foremost, a B-Complex supplement, including thiamine, riboflavin, niacin, pantothenic acid, B6, B12, folic Acid and biotin. As a group these vitamins act as precursors for the coenzymes that help to maintain the health of the nerves, skin, eyes and liver. They assist in carbohydrate, fat and protein metabolism and energy production, bolster muscle tone and circulation, produce digestive acids in the gastrointestinal tract, aid the immune system and promote proper brain function. Of all the B-vitamins, B6, niacin, and folic Acid are involved in the most functions relating to autism, so its a good idea to supplement these two vitamins individually, in addition to the B-complex. As supplementing a single B vitamin can interfere with the synergy of all the B vitamins, causing their depletion, no B-vitamin should be taken alone.

I don’t believe much has been made of niacin’s possible role in contributing to autism, so I will go into it a bit here. The biologically active coenzyme forms of niacin or nicotinic acid are NAD+ (nicotinamide dinucleotide) and its phosphorylated form NADP+. NADP is hydroxylated into NADPH. NADP and NADPH are precursors of dihydrobiopterin (BH2) and tetrahydrobiopterin (BH4), conenzymes necessary for the activation of the enzymes tyrosine hydroxylase and tryptophan hydroxylase. The activation of these enzymes results in the formation dopamine, norepinephrine and epinephrine (from tyrosine) and serotonin (from tryptophan). A deficiency of niacin or a problem with its metabolism could therefore cause a problem with the formation of all four neurotransmitters, which have been implicated in causing or contributing to autism.

Two other vitamins I’d advise supplementing are choline and inositol. Not only is choline needed for the transmission of nerve impulses from the brain through the central nervous system, but, along with inositol, it helps to form lecithin, a type of lipid needed by every living cell in the body. Cell membranes, which regulate the passage of nutrients into and out of cells

are largely composed of lecithin, as is the protective sheath surrounding the brain. (If you opt to supplement choline and inositol, it is not necessary to supplement lecithin.)

The last two vitamins that might prove helpful are antioxidants, which means they help protect the body against infection and the harmful effects of pollutants. The esterified form of vitamin C (Ester-C) enters the bloodstream and tissues four times faster than standard vitamin C and stays in white blood cells longer. Coenzyme Q10 plays a critical role in cellular energy production, aids circulation, stimulates the immune system, increases tissue oxygenation, helps maintain cardiovascular health and has the ability to counter histamine, lessening allergies.

As Vitamin D is required for the absorption and utilization of calcium and phosphorus by the intestines, it's a good idea to supplement this vitamin as well in the winter months. Year-round supplementation is not necessary as fifteen minutes of sun exposure three times a week supplies us with adequate Vitamin D.174

Like vitamins, minerals function as cofactors in the enzyme catalyzed reactions that produce energy and enable the body to perform all its functions. Without minerals, vitamins cannot be properly utilized and visa versa. The minerals that might need supplementation in the diets of autistic children include calcium, magnesium, potassium, and phosphorus. Because some minerals compete with each other for absorption it is important to take certain ones in balanced amounts.

Calcium exists in two forms that have quite different functions in the body. One form, calcium phosphate, functions to form and maintain strong bones and teeth. The other unbound, ionic form (Ca2+) performs critical functions in muscle contraction, nerve impulse transmission, ion transport and transmission of signals across cell membranes.175 Calcium supplements are more effective when taken in separate doses throughout the day. When taken in the evening, calcium can help to promote a sound sleep. Antacids are not an optimal source of this mineral, as they also serve to neutralize the stomach acid needed for absorption.

Another mineral that is vitally important to cell growth and neural transmission is potassium. The secretion of stress hormones causes a decrease in the cellular potassium to sodium ratio, which may increase the body’s potassium requirement. Sodium works with potassium to promote a healthy nervous system but, as it is available abundantly in virtually all foods, it does not need supplementation. Because it assists in calcium and potassium uptake, magnesium should always be taken in conjunction with these minerals. Beyond this, it serves as a vital catalyst in the enzymatic activity involved in energy production. A proper balance of magnesium,

calcium and phosphorus should be maintained at all times, as an insufficient or excessive amount of one of these minerals will have an adverse effect on the others.

There are approximately twenty eight commonly known amino acids that combine in various ways to create the proteins that are an essential part of every living cell in the body. The enzymes and hormones that catalyze and regulate all metabolic processes are comprised of amino acids, as are the chromosomes and genetic “codes” passed on in cellular DNA. Some amino acids also act as neurotransmitters, or as precursors of neurotransmitters, aiding in message transmission to and from the brain.

Amino acids that cannot be produced in the body and must be obtained from the diet are classified as essential. Those that can be manufactured in the body from other amino acids are termed nonessential. This doesn’t mean that they are unnecessary, only that they need not be obtained solely from the diet. No amino acid is superfluous as proper protein synthesis cannot be carried out by the body if even one amino acid is missing. The enzyme DPP-IV, found on epithelial cells in the kidney, is responsible for breaking down peptides into amino acids, which are then reabsorbed. The absence or malfunction of this enzyme could explain why many people with autism have low levels of specific amino acids despite a diet sufficient to support normal levels.

Some essential amino acids available in supplement form are lycine (necessary for the absorption of calcium), methionine, phenylalanine (which converts into tyrosine) and tyrosine (used to synthesize dopamine). Tyrosine should not be given in combination with serotonin reuptake inhibitor drugs like Prozac. Tryptophan, the precursor to the serotonin, is not available in the United States in supplement form, but its hydroxylated form, 5-HTP, is available.

As a net deficiency of 5-HT function in autism has been proposed, this supplement might prove very helpful in remediating autistic symptoms. 5-HTP has a calming effect on the nervous system and, as it is a precursor of melatonin, it might be helpful in improving the sleep patterns of individuals with autism. If Tyrosine and 5-HTP are used in combination, the stimulating effect of the former might counteract the sedative properties of the latter. One could be taken in the morning, the other in the evening. Neither tyrosine nor tryptophan or any other amino acid for that matter should be taken in combination with SSRIs or MAO inhibitor drugs like Prozaz or Paxil, unless under the supervision of a doctor.

In a report appearing in the final 1999 issue of “Autism Research Review,” researchers in Michigan speculated that both the immunological abnormalities and abnormal serotonin levels common to people with autism

are attributable to decreased levels of plasma tryptophan. They assert that decreased tryptophan could result in decreased production of NAD (nicotinamide dinucleotide) in the liver, which would in turn impair the functioning of mitochondria, the “energy factories” of cells.177 In this round about way, they linked autism to impaired energy metabolism and a build up of lactate in the brain. But the facts are that only very limited quantities of niacin or NAD (nicotinic acid) can be obtained from the metabolism of tryptophan. It is a very inefficient pathway, utilized only when there is a relative abundance of tryptophan.178

The non-essential amino acids that are available in health food stores include cysteine and taurine (which is vital for the proper utilization of the minerals sodium, potassium, calcium and magnesium). The gastrointestinal problems and stress common to people with autism can cause a depletion of taurine. The available amino acids that double as neurotransmitters include GABA (gamma-aminobutyric acid), glutamine and glycine (which can be converted to serine, which is not available in supplement form). As a side chain of serine is an important component of the active site of many enzymes, particularly transferases, this amino acid plays crucial role in body and brain metabolism. Though not technically an amino acid, DMG (dimethylglycine), a derivative of glycine, does serve as a building block for many important amino acids, hormones and neurotransmitters, along with supporting the immune system, boosting energy levels and enhancing mental acuity.

Free form amino acids are acids in their purest form. They need no digestion and are absorbed directly into the blood stream. It is best to take them on an empty stomach, either in the morning or between meals, to avoid making them compete for absorption with the amino acids present in foods. Combination supplements are also available, but the tablet size is huge and you wind up ingesting smaller amounts of the amino acids you need per pill along with many amino acids you don’t need. In order to equal the dosage you can get in free-form supplements, you must take as many as six or eight combination tablets daily -- a lot to force down the throat of a reluctant and often resistant teenager or adult. I don’t recommend any amino acid supplementation for young children.

Like essential amino acids, essential fatty acids are those that cannot be made by the body and must be derived from the diet or supplements. Highly concentrated in the brain, EFAs aid in the transmission of nerve impulses and are necessary for the normal development and functioning of the brain. A deficiency of these acids (which may be caused by a deficiency of vitamin B12) can lead to impaired ability to learn and recall information. In the body EFAs serve as substrates for the production of prostaglandins, hormone-like substances that act as chemical messengers and regulators of metabolic and digestive processes. Fatty acids also function to rebuild and

produce new cells and tissues, and in this capacity help to maintain the integrity of the intestinal lining. An insufficiency of EFAs would result in increased permeability of the gut wall, allowing partially digested food products to pass more easily into the blood stream.

The two basic types of EFAs are designated as Omega-3 and Omega-6. Omega-6 fatty acids include linoleic and gamma linolenic acids and are found primarily in raw nuts, seeds, legumes and in unsaturated vegetable oils. Omega-3 fatty acids, including alpha-linolenic acid, are found primarily in fresh deep water fish and fish oils. The supplement DHA (docosahexaeonoic acid) is a good source Omega-3 acids, while Evening Primrose Oil contains high amounts of Omega-6 gamma linolenic acid. Or you might opt for a combination formulation, such as Ultimate Oil.

Phospholipids serve as a major component of myelin and are required for cell membrane synthesis. They are formed from phosphatidic acid, a product of the breakdown of triacylglycerols. Three phospholipids: phosphatidylethanolamine(PE), phosphatidylcholine(PC) and phosphatidylserine(PS) are available as supplements in single or combination form. They are able to cross the blood-brain barrier and act to promote healthy brain function and memory.

Enzymes are energized protein molecules that catalyze virtually all the biochemical processes that go on in the body. They are necessary for digesting food, for stimulating the brain, for providing cellular energy and for keeping all our tissues and organs in optimal condition. Although they can be manufactured by the body or obtained from food, enzymes are very sensitive to heat and easily destroyed by cooking.181 And the raw foods that serve as good enzyme sources, such things as avocados, sprouts, papayas, pineapples, bananas and mangos, do not top the list of the most popular foods in the American diet.

The enzyme trypsin serves to activate phospholipase activity in the intestines along with the metabolic activity of other pancreatic enzymes and hormones. One theory of autism is that opioid-like molecules serve to decrease gastric acid secretion, thereby lowering the pH of intestinal contents and reducing the release of digestive enzymes, like secretin and trypsin. This would affect the degradation of phospholipids, which might be excreted from the system whole, rather than being broken down into their respective bases (serine, choline and ethanolamine) reabsorbed by the liver, hydrolyzed and recycled by the body.

Most commercially available enzymes are digestive and proteolytic (functioning to break down proteins). They include pancreatin, pepsin and papain. Pancreatin, derived from secretions of animal pancreas, is often used to treat digestive problems, food allergies and autoimmune disorders.

The combination of betain (trimethylglycine) and pepsin is said to reduce hyperactivity.182 I give my daughter a multiple enzyme product containing amylase (for carbohydrates), protease (for proteins) and lipase (for fats) when she has a meal containing a variety of foods. When she eats a mostly wheat meal, I give her the enzyme bromelain, obtained from the pineapple plant, which is more effective in breaking down gluten and casein peptides. Enzymes should be taken after meals, unless food is processed or cooked, in which case they should be ingested during meals.

The enzyme form of carnitine, a substance related to the B-vitamins, functions in the body to help transport long-chain fatty acids across mitochondrial cell membranes so they can be broken down and metabolized. A deficit of this enzyme would explain the finding of an accumulation of long chain fatty acids in the cell membranes of people with autism. I have opted not to supplement carnitine as it can be obtained from meat in the diet and can be synthesized in the body from many of the vitamins and amino acids I am supplementing, including thiamine, vitamin B6, vitamin C and the amino acids lysine and methionine. Iron is also a component of Carnitine, but I have elected not to supplement this mineral as it is found in plenty of foods, is stored in the body and excessive iron intake can cause more problems and than it can help.

It has been suggested that the presence of yeast in the gut causes or contributes to the symptoms of autism. The theory is that waste products from the yeast absorbed into the blood stream, undermine the development of the central nervous system and interrupt neurotransmission. Certainly unhealthy intestinal flora (resulting from yeast or the ingestion of bacteria destructive antibiotics) can result in the liberation of abnormally high levels of ammonia when protein containing foods are digested. The ammonia is absorbed into the bloodstream and must be detoxified by the liver or it can cause toxic reactions ranging from a decrease in appetite to severe nausea or diarrhea.

There are several ways to counter the effects of a compromised or unhealthy gut. One is to use antifungal medications like Nystatin and Diflucan. Another is to avoid foods, such as refined sugars, that encourage yeast growth. But the easiest and most effective remedy is to introduce healthy bacteria into the gut via supplements. Lactobacillus Acidophilus and Lactobacillus Bifudus are two types of “friendly” bacteria that prevent toxin build up, aid in the digestion of proteins and in the synthesis of enzymes, B vitamins and antibiotic substances that inhibit pathogenic organisms. In addition to their antifungal properties, both substances serve to reduce blood cholesterol levels, promote the absorption of nutrients and prevent digestive disorders such as constipation and gas, as well as food allergies.183 The activity of intestinal bacteria on poorly digested food particles may lead to excessive production of histamine, triggering allergic

symptoms.

Another way to improve compromised gastrointestinal function is to try "super food" supplements like algae and bee pollen. Algaes like Spirulina are packed with vitamins, minerals and amino acids, so they serve as particularly potent protein supplements. In addition to the above nutrients, Bee Pollen also contains fatty acids and an abundance of enzymes. Both "super foods" provide increased metabolic energy and immune system support, as well as promoting the cleansing of toxins from the system. Bee Pollen is also said to have antibiotic, anti-viral, anti-microbial and anti-fungal effects, which Spirulina has a high content of L-tryptophan, so its regular use can help maintain healthy brain chemistry along with good mental and emotional health.

Two herbal supplements that may be helpful in alleviating autistic symptoms are Garlic and Gingko Balboa. Both are touted to improve blood circulation, thereby increasing the supply of oxygen to the brain and improving its function. Garlic also has antifungal properties and acts a potent immune system stimulant and a natural antibiotic, as it contains sulfur along with the amino acid derivative, alliin, a natural antibacterial agent.

Several other herbal supplements, St. John's Wort, Kava root and Valerian may also be helpful alleviating the anxiety associated with autism. St. John's Wort causes an inhibition of serotonin re-uptake and might also help support MAO inhibitors. Kava has mentally and physically relaxing properties, while Valerian has been used since the Middle Ages for nervous disturbances affecting the gastrointestinal system. Preliminary research indicates that it may influence some of the same brain receptors affected by the anti-anxiety medications Valium and Xanax.

Although I have listed a lot of supplements, I do not mean to imply that all are helpful or necessary. It's best to try them out one or two at a time until you narrow it down to a supplement regime that works best for your child or your situation. For children who eat plenty of meat and fish, as well as four to five servings of fruits and vegetables daily, dietary supplementation may neither be necessary nor helpful. But if your child’s diet is a typical one, consisting primarily of carbohydrates with a little milk and protein mixed in, it couldn’t hurt to add a few nutrients to it to assure that their minds and bodies are working at optimal capacity.

When we were giving Meaghan supplements (many of the above), we did notice a difference in her demeanor and overall responsiveness. She was calmer and more focused. At school, her teacher noted that she was alert and attentive to class work. The supplements also caused an improvement in Meg's digestive system that diminished her appetite and along with it her

craving for and excessive preoccupation with certain foods, thereby freeing up her mind for other thoughts and learning. She began to eat her meals more slowly, not gobbling up everything on her plate in minutes (so we no longer had to have her put down her fork and count to ten between bites.) Although she still noticed the food of others when she was out, she no longer grabbed for it, so June was able to shift her attention back to guiding appropriate social behavior and interactions.

POSTSCRIPT: We stopped giving Meaghan supplements when we put her on Prozac, because I was afraid of the interaction. Recently, we switched her over to Paxil, which seems to work better to control her anxiety, and she now also takes medication to control mild vocal "tics", so at present I am going the pharmaceutical route. Unfortunately, the problem with her excessive preoccupation with food and along with it the gobbling and grabbing of anything edible -- from anyone -- is back, so it does make me wonder in reading through this chapter if perhaps we should be retracing past steps.

Meg on a recent outing with June.

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Chapter Thirty Four

A Friend in Deed

It is a misconception that all autistic kids are loners by choice, uninterested in the company of their peers. Meaghan has always evidenced an interest in other kids, but for a long time she lacked the confidence to attempt to interact with them. She preferred adults because she was more familiar with their ways. They were more socially predictable.

Meg’s timidity with her peers has diminished as she has matured, due in part to her Higashi experience. At school she is regularly exposed to a variety of games and activities requiring group participation, so she has grown more accustomed to cooperating and interacting with kids her own age. Also, between the ages of seven and ten, she frequently spent time with the nieces and nephews of her respite provider, Lorraine. These children were wonderful with her, and she responded happily to their overtures. Meaghan recognizes her interactive shortcomings, yet she readily gravitates to anyone who shows her attention or initiates activities with her.

Sometimes I feel wistful watching the neighborhood kids out on our street riding their bikes, roller-blading or playing kick ball on warm summer evenings. I can’t help thinking how wonderful it would be if Meggie could run out and join in the fun as Michael does. There are several girls around her age on the block and, had things been different, she’d no doubt have formed friendships with them, spending time at their houses and having them to ours. It saddens me that Meg will never experience this type of camaraderie. It saddens me that I can never let her of my sight and that most of her play is solitary. But it doesn’t seem to sadden her. Meg sometimes watches the kids out the window too, but her face registers neither sorrow nor longing.

I often recall a remark her first teacher, our wonderful home therapist, Ruth Kaplan, made when I said what a shame it would be for a child to grow up without having any friends. She said something along these lines: “You can’t miss what you don’t have in the first place.” What she meant was that if

you’ve never had a friend, if you’ve never experienced friendship, than you can’t feel you’re missing out on anything by not having it.

I think, however, that it comes down to a question of the interpretation of friendship. If by “friend” you mean only a soul mate or confidante, then Meg will probably never have one or miss having one. Because her autism prevents her from being on the same “wavelength” as her normal peers, she may indeed remain alone mentally.130 But, if you interpret “friend” as a familiar companion; someone who understands you and who likes to do what you like to do, then Meggie need not be so alone.

The problem is that typical “friends” are darn hard to come by, especially now that Meg is a teenager. Because conformity is the mainstay of adolescence, my daughter is probably at more of a disadvantage now than she’ll ever be in trying to “fit in.” But, although she can be a handful at times, Meaghan is also guileless, endearing, funny and loving, and those who take the time to get to know her often become quite fond of her and enjoy being with her. At least this has been the case with the several respite providers she’s had who have proved to have any staying power.

After we lost Jeanette in the spring of 1992, we were blessed with an equally dedicated and caring provider in Lorraine Rebidue. For three years she came every Saturday promptly at four o’clock and took Meggie and Michael, often along with one or two of her many nieces and nephews, out to a park or playground. They frequently went over to her family’s house, where our children were warmly welcomed by several generations of the close-knit Rebidue clan. This arrangement worked out so well for so long that, when the time came for Lorraine to move on with her life, we were totally unprepared for life without her.

We were even more unprepared for the three year wait we would have before another reliable provider came our way. We had two short-lived experiences with providers of the ‘now you see them, now you don’t’ variety, women whose heart really wasn’t in their work. Meaghan sensed this and behaved accordingly.

We’d just about given up hope of ever finding another Lorraine when I placed a call to ARC late last summer and hit the jackpot. A lively young woman, Tanya Wiggin, had just taken over the job of being Meaghan’s case manager, and I gave her an earful. She listened to my complaints, commiserated with my concerns and, when I was finished, simply said, “If you can’t find another provider for your daughter, I’ll be happy to do it.” I couldn’t believe my ears. I was so accustomed to hearing platitudes like, “Sorry, no new providers, but we’ll keep looking.” Or, “We’re just not getting the responses we’d hoped for from our latest recruitment campaign.”

Needless to say, I jumped on Tanya’s offer. She said she’d had some experience working with autistic kids at a summer camp and that she’d enjoyed the experience. This was good enough for me. We arranged to meet the following afternoon. Most initial meetings between provider and consumer are strained, particularly when the client is autistic, but this one went off without a hitch.

“Can we go outside and jump on your trampoline?” Tanya asked Meggie moments after the introductions were made.

Meggie was delighted by this suggestion, and the two of them went off. I watched them out the window as I filled in the agency paperwork. They were jumping and laughing and clasping hands. It was clear that Tanya was enjoying my daughter every bit as much as my daughter was enjoying her.

Before she left Tanya asked Meggie, not me, “Would you like to go out with me this weekend?”

Meggie, of course, responded “Yes.”

“Maybe, if it’s nice, we’ll go to the beach.” Tanya turned to me. “Would it be okay if I picked her up around ten on Saturday and took her out for the day?”

I was dumbfounded. Nobody had ever offered to take Meg for so long right off the bat. We usually had to go through an adjustment period lasting weeks or months, gradually upping the hours from one to four--at most. Ordinarily I’d have hesitated, but there was no mistaking the rapport that was already developing between my daughter and this out-of-the-ordinary young woman.

Tanya and Meaghan went to the beach that Saturday and spent time together just about every weekend thereafter for over a year. They went shopping at malls, ate out in restaurants, rode the train into Boston to go to concerts and shows or to wander around Faneuil Hall marketplace. They walked around the Commons and jogged along the Charles, participated in marathons and went to the gym to work out together.

Tanya proved to be a real find because she was an unconventional young woman who embraced life fully. She didn’t hesitate to go new places or to try new things, and she had no reservations whatsoever about taking Meggie with her wherever she went or whatever she did. In Tanya, Meaghan sensed someone who took genuine pleasure in her company, and this unconditional acceptance by someone so special to her helped Meg more than any educational program ever could to come into her own and to begin

to understand what real friendship is all about.

Unfortunately, the very energy and exuberance that we found so appealing made Tanya equally attractive to her peers. It didn’t take long for her to catch the attention of a young man and for that attention to become serious. An engagement, a change in jobs and a move back to Maine, along with family commitments, finally forced Tanya to relinquish her respite responsibilities. Although I saw the end coming, I was devastated by the loss. I was weary of the process of weaning promising providers into our lives, only to lose them just as we were beginning to feel comfortable depending on them. When Meaghan was little this hadn’t mattered so much but now, at fourteen, she was at a critical crossroad in her life. Although her repertoire of experience had grown substantially with Tanya’s companionship, she still had a long way to go.

As Meg began to make her way into her into her teenage years, my focus had to shift from her schooling and academic learning to developing her social, leisure and vocational skills, to getting her out and about in the real world. The teaching she most needed could no longer just take place in the classroom. Like all teenagers with autism, Meaghan desperately needed ‘real life’ experience to round out her education and build her self-esteem, but getting her this experience was difficult because it required on-going individual guidance and supervision.

Not only is there a shortage of personnel trained or willing to train to work with autistic individuals, but there is a dearth of programs, much less inclusive programs, geared toward servicing clients with autism. Almost all the camps and recreational programs in this state are intended for children with mild to moderate special needs; children with adequate social skills in the first place, while children with autism, who desperately need this training and experience, are left out in the cold. All too often we as parents are offered no option but to try to fit our square pegs into the system’s round holes, and the fit is almost invariably an inappropriate and unsatisfactory one.

In coming to terms with my daughter’s disorder I have also, over the years, had to come to terms with the limitations of the system as it now stands with regard to children with autism. Their education begins to break down in their teen years because school systems are either unwilling or fiscally unable to provide the broad spectrum, intensive, individualized training that autistic adolescents need to prepare them for life in the adult world. In Meaghan’s case, I knew I could neither turn to our community nor her school for any more help than she was already getting, yet I knew that unless she got more help she would reach adulthood with some adequate

academic and vocational skills, but with little aptitude in the real life skills of getting along with people and knowing how to handle herself in different situations.

At a loss as to where to turn, I happened to overhear the mother of another Higashi student talking about how she didn’t have to worry about how to keep her son occupied over summer vacation as she had someone scheduled to take him out to various activities everyday. I drew closer and questioned her about how she could afford so much respite care, and she told me it was no problem as she had gotten a grant from the Department of Education.

Intrigued, I sat down with her and begged her to tell me all about it. I was amazed by what she had to say. The gist of it was that she was a working mom who hadn’t wanted to put her son into residential care but had felt she might have to unless some alternative supervisory arrangement could be worked out for him for after school and weekends. Apparently, she had been quite forceful in presenting her case to DMR, and they had responded by letting her in on a well kept secret.

In collaboration with the DOE, they were underwriting a prevention project to handle just such contingencies. It’s purpose was to prevent parents from having to place their child in a residential facility by providing the funding for the services they deemed necessary to enable them to keep their child at home. My informant told me that, having been accepted into this program, her son received a substantial yearly stipend from the DOE to pay for his participation in extracurricular or community activities and for any support personnel he required, and that he would continue to receive this funding annually until he turned twenty-two.

I was dumbfounded. Could anyone in the state apply for this grant, I asked her.

She said she didn’t see why not.

I called DMR the next day and inquired about it. I was told that yes, there was such a program, but that all the funds had been spent for the current fiscal year and that DOE was not sure whether it was going to renew the program.

I called the supervisor at ARC and asked why I had never been told such a program existed. She said it was the first she’d heard about it, and that perhaps I should see about getting a service coordinator over at DMR; someone who would be better able to keep me abreast of what options were available for my daughter.

I called DMR back, asked to be assigned a service coordinator and lucked into Doorie Freedman. This proved a smart move because, although Doorie was not optimistic at the time of our initial meeting that DOE would start the project up again, a month later she called to say that not only was DOE accepting applications but that she had lined up Sue Lunn, a woman experienced in such matters, to coordinate and supervise a program that we would propose and apply for on Meaghan’s behalf.

Doorie, Sue and I met in early October to decide on the scope and focus of the proposal. We agreed that it should be fairly all encompassing, providing for those support services needed to help develop Meaghan’s social, vocational, recreational and leisure skills, with the ultimate aim of making her more involved and comfortable at home and in the community. Sue and I met again to hash out some specifics: how many hours of service I would require, what activities or therapies Meaghan might enjoy or benefit from, and what kind of support personnel would be needed.

By mid-November the application was completed and our local Sped Director signed off on it. Doorie submitted it to her supervisor and it was passed on through the proper channels.

There was nothing left to do but wait -- and pray.

A month went by, then two, then four. Six months later I was still waiting for any word. On the one hand, I was impatient with the delay. How long could it take a person to review an application, even a batch of applications? On the other hand, I felt that no news was better than bad news. What if our request for funding was denied? The DOE was under no obligation to give us the money, and without the money there wasn’t much more I could do for my daughter.

Just as I had resigned myself to waiting until the beginning of the new fiscal year in July, Doorie called with the news. Our application had been accepted and the grant had come through. We would have the funds necessary to get Meaghan the extracurricular training she so badly needed on a regular basis every weekend and over vacations; funding that would be reviewed and renewed annually for eight years. Now all that remained was the problem of finding someone worth spending the money on.

This task was not as simple as it sounded owing to a dearth of qualified applicants. Tanya would have been a wonderful starting point, but she moved away shortly after the grant came through. Four weeks of advertising yielded only one response.

I didn’t hold out much hope that we would actually find someone to fill the multi-faceted role of “community integrator” as we envisioned it. I reasoned that at best we’d have to make do with one girl to take Tanya’s place in keeping Meg actively engaged outside the home and another to work with her on some leisure skills inside the home. Ideally, I wanted someone who would not only take Meg out, but take her to places where there were people she could get to know and who could get to know her. I wanted someone who would teach her the real life lessons of how to get along with others and how to control her anxiety and impulses in public. On top of this I wanted someone to help Meaghan learn how to shop for and prepare her own meals, how to order out in restaurants and pay her own bill, how to conduct herself in all manner of circumstances that are part and parcel of everyday life.

A very tall order, but amazingly our single applicant, a remarkable woman by the name of June Kaufman, completely fit the bill.

Not only did she bring considerable experience to the dual roles of community integrator and skill trainer, she also happened to be speech and language teacher. I do not consider myself to be a lucky person (even though I’m Irish) but I must say we struck gold with June. The woman is a walking wonder. She is so actively involved in the community that I question whether she ever has a moment to herself, and she has proved tireless in her efforts to get Meggie “out and about” with others.

I doubt there has been a single happening in our community over the past several years that Meg hasn’t attended or actively participated in. She’s gone to festivals, fairs, parades, temple and church services and bazaars. She’s even modelled in a fashion show! June has opened up a whole new world for Meaghan, has introduced her to her vast circle of friends and has helped her make peer friends of her own. On top of this keeps a picture journal of their weekend activities, sets up social and communicative goals for Meaghan to meet each month and works with her until she meets them.

Is all this community involvement making a difference? Without a doubt. Six months after she began with June we took a trip to Disney World and were amazed and impressed with how well Meaghan coped with the crowds and handled herself out in public. We wouldn’t have dreamed of taking her there a year earlier. I’m not sure what the future holds for my daughter but, with June at her side, her prospects for leading a much richer, fuller life increase weekly. I often wish June had come to us with a lifetime guarantee, but I suppose one can’t have everything. I know we are fortunate to have this remarkable woman in our lives at all, and that, but for a chance remark overheard at a Higashi function, our paths might never have crossed.

POSTSCRIPT: It's now been three years since I finished this book, and I'm

thrilled to say that June is still very much a part of Meggie's life. She still takes her out faithfully every weekend to restaurants, shopping and local activities and events. If the world were a perfect place, every autistic teenager would be fortunate enough to have a June in their lives!

Meg and June Marmer - Together, August 2002.

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Chapter Thirty Three

Community Conundrum

To this day I anticipate the worst whenever we go out socially. This way I am often pleasantly surprised. Meaghan’s social behavior has improved with age but it’s still unpredictable.

Actually she generally does quite well in public places -- malls, restaurants, parks or theaters -- because crowds are impersonal to her. There are no expectations for her to relate to the people, so she has little reason to feel anxious or uncertain. This is not to say that she wouldn’t run wild if unaccompanied. But, as long as she is with someone she senses to be in control, she copes pretty well with the stimulation. She does better in shops and stores now too, allowing us, on a good day, to browse and take our time with purchases. She has acquired a bit more patience over the years, so we no longer have to keep “on the move.”

The most difficult thing for Meaghan has always been sitting calmly and waiting for any sort of appointment. The anticipation of seeing whomever we are going to see generally fuels her anxiety. For years I dreaded taking her to the doctor or dentist, especially when the waiting room was crowded so she had a built-in audience. If Meg sensed she could attract attention to herself, she would go out of her way to do so.

Fortunately, her doctor’s office is only a few minutes away, and they are very accommodating when I call and ask them how late the doctor is running, so I’m usually able to time our arrival for very near the time he can see her. I have no such arrangement with Meg’s dentist, but I have learned to schedule her appointments for first thing in the morning or other times when there is less likelihood that we’ll spend more time waiting than getting her teeth cleaned.

Parties or family get-togethers remain a problem area, as there is little predictability to them and Meg is generally at a loss as to what to do with herself. Actually, just walking in the door to someone else’s house -- or

having someone come to ours -- sets her on edge, although she no longer gets as keyed up as she did when she was younger. Experience has made her more conscious of social protocol, but she still has a limited awareness of how to properly relate to others. She will respond when questions are posed directly to her, but she rarely initiates interactions unless she is greeting someone or asking for something to eat or drink. Birthday celebrations are Meg’s favorite because she knows what to expect. The “Happy Birthday” singing and cake and ice-cream ritual are reassuringly familiar.

In her book, Thinking In Pictures, Temple Grandin writes: “As a child I was like an animal (with) no instincts to guide me; I just had to learn by trial and error. I was always observing, trying to work out the best way to behave, but I never fit in.”129 I’m sure Meaghan feels much the same way. When she was younger she could get away with letting adults take care of her. There were fewer demands or expectations. But now, as an adolescent, she is expected to behave in a less self-involved way, which is completely contrary to her autistic nature. This combination of lack of purpose and lack of confidence does not generally bode well for controlled behavior, so I remain acutely conscious of where Meaghan is and what she is doing at all times when we go out.

Actually, I have come, over the years, to look upon social functions as learning experiences for my daughter and teaching opportunities for me. As long as I am sticking by her side, I might as well offer advice and guidance. If Meg gets keyed up, I take her out of the room or out for a walk, and we talk things over before returning to the gathering. In accepting my role as mentor rather than watchdog or guest, I have begun to relax more myself when we go out, and this has helped Meggie to relax. I’ve even been able to carry on several uninterrupted conversations, as long as Meg is in my sight or by my side.

But I can’t always be by Meaghan’s side, nor is it healthy for her to always have me there. The goal we are supposed to be striving for is social independence. Meg has to learn to generalize her good behavior with people other than her parents and teachers. The Higashi philosophy is that family, school and community should form a collaborative continuum, with everyone working together to enhance a child’s development. In Meaghan’s case, the community part has long been missing.

When Meg was ten I tried to broaden her social horizons by enrolling her in two different Saturday recreational programs; one in the fall and one in the winter. The first one, run by the ARC agency in a neighboring town, consisted of bi-weekly, three hour outings and lunch, Meg’s two favorite things. The other was a more structured, five-hour activity program run by the Handi-kids organization down on the South Shore, where Meg had

attended camp for two weeks the previous summer. Meaghan loved going out to these programs but, once she got a feel for the people in charge, she began wetting herself. Although the staff didn’t mind her “accidents,” I minded, because I knew that once the pattern of misbehavior became set there would be no breaking out of it.

The whole point of my trying to get Meaghan out with other people was to build up her confidence in herself, so she would no longer feel the need to test. As most of her provocative behavior was due to her anxiety and insecurity with unfamiliar people, I felt that if I could broaden her experience with different people she would begin to feel more at ease when she went out. Instead, all she was learning was that when she was out with others she could get away with a lot of things she knew she’d never be allowed to get away with at school or at home. Perhaps her anxiety stemmed not so much from just being around others, but from her sense that those who were supposed to be in control really weren’t in control; that they were uneasy with her. I ended up taking Meg out of both programs, because it was clear to me that her participation in them was doing her more harm than good.

The spring that Meaghan turned eleven, I decided to give community involvement another try. At her annual TEAM meeting I voiced my concern that Meg had so little opportunity to observe and interact with typical peers. I asked our new Sped Director if there were any school or extracurricular programs in town that Meg could participate in on a regular basis. After much give and take (and numerous follow-up meetings) the consensus was that the only feasible inclusionary arrangement would be one with the local Middle School for some part of a day.

We would start with a sixth grade morning art class, and if this worked out perhaps Meg’s mainstreaming time could be expanded to two classes, one day a week. We didn’t want to try too much too soon for fear that the over-stimulation factor might result in failure. The fifty mile trek between Lynnfield and Randolph precluded our making arrangements for any other days, as Meg would be spending too much school time commuting.

On one point I was adamant: that Meg should have competent and capable supervision and support to help make the adjustment as smooth and successful as possible. It was agreed that she would initially be accompanied to the class by the Higashi Head teacher, Mr. Takamatsu, and by a Lynnfield teacher, Susan Engelke. Susan worked with many sixth graders in the school, so she was able to hand pick several outgoing and confident little girls to be Meg’s first “friends” and role models. A member of the Higashi staff visited the Middle School shortly before the mainstreaming was to start, to introduce Meaghan via video clips and to tell the students a bit about her and about some features of autism.

Despite all this preparation I was apprehensive as Meggie and I set off for her first day at the Middle School in mid-October. Mr. T was delayed so I accompanied Meg into the school with Susan. We’d no sooner gotten in the door than she bolted off, tearing down the hall like a wild woman. So it begins, I thought, not daring to imagine the havoc she was about to create.

I was about to dash after her when Meg halted beside a group of girls standing outside their lockers and said “hi” as naturally as could be. I held back wide-eyed to see how the girls would respond. Remarkably, they didn’t miss a beat. “Hi, Meaghan,” one of them said, and the others joined in the greeting. I was impressed as much by their casual acceptance of her as by the fact that they knew her name. Maybe this mainstreaming business would work out after all.

It did work out, quite well, for several months, as long as Mr. T was present in the background. He had no need to interfere, as Meg’s new friends were eager to help her out with the art projects. She listened to and cooperated well with them, and there were no wetting episodes, the one thing I had feared the most. Meggie knew the names of all the girls who assisted her, their number grew weekly, and she would ask about them and look forward to seeing them each week.

Following Christmas vacation, Susan said she felt confident enough to try the supervising solo. After all, there hadn’t seemed to be much to it. For the most part Mr. T just stood in a corner of the room, observing. His presence had afforded Meaghan a much needed sense of security, however. She is very sensitive and intuitive about people. If she senses calmness and control, she behaves well. If she senses an element of unease, she acts out. When Susan took over for Mr. T., she acted out. She somehow intuited that Susan had a sore foot and couldn’t chase after her, so she tried to run away from her every chance she got.

Mr. T was brought in for one more day. Meaghan behaved impeccably, and Susan said she wanted to give it another try. This time she had a young assistant teacher with her in case Meg dashed off, so this time Meg flopped to the floor and refused to budge. When I got the call to come pick her up five minutes after I dropped her off it was not unexpected, although both Meg and Susan appeared so calm and collected when I got to the school I had to wonder at the urgency.

Meaghan and I made the hour long drive down to Randolph in silence. I was disappointed in her and she knew it. She had promised to “be good,” but clearly her self-control was just too tenuous. The way I saw it, however, the fault was not entirely hers. I was equally disappointed that our school system had not taken my pleas for experienced supervision seriously. Susan

is a dedicated and caring teacher, but she couldn’t give my daughter the guidance and support she needed to feel comfortable and secure in the classroom. Unless or until our school system could see its way clear to allocating additional funds for support services, we were at an impasse. Meg would not be returning to the Middle School.

To give Susan her due, she didn’t let the matter rest. She took the initiative in bringing several of Meggie’s special friends to Higashi to visit her and arranged a follow-up reverse mainstreaming day for the whole art class. She also shepherded several of the girls to a few Saturday “play dates” in our back yard and after school swims in our pool. I marvelled at just how natural, how accepting and playful these girls were with Meggie. They talked to her and treated her just like she was one of them. It was no big deal. Perhaps this was why Meg delighted so in their company. She sensed that they were genuinely comfortable and accepting of her. They weren’t expecting her to act out and so she didn’t. Two late summer outings, one to the beach and one to a specially arranged birthday party rounded out my daughter’s brief ‘being a part of the community’ experience.

Frankly, I was not entirely sorry to see it end as there was no solid basis to it, nothing we could build upon. It was not fair to Meaghan to sporadically reintroduce one or two playmates into her life and then, when she began to count on seeing them, have to tell her that I had no idea when or if she’d see them again. What I wanted for my daughter was a place where she could go on a regular basis to engage in regular activity with regular kids. This type of hit or miss, now you see them, now you don’t, arrangement was not really optimal for the social development of a child who did best with consistency, routine and structure.

Meaghan with her Lynnfield Middle School "friends." They were all wonderfully accepting of her,

particularly the girl hugging her, another Megan!

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Chapter Thirty Two

Flight and Fright

I hate Meaghan’s testing behaviors because they limit the number of people she can be around and the number of opportunities she has to find social acceptance. I hate her perseverations because they literally drive me crazy and because, as Bryna Siegel puts it, “time spent perseverating is time not spent learning something new.”128

But more than anything I hate the impulsivity that is always lurking beneath the surface with my daughter. Not only has this impulsivity caused us a lot of embarrassment and heartbreak over the years but, on three occasions, it has nearly cost us our daughter’s life. On these occasions, Meaghan has blithely heeded a neural impulse to escape or run away.

The first incident (following the 1991 Christmas Eve episode I have already recounted) occurred over Thanksgiving vacation in 1993. We were down in New York visiting my parents. Brian was outside packing up the car for our return home, and I took my eyes off Meaghan for a minute to run upstairs and retrieve something I’d forgotten. In that minute, she got out the door and somehow eluded Brian’s notice. I came downstairs to find her missing.

Luckily, it was pouring rain and she went out without any rain gear, so when a neighbor spotted her dashing madly down the street, getting soaked, she immediately sensed that something was amiss. She stopped her car and told Meggie to get in. She was on her way to the police station until she spotted the two of us in frantic pursuit, peering about and calling out Meaghan’s name. When we saw that she had our child, we were grateful beyond measure, and I know she was as relieved as we were for this uneventful resolution. The wonder was that Meaghan had made it unscathed across a heavily trafficked main road to get to the side road where she was rescued.

Another frightening incident occurred very early one Saturday morning a year or so later. I was lying in bed, halfway between sleeping and drowsing,

when I thought I heard the front screen door shut. Either I was dreaming or it was real, but the possibility that it might be my daughter--a possibility that was always at the forefront of my thoughts--made me instantly alert.

I dashed out of bed and down the stairs only to find and halt Meaghan at the end of our front walkway. I had not heard her bedroom door open, nor had I heard the front door being unlocked and opened. Why the faint, airy sound of the screen door closing had penetrated my dormant consciousness I cannot say, but I shutter to think of the consequences if it hadn’t.

One thing this incident taught me is that there is a first time for everything. I was well aware of the propensity of other autistic children to try to sneak or break out of their houses, but Meaghan had never tried this. It never occurred to me that she would. Nor did I know whether she’d ever do it again. But with autistic children you can never take too many precautions. I had my husband reverse the lock on Meaghan’s door that day, so that it now locks from the outside. I also installed an old baby monitor in her room, so that I can monitor her through the night and know exactly when she awakens in the morning.

This cautionary episode was followed by a truly terrifying one in December of 1996. On this occasion Meaghan escaped from our fenced-in back yard, where she and Michael had been playing. A panicked Michael alerted me that she was missing and together we rushed after her, but by the time we reached the road in front of our house she had disappeared from sight. We weren’t sure which direction she had gone but, assuming the worst, we headed toward the highway at the end of our street.

It was growing dark so it was difficult to see, but we spotted the bright red jacket she was wearing up ahead in the distance. We called and called as we ran. She turned and saw us and, even though we were a good sixty yards behind her, I know she heard us. But she was too aroused, too mesmerized by the steady flow of cars whizzing past her to heed our pleas to stop. The last glimpse I got as she crested the top of a hill was of her veering off the side of the road into three lanes of heavy, sixty-five-mile-an-hour traffic. I couldn’t see over the incline to see what had become of her, but I could well surmise.

I was a wreck. I knew there was little hope we’d find her alive, much less unscathed, but I prayed fervently for a miracle. “Please God, let her be okay,” I chanted as I ran. Michael too was distraught. It took us several agonizing minutes to reach the crest of the hill where we could see a distance ahead of us, but we’d heard the slamming of brakes and what we saw before us did not bode well for my prayers being answered. Several cars had pulled over to the side of the road, the site of the accident, I told myself.

Michael and I advanced with heart pounding trepidation. As we drew closer, I cautiously peered under the cars, certain I would spot the bright red jacket under or beside a wheel. I saw nothing on the ground. Then I spotted the red jacket and my daughter in it. She was standing beside a car up ahead of us, her arm tightly clasped by the driver.

The tears streamed down my face, as the hollow feeling in the pit of my chest filled. I’d been granted my miracle. Meaghan was not only unhurt, she appeared to be perfectly all right.

She had been saved from certain death by a man who risked having an accident himself to reach out and grab her as she dashed out into the heavy rush hour traffic. He’d caught hold of the sleeve of her jacket and, by the Grace of God, had contrived to slow his car and pull her over to the side of the road to safety.

When I reached this savior, he was clearly bewildered. He had tried to question Meaghan, to find out who she was and what on earth she was doing, to no avail. At a loss for what else to do he was calling the police on his cell phone. I hastily explained that Meaghan was my daughter, that we lived a little ways up the road, and that she had gotten out of our yard without our realizing it. “Meaghan is autistic,” I concluded breathlessly.

He nodded with sudden understanding, as with this one word all facets my daughter’s baffling behavior fell into place. I thanked him profusely for saving Meaghan’s life, knowing all the while how inadequate my thanks were for the debt I owed him.

There is no doubt in my mind but that the man was a saint. Nor do I have any doubt but that he was there--at the right place, at the right time--for a reason, to make sure that Meaghan would not be killed or terribly injured. I believe there is a reason for everything, and the reason I had to come so perilously close to losing my child was perhaps to remind me just how precious she is to me. It doesn’t matter that she’s autistic; that she is at times temperamental and trying. Meaghan is and will always be at the emotional center of my existence. She has a hold on my heart that no other person will ever have.

Nowadays, whenever I am frustrated or disappointed or annoyed by something Meggie does, I have only to remember how close I came to losing her, and I feel grateful all over again for her presence in my life. And when I see her learning and delighting in the simplest of pleasures, my heart soars. I know that this is why she was spared.

It doesn’t matter how far Meaghan comes, how well she is learning and behaving, she will always be a slave to impulse. Of all the impulses she is beholden to, however, running away is the most treacherous because she has no sense of death or danger. When she ran out onto the highway, lured by the bright headlights and speeding traffic, she had no inkling that she might have been killed. I have lectured Meaghan since toddlerhood on the dangers of going into the street, but I doubt that her brain can make the connection between my talking of danger in the abstract and the reality of the experience itself.

Beyond this, the notion of death and dying is too obscure and conceptual for her to comprehend. Certainly, Meaghan is not trying to do herself harm or frighten us to death when she escapes or runs away. The very idea that she could be putting herself in harm’s way is incomprehensible to her, as it is to most autistic children. This is why they pose such a challenge to us as parents. You never now when some impulse is going to goad them into climbing to the top of the highest tree, to swimming far out to sea or to swallowing every pill in a bottle of aspirin. They simply give no thought to the consequences.

So, the bottom line is, while it’s fine to expect the best of our autistic children, for the sake of their safety and our sanity, it often helps to anticipate the worst.

Meaghan and Michael in happier times, August 1993.

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Chapter Thirty One

The Big Three

The Higashi behavior policy or philosophy is proactive rather than reactive. The feeling is that once students feel secure in the routine and predictability of the highly structured school environment, once they learn to appreciate the consistent and definitive expectations of the teaching staff, they will not feel the need to act out.

This makes sense -- as far as it goes. Certainly any child, but particularly autistic children, behave better when they know what to expect and what is expected of them. Since beginning at Higashi Meaghan hasn’t engaged in nearly as many provocative behaviors as she did at her other placements: 1) because she is happier, and 2) because she knows that she will not be allowed to get away with them. Also, she is kept too busy during her school day to have time to test. The problem is that the lives of children with autism can’t be structured, controlled and kept predictable one hundred percent of the time. Any change in the routine or status quo is apt to trigger an anxiety reaction, which could manifest itself in negative behavior.

In the fall of 1994, Meaghan was faced with many changes at Higashi over which she had no control. That year the school moved from Lexington to Randolph, so she had to adjust to a new school environment. She was moved from the primary elementary up to the intermediate division, where more was expected of her. She was assigned a new teacher, a new classroom and several new classmates.

She was also nine years old and entering puberty, which occurs several years earlier for a girl than for a boy. In response to all these transitions, Meaghan began to deliberately wet herself. She cleverly conceived of the one behavior she could engage in at school that her teachers could not control. Whether she began wetting as a means of testing her new, less experienced teacher, or as a means of drawing the attention of her favorite former teacher in an adjoining classroom, is hard to say. But, because her teacher could not prevent the behavior, it soon became a pattern.

Eventually, Meg was moved out of her class and put into a more experienced teacher’s class. The wetting stopped. Meaghan knew better than to try to fool with this teacher. But this didn’t stop her from wetting whenever her teacher wasn’t around or from generalizing this disturbing behavior to anytime she was in a different setting with different people.

Meg began wetting during her rides home from school. She wet when we went out to parties or to the houses of our friends or relatives. She wet repeatedly on the few occasions when we went out and she stayed home with a babysitter. She wet when I sent her to camp, and when I tried to enroll her in extracurricular activities. Whenever I wasn’t with her, Meaghan wet herself. Sometimes she would tease people by saying she was “wet” when she wasn’t, just to see their reaction, but generally she did it when she said it. I tried every form of punishment I could think of -- having her wash out her clothes by hand, taking away her favorite toys, withholding favorite foods -- all to no avail. I took Meg out of the extracurricular programs she enjoyed, and we stopped visiting friends and relatives or having them to the house.

At one point my sister said, “Why don’t you just put her back in diapers and be done with it?”

This solution seemed simple enough, but what my sister didn’t understand, what few people who don’t have children like Meaghan understand, is that my daughter is too smart to allow me to take the easy way out. Yes, the behavior was causing me distress, but not nearly so much distress as the thought of allowing Meaghan to regress. I had struggled so hard for so long to help her achieve the level of independent functioning she’d reached, I couldn’t bear to let her backslide. Beyond this, I knew that if I gave in, if I, in effect, sanctioned the behavior by having her wear diapers, it behavior would only escalate. I couldn’t afford to lower my expectations or Meaghan’s behavior would plummet accordingly, especially as I knew that she was perfectly able to control her bladder. Never once, in the three years that this went on, did Meaghan wet her bed at night. Never once did she wet when she was with me or with experienced teachers at school.

There was no question but that the “accidents” were deliberate on Meaghan’s part. Wetting had become her means of exerting some control over her environment and the people in it. It had become her way of dealing with the over-stimulation or uncertainty of new situations. She could escape to the quiet familiarity of a bathroom. What had begun as a testing behavior was verging on becoming a compulsive behavior, as Meaghan began to develop other toileting fetishes. The fact that she had no personal modesty only compounded the problem.

As one year passed into two and two years passed into three, I grew increasingly desperate. Were we never going to gain control over this behavior? I kept upping the ante of the consequences, but the pattern was so firmly established by this point that breaking Meg out of it was almost impossible. Then, a miracle happened.

Meaghan passed out of puberty and her whole disposition changed. She became calmer, more focused and more in control. When I talked to her about her behavior, she listened and began to take my words to heart. I pointed out all that she was missing and all that she would continue to miss out on, as long as she continued to test. Over the course of the past year, she has been out with several new people and has been exposed to numerous new situations without toileting incident. But I know that a regression can occur at any time -- all it will take is an impulse. I will not consider the problem completely resolved until Meaghan achieves full control over her actions at all times, and this will not occur until some accommodation is reached with the unmodulated chemistry in her brain.

Only two other behaviors of Meaghan’s have come close to being as exhausting and exasperating as her deliberate wetting: her whining and repetitive asking. Neither behavior has posed much of a problem at school. They occur primarily at home.

The first, whining, is Meaghan’s immediate anxiety response to any demand being placed upon her. By whining I mean crying, tantruming, whimpering and sniffling, but mostly just plain old whining.

For twelve exceedingly long years Meggie whined when she didn’t get her way. She whined when she didn’t get what she wanted the minute she wanted it. She whined when she didn’t want to do something or when she was pressed to do more than she wanted to do. She whined when she made mistakes because she didn’t like to be corrected. She whined when anyone or anything interrupted our homework sessions or when her allergies interfered with her ability to concentrate. She whined when she had to look at things too long. She whined when we had company to the house and when they went away. She whined when she was anxious or when she was afraid. She whined whenever she was introduced to something new. Sometimes she whined just to whine --for no fathomable or discernable reason.

All this whining would have been more understandable and far less aggravating if Meaghan hadn’t been able to communicate her unhappiness or displeasure in any other way. But she has long had the ability to tell us what she likes or doesn’t like. She simply opts all too often to whine rather than communicate verbally. For a three year old this is acceptable; for a thirteen year old it isn’t. Only in the past year has this persistent whining

abated. Meaghan has finally grasped the lesson we have been trying to teach her all along -- that we will acknowledge and respond to her concerns or unhappiness with far more patience and consideration if she uses words rather than tears.

Unfortunately, when Meaghan does opt to use words, they often take the form of abbreviated questions; not typical kid questions, but repetitive, anxiety-driven inquiries, for which no answer suffices to satisfy her need to ask.

This behavior first manifested itself when Meaghan was about six. She would look me in the eye and ask for something, or ask to see someone or to go somewhere. I would answer her, but knowing the answer didn’t stop her from asking the question, again and again.

This was doubly disturbing because Meaghan would become progressively more anxious about whatever was concerning or preoccupying her. I tried changing the subject, redirecting or diverting her. I tried turning the tables on her by asking her the question. None of this sufficed to calm her anxiety. It was as though she feared that if she didn’t keep questioning me, she might miss out on seeing the people (or eating the food or going the places) she enjoyed.

For years we hesitated to tell Meaghan any plans we had too far in advance. On the one hand, we knew that telling her would help to prepare her, but on the other we knew we’d never hear the end of it. Brian and I took to spelling to communicate because Meg readily picked up on any relevant things we said, and the repetitive badgering would begin. I say badgering because, although it was certainly not intentional on her part and was done in a sweet, mellifluous voice, this incessant questioning took a huge toll on our nerves--and patience.

Often, Meg would decide what she wanted to do, who she wanted to see or where she wanted to go at times (like seven AM) when it wasn’t possible or feasible to oblige her. We’d tell her when she would be able to do what she wanted, but this information didn’t appease her. Once she had her mind set on something, the thought got stuck in her head and we couldn’t dislodge it. Most maddening, when we did finally oblige her by taking her to a desired location, no sooner would we arrive there than she’d begin asking to go somewhere else or to do something else. She invariably wanted what she didn’t have.

One particularly persistent perseveration has been Meg’s asking for “No school” or its variation “No Andy” (the man who drives her to and from school each day). At her worst, Meaghan repeated these two words in a

questioning tone from the moment I greeted her at the door each afternoon until the time I tucked her into bed at night. For a while, when I really set my foot down and demanded that she stop asking about school or Andy, she began repeating “Don’t Ask” instead. The words changed, but the concern underlying them was as persistent as ever.

Meaghan has known all along which days she has school and which days she doesn’t, so the question clearly has more to do with her desire to stay home on school days. When I’d tell her to phrase it in a sentence, she’d clarify, “I don’t want to go to school.” But confoundingly, she only didn’t want to go to school on the days she had school. On weekends or over vacations, she’d awaken each morning asking to “See Andy” or to “Go to school.”

This wanting what she doesn’t have carries over to people who are absent from her life for any length of time. Meaghan always wants to know when she will see them again. But, if they do happen to come by to see her, she often begins asking to see someone else.

When Meg was at the height of her incessant questioning phase, she would pick the most inopportune times -- as when company arrived at our house -- to begin her perseverations (no doubt due to the anxiety factor). And when company left (no doubt relieved to get away) she was even more upset. It made her anxious when anyone was out of place. If her father left the room even momentarily, she had to know where he was and when he’d be back. Her mind could never rest. There was always some concern preoccupying her.

This anxiety-driven preoccupation was, by far, the most troubling aspect of the incessant questioning as it predominated and interfered with all other thought processes. As long as Meaghan’s brain was stuck in this repetitive mode, she could not attend to anything else. In contrast to her sensory compulsions and other fixations that were actually pleasing and satisfying to her, this perseverative asking did qualify as a form of obsessive-compulsive disorder because it made her uncomfortable, if not downright miserable. She knew that she was driving us crazy and she was a nervous wreck herself, but she could not stop.

After enduring five years of this, Brian and I decided enough was enough. We consulted a top-notch psycho-pharmacologist at Children’s Hospital, Dr. Ronald Steingard, who, after meeting with Meaghan, gave us a cautious go-ahead to try to ameliorate her anxiety and OCD symptoms pharmacologically. He could offer no promises or reassurance that the drugs would help, however. The Klonipen we tried initially didn’t help, nor did the Zoloft. Next we tried Prozac, with slightly better but still minimal results. We tried vitamin derivatives and dietary supplements, none of which did the trick.

In the end, two non-pharmacological strategies proved most effective in combating our daughter’s mind-rending anxiety and perseverations. First, we’ve learned to phrase our responses to her repetitive inquiries with concluding emphasis on the words she most wants to hear. If she’s asking for spaghetti for dinner, for instance, I’ll say, “If you do a good job on your homework, you can have spaghetti for dinner.” Putting the key words at the end of a sentence calms and satisfies her better than putting the qualifier at the end. In fact, it has been shown that autistic children generally register the last words of a sentence or a string of words better than the first ones.127

I’ve also learned to couple my responses with a reward-consequence strategy. In order to force herself to control the persistent impulse to repeatedly voice her concerns, Meaghan often needs a more tangible incentive than words or warnings alone. If she repeats or perseverates nowadays, she loses out on her favorite meal or dessert. Because food at this time matters so much to her, she’ll go to any lengths to make sure she gets what she wants. Although I can often see the struggle going on internally, Meg has now gained enough control over her impulses to resist them when the cost of giving in to them is too high.

Meg shared a special bond with her Nana, Brian's Mother Marie Buckley.

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What’s Going On?

COMMUNICATION AND CONVERSATION

What obstacles do autistic children need to overcome in learning to use language conventionally?

As I see it there are four main obstacles impeding autistic speech. 1. Very young autistic children are often “word deaf;”109 2. They lack concern for meaning; 3. They don’t like to have to think much, especially about what they are saying and, 4. They don’t understand the process of communication, the pragmatics of carrying on a conversation. These problems are interrelated in the way they affect autistic speech, but for the purpose of clarification I will deal with them separately.

What factors contribute to early word deafness?

When I say that autistic children are “word deaf,” I don’t mean that they don’t hear words. I mean that, when they are very young, they are not very interested in nor do they always understand words as words. If the process of sensory integration is not being followed through to completion, so that information from the eyes and ears is processed and interpreted smoothly and conventionally, they might simply fail to ‘tune in’ to the right auditory input. Or they might find it difficult to ‘tune in’ because their hearing is over or under selective.

Temple Grandin writes that her ability to process and attend to one voice against the background of another was severely impaired. It was difficult for her to screen out one voice and listen to the other.110 When adults spoke directly to her as a child, she could understand them. But when they talked among themselves it sounded like gibberish.111

Temple goes on to say that her ears were like microphones, picking up all sounds with equal intensity.112 In fact, for most very young children with autism, speech has no more significance than other noise, and many are more attentive and responsive to environmental sounds than to words. They

often find rhythm and music preferable to speech because the mathematical relationships of the frequencies or pitch are more pleasing and harmonious to their immature auditory perception.113

Another explanation for early word deafness might be that spoken language simply isn’t salient or relevant to children who feel little or no desire to communicate; children who lack the ability to associate language with the larger picture of emotional expressiveness and social interaction.

Also, due to their gestalt processing style, many children with autism are unaware of the differentiation of words early on. Because they do not discern the separate parts of a sentence, individual words and word combinations are never--or are belatedly-analyzed and understood in and of themselves. This early tendency to process sentences as a whole, rather than as a grouping of separate words with distinct meanings, makes it very difficult for autistic children to acquire an expressive or receptive vocabulary. Many cannot pick individual words out of a sentence unless they see them written first.

How do autistic children overcome word deafness?

As they gain experience with their bodies and with tangible objects, and as they are exposed to pictures, children with autism begin to understand that things have names. They begin to attach meaning to some words and to ‘tune in’ to these words. The first words autistic children generally attend to are nouns and verbs, because they have visual referents. Then come letters and numbers, because of their predictability. Gradually, they begin to grasp adjectives, prepositions and relational words, as these too can be represented visually.

At this point there is usually a big leap in receptive understanding, but expressive speech often remains awkward and rudimentary. It remains this way because the functional connecting words that are necessary to smooth it out are the hardest for children with autism to comprehend. There are no pictorial analogues for adverbs, articles or conjunctions.

Temple Grandin writes: “As a child I left out words such as “is,” “the” and it,” because they had no meaning by themselves. Similarly, words like “of” and “an” made no sense. Eventually, I learned to use these words properly because I mimicked (my parents) speech patterns.”114 For many autistics, my daughter included, these words only become recognizable as words after they learn to read and are able to recognize them in print.

How does the lack of concern for meaning or sense-making impact autistic speech?

In her book on autism, Uta Frith writes of an exercise in which groups of normal and autistic children were tested to recall a slowly read out string of words. The study revealed that autistic children not only recalled the end of the string better, regardless of whether it made sense or not, but that they were also less inclined than normal children to re-order the scrambled words into something more meaningful or grammatical.115 The implication is that sense-making is not a very significant factor in the way autistic children process information. Unlike the rest of us, they do not feel the need to put words or bits of information into some relevant, coherent pattern or context.

The implications of this lack of concern for sense-making and coherence for language learning are obvious. How does one learn to properly order words in sentences if meaning cannot readily be applied to the sequencing? In other words, if I’d said to my young daughter, “Car ride go for a with Daddy do you want to,” she would have probably responded “Yes” without giving the scrambled phrasing of my question a second thought. As long as she heard the relevant words “car ride” and “Daddy,” the random sequence of the rest of the words was immaterial.

Because young children with autism do not pay much attention to the meaningful sequence or grammatical structure of words in a sentence, learning to order their words and talk in coherent sentences is that much more difficult for them.

What might account for the lack of originality and spontaneity in autistic speech?

To quote Uta Frith, “the autistic child selectively attends to speech and translates heard speech proficiently into spoken speech. However, this processing seems to bypass the involvement of central thought.”116 Numerous factors play into the difficulty individuals with autism have in applying original thought to what they say. First, their predilection for sameness and predictability bolsters their reliance on rote language acquisition and expression. Also, their gestalt processing tendency makes it difficult for them to use words in a flexible, creative manner, because they often fail to assign meaning to the individual parts of the syntax.

Or it might be that the fragmented or dysfunctional neural circuitry within the autistic brain causes a breach between the auditory processing system and a central cognitive mechanism concerned with coherence and meaning. Bryna Siegel postulates that “in autistic children the growth of auditory memory (of sounds heard) proceeds at a fairly normal rate, but the ability to comprehend (digest information) lags behind.”117

To compensate for lack of comprehension, children with autism use their

stronger, more reliable auditory memories to try and make up for their processing limitations. This results in echolalia -- the rote repetition of the speech of others. Ms. Siegel postulates that children with autism engage in echolalia in order to better understand what is being said.118 They might also use echolalia because their brains are deficient in the complex interconnections that would allow them to apply more sophisticated thought processing to what they hear and say.

The combination of lack of concern for meaning and reluctance to combine thoughts and words explains most of the peculiarities of autistic speech--the stereotypic, rehearsed, situation specific language, the early omission or reversal of pronouns, the perseverative preoccupation with a narrow range of topics, the tendency to be excessively literal--the inability to say what others say in the manner in which they say it.

Why do some people with autism never develop speech?

Even when autistic children do begin to attend to speech, there is no direct link between hearing and talking. What we hear has to be properly integrated with other types of sensory input at the brain stem level and has to wend its way through many complex neural channels before it is finally conveyed to the temporal lobe auditory cortex where sounds are decoded and brought into our conscious awareness.119

If auditory information is intermingling with distorted or un-modulated reticular and vestibular information right at the start, making sense out of that information -- understanding language -- would be a complicated and confusing business. And if the information wending its way up to the cortical auditory processing centers arrives skewed or incomplete, the odds of efficiently translating heard language into meaningful speech diminish further.

Temple Grandin writes that she was able to learn to speak because she could understand speech, but low-functioning autistics may never learn to speak because their brains cannot discriminate speech sounds, or because not enough speech gets through their dysfunctional auditory systems.120 She speculates that children who are echolalic may be at a midpoint on the sensory processing continuum. Enough recognizable speech gets through for them to be able to repeat what they hear, but not for them to be able to apply sense-making to their speech.121

In fact, there is considerably more to talking than merely having the vocabulary to do so. Talking requires not only the ability to command and initiate a motor act, it requires the ability to arrange the sequence of oral movements to make sounds form a word.122 Enunciating or articulating

even simple words requires very precise placement of the mouth, tongue and lips and this requires good proprioception and sophisticated sensory processing. Talking also requires the ability to decide the order in which words should be uttered to make communicative sense.123 This is a lot to ask of children with significant processing difficulties, but particularly of children whose attention to the meaning and sequencing of individual words is significantly impaired.

For higher functioning autistics, those that have the mental capacity and motivation to overcome all the aforementioned obstacles, the problem may be simply that they don’t understand the purpose of speech. Jim Sinclair explains “speech therapy was just a lot of meaningless drills in repeating meaningless sounds for incomprehensible reasons. I had no idea that this could be a way to exchange meaning with other minds.”124

Even if they do appreciate the reasons for speech, some autistics might simply choose not to communicate. Because much of the sensory input to their brains does not complete the final association processing phase, their thought processes and patterns are too limited to allow them to tell stories. They cannot make things up. They might be able to relate what happens to them in their day but often see little reason to do so. They don’t ask questions because there is not much that they are interested in knowing. Indeed, I think the reason some bright, self-sufficient autistic children do not use language to communicate is because they are quite capable of getting their needs met without it. They do not need to make instrumental requests and, lacking a theory of mind and the ability to ruminate or empathize, they have little incentive to use speech for any social or interactive purpose. So they simply do not need to speak at all.

Why is carrying on a conversation the ultimate challenge for individuals with autism?

The simple answer is that they lack the basic instincts that make communication a natural process.125 In order to converse with unfamiliar others, people with autism have to struggle hard to order their words in a meaningful, coherent sequence and to think about what they are saying. Conversation requires commenting and commenting requires the application of original thought to speech. Comments cannot be practiced or rehearsed; they are subject to the whim or intent of the speaker.

Also, conversational commenting often requires the use of lots of incidental or colloquial words in a variety of combinations. People with autism rarely feel comfortable enough with their language to use is so creatively and flexibly. Even if they do succeed in coming up with an original, spontaneous comment, they then have to come up with another one quick on its heels in response to the reply to their conversational overture, and this type of rapid

verbal exchange strains the limits of their processing capabilities.

Autistic individuals also struggle with the protocol or non-verbal part of an expressive exchange; things such as using eye contact or gestures to punctuate meaning or signal agreement, understanding verbal reciprocity or turn-taking, knowing how to stay focused or elaborate on a topic or when to change it, being able to judge whether a listener is interested in what you are saying. As these pragmatic skills require social as well as linguistic competence, they are extremely difficult to master.126

Also, most of what people with autism have to say revolves around themselves. This inherent egocentricity makes it very difficult for them to contribute to or share in topical conversations. They are seldom motivated to ask questions about anything or anyone else because they are simply not that interested.

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Chapter Thirty

See and Say

There are dozens of other exercises I do with Meg to assist her in “getting her words out,” but to go into them all would take another book. I can, however, highly recommend three particularly insightful and valuable books to anyone who is beginning or in the midst of teaching an autistic child to use his/her language more flexibly and conventionally. These are the books from which I appropriated most of the ideas for my work with Meaghan.

1. Teaching Developmentally Disabled Children - The Me Book, by O. Ivar Lovass

2. Teaching Children with Autism; Strategies to Enhance Communication and Socialization, edited by Kathleen Ann Quill

3. Teach Me Language, by Sabrina Freeman and Lorelei Drake

These books should be used in the order listed. The Lovass manual for very young preverbal or just becoming verbal children, and Teach Me Language for older children who already have some language basics and some reading ability. Actually, the premise behind this latter book and behind many of the essays in Teaching Children with Autism is to combine visual and auditory input channels in fostering speech; vision generally being the stronger processing channel.

My first recommendation to those who are concerned about an autistic child’s speech would be to expose him/her to as much written language as possible early on, providing a picture referent to the words whenever possible. “The simultaneous presentation of spoken and written language enhances the child’s ability to focus attention on the message, organize and extract meaning from the language and respond more efficiently.”106

Many of the essayists in Kathleen Quill’s book recommend the use of dialogue or conversation ‘scripts’ within the context of joint action or

interactive routines. In these routines the parent or teacher chooses a familiar, motivating daily activity that requires joint focus and interactive turn-taking. The script identifies specific phrases or sentences to be used by both teacher and child alternately, so that the child learns “what to say” in the context of a meaningful situation. The routine and script are then modified and expanded as they become familiar to support and add flexibility to the child’s communicative development.107

This use of scripts is fine for a child who is a visual learner with fairly strong reading skills. However, I found with Meaghan that the presentation of too much visual information was distracting for her and actually bogged down her speech. In her struggle to decipher the written words, she often lost track of the question she was supposed to be answering or the comment she was supposed to be making. I wanted her to think about the words she was saying, not simply read them off the page, especially as reading was not one of her strong suits.

This is not to contradict what I said earlier. I strongly believe that reading-being able to visualize words as they appear in a sentence--is an invaluable support for generating speech in autistic children. I have found with Meaghan that the more she is exposed to written language, the more words, grammar and syntax she incorporates into her oral language. But, given the autistic propensity to take the easy way out, supplying too much scripted language can backfire. A child might grow dependent on reading rather than thinking about the use of his words.

Most of the language activities in the Teach Me Language book sidestep this dependency propensity by relying on the use of single word or simple phrase cues rather than whole sentences. The written cues are intended to supply children with a question, topic or idea, but they must fill in the rest on their own. For example, if I want Meaghan to tell me about her daily activities, I might jot down five or six key support words and then pass the sheet to her, having her expand upon my written prompts with sentences that tell me about her day.

Two Teach Me Language activities that I found particularly revealing and helpful with Meaghan were the Noun and Verb games. The former game consists of a pile of cards with a single familiar verb followed by a blank line on each card. The objective is for parent/teacher and child to take turns filling in the blanks. If a card says “Wash _____,” for instance, I might say “Wash my face.” Then it is Meggie’s turn to come up with a different response, such as “Wash my hair” or “Wash the car.” You continue taking turns on each card until you run out of noun responses, then you move on to the next card. The Verb game is played similarly, except that each card has a blank line followed by a noun, such as “_____ the bike.”

When I introduced these games to Meaghan she hated them. She would fall apart whenever I brought out the cards, because she knew she would have to come up with several varied and appropriate responses on her own. She could not rely on her standard rote replies. I initially helped her with suggestions, but after the first few trials there were no more hints. She had to think up her own words. She would look at me, eyes glistening with tears and expression imploring, silently begging me to give her the slightest hint as to what she should say. I held firm and eventually she ventured a few tentative replies, then a few more. She came to enjoy the exercise after she’d memorized a number of responses from our earlier trials.

I kept altering my responses, and she’d pick up on these new ones and add them to her repertoire. She might have been relying on her memory for answers rather than thinking up original ones, but for the first time she was learning that you could combine nouns and verbs in a variety of ways. She realized that “drink” didn’t always have to be paired with “milk,” and that you could “go to” other places besides “bed” or “school.” She was learning to “free up” her language, to be less rigid and restricted in its use.

The use of a single word to prompt her responses rather than spelling them out in sentence form forced Meaghan to think about-to access and vary-the words she was using. The more familiar she became with these games, the more I pressed her to respond in complete and expanded sentences. “We will eat pizza for lunch,” or “I lie down in my bed to go to sleep.” This use of full sentences led to a big improvement in her use of tenses and of connecting or function words. These exercises also worked on language pragmatics, turn-taking and topic maintenance.

Another Teach Me Language activity that I found helpful in getting Meaghan accustomed to thinking about what she was saying is one called the Contingent Word exercise. First, I’d say and write down a word, then she’d have to come up with a related word. Then I’d make a word association based on her word and so on. This exercise gave Meggie the opportunity to express her thoughts without having to frame them in a full sentence. She did, however, have to expand upon the topic at hand, just as we do in normal conversations.

A completed drill consisted of five or more related words, i.e. morning - Andy - van - school - friends - teacher - classroom. When finished, I would take the exercise a step further by asking Meggie why each of the words went together. In explaining the relationship between the words, she gained valuable experience in fielding “why” questions.

To work on Meaghan’s ability to comment and ask questions, I’d use a Teach Me Language sheet with five topic verbs listed in parenthesis. Below

each word were two fill-in-the-blank phrases. “I like to _____.” And, “______ what do you like to _____.”

If the verb was “eat,” for instance, I would say, “I like to eat salad. Meaghan, what do you like to eat?” She would answer the question, and then it would be her turn to comment and question me. Eventually, I just used single word topic cards as prompts. Then we worked on contingent statements, alternating comments and questions in the format of a typical conversation.

All these exercises went pretty well as long as the subject matter was familiar to Meaghan, but we soon exhausted her limited repertoire of general knowledge. Meaghan, like most autistic children, does not know a whole lot about a whole lot. Her range of interest is very narrow, as is her ability to latch onto whatever information comes her way. The authors of Teach Me Language recognize this and devote a section of their book to specific drills designed to “hook” autistic children, to increase their interest in and comprehension of factual knowledge on a wide range of social studies topics.108

Other sections of the book deal with academic and functional knowledge. Certainly the more a child knows, the more he/she has to talk about. One of the biggest conversational difficulties children with autism have is that they simply don’t know enough about enough to be very interesting.

Many children are experts on one or two topics and are able to talk endlessly on these subjects only. This preoccupation might be fine to use to work on conversational skills initially, but a child who can only talk about one thing is not a child many people want to be around for very long. Just as children with autism are constrained by their inability to use words freely, they are likewise constrained by their lack of imagination and general knowledge. There might not be much we can do about the former, but the latter can be remedied. It is important to keep building up your child’s store of material for conversation.

With this end in mind, I have put my word processor to lots of use over the years. When Meg was eight or nine I made her a set of notebooks in which I paired simple sentences (in large, well spaced print) and progressively lengthier descriptive paragraphs with pictures. I concentrated on topics that were familiar and relevant to her; things she liked to do, places she liked to go, things she was learning in school, particularly in science and social studies.

When we began our language work, I made Meaghan a more elaborate set of books. I felt she would have an easier time communicating if she had

more words at her disposal and could understand their proper usage, so I made up a voluminous dictionary using thousands of words in sentences that would be meaningful to her. Not only did I list the words (no more than two to a page) by initial phonetic sound, I classified them by parts of speech-nouns, verbs, adjectives and other, further subdividing the nouns into people, places and things. Every word was accompanied by a picture or pictures. These notebooks have been helpful in increasing Meaghan’s vocabulary and store of knowledge and in helping her to understand word usage.

I have also written Meaghan numerous social stories, based on Carol Gray’s guidelines, in an effort to help her achieve better control over her behavior by making social situations more understandable for her. She also has a stack of boldly printed rule cards to refer to; reminders of day-to-day dos and don’ts. She particularly enjoys reading these stories and rules because they all about her. Meaghan, like most autistic children, is quite self-centered. I don’t mean this in a negative way, because she certainly isn’t smug or boastful. Self-involvement is simply the nature of her disorder. My challenge, as a parent, is to try to draw her out of herself as much as possible; to teach her that there is more to life than routine and ritual.

Meaghan must learn to liberate her thoughts beyond that which she has been specifically taught. She must learn to think things through, to interweave real life experience with her internal library of facts. These are the goals we work toward. Only by guiding children with autism to make the connections that their brains fail to process automatically can we, as parents and teachers, free their minds of the shackles of autism; can we help them to become less self-involved and more attuned to and appreciative of all that the world around them has to offer.

Opening Ceremonies at the Special Olympics.

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Chapter Twenty Nine

The Rote and the Repetitious

Unlike their typical counterparts, most autistic children do not pick up words incidentally, just by hearing others speak them. My daughter listened to verbal exchanges and conversations for twelve years, and all this listening didn’t give her a clue as to how to put together a coherent sentence. And she is an auditory learner!

Only by visualizing words in a sentence, as they were written on the pages of her books, could Meaghan for the first time begin to appreciate not only the distinctness of each word but the different ways that words could be combined to make up different sentences. She didn’t immediately begin incorporating these “new” words into her speech, but she did come to understand that they were individual units and not clumps of sounds, so she began to listen to and really hear them for the first time.

This belated ability to “tune into” all the words she heard translated into another big leap in her receptive processing and understanding. Meg now recognized the functional words that would help smooth out her speech, but she did not as yet “own” them. She was uncertain as to their proper usage and hesitant to try them out. Having the vocabulary to converse didn’t automatically make her able to converse--at least not in a typical manner.

Meaghan was, for the most part, a passive communicator. She was willing to answer my questions but rarely asked one of her own. When I tried to get her to talk about a topic she was familiar with, her responses were rote, predictable and minimal. Meaghan never spontaneously expanded upon comments. If I wanted to know how her school day was, I had to prod her with specific questions and often had to supply her with choices to get an answer. Her standard reply when someone asked her, “What did you do in school today?” was to say either “had P.E.” or “played violin.” By the same token, if asked, “What did you eat for lunch?” she would invariably reply “hot dogs.” Meg had memorized these pat answers to specific question cues so she wouldn’t have to actually think of different original responses.

I was taken by surprise when she came down to me one evening at age ten and said, “Mommy, I was a soldier.” I wasn’t sure what she was saying, coming out of left field as this remark did, so I had her say it again. “I was a soldier,” she repeated, “in school play.” I got it! I knew that her part in the school play was going to be that of a soldier, but she and I had never discussed this. I certainly hadn’t expected her to bring it up. “We had rehearsal,” she piped up again. “March, march, march.” I was dumbfounded. This was the first time she’d ever told me something she’d done, without my having to pry it out of her. I praised her effusively and she was very pleased with herself, but unfortunately this singular instance of commenting didn’t turn out to be the communication breakthrough I’d hoped it would be.

Not only was Meg unable to tell me what she saw or did, she couldn’t use her words to express what she was thinking or feeling. I could cue her to tell me if she was happy or sad, afraid or mad, but without my input she still primarily expressed her emotions by smiling or laughing, whimpering or tantruming. She knew what she was feeling, and she had the words stored in her brain to express these feelings, but without my prompting she could neither free them up nor get them out. As for being able to interpret our feelings, Meg certainly knew when we were angry or disappointed and when we were being silly or funny, but more subtle emotions, like fear and sarcasm, were more difficult for her to pick up on, in large part because she wasn’t looking to pick up on them.

Meaghan was very adept at mimicking sounds or noises or weird voices. When Brian or I said or sang something in a silly, unusual or exaggerated way, she would echo it the exact same way. But while she could imitate the tone and cadence of all manner of voices, she tended to speak in a soft, high-pitched, melodious one; her pitch never changing with her emotions. Meaghan neither yelled nor whispered. She was fully capable of altering her voice, it simply never occurred to her to do so, to adjust her tone to the content of what she was saying. I suspect many autistic children speak in what we perceive as an odd, monotonous or sing-song tone of voice because emotion rarely factors into their utterances, and even when it does it never occurs to them that they can use their voices to express it.

Although Meg loved music and songs, she still couldn’t sing the lyrics to any but the simplest songs with any clarity. She could hum the melody and often she would vocalize with words of her own making, but even when we slowed down the tempo and rehearsed the lyrics over and over she had a hard time recalling more than a phrase at a time. Only now do I realize how hard it must have been for her to memorize words that for her held little meaning, that were for her merely a hodgepodge of melodic sounds. Little wonder she got into the habit of dropping ending sounds. Words don’t need to end if they all blend together in your mind. Meaghan could not use sense-

making as a guide to recall, nor was she accustomed to thinking about sentence structure. She would have had no less difficulty learning a foreign language.

The only time Meaghan strung a sequence of sentences together was when she said her bedtime prayer. Remarkably, she memorized this prayer (the one that begins, “Now I lay me down to sleep”) in its entirety within days of first hearing it. No doubt the rhyming of some of the words helped, but there was no repetition for her to rely on. Listening to Meggie recite this prayer every night so clearly and fluently, I’d sometimes wonder whether a higher power wasn’t stepping in and doing some internal prompting. If so, I wished He would spread the gift around a bit.

The bottom line was that, when I wasn’t actively soliciting her speech, Meaghan tended either not to use it or to use it very poorly. Just how poorly was pointed up to me when I decided to baseline her spontaneous, self-initiated utterances at age eleven. For three days I refrained from questioning or commenting and jotted down every word Meaghan said when she was at home. When I reviewed the totality of her unsolicited remarks, I was dismayed to see just how limited her functional language actually was.

For the most part she continued to use words primarily to make requests. She did not use sentences. She did not even preface most of her requests with the words “I want.” Instead, she merely uttered the verbal shorthand of what she wanted. “Hair rub.” “Help.” “See Daddy.” “Go car ride.” “No school.” “Do homework.” “Macaroni.” Sometimes she would stick in the phrase “I want” when it wasn’t necessary. “I want... give me kiss,” or, “I want... pour me milk.”

Occasionally, when she wanted something, she wouldn’t even ask for it directly by name. Instead of asking for hot dogs with mustard, for instance, she would tell me, “with mustard.” Or, if she was asking for a particular yellow toy, she would merely say “yellow.” She used idiosyncratic language only a mind-reader (or her mother) could comprehend. Often, Brian hadn’t a clue as to what she was asking for, nor did Michael. I was the official “Meaghan interpreter” for the family.

Temple Grandin attributes the propensity of people with autism to use idiosyncratic sayings to their highly associative though patterns. Sometimes, she says, these sayings have a logical associative meaning, like Meaghan’s referring to her favorite toys by their color. Other times the relevance of the sayings is more obscure, because they are based on tangible symbols autistic individuals have devised to help themselves understand and cope

with non-visual or predictable expectations or experiences.104

Many people with autism are unconcerned about whether or not they are understood. Their use of language is their own private business. Others, like my daughter, fully expect to be understood yet are not very concerned with the way they phrase requests because they figure others pretty much know what is on their minds. My daughter had a host of idiosyncratic sayings, bizarre phrases based on her unique associations.

I happened to be privy to their meaning or context because I was generally the one who uttered the sentences from which she appropriated these cryptic remarks. When she said “four o’clock” (or any hour) I knew she wanted confirmation that someone would show up at a precise time on a particular day. When she said, “look pretty,” she wanted me to wash and blow dry her hair. “I promise” was her way of saying that she promised to be good so she could get what she wanted. Meg used these sayings to communicate with others but, lacking a fully developed theory of mind, she couldn’t comprehend that unfamiliar others might not be able to make sense of her verbal shorthand.

Meaghan was able to amend her stilted, idiosyncratic utterances into full sentences when prompted to do so. But what surprised me was just how often I assisted her use of language. When I wasn’t prompting with questions or directions, I was having her ‘fill in the blanks’ of sentences I began or having her relay messages (“Go tell Daddy it’s time for dinner”) to her father or brother in an effort to get her to talk more to them.

Meaghan definitely talked more to me than to anyone else, considerably more. She also gave me excellent eye-contact all the time. Naturally, this was because she was most comfortable with and accustomed to me. Like most autistic children, Meg’s ability to talk to and look at people is a function of her familiarity with them. She would say very little to her new teachers at the beginning of a school year. But the more she got to know them, the more relaxed she felt in their presence, the more she was able to open up and reveal herself. Not only did she become more familiar with them, but they became more familiar with how to solicit language from her. Unfortunately, for many years, Meg didn’t get the same teacher two years in a row, so her verbal output at school was always in a state of flux.

At home her use of language was more consistent, but the extent to which I was controlling and influencing her speech seriously concerned me. I wondered if I had been doing her more harm than good all along by struggling so hard to get her to “use her words.” Certainly, some of the articles I read on autistic language development led me to believe so.

In their article on “Assessment and Intervention Strategies for Children Who Use Echolalia,” Drs. Barry Prizant and Patrick Rydell write of two primary styles of verbal interaction. The first is a directive style, in which an adult (or communicative partner) controls the focus and direction of a verbal exchange using “high constraint” utterances like questions or prompts. The second is a facilitative style, in which an adult allows periods of silence and uses reflective questions, positive acknowledgements and “low constraint” comments, leaving it up to the child to come up with generative language on his own.105

When I read this article I realized, much to my dismay, that the style I had always thought of as facilitative was actually directive. Meaghan had obviously become dependent upon my cues to use her language to her fullest ability. But, when I tried backing off and merely reflecting, praising and commenting, I either got no response at all or the rote, repetitive, echolalic or idiosyncratic remarks that were a far cry from the creative, generative output this “low constraint” facilitative technique was supposed to be promoting. The strategy sounded good on paper but, in my daughter’s case, it didn’t pan out in practice.

Clearly, Meaghan needed some direction in order to feel comfortable and confident enough to access all the language stored in her brain. But, if she was going to truly make that language her own, so that she could use it freely to communicate her thoughts, observations and feelings (rather than just echoing parts of mine) I had to wean her off her crippling dependency on my direction while at the same time still helping her to get the words out. As long as she could count on me to cue her, she did not have to think too hard about how to use her words.

I would have to teach her how to use her mind to access and control her words to speak in meaningful sentences, just as I had had to teach her to use her mind to control her pencil to write. There was only one way I could conceive of doing this--backing away and yet still facilitating. I would use written cues.

At school, in order to get Meg accustomed to talking and singing in a louder voice they sometimes had her sing into a microphone.

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Chapter Twenty Eight

“Now it is Now”

When Meg was ten I attempted to have her speech reevaluated. What a fiasco. She did fairly well on a single word vocabulary exercise where she was expected to identify simple black and white pictures, as long as I jumpstarted her responses with the prompt, “That’s a...” Had I not done so, and requested to be present during the session, my daughter would have said nothing.

I couldn’t help her when she was shown a book with four pictures on each page and asked to point to a specific one (to assess her receptive skills). I watched with a sinking heart as she consistently pointed to the picture in the upper right hand corner page after page, without bothering to scan the remaining three. She knew what was being asked of her, and I knew that she could readily identify all the pictures, but she opted to stick to a pattern rather than bothering to actually look. How she performed was of little consequence to her.

To assess her ability to follow directions containing specific attributes, Meg was presented with five items to choose from and given the instruction, “Touch the green square.” She touched a square that was red. When asked to “Touch the circle that’s yellow,” she touched a yellow square. She repeatedly focused on a single (last stated) attribute, dismissing the remainder of the instructions. After several rounds of selection, Meg scooped up all the items and tossed them on the floor. She’d had enough -- and so had I. It was clear to me that the examiner was getting a far clearer picture of my daughter’s autistic propensities than she was of her communicative deficits.

As long as Meaghan was going to become anxious and unsettled in any unfamiliar situation, we were only wasting our time and money attempting to enlist the help of outsiders. I decided I would conduct my own evaluation. Fortunately, several years earlier, in an effort to bolster what I then perceived to be a serious word retrieval problem, I had purchased hundreds

of dollars worth of language development materials from educational catalogs, so I had on hand plenty of posters, photographs and picture cards depicting people, places, objects, actions, opposites, adjectives, prepositions, categories and sequences. I used these materials to assess the status of Meaghan’s language.

What I found surprised me.

Meg was pretty solid on her nouns and verbs, although she did not use plurals or tenses. She also knew a great many opposites and adjectives, some better receptively than expressively. She could distinguish physical characteristics and emotions. She associated smiling with happiness, frowning with anger and crying with sadness, although surprise and fright were less clear for her. Meg did well with prepositions receptively, using both pictures and the placement of objects, although she sometimes confused “behind” and “beside” (both b words). She understood possessives after a fashion. When I asked her “Whose _____ is this?” she would answer “mine” for hers, but rather than saying “yours” she would say “Mommy’s” or “Daddy’s.”

Meg could categorize items and tell me their function. She receptively understood concepts of same/different and more/less. She could consistently and accurately answer yes/no questions, although she needed prompting to expand upon her answers. She evidenced some confusion with her pronouns. When she wanted to go to someone’s house, she often asked to “go to my house,” rotely repeating the phrase she heard the invitee utter. She would amend the “my” to “your,” however, when pointedly asked “Whose house?” She always referred to herself as “I” but tended to use proper names rather than “you” to refer to others.

With pictures she readily labeled a boy or man as “he” or “him” and a girl or woman as “she” or “her,” less readily referred to several people as “they” or “them.” Meg receptively understood the temporal concepts of first, next, last and the end. She could arrange sequencing cards in order, provided the sequence depicted was familiar to her, and could describe what was happening or “tell a story” using the cards when provided with question cues as prompts.

Meaghan had no difficulty responding to and discriminating between all manner of “wh” questions. I frequently questioned her around the house as to who, what, when or where something was being done. I used language posters and photographs as well to test her ability to discern, discriminate, make comparisons and to generalize and extrapolate information. Meg readily answered all my questions, although “why” questions, depending as they generally do on thinking things through, were problematical for her. She did better with “whys” when the information I was seeking related to

daily life activities (“Why do you take a shower?” or “Why is the boy drinking a soda?”). She did less well with generalities or inferences (“Why doesn’t Michael like to clean his room?”) With many “why” questions she was apt to utter the rote beginning, “Because....” and then be stuck either for an explanation or for a way to put her response into words.

Meg very rarely asked questions of her own and, if she did, she generally didn’t phrase them as questions. Instead she’d say the name of the item or person she was looking for or concerned about in a questioning tone of voice.

In addition to having her answer questions about pictures, I used language development posters (depicting different scenes with numerous people involved in various activities) to test Meg’s receptive discernment. Her ability to look had improved to the extent that she had no difficulty singling out and pointing to the smallest, most inconspicuous details I asked her to locate. When I began asking her to identify specific things, I noted that she was more adept at recognizing objects than people. For instance, if I asked her to point to a red scarf in a family picture, she could do this with ease. But, if I asked her to identify the person wearing the scarf, she would single out the scarf rather than zeroing in on the face of the person wearing it. (Of course, this might have been a case of her just tuning in to the latter attribute of my instruction rather then any intentional oversight on her part.)

When Meg did focus on the people in the pictures, she initially labeled the man in a family “daddy,” the woman “mommy” and the children “boy and girl.” But she quite readily picked up the more conventional terms, “father,” “mother,” “sister,” “brother,” “son” or “daughter,” and was able to generalize them to all the families depicted in the posters. She was also able to distinguish adults from children and older adults from younger ones, both receptively and expressively.

My informal assessment showed that Meaghan had a surprising amount of language stored in her brain. Clearly, she did know what was what and was able to retrieve the necessary information when prompted to do so with visual and question cues in a comfortable, structured session with a familiar person. But, if I didn’t prod her with questions, if I just put a picture before her and told her to “Tell me what you see,” she was unable to do so. She might hesitantly begin “I see...,” but this was as far as her unsolicited descriptions could go.

Meaghan understood everything that was said to her and, when focused, could follow directions without a problem. So I knew that her expressive dysfunction was not attributable to lack of comprehension. She certainly knew enough words to say far more than she was saying. The problem lay in her inability to take words and shape them into sentences of her own

making.

Meaghan’s poor oral motor awareness compounded this problem. She still couldn’t figure out how to stick her tongue out or form her mouth into a smile, and I’d noted some periodic drooling. Not only was this oral dyspraxia interfering with her ability to be understood but, because she had to think so hard about how to say her words, she probably didn’t want to have to think too much about what she wanted to say.

In fact, Meaghan’s unintelligibility and disfluency concerned me almost as much as her lack of spontaneous speech. Her enunciation of words with multiple syllables or double consonant blends was poor to abysmal. With s-consonant blends she tended to drop the “s” sound altogether, pronouncing school as “cool” or spoon as “poon.” But at least she took a stab at enunciating the beginning sounds of her words. The ending sounds, blended or not, she generally omitted altogether, especially if she was stringing several words together. In this, “s” sounds were again her biggest weakness. Simple words like “is,” “this” and “his” were barely recognizable when she used them and, although she could say “yes” quite distinctly when she wanted to, most of the time it came out as “yea.” Words like “ask” or “must” were a lost cause.

As I saw it, my only hope of getting Meg to articulate these words properly was to get her to visualize the sounds she was leaving off. I reasoned that if she could see the letters in the words she was saying, she would be less likely to omit them in her speech. Fortunately, Meaghan had an unusual affinity for spelling and letter sounds, an aptitude I’d discovered when she began to bring home homework that entailed her copying key words of a story or article from one side of a page to another. I noted that she never had to refer back to the source to see how words were spelled. She just knew! This innate spelling ability was a real boon because I figured that if she could spell words, she ought to be able to sound them out phonetically.

I began to teach Meg phonics. I started by having her read a series of simple, three letter words. She had no difficulty with the initial consonants or middle vowels, but whether or not she tacked the correct ending sound on a word was a matter of hit or miss, and switching from one ending consonant to another frustrated and unsettled her. This didn’t surprise me as it was her autistic nature to try to find a reliable, repeatable pattern and stick with it, rather than having to constantly adjust and modify her verbal output. She would have had no problem if I let her read all the words that ended in “t” in a sequence, and then moved on to words with “d” endings and so on. As long as she could tack a single ending sound on all words she was happy. It was the abrupt transitions, from “hat” to “bed” to “pig,” that threw her.

It was even more frustrating for her when I switched from single words to having her read simple sentences combining words. The more different ending sounds a sentence had, the more trouble she had getting through it. I had to prod her every step of the way to focus on the letters in the words she was reading and not to just say the first word that popped into her head.

It took weeks of daily practice to get Meaghan to begin to feel comfortable differentiating ending sounds. It was slow going because she hardly sat compliantly through the ordeal. She’d begin to whine when she made her first verbal mistake and would invariably be having a full blown tantrum by the time we finished the exercise. But I wouldn’t back down. She not only had to read each sentence correctly, saying each word distinctly, but she had to do it as calmly as possible before I’d allow her to be “all done.”

At times her progress was so painfully slow and so agonizingly achieved that my resolve wavered. But, in fact, she was making headway, and my hunch had been right. Her attention to the ending sounds of words in her reading was translating into clearer speech. Two months into our work Meaghan was able to articulate all consonant blends, at the beginning and end of words. The “s” sound still gave her some difficulty, but she was no longer omitting it and it was getting progressively stronger. Consonant digraphs were another challenge, but one day, out of the blue, Meg read and said “children,” clearly articulating the “ch” and “dr” as if she’d been doing it all along. Fortunately, once she got sounds she was able to generalize them to other words.

I decided the time had come to move on to books. I began with the simplest Seusses, the Bob Books and other fun beginning readers like Good Night Moon, Madeline and lots of Eric Carle. I wanted Meg to come to enjoy reading, and I thought that the more success she experienced in her struggle to ‘get the words out,’ the more confident she would become in her efforts.

It was by no means smooth sailing. Meg still struggled with her sentences, her intelligibility decreasing markedly with the length of her utterances. I had to have her point to each word to assure her visual attention, but even so her eyes often wandered all over and off the page. She was very wily about shifting her gaze just a tad to evade really looking, so I had to watch her like a hawk. Having to sustain her attention to the lines of print often triggered the nose itching reaction, which in turn triggered whining. But gradually her resistance subsided, her attention improved and, along with it, her reading disposition and ability.

Still, we were a long way from smooth flowing sentences. Meg only read one word at a time, and mistakes were frequent as she struggled to differentiate

between “if” and “it” and “is.” She also had to distinguish between the singular and plural forms of words and between different tenses or conjugations of the same word, like “go” and “going.” But the more I had her read, the more she became accustomed to picking out these subtle distinctions between the words on a page. She still improvised occasionally.

The rote pairing and association problems that plagued Meaghan’s speech were evident in her reading as well. She had a tendency to associate the first letter of a word with other familiar words beginning with that letter. If she saw the word “vase,” for instance, she might say “violin.” “Me” or “music” might elicit “man.” Good Night Moon begins with the sentence, “In the great green room.” If she wasn’t focusing, Meg would read “In the great, great room.” She saw the second “gr” and automatically repeated the word she had just heard herself utter that began with “gr.” In the same vein, the sentence “Now it is night” often came out “Now it is now.” (This propensity of hers to associate words with the same initial letter or sound frequently caused her to call a dime a dollar or to confuse the numbers six and seven and twelve and twenty.)

A variation of this first letter word association was her rote pairing of certain words in the pattern most familiar to her. This tendency showed up particularly in her reading. If she read the words “go to,” she would automatically follow them with the word “school.” In Good Night Moon there is mention of a “red balloon.” For a while after reading this book, anytime Meg came upon the word “red” in another book, she would invariably pair it with “balloon.”

In fact, Meaghan was unaccustomed to thinking about many word combinations as having meaning, so she was not looking to come up with meaningful words or phrases, she was merely trying to come up with the right combination of sounds that would ‘get her off the hook.’ I had to constantly coax her to “look at the words” to correct these rote associations and, little by little, her attention to the words on the page began to prevail over her reliance on the words in her mind.

The next challenge was to get her to comprehend and put into context what she was reading. If Meg and I read a sentence or paragraph together, she was able to answer questions about it. But when she was deciphering the words alone, she was not looking to make sense or garner understanding from them. In fact, she had yet to fully grasp that she had to apply some thought to words, whether they be those she read on a page or those she uttered.

Meg with her first and favorite Higashi teacher, Katz.

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Chapter Twenty Seven

All Work and No Play

It has been interesting to watch Michael’s relationship with his sister evolve over the years. Initially, she was his role model. He followed her everywhere, wanting to do whatever she did. Then, about when he turned three, Michael took charge of their play. He’d goad her into chasing him on our walks or around the house, or engage her in some other type of rough and tumble play. A favorite antic was to take hold of both her hands and spin her around, going faster and faster until they both got dizzy and collapsed on the floor in hysterics.

Looking back I can see that this period -- when Michael was three and four and Meggie seven and eight -- was the most typical in their sibling relationship. They were at times friends and at other times rivals. If Michael lagged behind or stopped to climb during our walks, Meggie would stop and wait for him or go back and get him, saying, “Come, Michael.” She looked out for him. Yes, she got antsy when the pace of our walk was interrupted, but I could tell by her facial expression and tone of voice that she was genuinely concerned lest her brother be left behind. She liked everybody in their place.

Michael still enjoyed playing simple turn-taking games with his sister at this time, and often I would hear them talking to each other. Having listened to me prodding Meggie to speak in sentences since his infancy, Michael had mastered the art of getting her to say more to him. If she said “No” or “Stop,” or any single word, he would prompt, “No what Meaghan? Tell me what you mean.” And she would!

Their relationship was far from idyllic. Michael often picked on Meaghan and she frequently got annoyed with him. She would get particularly irritated when Michael tried to take part in or interrupted our homework sessions. She wanted all of my attention for herself and resented sharing any of “our” time with her brother. If Michael entered the room while we were working, she would become quite agitated and would tell him, quite forcefully, to “go

away.” If he didn’t oblige, she would get up, push him out of the room and shut the door in his face. (During this period she also frequently told Brian and I to “go out” when our babysitter came to the house. She was going through a very possessive phase, preferring to spend time alone with her pick of favorite person.)

I didn’t worry much about Michael’s feelings being hurt. He actually revelled in provoking his sister into banishing him. Because she was just about his only playmate at this time (prior to his attending kindergarten) he was always pestering her when she was home and trying to get her goat. I allowed this hassling up to a point because I felt it helped to draw Meggie out of herself, but I drew the line when it interfered with her school work or when she became overly distressed. For the most part, however, the two of them got along fairly well. When Meg wasn’t tired or working with me, she enjoyed Michael’s company and got a kick out of his antics.

Prior to his attending school, where he was exposed daily to a lot of typical children, Michael wasn’t really aware that his sister was handicapped, much less of the severe nature of her handicap. I had resolved not to tell him anything about autism until he asked. I didn’t want him thinking of Meaghan as “different” or “abnormal” until her distinctiveness became obvious to him. I was counting on the strong bond of companionship formed in their early years to carry them through the rough spots that would surely come as he moved on with his life and she didn’t.

Blessedly, we haven’t had too many rough spots to date. When Michael was in kindergarten he once asked me why Meaghan had such trouble getting her words out. I told him that this was because she hadn’t been blessed with a brain that worked as well as his did. I fell back on the old “funny wiring” explanation, saying that information going into his sister’s head got mixed up and scrambled, and that it was extremely difficult for her to make sense out of all of it. This was why she had such a hard time learning to talk and to do things.

He readily accepted this explanation and didn’t ask any more about it until a year later, when he was in first grade. I can’t recall whether it was because I was doing a lot of reading on the subject or because I happened to mention the word in conversation, but he asked me what autism was. I explained that it was a type of sickness that made people think and behave differently, and that I was trying to find out as much as I could about it so that we might be able to do more to help his sister and others like her. This sufficed to satisfy his curiosity at the time.

Little by little the gaps in his understanding have filled in as he questions this and that. Michael now understands that his sister is autistic but, because we have never made it seem so, this is no big deal for him. He has

lived with his sister’s unusual ways all of his life. He knows he has to watch out for Meaghan. He sees the precautions we take to keep her safe. He’s heard us frantically calling out her name, endlessly asking each other “Where’s Meaghan?” when we are uncertain of her whereabouts. He knows only too well the consequences if we lose sight of her even momentarily. He’s been in on several of our terrifying chases. But thankfully, he takes it all in stride. His awareness of her “differentness” has not made him love his sister any less. But no longer is she his only friend or playmate.

As Michael has gotten older, he has grown more impatient with his sister’s immaturity, with her hanging around with him. She still wants to have his company, but he has outgrown many of their earlier play strategies and would rather play by himself or with a friend. When he has a friend over, I try to keep Meaghan out of their way as much as possible. But if they are out in the yard, she’ll often follow them around, clearly interested in doing what they do. Sometimes, Michael will make a game out of her wanting to be with them and try to avoid her as much as possible. I am saddened a bit by this, especially as he is generally understanding and sensitive where Meggie is concerned. But I do realize that he is a child first -- a growing boy with insecurities of his own -- not just a brother or role model. I don’t want him to feel burdened in any way by his sister’s handicap, but I do want him to understand that by his behavior he is setting an example for other kids to follow. If he is accepting of Meaghan, others will be too.

Actually, I marvel at how rapidly Michael -- as a “normal” child -- has come into his own. He is, by turns, shy, gregarious, serious and funny. He is involved in numerous sports and extracurricular activities. Learning comes easily for him, and he is curious about and interested in everything. An avid Nintendo player, he can figure out computer games and systems, the rules of which his father and I can’t begin to fathom. In short, he is a typical boy; active, independent, involved, inventive and creative. He has no trouble finding things to do, boyish ways to keep himself amused and occupied. On our walks he often makes up and recounts stories of dinosaurs or dragons, space aliens or other supernatural villains or super heroes. He revels in the exploits of Nintendo’s Mario and Luigi and is an avid Pokemon follower and collector. When he has friends over, I marvel at the lengths to which their imaginations take them in their play. When he is alone, he spends hours drawing detailed renditions of his current fascinations.

Michael has always had a very active imagination. Sometimes I think that he got a surfeit of all the things his sister lacks. As a toddler he would stride around the house with his blanket tied over his shoulders and a coat hanger in his hand as the fiendish Captain Hook. Then he was Batman. Then the white Power Ranger. Then Star Wars’ bounty hunter Boba Fett. He didn’t just pretend to be these characters, he truly transformed himself into them in his mind. He is fascinated equally by mythical figures or gods from

ancient history and androids, aliens or space creatures from the next millennium or another dimension. He is always envisioning and daydreaming about life beyond the here and now.

Meanwhile, his sister struggles daily just to cope with the here and now, to make sense out of the present. I am saddened that Meg will never know one of the true joys of childhood; will never be able to abandon or transform reality into some whimsical form of fantasy. But her awareness of her own ability to have thoughts and feelings is so tenuous that it is a struggle for her to feel secure in her own identity, much less to try to pretend to be someone else.

I believe that this inability to put herself in the shoes of another is part of the reason for Meaghan’s disinterest in much of what’s on TV. As she is mentally incapable of escaping to the fanciful world of make-believe or of empathizing with the plight of others, her interest in the goings-on in the lives of many TV or movie characters is bound to be limited. It’s no longer a matter of her inability to sustain her gaze. Although there may be some residual vestibular impact making the combination of sight and sound uncomfortable for her, Meg can attend to the screen perfectly well when the subject matter interests her. If I put in a video showing familiar family members or school activities involving her favorite teachers, her eyes remain riveted on the set. Some actors, particularly those with unusual accents, hold her attention as well, as do humorous incidents and some musical segments. So I know that Meaghan is capable of watching TV. She just opts not to bother most of the time, unless she is doing so in the company of another, in which case she often requests an arm or wrist massage while watching.

In fact, Meaghan still opts to do very little most of the time. She will use our computer when I sit with her, and she has several kids’ laptops and other electronic games and gadgets that she is able to use with my assistance. The only toys she plays with independently on a fairly consistent basis are her keyboard synthesizers, but her “play” with these tends to be repetitive and predictable. Rather than experimenting with the various keys and buttons, she presses the same self-playing song buttons over and over, or if she finds a note or sound she likes, she’ll play it incessantly. She makes no attempt to vary the melody or to improvise songs of her own. When I demonstrate ways to combine the various tones, rhythms and accompaniments, she will willingly follow my example, but when I walk away she invariably resumes her restrictive routine.

With age and education Meaghan has made consistent progress in all other areas, but her spontaneous play behavior remains poor to negligible. Toys R Us has nothing on our house. We have multiple variations of just about every game or toy, be it creative or educational, on the market, and yet our

shelves might as well be empty for all the interest Meggie shows in any of them. She still likes little objects -- the plastic blocks or shapes from her old shape sorters, small pieces of furniture from her doll houses, particularly if they are yellow, toy cars, little dolls or action figures. She doesn’t play with these objects, but neither does she hold them, bite them or tap them to her chin as she once did. She just needs to know where her favorites are, safely and precisely arranged on her bedside table.

At one point, when Meaghan was heavily into the biting stage, I got so frustrated with her preoccupation with these little toys that I took them all away. If she wasn’t going to play with them properly, I felt she shouldn’t have them. This sensory deprivation sent her into an emotional tailspin or “meltdown.” She wept uncontrollably, asked repetitively for “my toys” and worst of all, woke up in the middle of the night anxiously searching for them.

I quickly realized the error of my ways. But, rather than allowing her unfettered access to them once again, I hit upon the idea of having her earn them back. Since the toys were clearly so important to her, I would use them as an incentive to insure that she behaved well or to keep her focused on skills I was trying to teach her. When she behaved or worked well, she earned a toy of her choice (you’d think she’d won the lottery). When she whined or did not work up to her capacity, she either lost a toy or forfeited her chance to earn one. At first, she would get very upset over the loss of a favorite toy but, when she understood that it wasn’t permanent, that she would have numerous opportunities to earn it back, she calmed down and began promising to “be good” or to “do good work.” Overall, this tangible reward strategy has worked out remarkably well.

Still, if I could wish for one thing that would make my life easier and my daughter’s life more pleasurable, it would be that Meaghan could develop a greater capacity to occupy herself creatively or productively on her own. How wonderful it would be if she could look around and see the world with the wonderment of a normal child for a change, instead of experiencing only constricted and confusing fragments of life with the blinders of autism. Yes, I would love for her to be able to talk and act normally, but I know that even if she develops the capacity talk a blue streak and her behavior is impeccable, if she can’t learn to use her mind in a manner that allows her to grow and express herself as an individual, than the perseverative, restrictive, obsessive tendencies of autism will continue to stifle her ability to live her life to the fullest.

Meggie and Mike in their younger years, when they were first exploring the bonds of "friendship."

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Chapter Twenty Six

Physical Feats

Although Meaghan enjoys all her classes, her favorite class of all is P.E.. When I enrolled her in Higashi, I thought the daily jogging and emphasis on physical activity would be a wonderful means of reducing her anxiety and arousal level and increasing her agility and stamina. I didn’t fully appreciate then just how crucial a role Meg’s physical development, her growing awareness of and control over the parts of her body, would play on her overall mental development.

As with everything else, this physical control did not come without years of repetitive training, with body exercises simplified and expanded over time. Initially, Meaghan was uncertain about her arm and leg movements and had difficulty fully extending her limbs in any direction. But with time and practice the extensions have become more fluid, and she has learned to perform the sequence of exercise movements in a fairly precise fashion in unison with her schoolmates. She has also learned to concentrate and pay attention in a large group.

Because the exercises are based on principles of sensory integration and stimulation, Meaghan’s mastery of them has benefited her mentally as well as physically, by kicking the sluggish nuclei in her vestibular system into gear. Because these nuclei are now operating more efficiently to integrate the information from all her senses, her brain is functioning better, her thoughts are more organized, and she has developed a better sense of herself and her abilities overall.

In fact, I am now quite certain that Meaghan’s problems with looking had a vestibular basis all along. Because she was so physically timid and apathetic for the first five years of her life, her brain was unable to process and integrate enough visual sensations with vestibular sensory data to form a clear-cut visual-spatial percept; to allow her to feel comfortable in or confidently relate to the space around her.86 This uncertain visual-spatial perception undermined her sensori-motor development, causing her to have

a poorly developed body percept to use in motor planning. And her poorly developed body percept further undermined her visual and vestibular maturation.

What amazes me is that none of the numerous optometrists and ophthalmologists we consulted over the years picked up on this link, especially as Meaghan’s head tilt and eye turn were dead giveaways that something was amiss vestibularly. In fact, the vestibular nuclei are directly responsible for adjusting eye and neck movements to enable the brain to put visual information in the proper perspective. Meaghan’s right eye turned in because the vestibular nuclei in her brain were not getting and integrating the proprioceptive input and feedback they needed to properly adjust it. Nor were they getting clear and sufficient information from the gravity receptors in her inner ears; information which would have enabled Meg to better determine whether she was holding her head upright. Or perhaps the nuclei were directing the head tilt as a way of compensating for her skewed visual processing.

Whatever the reason, Meaghan’s vestibular system was clearly not doing its job of coordinating her neck and eye adjustments to enable her to properly focus, track and shift her gaze smoothly from one spot to another. This made it difficult and discomforting for her to look at anything for very long. Because her vestibular system was not functioning to steady visual input and put it into the proper context, not only did that input have distorted meaning for her, but it might have been off-putting as well, even appearing to flutter or flicker before her eyes. In a sense, Meaghan was doubly handicapped because, while other children with poor body percepts rely heavily on their visual sense, she couldn’t rely on her eyes to tell her much of anything. Her visual sensitivity was even greater than her proprioceptive and motor uncertainty.

This is no longer the case, however. Since beginning at Higashi, Meaghan’s eyes have straightened out and she no longer angles her head to the side. Meaghan’s physical coordination and confidence have increased ten-fold. She is able to roller skate, peddle a bike, jump on a pogo stick, walk on stilts, ride a unicycle and perform gynmastics -- no small feats for a child who was once wary of any gross motor exercise.

But, although Meaghan is able to do just about any activity other children her age can do physically, the problem lies in letting her do them on her own. I dare not let her out in the neighborhood to roller skate or ride her bike, unless I run along side of her making sure she turns and brakes when necessary and doesn’t ride off into the sunset. This is great exercise for me but, the older Meggie gets, the odder having her mother hovering over her becomes. With Meaghan I must always be on guard not to foster her natural dependency, which is difficult when I dare not let her out of my sight.

Public recreation paths would be a biking option if they weren’t so popular with pedestrians, but I’m cautious about letting Meg loose on busy narrow walkways. I worry that she might be too distracted to adequately control her steering or braking, so when we go to public parks we generally get our exercise on foot. Fortunately, Meaghan enjoys walking as much as I do. Her energy level, stamina and muscle tone have increased significantly with her school jogging regimen, so she is able to hike any distance without tiring. We average four or five miles on her days off, varying our routes as much as possible, although we both have our familiar favorites.

The spring that Meaghan turned eight we installed a swimming pool in our side yard. Brian and I debated the safety issues long and hard, but we were tired of trekking to and from the beach and joining a club with Meggie was not an option if we wanted to minimize the stress in our lives. Aware that Meg would have little sense of drowning danger, I dutifully signed her up for swimming lessons. She enjoyed being in the water as long as she had a kickboard to hold onto or her instructor at her side. But one day, figuring she was ready, he let go of her and backed off, forcing her to swim the six feet or so to the ladder by herself. She made it, but she was so traumatized by the experience that she lost all confidence, shying away from going back into the pool.

To this day Meaghan has a healthy respect for water. She rarely goes into our pool by herself, and when she does go in she resists putting her head under the surface. She prefers to jump about in the water or float around with a tube or swim noodle. I have taught her the basics of swimming, and each year she does better coordinating the movements of her arms and legs, but as she is able to walk around in our pool she has little incentive to keep herself afloat by kicking and paddling. All this is not to say that we have no fear of Meaghan drowning. Her ability to touch the bottom in our pool might well lead her to have a false sense of security about other pools. So, as always, we are ever vigilant.

The summer that Meaghan turned ten, I enrolled her in a riding program for special needs children called Challenge Unlimited, run by Ironstone Farms in Andover, MA. These lessons quickly became the high point of her week, due in large part to the genuine pleasure her instructor, Gene, took in working with her. Although I worried that Meg might not respond well to Gene’s patient, soft-spoken manner, from the start she listened well to what he had to say and performed not just appropriately but quite proficiently.

This is no conventional riding program. It is designed to teach body awareness along with riding basics, and I delighted in watching Meg master the increasingly complex moves and maneuvers astride her favorite horse “Thistle.” First, Gene had her kneel on Thistle’s back and alternately extend

her legs out behind her. Then she had to turn herself “around the world,” sit sideways, backwards, sideways and forward again while the horse paced around the rink. Finally she had to bring herself to a full standing position atop the horse. Her balance and courage amazed me. The more Gene challenged her to do, the more she concentrated, the more comfortable and confident she became of her movements.

At the end of most sessions, when she had completed all the exercises, Gene would let loose his rope hold on the horse and coax it into a canter or gallop. Meg particularly relished this free ride, the faster and more jostling the horse’s gait, the better. She’d bounce up and down, laughing in utter abandon as her brain absorbed the nourishing vestibular stimulation.

We kept up the riding lessons for two years, until Gene gave up instructing on Saturdays and the price of the lessons went up for the third time to a cost we could no longer afford. By chance, the spring that Meg stopped riding I happened to purchase a large trampoline, which we set up in the back yard. Meg quickly figured out that she could achieve a physical sensation akin to horseback riding by sitting atop her hoppity-hop ball while jumping around on the trampoline. Eventually, she relinquished the ball and just jumped on her own, readily imitating her brother’s moves in kneeling or sitting and returning to a standing position. A few summers ago she followed Michael in climbing atop the monkey bars eight feet off the ground above our swing set; something she’d never dared attempt before.

She also figured out how to throw and catch a ball. This might not sound like much of an achievement but, for Meaghan, these simple actions were more difficult to process than the balance and coordination necessary to ride a unicycle or perform acrobatics on horseback. She couldn’t visually track a ball’s movement, nor could she properly control her arm and hand movements to catch or throw. She used to hand a ball to us if we asked her to toss it, unable to fathom how to make an object cross the distance from her body to ours other than to cross that distance herself.

Thanks to her Higashi training, Meaghan is definitely more comfortable with her body overall, experimenting more freely, less cautiously with her motor control. She still has some difficulty discerning and directing precise arm and leg movements, but every year her agility and coordination improve, along with her confidence.

Perhaps the most important difference between Meaghan’s Higashi experience and her experience in previous programs is that more has been expected of her at Higashi. She has been forced to trust in herself, to rely more on her own instincts and abilities. When she began at Higashi, Meaghan’s self-confidence was at an all-time low. She had virtually no sense of herself as a rational, independent being. Years of intensive, one-on-one

teaching had left her utterly dependent on the minds of others. At Higashi, she has been weaned off this crippling dependency a year at a time. The first several years she still relied heavily on her teacher’s assistance, but each year her responsibilities were increased and more autonomy was expected of her.

I have been able to track the development of Meaghan’s confidence over the years most noticeably by observing her demeanor during her school’s Annual Celebration. This is a “big deal,” marking the culmination of the Japanese school year. The children rehearse for months to put on very professional stage performances that highlight what they have learned in music and P.E.. A play is also put on by the students in the elementary divisions.

When I first saw Meaghan up on stage in the spring of 1993, I was amazed and delighted. She, on the other hand, was clearly terrified. Although she did what she was supposed to do, throughout most of her performance she stared, with wide, glassy eyes, straight ahead at no one or nothing in particular. In her book, Nobody Nowhere, Donna Williams offers some insight into this bizarre staring behavior. She says that when she stared past things, seemingly at something else, she was attempting to take in what was happening around her while escaping her fear by experiencing the visual image indirectly. She writes that she constantly had to trick her mind so that it would relax enough to take things in. By looking into nothingness she could lose herself in the spots she saw in the air, and she found this very calming.87 No doubt so did my daughter in dealing with her terror her first time up on stage.

The following year, Meaghan didn’t “look into nothingness” during the performance, but neither did she lift her eyes off the ground. She no longer had to “trick her mind,” but she was not confident enough to face the audience directly. Her forth year at Higashi, Meaghan braved many glances out into the audience, and I even caught her smiling on occasion as she independently carried out her lead roles in both the P.E. performance and school play. This past year Meg stood right up in front and held her head up high as she scanned the faces in the audience, looking to pick us out of the crowd. Although she will probably never be completely comfortable up on stage (as few people are) Meaghan now has the confidence to cope with many of her fears without ‘tuning out.’

Little by little the world is opening up for my daughter. Over the years she has spent at Higashi, she has been able to accumulate knowledge and experience and incorporate it into her actions and thoughts, so she is now less tentative and terrified of taking control of her life. Thanks to the encouragement, energy and high expectations of her teachers, Meaghan now trusts in herself enough to be open to learning and willing to try new

things.

Learning will never come easily for Meaghan, but I doubt there is much she can’t learn, if given the opportunity to learn it in her own style, at her own pace. Her teachers understand this. They also understand the joy and fulfillment that children like Meg experience when they succeed in mastering the skills that challenge them to use their minds and bodies in a conventional, acceptable and rewarding way.

Meg in roller-skates, practicing for the Special Olympics.

Meg, unable to look up and face the audience at the an early Annual Celebration.

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Chapter Twenty Five

Against the Odds

In stark contrast to the misery she experienced after a short time in her other school placements, Meaghan has never spent an unhappy day at Higashi. She’s had her share of sobering moments, when she’s attempted to test her will against that of a teacher or when confronted with new challenges, but in the main she likes her activity-packed days and thinks of all the Higashi staff as her “friends.” She enjoys going to all her classes and has adapted well to Higashi ways.

In taking an overview of the last seven years, I am struck by just how far Meaghan has come. There is definitely a method to the Higashi practice of exposing students to a variety of age appropriate curricula in annual phases. The material, modified to suit each student’s learning style and intellect and visually rendered in a clever and creative way, does sink in.

I have come to believe that the key to teaching children with autism is not to prolong exposure to any material. Teach it for several weeks or a month and then move on. Repetition and reinforcement are good, but only up to a point. Beyond that point a child typically becomes bored or frustrated (as happened with Meaghan at the May Center and LCDC).

Like most kids, children with autism need to be challenged mentally. Their minds need constant stimulation or they will “tune out.” It might not appear that a child has learned all there is to learn on a certain subject, but it’s better to move on and maintain interest than to constantly rehash material that the autistic brain needs “down time” to fully process. When the subject is reintroduced after an interval of time, it’s not unusual to find that the child has actually learned or retained more than was apparent the first time around. At least I have found this delayed learning style to be the case with my daughter. One month she doesn’t know something, and a few months later she does. It just takes a while for her processing mechanism to swing into gear and put it all together.

At Higashi, every lesson has a worksheet accompaniment, assignments done both in the classroom and at home. For visual learners, as most autistic children are, this pairing of the verbal with the visual is a must. For an auditory learner like my daughter, I initially had my doubts as to its efficacy. But I knew that Meaghan had to learn to look if she was to continue to learn, so I actually looked forward to the work involved in training her to trace -- the first step in teaching her to print.

For the first several months Meaghan was miserable. She hated having to look at the letters and numbers she was supposed to be tracing. When she looked her nose would start to itch, and she would start to fuss. I initially attributed the problem to her seasonal allergies, but when fall turned to winter and the nose itching persisted, I realized that it was actually a symptom of her visual hypersensitivity. The moment she stopped working her nose stopped itching. This connection was all the more apparent because, by this time, Meaghan’s early resistance to tracing had given way to willing, if hesitant, participation. Now she whined not because she didn’t want to do the work, but because she really wanted to do it but couldn’t without discomfort.

In an effort to resolve this impasse, I brought Meaghan to the Walpole offices of Dr. Richard Laudon, an optometrist and vision therapist, reputed to have some experience in working with autistic children. He performed a battery of tests, concluded that I was correct in perceiving the problem with Meaghan’s vision to be in her brain rather than in her eyes, and recommended a three-part regimen to try to remedy it.

The first exercise I was to do with Meg daily was a simple tracking one. I was to cover one eye at a time with a patch and have her use her uncovered eye to follow her reflection as I moved a small mirror slowly around in a big circle. As an attention exercise I was instructed to write a series of five or six letters in a row across several index cards, hold the cards three feet away from Meg and have her identify the letters in sequence, left to right. Then I was to point to the letters in random order while she read them off. To improve Meg’s scanning ability, I made up sheets with rows of nine or ten letters or numbers written across them in random order. The objective was for Meg to scan from left to right on each row, finding and circling all of one particular digit at a time.

Meg enjoyed doing this “eye work” so much she frequently asked for more. It wasn’t long before these exercises became too easy for her, so I expanded them with more challenging perception and discrimination activities. I had her scan rows of tiny figures to discern one with a tiny flaw or two that were alike. I had her search out patterns and sets among a jumble of images, match pictures with their silhouettes, connect dots and find her way through a labyrinth of mazes.

The upshot of all this visual activity, along with all her tracing work, was that Meaghan’s eyes became desensitized to a significant degree and her nose itching abated. By the New Year Meg was able to look without itching and her hand-eye coordination had improved significantly. On her teacher’s recommendation, I had her use rubber pencil grippers so that she could properly grasp and feel the pencil between her fingers. This afforded her more control, and she was able to trace quite well with only the slightest pressure of my hand on hers to keep her on target.

Meggie’s writing concentration and competency improved steadily during her second year at Higashi, but her confidence lagged behind. Although she was now able to trace with only a faint fingertip touch on her hand, she did not trust herself to do so independently. If I tried to remove my finger, she would grab it back telling me firmly, “hold my hand.” So we compromised. I kept my finger on her arm, but I moved it back progressively from her hand to her wrist to her elbow.

By the time she returned to school in September of her third year, Meggie was able to trace independently, but she didn’t know this. If I took my hand away, she stopped writing. I decided to try a new tactic. I picked up a pencil myself and used it to point to where she was to start writing. “Write M” I cued, and amazingly she wrote it. As long as she had my verbal input and undivided attention, she could print by herself. If she got stuck, I’d simply cue the direction she was to move her pencil. If I sat back and said nothing, however, she would freeze.

For years Meaghan would not do any pencil work unless I was sitting with her. My just being near her didn’t suffice to afford her the confidence she needed. While she understood the writing process in her mind, she did not trust in her ability to use her mind to direct the pencil in her hand. As long as I was with her, my mind (and verbal cues) acted as reinforcement for her mind; my involvement lessened her uncertainty. By decreasing my direct involvement I forced her to rely on her own initiative and ability, and this did not come easily for Meg, especially as the proprioceptive feedback from her fingers was not as helpful as it should have been. She saw the lines she was supposed to stay on but had difficulty coordinating her vision with the precise directional movement of her hand. Also, due to her gestalt processing, she tended to want to get from starting point to ending point without concern for following the lines or dashes in between.

This gestalt propensity also affected Meaghan’s drawing. When tracing shapes or zig-zag patterns, it was very difficult for her to stay on the lines all around a circle or all the way to the angles in squares or zig-zags. She tended to want to cut corners or short cut to the end of the shape or pattern. Meg can now trace and draw simple shapes and designs and a

variation of a happy face by herself, but here again she is constrained by her lack of confidence (as well as her lack of imagination). She is often uncertain about the starting point or unsure about which direction to move her pencil. She tends to draw slowly and sometimes gets stuck and is unable to go on unless prompted.

Nowadays Meaghan’s homework consists mostly of copying, which she actually finds easier than tracing as she doesn’t have to struggle with staying on the lines. At first she needed the model of the word or words she was to copy written directly above where she was to write, but she is now able to copy off the blackboard with verbal prompts. She knows how to write all her letters and numbers and can write words and sentences independently if the information is cued verbally.

Because her vision isn’t her most reliable sense, Meaghan learns best when visual input is supplemented with aural input. At Higashi, her teachers have incorporated their knowledge of her learning style into their teaching style, initially guiding her physically through tasks, then fading physical prompts to verbal cues which are reduced and eliminated over time.

In this manner, Meaghan has been taught to dress and undress herself, including buttoning buttons, zipping zippers and tying her shoes. She has learned to hang her clothes on hangers or fold them and pack them in her bag. She has learned proper table manners, such as waiting for others to be seated before eating, using the correct utensils in an appropriate manner and wiping her mouth when necessary. At home and at school she participates in clean up by either bringing her dishes to the sink and loading in the dishwasher or by carrying her tray to the designated area and sorting her dishes and utensils into appropriate bins.

In music class, Meaghan has been taught over the years to play the keyboard harmonica, the violin and the alto recorder. In art class, she has learned to color, draw, paint and work with paper mache and clay. Unlike many of her fellow Higashi students, Meg has little appreciation of the aesthetic or expressive point of her art work, but she does enjoy the process of creating and has learned how to competently use all the materials involved.

The academic curriculum Meaghan has been exposed to has been multi-faceted and progressive. In the classroom she has learned about dinosaurs, about wild and tame animals, about plants and about the planets. She has learned about American history and famous Americans, as well as about many different countries and cultures. In math, she has learned sequencing, estimating, addition, subtraction, multiplication, measurement, fractions and equations. She has learned to tell time, to recognize and identify coin values and equivalencies, and how to use money to pay for her meals or purchases

when she goes out. Currently, she is learning about current events and about how to read a newspaper, and she is being taught to apply her academic learning in an functional way with the onset of vocational training.

Language learning is integrated throughout the curriculum at Higashi. Vocal training begins in music class with the learning of a vowel scale that teaches the children to form mouth shapes, which in turn helps them to vocalize words. Meaghan has been taught to be less timid in her vocalizing and to use a louder voice by singing and speaking into a microphone. In the course of her school day she is given numerous opportunities to interact with her teachers and schoolmates: to make choices, take turns, imitate, initiate, respond and role play. She is expected to answer questions about all subject matter, as well as about her life outside the classroom.

Literacy is incorporated into language lessons initially by the pairing of words with pictures, then words with words, then sight reading lessons and stories. Interactive software is also used in computer class. Meaghan’s resistance to scanning made it difficult for her to learn to use the computer keyboard, but she has learned. At school they initially had her match letters to keys on an enlarged version of the keyboard to accustom her to their location. At home I tried a variation of her eye exercises, using large index cards with progressively more letters on them and having her point to the letters I named in random order. Although Meaghan is now able to type by herself when the letters are cued, she is often hesitant about doing so. Sometimes her finger will hover over a key until she is instructed to go ahead and type it. As with her writing, she relies on the presence and verbal acknowledgement of another.

The one comment I will make on facilitated communication is that I believe that a lot of the controversy over the technique could be resolved if instructors or partners devoted less time to “facilitating” the handicap and more time and effort to teaching their autistic clients independent writing and typing skills. Most autistic children can be taught to write or to use word processors on their own -- just as they can be taught to do just about anything else on their own -- if the task is broken down into its simplest components and skills are built upon gradually and sequentially.

Jane Ayres writes, in order to read “all the parts of the brain that deal with language must communicate with all the parts that deal with visual perception and memory. Writing is even more complicated,” she goes on to say, “for in addition to (all the collaboration needed in reading) the brain must process hand and finger sensations, compare them with memories of how the hands and fingers are supposed to feel when they write, and then organize the muscle contractions that move the pencil.”85

All this, of course, presupposes an efficiently operating tactile and vestibular system and no problems with proprioception, which was hardly the case with my daughter. In fact, every one of Meaghan’s basic sensori-processing systems was “off,” so she lacked a solid foundation upon which to build any new skills or abilities. The fact that she has been able to learn these “basic” skills, along with so many others, is proof positive of the autistic brain’s remarkable adaptability.

Meg at her desk at in her Higashi uniform.

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Chapter Twenty Four

A New Beginning

Although we were fortunate to live in Massachusetts, a state with half a dozen good schools for autistic individuals, finding a well-rounded, not-too-distant program that would satisfy my daughter’s intensive educational needs while offering her some opportunities for mainstreaming was virtually impossible.

If I wanted Meaghan to be with normal peers for any part of her school day, the private schools were not an option. I would have to settle for a collaborative classroom in a neighboring town’s public school system, as Lynnfield still had no suitable special needs classroom. But the several classrooms that I looked at couldn’t have been more wrong for my daughter. The children in them had a variety of mental and physical handicaps, but none of them had significant behavioral issues. The teachers had little experience in coping with the unique challenges of autism, and I didn’t subscribe to the ‘just put the child in the classroom and hope for the best’ approach.

Realizing that I would have to forfeit my hopes of getting Meg with other kids, I began to focus my search on private schools in the area. There was the New England Center for Autism and the League School in Boston, but I was still hesitant about letting my daughter commute back and forth to the city and the reviews on these schools were decidedly mixed. One school, the Lighthouse School in Chelmsford, rather intrigued me.

The school accepted students with a wide range of disabilities but had a sizeable autistic population. I liked the fact that each student was treated as an individual and was offered specialized services and therapies tailored to his or her particular needs. What concerned me was what was done -- or not done -- with the kids during the times when they were not receiving their individualized services. Noting the lack of any observable academic guidance in the several classrooms I visited, it struck me that they were used mainly as holding stations until each child got his/her turn at therapy.

The last thing Meaghan needed was another school program where the down time outweighed the learning time.

There was one other school in the area that I was curious about --the Boston Higashi School in Lexington. I hightailed it over to the Autism Support Center and ransacked their files for information on the school. A friend at LCDC lent me a packet of material on Daily Life Therapy, the philosophy on which the school operates. I read everything I could get my hands on and, the more I read, the more my interest was piqued.

I learned that Dr. Kiyo Kitahara, principle of the Musashino (suburb of Tokyo) Higashi Gakuen (School) in Japan, developed Daily Life Therapy as a way of teaching the autistic children that came to be integrated with the typical children in her classes. The basic tenets of DLT are group dynamics, modelling, consistency and follow through. The goal is for autistic children to achieve normal -- or as close to normal as possible -- physical and intellectual development, along with social independence and self-esteem. But first they must achieve control over their emotions. Dr. Kitahara believed that at the core of self-control is self care, the ability to carry out basic daily living skills, such as dressing, eating and grooming, independently. Through the mastery of these self-care skills, children develop the independence, emotional stability and confidence that makes it easier for them to learn other things.

Dr. Kitahara believed autism to be “like a dreaming state” and that “to break this kind of unstable, weak condition, physical exercise is best.” At Higashi, exercise is intended to calm the children (through the release of anxiety inhibiting endorphins) as well as to stimulate their minds and help them establish a proper rhythm of life. The premise behind the group teaching is that an interdependence develops within the group, fostering a sense of belonging as well as a sense of self.

Dr. Kitahara not only believed all autistic children were capable of learning, she credited them with hidden talents or abilities that could be brought to the surface with the right type of educational stimulation. This meant an atmosphere of normalcy, age appropriate activities and curriculum, and above all, a strong teacher-student bond. She wisely recognized that any school or methodology is only as good as its teachers and that, in order for teachers to be effective role models, they must first establish close, meaningful ties with their students. They must also maintain high expectations. Dr. Kitahara wrote, “Within every living child exists its most precious bud of self-identity. To search this out and foster it with loving care; this is the essence of the education of the autistic child.”

Taken as a whole, Daily Life Therapy struck me as a uniquely holistic yet down-to-earth approach to teaching any child, not just a child with autism.

Its focus was on stabilizing emotions and instilling self-confidence and independence. Certainly, no child was more in need of this type of bolstering than my daughter.

My heart was in my throat as Brian and I drove up the drive to the Boston Higashi School on a Friday morning in early May, the day of their Spring Open House. I knew what the school promised in theory, but I wasn’t sure what to expect in practice. In its outward appearance, the elongated brick building in Lexington appeared no different from any other school, except for the small group of sweatsuit-clad students jogging around its perimeter.

Upon entering the lobby we were handed a packet of papers, which included information and publicity about the school along with the Open House agenda and a map of the school. We were then ushered into a room off the lobby where a Japanese man and woman were in the midst of a presentation. He was talking, mostly in Japanese, and she was translating what he said into English. The gist of the talk was that Daily Life Therapy enabled students to build physical strength, control their emotions and express hidden potential. He spoke of the positive effect of high expectations coupled with a normal school environment and curriculum.

Next came a tour of the school, during which we observed the special subject classes of physical education, music and art. Our guide, whom I later learned was the head teacher, Mr. Takamatsu, explained the multiple benefits of the school’s physical education program: to develop stamina, coordination, cooperation, concentration and self-control. There were multi-faceted reasons for teaching art and music as well. Aside from relieving tension and allowing the students to express their creativity, these endeavors serve to improve physical dexterity and communicative skills. Blowing into the keyboard harmonica, for instance, helps to develop the lungs, oral muscles and vocal chords, which enhance the ability to vocalize. I was impressed by this information, but I was equally pleased by the fact that the children got to move about from one class to another during their school day.

We proceeded down a staircase where we were let loose in the lower level hallway to visit the individual classrooms on our own. The classes and classrooms were small, but in all other respects quite typical. There were numerous colorful charts and posters hanging on the walls and blackboard, delineating the day’s schedule, chore assignments and subject matter. The energy and enthusiasm of the teachers was palpable. They spoke in loud voices, giving clear and concise instructions. The students were not allowed to slouch at their desks and were expected to raise their hands and wait to be called upon before answering questions. If they were called up to the backboard, they stood and pushed in their chairs. It was all so wonderfully, reassuringly normal!

We regrouped twenty minutes later for an assembly in the gym. All of the students wore white T-shirts tucked into light blue sweatpants, emblazoned with the Higashi logo. What struck me most about them was not how well groomed they were but how well behaved they were-and how happy. As they filed into the gym and lined up for assembly, I observed each and every one of them intently. There were few glum faces or blank stares. There were no disruptive displays and very little self-stimming. The teachers, some Japanese, some American, stood beside their classes modeling and coaxing while unobtrusively attending to the slightest sign of distress. Not all of the students joined in the final singing and those that did sang a bit off key, but all participated to the best of their ability and most seemed pleased to have an audience.

One adorable little boy in the front row smiled and called out “Hi Mommy” as his group began to file out. The woman beside me smiled and waved back. Realizing that we were surrounded by several parents of attending students, Brian and I seized the opportunity to talk to them candidly about the program. We missed the question and answer phase of the Open House, we were so caught up in what these women had to say. Several of them had experienced the highs and lows of the school’s formative years, having enrolled their kids at its inception, yet they couldn’t say enough about the caliber of the teachers, the opportunities offered and the gains made by their children. Their unrehearsed words carried a lot of weight with us, as they had nothing to gain by not being truthful.

Taking into consideration all we’d seen and heard, Brian and I agreed that we’d finally found the “right” school program for our daughter, one that was not only appropriate educationally, well suited to her unique nature and needs, but one that also had the potential for being long term. I felt Meaghan needed consistency in her life as much as she needed structure and stimulation.

The question was, would she be deemed “right” for the school?

On June 5th, Meaghan, Michael and I presented ourselves to the Higashi receptionist for the all important interview. Meg tugged at my hand while we waited briefly and asked to “go to big gym,” which she spotted with delight right off the lobby. She was in high spirits.

Fortunately, Mr. Takamatsu came right out to greet us, explaining that he would take Meggie and spend some time with her while I met with the admissions committee. Meg took his hand and skipped merrily off down the

hall with him, while Michael and I were ushered into a conference room. There were four or five people sitting around the table, including the school’s Principal and Director of Special Education, Robert Fantasia. We’d barely finished with the introductions before Mr. T (the abbreviated name they used around the school) returned with Meg in tow, her shirt neatly tucked into her pants (would we be docked points for untidiness?).

I wondered whether Meggie had done something wrong, but Mr. T’s bright smile quickly reassured me. He took a seat next to Mr. Fantasia, and Meg asked to sit on his lap. He willingly obliged her, and the meeting got underway.

The school nurse conducted most of the interview, as their primary concern was the seizure disorder I had documented on Meaghan’s medical admissions forms. The school didn’t usually accept children with a history of seizures. I hastily explained that Meg hadn’t had any active ones since she was a toddler, just some EEG spike activity and that she’d been fully weaned off her seizure controlling medicine for several weeks without any adverse effect. This seemed to satisfied them.

When the nurse finished, Mr. Fantasia asked me if I had any questions or concerns about the school. I said my only concern was over the lack of contact Meg would have with typical peers should she attend the school. He told me that there would likely be some mainstreaming opportunities for her down the line. I asked a few more questions about division and classroom size, learning that, if accepted, Meaghan would be put in the primary division and that classes typically included six or seven students.

I refrained from further inquiry as the kids were getting antsy, and I didn’t want us to overstay our welcome. Thanking them for their time, I gathered up the items from my bag that Michael had amused himself with and steered my children toward the door.

They told us they’d be in touch.

Three days later the admissions director called to say that Meaghan had not only been accepted, but that they wanted her to start as soon as possible. They were forming a new class and felt she should be a part of it. We hastily arranged a TEAM meeting, and I signed off on the paper work. I gave notice to the Millers, and my seven year old daughter began her third school experience as a Higashi day student on Monday, the 22nd of June, 1992.

Meaghan, age 7.

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What’s Going On?

BODY SENSES AND MOTOR RESPONSES

What role might the brain stem nuclei play in causing or contributing to autism?

If we go by the assumption that autism is caused by sensory impulses not completing the full processing circuit, so that they are not properly integrated into coherent, meaningful perceptions, it stands to reason that the earlier these impulses are interrupted in the processing circuit, the more basic the information that is going to be sacrificed. The most basic information the brain receives is from our skin. Sensations of touch, temperature, texture, pain and pressure are conveyed from skin receptors through the peripheral nerves to the spinal cord and up to the brain stem.

At the brain stem, these sensations feed into the reticular core or formation; a tangled web of nuclei that acts as an arousal center for the nervous system. When stimulated these nuclei wake, calm, alert and excite us. They send messages on to the hypothalamus to regulate heartbeat, breathing and digestion. They also send messages up to the cortex, signaling it to shift our attention from one thing to another. If a person’s reticular processes are not operating smoothly, focusing attention and maintaining control would be very difficult.14

Sensations of touch also feed into another even more complex and critical network of nuclei at the brain stem level. These vestibular nuclei have interconnections with almost every part of our brain and body. They process and coordinate sensations from the gravity and movement receptors in our inner ears with information from all our other sense receptors. This processing determines our basic relationship to gravity and the physical world, and this gravitational security serves as a reference point for our interpretation of all sensory experience.15 A child who feels uncertain about his connection to the earth is likely to feel uncertain and insecure about just about everything else.16

If the vestibular nuclei are not functioning properly, the registration and

integration of all sensory messages would be “off.” The soothing sensations from normal mother-child bonding, from holding, cuddling and snuggling, would be sabotaged before they could wend their way to the limbic system, so that the basic connections that inspire kindness and empathy would never have a chance to develop.

Sensations from the eyes and ears would not be processed into clear-cut perceptual information if that input was not properly integrated with basic body information at the brain stem-vestibular level. A child who is uncertain about what he sees and hears because he is missing some relevant visual, spatial or auditory clue would find it very difficult to attend to either words or deeds in a typical manner.

How might the poor modulation of sensory input impact vestibular function in autism?

If certain inhibitory neurotransmitters are not doing their job of inhibiting and certain excitatory neurotransmitters are not doing their job of facilitating, the vestibular nuclei cannot do their job of integrating and passing along organized, modulated sensory information to all the body and brain systems and structures that need it. Because of too little facilitation, information from the vestibular receptors does not flow smoothly to the spinal cord and muscles, undermining balance and muscle tone and making a child gravitationally insecure, thereby insuring that the operation of all sensory processes will be out of sync with the normal state.17 Because of too little inhibition, rather than being eliminated, the disorganized sensory impulses that pass through the vestibular nuclei are fed into the reticular arousal system and the brain becomes overstimulated.

How might the thalamus contribute to autism?

After leaving the brain stem, sensory impulses move on to another cluster of nuclei within the thalamus. Located in the core of the brain, these nuclei control what and how impulses are transmitted and integrated beyond the brain stem level. They are differentiated and specialized to correspond with and relay information reciprocally to and from the sensory lobes and association areas of the cortex.

This two-way connection network is not a genetic given. In fact, we are born into a state where the sensory areas of the brain are “cross-wired.” As we develop, our growing experience and consciousness separates and straightens out this crucial wiring.18 But if that experience is lagging, the specialized sensory wiring of either the cortex or thalamus might remain skewed, skewing their crucial two-way interconnections and causing problems with input registration.

Or, the specialized nuclei in the thalamus might act on their own to suppress or selectively pass along sensory input and cortical feedback. Thalamic nuclei working in a particularly selective mode would account for the failure of many autistic children to attend to the things that normal children readily notice. If the thalamus is acting in its gatekeeping role to suppress some sensory impulses while exaggerating the importance of others, then not only would autistic attention be limited and selective, but it would likely be odd as well. The brain would have a hard time knowing what information was important and what was not.

How are sensory impulses transformed into motor responses?

Tactile impulses from the hands, fingers and mouth and proprioception from the muscles and joints wend their way from the brain stem, through the thalamus, to the somatosensory cortex in the parietal lobe, where details about the type of touch we feel or movement our muscles make enter our conscious awareness.19

Once we become aware of sensations from our body, we must decide what to do about them. This is the job of the association cortex. The association nuclei send signals to the basal ganglia and to the cerebellum, where precise motor commands are formulated and passed on to the thalamus. The thalamus receives these signals, coordinates them with incoming sensory information and forwards messages up to the motor cortex, where the commands are executed.20

The motor cortex actually consists of two neural strips located atop and down the sides of the brain’s frontal lobes, with different sized patches or sections devoted to specific body parts according to their degree of sensitivity. The left motor cortex controls the muscles on the body’s right side and the right one those on the body’s left side. The hands, feet and mouth have the largest cortical patches, affording us greater precision in the control of these muscles.21

What might go awry in the carrying out of motor responses?

Once a movement is begun it is continuously monitored by the cerebellum, which receives instructions from the motor cortex and proprioceptive feedback from the muscles and joints. The cerebellum compares and assesses this information and sends signals to the motor cortex to modify or fine tune the movement.22 If the nuclei in the cerebellum are not operating to full capacity, information relayed to the motor cortex might be vague or inaccurate.

The movement process might be further complicated if proprioceptive

feedback is weak because muscles and joints are not receiving a healthy flow of input from the vestibular nuclei to keep them toned. Also, if tactile sensations from the mouth and hands fail to register in the somatosensory cortex as intact, clearly defined perceptions, the result would be a diminished sense of oral awareness and tactile discrimination, which would make the planning and carrying out of the movements involved in speech and fine motor tasks difficult.

The bottom line, if the sensations in a child’s brain aren’t feeding him back good, precise information about his body, he will have a poorly developed sense of self overall.

How does stimulating the body help to develop and organize the brain?

Every time the cerebellum actively plans and sends out a motor command, the tactile, vestibular and proprioceptive input that feeds back into the brain as a result of this intentional movement adds information to the ‘strip’ map of the motor cortex. The more information fed into each patch, the more detailed and accurate this motor map or body percept will become. And, the more accurate and detailed a person’s body percept, the better he will be at learning and carrying out other intentional movements.

Stimulating a body physically, either through exercise or sensory integrative therapy, forms and stimulates synapses. When synapses are stimulated, used repeatedly for sensori-motor functions, neural memories of those functions are created.23 Neural memories are the basis for all learning, both mental and physical. On the physical side of the equation, neural memories translate into motor skills; actions that no longer require planning or conscious attention.24 A child with many motor skills is able to do many things without thinking about them, while one with fewer motor skills has to think a lot about everything he does and consequently doesn’t find doing many things enjoyable.

Why do autistic children often have so little motivation or interest in doing new things?

One explanation is that many autistic children have a paucity of motor skills causing them to have a difficult time figuring out how to do things, and because of this they have little desire to try anything new or different. But the problem probably originates in the association cortex; the primary response planning region of the brain.

In the autistic brain, sensory impulses flow unimpeded until they reach the nuclear networks in the brain stem where, if either network is malfunctioning but particularly the vestibular one, they begin to unravel, to

scatter or fragment. Those impulses that do make it on to the thalamus are filtered further through selective registration or through skewed interconnections to the cerebral cortex. The result is that fewer intact sensations actually make it all the way to the final association phase where a decision can be made to act upon them.

Because their developing brains are only fully registering and integrating a selected portion of the sensations that pass through them, autistic children are not fully capable of making a well considered decision to do or not to do something. The shortcircuiting of cerebral neural impulses not only results in a lack of inner drive, it also causes an inability to think things through; to consider all factors of a decision before taking action. Hence their predisposition to impulsivity.

Even if the association cortex in an autistic brain does make a decision to do something, plans an action or response, there is a good chance that the message it sends on to the cerebellum and the cerebellum sends on to the motor cortex will be obfuscated by being routed through skewed thalamic synapses. And, if a motor command is initiated at the cortical level, the message still has to pass through the brain stem en route to the spinal cord and muscles, so there is further likelihood that it could get fouled up. In short, autistic children lack an inner drive because they lack an intact, fully functioning sensory processing system.

How does their restrictive thought pattern affect the play style of autistic children?

Because they cannot register the meaning or potential use of toys, young children with autism have little incentive to explore or play with them. They generally find activities that challenge them to experience new sensations and develop new skills confusing and off-putting. They would rather be left alone to do nothing in particular or to stick to the familiar, repetitive actions and routines that they know can’t hurt them and won’t overwhelm them.

The trouble is that the limited “play” strategies they come up with -- strategies that include holding, gazing at, twirling, mouthing or lining up toys -- do hurt them because they do not challenge them to learn anything. By not trying to figure out more sophisticated or purposeful ways to manipulate their toys autistic children set themselves further behind developmentally by failing to process the necessary sensations and develop the neural connections that would help to better organize their brains.25

What is the critical Catch-22 situation in which young people with autism find themselves?

Because the synapses in the brains of autistic children are not working efficiently or effectively, fewer intact perceptions reach the association or planning processing areas, causing them to have less motivation or inner drive. Consequently, they plan and carry out less intentional actions, resulting in the formation of fewer neural memories and motor skills. This further impedes the growth of the crucial neural interconnections that would help to develop and organize their brains so that they could properly process sensations into the perceptions or adaptive responses that would make learning -- planning and carrying out actions or thinking meaningful thoughts -- easier for them.

What’s Going On?

DISTAL SENSES AND LATERALIZATION

How does the brain make sense of what we see?

When we look at something light stimulates the receptors in the eyeball to transmit visual impulses along the optic nerve to the brain stem nuclei. These nuclei process the impulses by integrating them with vestibular, tactile and proprioceptive input, forming our basic awareness of everything around us.88

From the brain stem, visual signals travel through the thalamus to the occipital lobes of the cortex where they are decoded and sorted into different aspects of vision: line, shape, color, movement and distance or depth.89 From here signals are communicated back and forth to other cortical lobes through long association tracts. This interactive exchange, primarily between areas of the occipital (visual) and temporal (language) lobes, allows the brain to incorporate more precise visual details into the picture, giving meaning to what we see.

How much of an impact does the vestibular system have on our vision and hearing?

There is definitely something different about the way a child with autism views the world. Information from the eyes and/or ears is not interpreted by the autistic brain in a conventional manner. Autistic children who do not have an underlying vestibular dysfunction, or whose dysfunction is on the mild to moderate side, tend to have an easier time learning to do and doing most things. Certainly they have and easier time looking and listening, because the vestibular sense is an integral part of our vision and hearing.

The inner ear contains both auditory and vestibular receptors. One type of vestibular receptor, tiny crystals attached to neuron fibers, responds to the force of gravity. The second type, small fluid-filled tubes or canals arranged at varying angles, respond to movement. The combined input from these

vestibular receptors, in conjunction with proprioceptive information, tells us where we are in space, whether we are moving or still, how fast we are going and in what direction.”90 This knowledge affords us a physical reference point for all that we see and hear.

Our vestibular sense serves to link our body senses to our distal senses. Our visual and auditory perception -- the meaning we assign to what we see and hear--can only be accurate and complete if every sensory processing system from the brain stem on up and every single synapse along the way is working smoothly. The bottom line is that in the brain, “almost everything influences almost everything else.”91 Our body senses give meaning to auditory and visual information, our vision helps us to make sense of what we hear, and our hearing helps give meaning to what we see. If any single sense is weak, but particularly our vestibular sense, that sense will negatively impact all our other senses.

What might account for the difficulty many autistic people have in sustaining eye gaze or visual attention?

If input from the eyes is not being properly integrated with input from the inner ears--or if the brain’s interpretation of that input is “off” -- making sense out of visual information would be a pretty confusing business. A person with vestibular processing problems might see an object moving in his line of vision, but without clear vestibular information he might not be certain whether the object, his head or his whole body was doing the moving.92

Also, if the vestibular nuclei are not responding efficiently to inner ear feedback and adjusting the eyes and neck to compensate for head and body movements, looking might well be off-putting. A person’s visual field might appear to vacillate rather than remaining steady and stable.

The difficulty many autistic children have in sustaining eye gaze might also be attributable to poor proprioception from the eyeball muscles. But the primary culprit is probably poor connections. If the nuclei in the occipital lobe responsible for directing the eyes to look are not in good communication with the brain stem nuclei, they cannot do their job effectively.

What might account for the difficulty many autistic people have in integrating distal information, and how might this contribute to their language impairment?

Donna Williams, a woman now coping successfully with autism, has spoken of her difficulties in processing more than one type of distal sensory input at a time. As a child she could listen or look, she said, but she couldn’t do both

at the same time. This was probably because the sensations from her body and from gravity were not well enough organized to allow for the smooth integration of so much stimuli, all of which required the most sophisticated and comprehensive neurological processing. Indeed, exposure to too much auditory and visual information might well confuse or over-stimulate the mind of someone whose basic sensory systems are not functioning properly, causing her to use or at least favor one distal sense and tune out or tune down the other.

The inability to process auditory and visual information smoothly and simultaneously might also explain the difficulty many autistics have in putting thoughts into words. In their book, From Ritual to Repertoire, Arnold and Eileen Miller write:

“Distal systems permit children to rapidly and easily use their sound making buttressed by ocular-motor input... to act upon and thus relate to a broad range of stimulating objects and events. A natural consequence of this capacity is the enhanced polarity between the child’s sense of his or her own body and the external world... Without distal systems, autistic children are confined to a reality based only on what they experience directly with their body or on what is within arm’s reach. In this reality, objects and people tend to exist upon entering their proximal space and disappear upon leaving it.”93

Because their processing of distal information is incomplete, many autistic children might simply fail to grasp that the words they utter “can be directed toward and represent objects and events both near and far.”94 This failure to appreciate that words can be used to relay more than mundane and instrumental requests and observations might well factor into the inability of many autistic people to use language in a less literal and functional, more conventional manner.

Why do people with autism often favor their visual sense and is this over-reliance one sense healthy?

Because information among and between the cortical lobes is not being communicated efficiently or effectively in the autistic brain, one sense sometimes winds up predominating all perceptions. In autism, this stronger and clearer processing channel is often the visual one. One explanation for this might be that the neural tracks leading to the occipital lobe are better established in most autistic brains than the tracks leading to other lobes. In fact, many children with autism who are unable to talk are remarkably proficient at computer or video games. Like Tommy, the pinball wizard from the rock opera, their visual concentration is intense because they contrive to ‘tune out’ their weaker, more distorted or distracting auditory sense.

However, this over-reliance on one sense over another may be detrimentally impacting the already compromised processing systems of many autistic individuals. Only by using their eyes and ears together and striving to derive meaning from the whole of sensory experience will all the circuitry in their brains be engaged, all the synapses exercised, the neural connection machinery stimulated and challenged to function in as normal a manner as possible.

What is specialization or lateralization?

For clarity sake I have written of the cortex and cortical lobes singly, but in fact, the cortex and cerebrum are divided into two hemispheres. Most sensory and motor messages cross over in the brain stem, so that the left hemisphere ends up controlling the right side of the body, and the right hemisphere handles the processing for the left side of the body.

As the processing capabilities of the brain increase and academic abilities begin to manifest themselves, each hemisphere also becomes specialized by function, meaning that some inputs are processed better on the right side, while others are handled better on the left. In most right-handed people, the ability to use and understand language, to perform fine motor skills and engage in logical thinking is located in the left hemisphere, while the right hemisphere is more involved in emotion and insightful thinking and in processing complex visual and spatial input.95

How might the left hemisphere contribute to the language problems characteristic of autism?

On the face of things, if one were looking to track down specific cortical involvement in the pathology of autism, the most logical place to begin looking would be in the left hemisphere because of its tie-in to language. In fact, one might be inclined to zero in on three specific areas: Broca’s area, in the left frontal lobe, which deals with grammar and articulation; Wernicke's area, in the left temporal lobe, which covers sense and understanding; and the angular gyrus in the parietal lobe, which turns images into words.96

Damage to any or all of these crucial language regions could produce symptoms akin to the communication deficits of autism. Impairment to Broca’s region would leave a person able to understand words but unable to speak them with any fluency, while impairment in Wernicke’s area would produce speech that is fluent but virtually meaningless.97 Damage to the angular gyrus might result in problems with word retrieval.

But, tempting as it is to simply blame the communication impairment in

autism on problems with or faulty connections to one or more of these specialized speech areas, if one looks more closely at the precise characteristics of autistic language development and use, it becomes clear that the pattern doesn’t really fit. This is not to say that the left side of the autistic brain is entirely blameless or that it is functioning smoothly. If this were the case then, at the very least, every autistic child would be able to speak.

In her writing on “Hemispheric Specialization,” Elizabeth Murray states that while “the right hemisphere is dependent on connecting fibers for both the learning and maintaining of skills... the left hemisphere is only dependent on connecting fibers for learning skills.”98 This explains why most children have a relatively easy time learning to talk after they have mastered their first word or two. Because neural interconnections to the left hemispheres of their brains have done their work efficiently since infancy, the basic language skill processing machinery is set in place early on so that the process of acquiring words and combining them into sentences becomes almost instinctive.

The problem with autistic brains may be that the language skill is not learned and localized early on. Inefficient synapses and circuitry cause a critical delay in the formation of the language processing machinery, so that using and understanding speech remains dependent upon the complicated and complete transmission of multiple inputs.

How might the right hemisphere contribute to the communication and social deficits of autism?

Although the lobes of each hemisphere do specialize, there is a constant flow of information between them so that neither hemisphere truly operates alone.99 For instance, while the left hemisphere is generally responsible for processing and producing language, the right hemisphere also plays a crucial role in processing the auditory input that contributes to speech. It handles the non-verbal aspects of communication, such as gestures and voice intonation and enables us to generate new ideas, to draw inferences and to organize and synthesize information.100 So, while a person with a right hemispheric dysfunction might still be able to talk, their speech would tend to have a flat, monotonous quality, and there would likely be little depth or organization to its content along with a heavy reliance on jargon or cliches. Such a person would rarely use gestures and would often miss inferences or the “hidden meanings” in what was said to him.101

Furthermore, because of their difficulty in drawing inferences and synthesizing information, individuals with processing problems in their right hemisphere would not fare well in novel social situations. It would be difficult for them to “read” the situation and come up with an appropriate

“game plan.”102 Such individuals would also have problems with attention; they would tend to focus on details rather than grasping the main idea. They might be able to decode or read words, because reading is primarily a function of the left hemisphere, but they would have a difficult time comprehending or getting the gist of what they read.

All of the above deficits are characteristic of autism, so clearly the right hemisphere is just as involved in the pathology of autism as the left, if not more so. More likely, as I have suggested, the fault lies in the connections between the two. If and when the left hemisphere language processing machinery forms in the autistic brain, it forms in an atypical manner, a manner indicative of some malfunction in the right hemisphere. This explains the autistic propensity to interpret language as a gestalt, since the right hemisphere processes information in a simultaneous holistic or gestalt manner, while the left uses a sequential processing style.103 Perhaps because the right hemisphere is more intermodal, more dependent on a steady influx of integrated sensory input and feedback than the left, whatever connection deficits there are in the autistic brain affect the functioning of this side more severely, and this side negatively impacts the other.

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What’s Going On?

BRAIN-BODY BIOCHEMICAL LINK

What biochemicals are involved in the digestion and metabolism of the food we eat?

Carbohydrates, proteins and fats pass through the digestive tract from the mouth to the stomach and liver and onto the intestines. At each point along the way, these nutrients are acted upon by enzymes and hormones, protein chemicals that catalyze metabolic reactions.

Salivary amylase or ptyalin begins the digestion of starches and sugars in the mouth. Gastric juice, containing hydrochloric acid and the enzyme pepsin, starts to work on degrading proteins in the stomach. The acidic stomach contents then pass into the small intestine, where they are neutralized by bicarbonate secreted by the pancreas.

Pancreatic amylase continues the business of breaking down carbohydrate bonds and the process is completed by enzymes secreted through intestinal mucosal cell membranes. These cells in the lining of the small intestine also produce several small peptide hormones in response to the presence of fats (lipids) and partially digested proteins (polypeptides). One hormone, pancreozymin, acts on the gallbladder, causing it to release bile, and on the exocrine cells of the pancreas, causing them to release lipases and peptidases. Another intestinal hormone, secretin, causes the stomach to produce pepsin and the liver to produce bile. More significantly, it causes the pancreas to release bicarbonate solution that helps to neutralize the pH of the chyme emerging from the stomach so that pancreatic enzymes can do their job.

If all goes well, proteins are broken down into polypeptides and then into amino acids. Fats are hydrolyzed into glycerol and fatty acids, and carbohydrates are reduced from polysaccharides to monosaccharides (glucose, fructose and galactose). These metabolized nutrients pass through the portal vein in the liver before entering the circulation. The liver absorbs

what it needs to synthesize glycogen, proteins and other nitrogen-based molecules and routes the rest to other tissues and organs, where substrates are further degraded and finally oxidized into energy in the form of ATP (adenosine triphosphate) and other byproducts including CO2, ammonia and water.

Why is the proper metabolism of protein so important?

Most of the amino acids released by the hydrolysis of dietary protein are used for the biosynthesis of tissue protein that is constantly being degraded. This process of protein synthesis and degradation is called protein turnover.55 If the amount of amino acids in the body’s amino acid pool is only adequate to meet the needs of protein turnover, due to insufficient dietary protein intake or incomplete metabolism, this shortage could result in a deficiency of nitrogen containing precursors necessary to form neurotransmitters, hormones and enzymes. An insufficiency of these chemical regulators or an abnormality in their formation would have serious consequences on the body’s and brain’s ability to function.

How do the brain and body communicate?

Located in the heart of the limbic system, the hypothalamus is in overall charge of regulating the body’s internal processes, including temperature, blood pressure and metabolism.56 The fuel needs of brain cells are communicated to the rest of the body by chemical signaling carried out by blood-borne hormones or by neurotransmitters released by the hypothalamus and pituitary gland.

Pituitary hormones act on other glands, including the thyroid, adrenals and sex glands, instructing them to release hormones. The level of hormones that feed back to the pituitary via the circulatory system signal the gland to either increase or shut off production of specific hormones. Neurotransmitters from the brain meet up with hormones from the body in the nerve fibers and portal blood vessels of the pituitary, enabling it to relay vital regulatory information up its stalk to the hypothalamus.57

One of the most important factors regulated by the pituitary gland and hypothalamus is the supply of glucose.

How is glucose formed and what function does it serve in the brain?

Glucose, which is catabolized into energy (in the form of ATP) is the primary fuel source for all body cells, including neural cells. Blood glucose is obtained from three primary sources: dietary carbohydrates, the degradation of liver glycogen and gluconeogenesis. In the absence of

adequate dietary carbohydrates, or in the event that dietary carbohydrates are not properly digested and absorbed into the blood stream, glycogen stored in the liver and in muscle tissue can be converted into glucose. Glucose can also be synthesized from amino acids by a process called gluconeogenesis.

The glucose energy derivative ATP is used to fuel the brain’s electrochemical processes; to fire and receive nerve messages and synthesize and degrade neurotransmitters.58 If messages (in the form of neurotransmitter molecules) are not properly and smoothly relayed, information cannot travel to all the brain structures that need it to form the “big picture” of conscious experience.

Whether neurotransmitters bind with receptors or not, they have to be cleared away or broken down to prevent them from interfering with messages conveyed by subsequent releases of neurotransmitters.59 If neurotransmitters are not efficiently broken down or cleared away (due to a sluggish glucose energy supply) than receptor systems cannot be ready to receive and respond to new waves of impulses. This might account for many of the repetitive and perseverative behaviors of autism.

Which neurotransmitters might be implicated in the breakdown of information processing resulting in autism?

The brain chemical most commonly linked to autism is serotonin, although the largest amount of serotonin is actually found in cells of the intestinal mucosa.60 Outside the nervous system, serotonin functions to influence pain perception and to help regulate sleep, temperature and blood pressure. Studies have documented a significant elevation of blood serotonin in many autistic children, an abnormality attributable to an alteration in the uptake or storage of serotonin by blood platelets.61 In the brain this neurotransmitter is generally excitatory, meaning its release makes neurons more likely to “fire”. Serotonin releasing neurons have axons distributed throughout the brain from the cerebellum to the cerebral cortex.62 An excess of serotonin could account for the lack of modulation of sensory input, leading to overstimulation and anxiety.

The neurotransmitter Dopamine is also involved in modulating arousal level. The inability of schizophrenics to filter out incoming sensations is thought to be attributable to raised levels of dopamine in the brain or to the increased sensitivity of dopamine neural receptors which induce a high state of arousal.63 Autistic brains may be equally susceptible to over-stimulation due to the exaggerated effects of dopamine.

Uta Frith postulates that the problem could be attributable to dopamine cells

not dying back as they should in normal development. The result would be an increased number of dopamine neurons and therefore an overactive system.64 As the major dopamine pathways or projections originate in tiny structures at the tip of the brain stem and spread out to almost every cortical lobe, the impact of this chemical on neurological processing could well be significant.

Two other neurotransmitters that may be implicated in autism are actually dopamine derivatives in the same catecholamine family. Unlike their precursor, norepinephrine and epinephrine have important physiologic functions outside the nervous system as well. They act as regulators of carbohydrate and lipid metabolism, increasing the degradation of triacyglycerol and glycogen to glucose as well as increasing heart beat and blood pressure in response to fright, exercise, cold and low levels of blood glucose.65 If there was a shortage of these “fight or flight” molecules in the blood (due to a problem with the catabolism of amino acids or dopamine) the breakdown of carbohydrates to glucose would be slowed, as would the body’s reaction to emergency situations.

In the brain, nerve cells that release norepinephrine are clustered in the brain stem with their axons projecting to many brain regions.66 As a neurotransmitter, norepinephrine is both excitatory and inhibitory and is involved in arousal level as well as in autonomic control of body functions. Norepinephrine as well as dopamine and serotonin have their effect on receptor cells through a time and energy consuming ‘second messenger’ system, so it is likely that any irregularity in the supply of glucose delivered to the brain would have a significant negative impact on the ability of these neurotransmitters to function smoothly.

Another brain chemical that might contribute to autism is GABA or gamma-aminbutyric acid. As this neurotransmitter is inhibitory, a deficiency of GABA in autistic children would help explain the poor inhibition that allows their brains to become overaroused and causes them anxiety.

Glutamate may also play a role in autism. Formed from glycogenic amino acids, this chemical acts as an excitatory neurotransmitter in the brain, activating some receptors in the hippocampus.67 If there is a problem with the formation of glycogenic amino acids, not only would there be a deficiency of glucose production, but there would be a deficiency of glutamate to activate receptors in the limbic system that influence emotion, learning, memory and motivation.68 Receptors in the amygdala, located directly atop the hippocampus, might also be affected, throwing off the coordination of autonomic and endocrine responses with emotional states.

How do drugs work to control neurotransmitter function?

All mind-affecting drugs have their action at the synaptic gap. They work by modifying the way neurons communicate across this gap. Some drugs alter the amount of neurotramsmitters released or the rate of release. Others have their effect by either blocking or increasing the availability of receptor sites. Others work by reducing the action of enzymes that break down neurotransmitters, rendering them inactive.69

The catecholamines (dopamine, norepinephrine and epinephrine) and serotonin are inactivated by oxidative deamination, catalyzed by the enzyme monoamine oxidase (MAO). MAO inhibitor drugs (antidepressants) serve to inactivate this enzyme, permitting neurotransmitter molecules to escape degradation and to activate dormant receptor systems. Some neurotransmitters are reabsorbed into axons from fluid surrounding the nerve cells for reuse (endocytosis). Drugs like fluoxetine or sertraline work by blocking the re-uptake or recycling of serotonin or norepinephrine, thereby reducing their excitatory effect on the brain.

How effective are drugs in remediating autism?

Just as in the typical population, various drugs have varying effects on individuals with autism. If we go by the assumption that autism has a biochemical basis, pharmacological intervention is certainly warranted and is often effective in alleviating the symptoms of excessive anxiety or obsessive-compulsive tendencies. Mega-doses of vitamins and minerals and other natural remedies found in health food stores are also helpful in many cases. I believe that any remedy that might help a person with autism to cope or function better is worth pursuing.

In my daughter’s case, the estrogen and progesterone in the birth control pills she takes have had a pronounced effect on her mood and behavior. Actually, progesterone is the precursor to all other steroid hormones, including estrogen, testosterone and adreno-corticotropic hormone or ACTH. The production and secretion of ACTH is activated by the hypothalamus when the body is stressed. This hormone stimulates the adrenal cortex to synthesize cortisol, which in turn acts to promote gluconeogenesis in the liver and to stimulate the breakdown of proteins to amino acids in the muscles. So, the ingestion of progesterone might not only cause an increase in ACTH, making a person better equipped to handle stress, but the increase in cortisol would activate glucose and amino acid synthesis, helping the brain and body to function better.

What’s Going On?

GASTROINTESTINAL - SECRETIN LINK

What happens if there is an enzyme or hormone deficiency?

The deficiency of a single enzyme or hormone can wreak serious metabolic havoc, because even a partial deficiency in catalytic activity can cause a harmful accumulation of metabolites. Beyond this, enzymatic reactions do not occur in isolation. Rather, they are part of multi-step sequences (pathways) in which the product of one reaction serves as the substrate of a subsequent reaction, and reactions build upon each other.70 If a single enzyme or hormone is missing or deficient, whole sequences of chemical reactions can go awry or fail to take place altogether.

How might a specific hormone, such as secretin, become deficient or defective?

Secretin is a polypeptide, meaning that it is comprised of several amino acids linked together in a specific linear sequence by peptide bonds. If there is a problem with secretin function, it could be that the structure of this hormone (the sequence of amino acids) has somehow been altered or denatured, resulting in reduced efficiency. Or, a shortage of a specific amino acid needed to synthesize secretin could result in a shortage of secretin.

What might be the secretin connection to glucose supply and energy metabolism?

If pancreatic enzymatic activity is short-circuited due to insufficient secretin secretion, carbohydrates might not be fully degraded into monosaccharides. And since only monosaccharides (glucose, fructose and galactose) can be absorbed into the mucosal cells of the intestine, this might result in insufficient

glucose entering the bloodstream. Also, if amino acids are not being properly broken down and absorbed, due to a reduced release of bicarbonate, the glucose forming process of gluconeogenesis could not take place. This would mean that the bulk of glucose supplying cellular and brain function would have to come from liver and muscle stores of glycogen.

But there is a problem here too. The release of secretin helps to stimulate the production and release of another very important pancreatic hormone--insulin. This hormone acts to decrease the production of glucose in the liver by inhibiting gluconeogenesis and the breakdown of stored glycogen.71 The less secretin, the less insulin, the more glucose the liver produces. The problem is that a lack of secretin also causes the incomplete digestion of proteins and carbohydrates resulting in the poor absorption of amino acids and glucose into the bloodstream. And low levels of plasma amino acids and glucose serve to stimulate the production of insulin, countering or balancing out the glucose producing effects of another pancreatic hormone, glucagon.72

All this is to say that in cases where secretin isn’t working effectively, neither are the hormones responsible for regulating and coordinating energy metabolism.

How does energy metabolism affect brain function and how might an uneven supply of glucose contribute to autism?

Unlike the liver and muscles, the brain contains no stores of glycogen, so it is completely dependent upon a steady and healthy supply of blood glucose (eight to ten times more than needed by any other organ).73 This being the case, any shortage of glucose would affect the brain more severely than other organs because it has such a high rate of metabolism. If the brain is not getting enough energy, or if that energy is delivered in spurts rather than in a smooth flow, mental function and information processing would invariably be affected.

The sluggish or uneven delivery of glucose to the brain could account for mood alternations between hyperactivity or heedless impulsivity and the spaciness or dream-like state characteristic of individuals with autism. In this respect, autism could be akin to hypoglycemia, “a state that occurs between consciousness and unconsciousness, in which sufferers commonly report aggressive feelings and loss of self-control, free will and the ability to follow any sort of reasoning-symptoms not unlike those of schizophrenia.”74 In his book, The Biological Causes of Autism,

Dr. William Shaw cites several instances of hypoglycemia, which he attributes to the overgrowth of yeast byproducts causing pancreatic damage, which in turn results in the deficient production of digestive enzymes.75

In cases where there is no damage to the pancreas, poor enzyme function is most likely the result of the high acidity of intestinal contents that have not been properly neutralized by bicarbonate. If the pancreatic enzymes (peptidases) are not doing their job, proteins and carbohydrates cannot be properly broken down to form glucose and amino acids and this, along with an increase in insulin (due to low blood levels of these glucose precursors) could result in impaired delivery of glucose to the brain causing hypoglycemic symptoms and neuro-chemical impairment. The lack of sufficient amino acids could also result in the formation of fewer hormones or neurotransmitters, and this shortage of metabolic and neural regulators could critically impact both the delivery of glucose to fuel brain processes and the relaying of information within the brain.

Ordinarily the hypothalamus responds to a sharp or sudden decline in the amount of glucose reaching the brain by releasing the neurotransmitter epinephrine or by instructing the pituitary gland to release glucagon and the cortisol hormones that counter the hypoglycemic state.76 But, if the problem is a fluctuating or gradual glucose decline, the resultant anxiety might fail to trigger this epinephrine or endocrine response.

How does secretin tie into neurotransmitters?

Secretin may influence the synthesis of key neurotransmitters through the activation of the enzymes tyrosine hydroxylase and tryptophan hydroxylase. The catecholamines--dopamine, norepinephrine and epinephrine are made from tyrosine. Tyrosine is first hydroxylated (through the action of tyrosine hydroxylase) to form dopa, which is then broken down to form dopamine. Dopamine is further hydroxylated to yield norepinephrine, and epinephrine is formed from norepinephrine.77

Serotonin is hydroxylated from tryptophan in a similar fashion. These reactions could not take place efficiently if secretin and other polypeptide hormones failed to activate the intermediate steps. In fact, there was a significant increase in blood serotonin after secretin injection in several autistic children, validating the connection.78 If secretin does have a circulatory effect on the

brain as well as the gut, it may well be due to its role in the synthesis and activation of these key neurotransmitters.

To sum up, what are some of the ways in which secretin might affect the central nervous system?

First of all, if it is working properly, secretin facilitates the complete digestion of proteins, lipids and carbohydrates, which results in the formation of glucose and amino and fatty acids. The glucose and amino acids are then broken down to form ATP, a high energy molecule that fuels the processes of most cells, including neural cells. The hyperactivity reaction (as well as the increased awareness) many autistic children have shown for a short while after the infusion of secretin might well be explained by a sudden surge in glucose supply and neural energy.

Second, by facilitating the release and efficacy of pepsin in the stomach and peptidase in the pancreas and intestines, secretin insures that polypeptides will be completely decomposed into amino acids that can then be used as substrates for the formation of chemical messengers, such as hormones and neurotransmitters. Actually, by activating the breakdown of tyrosine to dopa and the hydroxylation of tryptophan, secretin plays a direct role in the biosynthesis of the neurotransmitters most frequently linked to autism--dopamine, norepinephrine and serotonin.

Third, secretin may act indirectly to increase blood flow and message transmission in areas of the brain containing secretin receptors (hippocampus, hypothalamus and cortex) or by the activation of serotonin and norepinephrine.

Finally, by helping to stimulate and regulate pancreatic enzyme secretion and bile production secretin acts to normalize gastrointestinal function insuring that food particles are completely and properly digested before being passed into the bloodstream, thereby eliminating peptides or other compounds that might have a toxic or opiate effect on the central nervous system.

How might a lack of secretin cause or contribute to gastrointestinal problems?

If the digestion and absorption of dietary carbohydrates, fats or proteins is incomplete, due to a deficiency of secretin induced

enzyme or bicarbonate function, undigested food particles will pass into the large intestine. If these particles are osmotically active, they will draw water from the mucosa cells as they make their way to the bowel, resulting in loose stools or chronic diarrhea. If they are not osmotically active, or if fermentation of sugars to yeast and bacterial overgrowth has interfered with intestinal function, constipation may result.

Secretin deficiency might also contribute to lactose intolerance, as lactate is obtained from the metabolism of glycogenic amino acids. A hold up in this metabolism due to enzymatic dysfunction would result in a shortage of cellular lactate, causing problems with the digestion of lactose.

What about infections and allergies?

Many children with autism have abnormalities with their immune system and are highly susceptible to colds and infections. My daughter certainly got more than her fair share of colds and fevers during her childhood, and she suffered from strep throat at least three times a year from the age of three until she turned nine or ten.

One explanation for this susceptibility might be that a large part of the immune system is located in or near the intestinal tract.79 If the enzymes and hormones in this tract are not functioning up to par to keep abnormal microbials from entering the bloodstream, germs might well be among those poorly filtered particles. Also, the immune system works through the action of B-cells (that produce antibodies) and T-cells (that kill tissue virus).80 These cells and cell products are protein-based, composed of a particular combination of amino acids. If any of these amino acids happens to be in short supply, due to a problem with the breakdown of proteins, this could account for an insufficiency of immune cells.

A problem in the breakdown of nitrogen-based amino acids might account for a shortage of histamines as well, the chemical messengers that regulate cellular response to allergens and inflammation. If fewer histamines are produced, allergic reactions would be more pronounced, as they often are in autism. Histamines also play a role in gastric acid secretion and neurotransmission in parts of the brain,81 which might help to explain the abnormal behaviors that often accompany these reactions.

What are some alternative biological factors that might cause or contribute to autism?

It is Dr. William Shaw’s contention that, because of some inborn impairment to their immune system, young autistic children suffer recurrent infections, primarily ear infections. These infections are treated with antibiotics, which eliminate the normal bacteria of the gastrointestinal tract resulting in a proliferation of yeast. This yeast produces abnormal sugars and enzymes, which interfere with carbohydrate and protein metabolism, particularly the metabolism of wheat and milk proteins.

The major proteins in wheat and milk are gluten and casein respectively. These proteins are supposed to be broken down in stages to peptides and then to amino acids, which are then absorbed through the intestinal lining into the bloodstream. But, because of a deficiency in the activity of pancreatic enzymes (due to yeast induced pancreatic atrophy) incompletely digested gluten and casein peptides are absorbed into the bloodstream. These abnormal protein byproducts pass into the brain and react with opiate receptors in the temporal lobe causing a “morphine-like effect” and interfering with speech and auditory integration.82

I’m not sure what role the accumulation of abnormal (possibly toxic) metabolites plays in autism, whether or not these molecules can even make it through the tightly packed endothelial cells that constitute the “blood-brain” barrier.83 If they can get through, they may well have a detrimental effect on the function of key brain structures. But I suspect that the core problem with autism has more to do with the way crucial biochemical catalysts (glucose and certain hormones and neurotransmitters) reach and react in the brain than with the actions of extraneous ones.

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What’s Going On?

NEUROPEPTIDES AND SUPPLEMENTS

What biochemical factors might cause a problem with the synthesis of neurotransmitters and hormones in autism?

A deficiency of the intestinal enzyme DPP-IV (dipeptydal peptidase), which acts to catalyze the breakdown of proteins into amino acids, has been hypothesized as a contributing factor to autism. If proteins aren’t being degraded into the amino acid substrates necessary to form hormones and neurotransmitters, the resultant metabolic havoc would be severe indeed, compromising both brain and body function. The proliferation of yeast or toxins in the intestinal tract, yeast induced pancreatic atrophy, and/or problems with the synthesis or activation of the hormone secretin, could also cause a problem with protein catabolism resulting in a deficit of critical polypeptide biochemical catalysts.

These gastrointestinal problems would also cause problems with the synthesis and degradation of the glucose necessary to fuel the electro-chemical processes in the brain. A deficiency or uneven supply of glucose would result in a deficiency or uneven supply of the glucose energy derivative ATP (adenosine triphosphate), which is required for the synthesis, degradation and “firing” of neurotransmitter molecules. ATP is converted to cystic AMP (cAMP), an important messenger system and reaction substrate in the brain and body. An inadequate supply of ATP would result in an inadequate supply of the cAMP required for the phosphorylation of tryptophan hydroxylase into serotonin.

In addition to forming ATP, the breakdown of glucose through glycolysis forms the substrates NAD (nicotinamide dinucleotide) and NADH. The phosphorylated forms of these chemicals, NADP and NADHP are precursors to the coenzymes dihydrobiopterin (BH2) and tetrahydrobiopterin (BH4), necessary for the activation of the enzymes tryptophan hydroxylase and tyrosine hydroxylase, precursors to the neurotransmitters dopamine and serotonin, respectively. As dopamine is catabolized to form norepinephrine

and epinephrine, any problem with NAD production would affect the synthesis of all four of these neurochemicals that have been closely linked to autism.

NADHP is also necessary for the formation of progesterone, which is the precursor to all the other steroid hormones, including estrogen, testosterone and adreno-corticotropic hormone or ACTH.

How might certain neurotransmitters cause or contribute to autism?

The brain chemical most commonly linked to autism is serotonin, which is formed from the hydroxylation of the amino acid tryptophan. Serotonin is an excitatory neurotransmitter, meaning its release makes neurons more likely to fire, so an excess of this chemical could account for a lack of modulation of sensory input, leading to overstimulation and anxiety. Some studies have documented a significant elevation of blood serotonin in many autistic children, an abnormality that has been attributed to an alteration in the uptake or storage of serotonin by blood platelets.154 Other studies show, however, that the surge in serotonin levels that normally takes place in a child’s formative years is significantly diminished in children with autism.155

It seems more likely to me that autistic processing problems are caused by a deficit or uneven supply of serotonin. This would slow or impede the impulse or message transmission of serotonin releasing neurons, which have axons distributed throughout the brain from the cerebellum to the cerebral cortex.156 The anterior cingulate gyrus in the limbic system, an area rich in 5-HT (hydroxy tryptophan) receptors, is involved in higher cognitive functions, the expression and recognition of facial emotions, vocalized emotional responses, mother-infant interactions, pain response and the ability to initiate goal directed, context dependent behavior.157 If the 5-HT receptors in this area are not being properly activated these functions would be impaired, as they are in autism. There is also a correlation between repetitive and compulsive behaviors and the level of metabolic activity in the anterior cingulate gyrus.158

The largest amount of serotonin, however, is found not in the brain but in cells of the intestinal mucosa.159 If the functions of these cells have been undermined, due to the proliferation of yeast, bacterial or viral infection, and/or the presence of toxic or opioid microbials, the ability of serotonin to regulate sleep, pain perception, temperature and blood pressure might be compromised, which could account for the sleep problems and elevated pain thresholds experienced by many people with autism.

The excitatory neurotransmitter dopamine is formed from the hydroxylation of the amino acid tyrosine. The inability of schizophrenics to

filter out incoming sensations is thought to be attributable to raised levels of dopamine in the brain, or to the increased sensitivity of dopamine neural receptors which induce a high state of arousal.160 Autistic brains may be equally susceptible to overstimulation due to the exaggerated effects of dopamine. Uta Frith postulates that the problem could be attributable to dopamine cells not dying back as they should in normal development. The result would be an increased number of dopamine neurons and therefore an overactive system.161

As the major dopamine pathways or projections in the brain originate in tiny structures at the tip of the brain stem and spread out to every cortical lobe, the impact of either an excess or deficiency of this chemical on information processing would be significant. If the dopamine system in the autistic brain is overactive, however, at the very least neural impulses would be routed through all the proper processing channels, so that people with autism would be better able to grasp the “big picture” and be able to base their thoughts and behavior on precise perceptions. As dopamine activity is regulated in the frontal lobe, and as circuits to this lobe are likely to be compromised to some degree in autism, it might be that at times there is too much activity and at other times much too little.

Two other neurotransmitters that may be implicated in causing or contributing to autism are norepinephrine and epinephrine, dopamine derivatives in the same catecholamine family. In the brain, nerve cells that release norepinephrine are clustered in the brain stem with their axons projecting to many brain regions. As a neurotransmitter, norepinephrine is both excitatory and inhibitory and is involved in arousal level as well as in autonomic control of body functions.162

Norepinephrine and epinephrine have important physiologic functions outside the nervous system as well. They act as regulators of carbohydrate and lipid metabolism, increasing the degradation of triacylglycerol and glycogen to glucose as well as increasing heart beat and blood pressure in response to fright, exercise, cold and low levels of blood glucose.163 If there is a shortage of these “fight or flight” molecules in the blood, the

breakdown of carbohydrates to glucose would be slowed, as would the body’s reaction to emergency situations.

Norepinephrine as well as dopamine and serotonin have their effect on receptor cells through a time and energy consuming ‘second messenger’ system, so any irregularity in the supply of the energy source ATP would have a significant negative impact on the ability of these neurotransmitters to function smoothly.

Another brain chemical linked to autism is GABA or gamma-aminbutyric acid. As this neurotransmitter is inhibitory, a deficiency of GABA in people with autism would help explain the poor inhibition that allows their brains to become overaroused, causes them to live in a constant state of anxiety.

Glutamate may also play a role in autism. Formed from glycogenic amino acids, this chemical acts as an excitatory neurotransmitter in the brain, activating some receptors in the hippocampus.164 Any deficit of glutamate would result in decreased activation of receptors in the limbic system that influence emotion, learning, memory and motivation.165 Receptors in the amygdala, located directly atop the hippocampus, might also be affected, further affecting the formation of declarative memories and throwing off the coordination of autonomic and endocrine responses with emotional states.

A deficiency of another neuropeptide, Oxytocin, may also contribute to autism. Oxytocin is a hormone that is intimately involved in social functions, with numerous receptor sites in the limbic system. Oxytocin receptive fields are labile, and significant shifts in receptor density occur in early development. A failure to shift from an infantile to a mature pattern, resulting in decreased central oxytocin receptor function, may contribute to the social impairment in autism.166 The correlation of low plasma oxytocin levels has been found in low functioning or “aloof” autistic children, but the correlation is not found in high functioning or “active-but-odd” children.167

The steroid hormones, progesterone, estrogen, testosterone and adreno-corticotropic hormone or ACTH are also relevant to autism. The production and secretion of ACTH is activated by the hypothalamus when the body is stressed. This hormone stimulates the adrenal cortex to synthesize cortisol, which in turn acts to promote gluconeogenesis in the liver and to stimulate the breakdown of proteins to amino acids in the muscles.168 So, the ingestion of the ACTH precursor, progesterone, in the form of birth control pills, would cause an increase in ACTH, making a person better equipped to handle stress. The resultant increase in cortisol would also activate glucose and amino acid synthesis, helping the brain and body to function better.

How do drugs work to control neurotransmitter function?

All mind-affecting drugs have their action at the synaptic gap. They work by modifying the way neurons communicate across this gap. Some drugs alter the amount of neurotramsmitters released or the rate of release. Others have their effect by either blocking or increasing the availability of receptor sites. Still others work by reducing the action of enzymes that break down neurotransmitters, rendering them inactive.169 The catecholamines (dopamine, norepinephrine and epinephrine) and serotonin are inactivated by oxidative deamination, catalyzed by the enzyme monoamine oxidase (MAO). MAO inhibitor drugs (antidepressants) serve to inactivate this

enzyme, permitting neurotransmitter molecules to escape degradation and to activate dormant receptor systems.

Some neurotransmitters are reabsorbed into axons from fluid surrounding the nerve cells for reuse (endocytosis). Selective serotonin reuptake inhibitor drugs (SSRIs), including fluoxetine (Proxac), sertraline (Zoloft), fluvoxamine (Luvox), paroxetine (Paxil) and venlafaxine (a serotonin and norepinephrine reuptake inhibitor) work by blocking the re-uptake or recycling of serotonin and norepinephrine, thereby reducing their excitatory effect on the brain. The use of these drugs can be effective in curbing the restrictive, repetitive and obsessive behaviors associated with autism.

In attempting to curb or control the symptoms of autism, is it better to use drugs or dietary supplements?

Its better to use whatever works! As autism has a biochemical basis, pharmacological intervention is certainly warranted and often effective. In my daughter’s case, we've used both at different junctures in Meg's life. If there are no severe symptoms or medically warranted reason to resort to seizure medication, antidepressants or SSRIs, I would recommend supplements to begin with, as nutrients are part of the body’s normal physiology and given to facilitate normal functioning, while drugs are blocking agents, foreign to the body and given to interfere with normal processes.”170

How do specific supplements work to make the brain and body function better?

Quite simply, supplements work by building up or activating the biochemicals in the body responsible for normal functioning. If we are deficient in any nutrient, or if the nutritional value of the foods we eat is compromised by over-cooking and over- processing, whole chains of metabolic processes may go awry.

The following is a brief list of the supplements that act as coenzymes (or precursors to coenzymes) in the synthesis, activation or metabolism of some neuropeptides that have been causally linked to autism.

B-complex vitamins:

- Riboflavin is needed for synthesis of the amino acid tryptophan (precursor to serotonin).

- Niacin is needed for activation of the enzymes tryptophan hydroxylase and tyrosine hydroxylase (to form serotonin and the catecholamines: dopamine, norepinephrine and epinephrine)

- Niacin and Pantothenic Acid are needed for synthesis of the steroid/adrenal hormones.

- B6 is needed for synthesis of the amino acids cysteine, taurine and tryptophan and, along with Folic Acid, synthesis of the nucleic acids RNA and DNA.

Choline (needed for the proper transmission of nerve impulses) and Inositol are needed for synthesis of many hormones and of lecithin, a component of all cell membranes.

Vitamin C is needed for synthesis of anti-stress hormones and the metabolism of folic acid, tyrosine and phenylalanine.

Calcium is needed for the synthesis of RNA and DNA and for the activation of digestive enzymes like lipase that break down fats.

Magnesium is a vital catalyst in of enzymes involved in energy production. It assists in calcium and potassium uptake.

Potassium is needed for hormone secretion and for catalyzing chemical reactions within cells.

Amino acids as a group are necessary for the synthesis of all protein substances, so I will only list a few specific examples.

- Arginine stimulates the pancreas to produce insulin.

- Glycine forms RNA and DNA and the amino acid serine.

- DMG helps to produce choline and the amino acid methionine.

- Serine forms transferase enzymes and pyruvate (the substrate for gluconeogenesis). It can also be converted into the amino acids cysteine and glycine (as long as the vitamin B6 is present).

- Cysteine, the main source of free sulfur in the body, is needed for the synthesis of taurine and undergoes desulfurization to yield pyruvate.

- Glutamine can be converted to Glutamic Acid or GABA.

- Methionine can be converted to cysteine and/or taurine (as long as the

B6 is present).

- Phenylalanine converts to tyrosine, which converts to the neurotransmitter dopamine.

- 5-HTP (5- Hydroxytryptophan) converts to tryptophan, which converts to the neurotransmitter serotonin.

Thiamine, B6, Vitamin C, Iron, Lysine and Methionine are needed to synthesize Carnitine, a transferase enzyme that functions to transport long chain fatty acids across cell membranes so that they can be broken down and metabolized into energy.

Omega 3 and 6 essential fatty acids form prostaglandins, hormone-like substances that act as chemical messengers and regulators of various body processes. They are also precursors to the plasmologens that form myelin.

How might specific supplements help people with autism to feel and function better?

I’ve grouped the supplements below according to the specific roles they may play in remediating autistic biochemistry.

1. Supplements that regulate mood; reduce anxiety and hyperactivity

Vitamins: B-complex (particularly Niacin, Pantothenic acid (B5) B6 and Inositol. Minerals: Calcium and Magnesium. Amino Acids: GABA, Glycine, Taurine, Phenylalanine, Tyrosine, Tryptophan (5-HTP)

2. Supplements that enhance digestion and energy metabolism, resulting in the delivery of more glucose (ATP) to brain cells:

Vitamins: B-complex (particularly Thiamine, Riboflavin, Niacin, Biotin, B6 and Folic Acid) Choline, Inositol and Coenzyme Q10. Minerals: Calcium, Potassium and Magnesium. Amino Acids: Alanine, Serine, Taurine, Glutamine, Glycine and DMG. Enzymes: Bromelain, Papain, Pancreatin and Pepsin.

3. Supplements that help maintain a healthy, gastrointestinal tract and acid/base balance of digestive fluids:

Vitamins: B-complex (particularly Thiamine, Riboflavin, Niacin and B6). Minerals: Potassium and Sodium. Amino Acids: Glutamine, Glycine and Taurine. “Friendly” bacteria: Acidophilus and Bifudus supplements.

4. Supplements that stimulate blood circulation and oxygen delivery to the brain, thereby boosting cognitive function:

Vitamins: B-complex (particularly Thiamine), Vitamin E and Coenzyme Q10. Amino Acids: Methionine. Herbal: Kyolic Garlic and Ginkgo Biloba.

5. Supplements that abet the transmission of neural messages to and within the brain, thereby enhancing learning and memory:

Vitamins: B-complex (particularly Thiamine, Niacin, B6, Folic Acid) and Choline. Minerals: Calcium, Potassium and Magnesium. Amino Acids: Glutamine, Phenylalanine, Tyrosine. Fatty Acids: DHA, Evening Primrose Oil, Ultimate Oil and Phosphatidylserine/choline.

6. Supplements that promote neural cell development, fatty acid metabolism and myelin formation:

Vitamins: Vitamin A, B-complex (particularly B12, Biotin, B6 and Folic Acid), Lecithin (formed from Choline and Inositol) and Vitamin C. Amino Acids: Serine, Taurine, Methionine and DMG. Omega-3 and Omega-6 Fatty Acids, Carnitine and Phosphatidlyserine complex.

7. Supplements that bolster immune system function by promoting red or white blood cell and antibody production:

Vitamins: B-complex (particularly Riboflavin, B6 and Folic acid) Vitamin C, Coenzyme Q10 and DMG. Minerals: Iron and Sulfur. Amino Acids: Arginine and Serine. Herbal: Kaolic Garlic

8. Supplements that aid in protecting the body and brain from the harmful effects of toxic substances:

Amino Acids: Aspartic acid, Glutamine (removes ammonia from the brain and intestinal mucosal cells), Cysteine and Methionine.

9. Supplements that lessen allergies by reducing histamine levels:

Vitamins: Coenzyme Q10. Amino Acids: Methionine and Taurine.

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What’s Going On?

PIECING THE AUTISM PUZZLE TOGETHER

How do the pieces of the autism puzzle fit together?

Although we don’t have all the pieces of the puzzle, we do have many of them. The pieces are the facts we know about sensory processing, neurobiology and biochemistry, along with the many facts and theories we have about what might cause or contribute to autism. Using one hundred pieces of information, including a few hypotheses, the puzzle might be put together like this:

1. HYPOTHESIS: If the core cause of autism is prenatal and genetic, it could be caused by variant alleles or mutations of the protein coding factors of the HOX genes, which are responsible for laying down basic brain structures.184 As these protein factors serve to regulate the activity of other genes, any deviation in coding could act to suppress normal cellular growth and activity.

2. If this genetic glitch occurs very early in fetal development, only certain neurons could be affected: the brain stem motor neurons of the cranial nerves and the Purkinje cells in the cerebellum. Autopsy studies have found a reduced number of both.

3. FACT: Purkinje cells inhibit the activity of the neural cells they connect with, so fewer cells could mean fewer inhibitory connections to the brain stem reticular and vestibular nuclei.

4. FACTS: When stimulated, the reticular nuclei arouse the nervous system. They send messages to the hypothalamus to regulate heartbeat, breathing and digestion, and to the cortex, signaling it to shift attention from one thing to another. Too little inhibition of the reticular nuclei could result in the autistic inability to shift attention and maintain control.

5. FACTS: The brain stem vestibular nuclei process and coordinate

sensations from the gravity and movement receptors in the inner ear with information from all other sense receptors. This processing affords a person gravitational security, which serves as a basic reference point for the interpretation of all sensory experience. If the vestibular nuclei are not functioning properly, due to lack of inhibition from Purkinje connections, the registration and interpretation of all sensory messages would be “off.”

6. THEORY: In autism, the formation of neurons in the brain stem is not inhibited, but those neurons that form fail to function properly, resulting in poor modulation and integration of sensory information passed on to the thalamus.

7. FACT: Thalamic nuclei control what and how impulses are transmitted and integrated beyond the brain stem level.

8. THEORY: Because information from the body senses is not being registered and relayed properly from the brain stem, fewer viable connections are formed from the thalamus to cortical sensory lobes, and those that do form fail to function in a typical manner due to left over fetal “cross wiring” or selective input registration.

9. THEORY: Fewer sensory impulses make their way up to cortical processing lobes, and those that do tend to get hung up or loop around posterior brain circuitry.

10. FACTS: Long association tracts in the cerebrum convey impulses from lobe to lobe, connecting anterior and posterior regions of the brain. These long association tracts are most susceptible to synaptic dysfunction because of their complexity and the number of connections or synapses involved.

11. FACT: If any connections along these tracts are impaired, neural communication would be slowed or short-circuited, resulting in the a lack of growth or deterioration of the nerve cells failing to receive the transmission.

12. FACTS: Most of these end-stage processing neurons are located in the brain’s frontal lobes. Prefrontal cortex neurons are very involved in “executive functioning” (planning and decision making) along with memory, cognition and social/emotional attribution.

13. FACT: There are a lot of connections between the amygdala and hippocampus in the limbic system and the prefrontal cortex. Together they form an integrative system.

14. THEORY: If activity in the prefrontal lobes of autistic brains is impaired due to a breakdown of neural communication in the association tracts,

critical cortical connections to the limbic system would be compromised.

15. FACT: Neurons failing to receive adequate stimulation either “commit suicide” or fail to thrive (to sprout connecting fibers).

16. FACT: Autopsy studies of autistic brains have found neurons in the amygdala and hippocampus of the limbic system to be abnormally small and tightly packed. (They have fewer and shorter connecting fibers, resembling immature cells.)186

17. FACT: The amygdala and hippocampus in the limbic system are involved in complex learning, in fine-tuning perceptions, in regulating the expression of emotions and in the organization of voluntary behavior. If the development of neurons in these brain structures is impaired in people with autism, as the autopsy findings seem to indicate, these functions would be impaired.

18. FACT: Declarative memories, which involve the integration, internalization and generalization of factual information and experience, have their genesis in the amygdala and hippocampus of the limbic system (and are stored in the frontal cortex).

19. FACT: People with autism have great difficulty with complex, conceptual learning and with the formation of declarative memories.

20. FACT: If the primary sensory processing circuit up to and through the cortical association tracts is impaired so that sensory impulses are impeded from reaching frontal lobe and limbic organizational nuclei, or if there are too few of these nuclei to do the job, the meaning of sensations and/or perceptions would be skewed or incomplete.

21. FACT: If perceptions are “off,” than responses to those perceptions, in the form of actions, emotions, thoughts and behavior, are going to be “off,” as they are in autism.

22. FACT: Cortical projection fibers convey response impulses from the frontal cortex back down to the brain stem and cerebellum, via the thalamus and limbic structures.

23. FACT: If response messages wending their way back down to the brain stem and cerebellum are vague or incomplete, the development of neural cells receiving these messages would be compromised.

24. FACT: Autopsy research has revealed both cerebellar cell loss and

immature neuron development in autistic brains; findings consistent with a breakdown in neural feedback communication.187

25. FACT: The cerebellum regulates neural messages involving balance and coordination, as well as those concerned with the anticipatory planning of movements, thoughts and emotions.

26. FACT: Procedural memories, which involve the acquisition of motor skills and abilities through repeated trials, are primarily formed in the cerebellum.

27. FACT: Autistic children are able to learn by repetition, but it takes them longer to learn than it takes the average child.

28. FACT: The hypothalamus, in the limbic system, is in charge of regulating the body’s autonomic (internal) processes, including temperature, blood pressure, digestion and metabolism.

29. FACT: If the messages the brain stem is receiving from the cortex are “off,” the messages it passes on to the hypothalamus and the hypothalamus passes on the pituitary will be “off.”

30. FACT: Based on feedback it receives from the hypothalamus, the pituitary gland either increases or shuts down the production of specific enzymes and hormones.

31. HYPOTHESIS: In the case of autism, either the pituitary curtails production of the hormone DPP-IV (dipeptydal peptidase) based on faulty feedback, or a mutation occurs in the mRNA sequence or genetic code for its makeup.

32. FACTS: DPP-IV is an intestinal enzyme that serves to catalyze the breakdown of protein (polypeptides) into amino acids. A deficiency of DPP-IV would result in an irregularity or deficiency in protein metabolism and amino acid synthesis, which would, in turn, affect the synthesis of other key, protein-based chemical regulators (enzymes and hormones).

33. THEORY: One enzyme that might be affected by DPP-IV deficiency is GLP-1 (glucagon-like peptide), which is cleaved by DPP-IV.188 This enzyme acts to regulate blood glucose levels by stimulating pancreatic insulin secretion and inhibiting glucagon secretion.

34. FACT: Insulin acts anabolically to build up stores of glycogen in the liver, while glucagon acts to break them down.

35. FACT: Glucagon-like peptide (GLP-1) acts like glucagon to stimulate the breakdown of glycogen. Less GLP-1 would mean less dietary glucose is broken down through glycolysis to form the energy source ATP (adenosine triphosphate) pyruvate and lactate.

36. FACT: The amino acid serine is formed from 3-phosphoglycerate, an intermediate in glycolysis. If less glycolysis is taking place, less serine would be formed.

37. FACT: Serine is a glucogenic amino acid containing a polar hydroxyl group that can serve as a site of attachment for C, N or P transferases. A side chain of serine is an important component of the active site of many enzymes, including DPP-IV.189

38. FACT: If any amino acid is in short supply, the production of all other amino acids and polypeptide enzymes, hormones and neurotransmitters that depend on that amino acid for synthesis would become depleted.

39. FACTS: Serine is the precursor to the amino acid cysteine, the main source of free sulfate in the body. A deficiency of serine would result in a deficiency of cysteine, which would result in a deficiency of sulfur in the body.

40. FACT: Low levels of free sulfate have been found in the plasma of people with autism, along with deficiencies in sulfur transferase capabilities.190

41. THEORY: Insufficient disulfide bonding and an impaired sulfur transferase system could cause further denaturization of some regulatory polypeptides.

42. FACT: As sulfur acts to disinfect blood and to help the body resist bacteria and toxic substances, low sulfate levels can be causally linked to impaired immunity.

43. FACTS: Along with its role in amino acid synthesis, DPP-IV is found on the surface of T-cells and is involved in their activation.191 A deficiency of DPP-IV would therefore result in decreased activation of T-cells in the Thymus.

44. FACT: As T-cells function to kill off foreign or viral infected tissue and to produce lymphokines (large proteins that regulate immune cell production) inactivation of these cells would further compromise immune response.

45. FACT: IgA (immunoglobulin A) is an antibody produced by the immune system to fight off intestinal germs and bacteria. SIgA is a form of IgA secreted by the gall bladder to protect the intestinal lining. Levels of both antibodies have been found to be low or absent in the blood of people with autism.192

46. THEORY: The impaired immune systems of children with autism could be further compromised by the administration of vaccines or antibiotics containing heavy metal adjuvants or foreign organic matter (bacterial or viral particles from animal culture sources).

47. THEORY: As a large part of the immune system is located in or near the intestinal tract, an allergic reaction or auto-immune response to vaccines or antibiotics could lead to the production of unusual metabolites or to the proliferation of yeast in this tract.

48. FACT: The presence of unusual or toxic metabolites in the bloodstream would result in increased serum levels of IgG and IgE (immunoglobulin G and E); a finding that has been linked to autism.

49. FACTS: IgG and IgE antibodies are produced by lymphocytes to fight off germs and may be involved in causing food allergies.193 Elevated IgE and IgG would result in the increased susceptibility to food allergies and gastrointestinal problems common to people with autism.

50. THEORY: The proliferation of yeast, bacteria or toxins in the intestinal tract could lead to the further reduction or dysfunction of hormone or enzyme secretion.

51. THEORY: One consequence of this reduction in enzyme and hormone production could be a shortage of histamines, the chemical messengers that regulate cellular response to allergens and inflammation. If fewer histamines are produced, allergic reactions would be more pronounced, as they often are in autism.

52. THEORY: The production of fewer histamines and/or yeast induced pancreatic atrophy impacting the activity of pancreatic enzymes could contribute to the presence of undigested gluten and casein peptides in the gastrointestinal tract.

53. THEORY: Abnormal metabolites and/or protein byproducts (caseomorphin and gluteomorphin) are absorbed from the intestines into the bloodstream. They travel up to and pass into the brain, where they act as opioids affecting enzyme and hormone regulation by the hypothalamus and stimulating cerebral opioid receptors in the parietal and temporal lobes

to produce symptoms of autism.194

54. THEORY: Opioid induced interference with enzyme and hormone regulation could result in decreased gastric acid secretion, with the result that the pH of intestinal contents rarely gets low enough to cause the mucosal cells to release the hormone secretin.

55. FACT: Problems in secretin synthesis and/or activation are suspected to cause or contribute to autism. A deficiency of secretin could be attributable to yeast or antibody induced gut metabolic dysfunction or to a deficiency of the amino acid serine, which appears three times in its structural make up.

56. FACT: As stomach acid must be neutralized by the secretin activated release of bicarbonate before pancreatic enzymes can do their job of degrading nutrients, a lack of secretin activity would result in a curtailment of pancreatic enzyme activity impeding the breakdown of carbohydrates, proteins and lipids into glucose, amino and fatty acids.

57. THEORY: Low levels of plasma glucose would signal the need for more glycolysis in the liver. But, as secretin also serves to stimulate the production and release of insulin, even a reduced secretion of this hormone, along with a deficit of GLP-1, might signal the pituitary to hold off on the release of glucagon, thereby impeding the breakdown of glucose through glycolysis.

58. FACT: Less glycolysis along with less enzyme activated catabolism of proteins and fats would result in the availability of less pyruvate, lactate and glycerol to serve as substrates for the other glucose forming process of gluconeogenesis.

59. THEORY: Because of reduced or erratic glycolysis and/or gluconeogenesis, the supply of glucose and its energy derivative ATP delivered to the autistic brain might be uneven, impeding the smooth flow of neural impulses and neurotransmitter activity.

60. THEORY: A sluggish or uneven delivery of glucose to the autistic brain could account for mood alterations from hyperactivity and heedless impulsivity to a spaciness or dream-like state akin to mild hypoglycemia. (The hyperactive response after secretin infusion might be attributable to a brief correction in glucose metabolism.)

61. FACT: As ample ATP is required for the synthesis and degradation of neurotransmitters, any shortage of this critical energy source would impede the ability of neural receptor systems to receive and respond to new waves of impulses (which might help account for the repetitive and perseverative

behaviors of autism.)

62. FACT: In addition to supplying ATP, pyruvate and lactate, the breakdown of glucose through glycolysis forms the substrate NADH, when the aerobic path is used, and NAD (nicotinamide dinucleotide) when the process is anaerobic.

63. FACT: NAD is phosphorylated into NADP, which is then hydroxylated into NADPH.

64. FACT: If less glycolysis is taking place, due to impaired enzyme and hormone activity in the gut, there would be less NADH and NAD, and consequently, less NADP and NADPH.

65. FACTS: NADPH is necessary for the formation of the progesterone based steroid hormones from cholesterol. If there is less NADPH, the production of these hormones would be curtailed.

66. Under stress, the steroid adreno-corticotropic hormone or ACTH stimulates the adrenal cortex to synthesize cortisol, which acts to promote gluconeogenesis in the liver and the breakdown of proteins into amino acids in the muscles. Less ACTH would mean less cortisol, which in turn would mean less glucose and amino acid synthesis when the body is stressed.

67. FACTS: NADP and NADHP are precursors of dihydrobiopterin (BH2), which forms the coenzyme tetrahydrobiopterin (BH4). BH4 is necessary for the activation of the enzymes tyrosine hydroxylase and tryptophan hydroxylase.

68. FACT: When activated by tyrosine hydroxylase, the amino acid tyrosine catabolizes into the neurotransmitter dopamine, which is further catabolized into norepinephrine and epinephrine.

69. FACT: When activated by tryptophan hydroxylase, the amino acid tryptophan catabolizes into the neurotransmitter serotonin.

70. FACT: A deficiency of the coenzymes BH2 and BH4 would result in the formation of less serotonin, dopamine, norepinephrine and epinephrine; key neurotransmitters commonly linked to autism.

71. FACT: In addition to supplying cellular energy, the glucose derivative ATP can be converted to cystic AMP (cAMP), an important messenger system and reaction substrate in the brain and body. An inadequate or uneven supply of ATP would therefore result in an inadequate or uneven

supply of intracellular cAMP.

72. FACT: As secretin acts to increase the level of cAMP in certain brain regions, the therapeutic effect attributed to secretin infusion would be due in part to its raising cAMP levels.195

73. FACT: As sufficient cAMP is required for the phosphorylation of tryptophan hydroxylase into serotonin, any fluctuation in cAMP levels would result in a fluctuation of serotonin levels.

74. FACT: Serotonin acts as a facilitatory neurotransmitter in the brain, abetting neural message transmission, so any lack of serotonin in the brain would slow or impede information processing.

75. FACT: The largest amount of serotonin is found in intestinal mucosa cells, where it functions to influence pain perception and to help regulate sleep, temperature and blood pressure.

76. THEORY: It could be that the problems some people with autism have with falling asleep and registering pain are attributable to dysfunction of intestinal serotonin receptors, which could be caused by the proliferation of yeast, bacteria and/or toxic microbials in the gastrointestinal tract.

77. FACTS: The precursor to serotonin is 5-HT (hydroxy tryptophan). Numerous 5-HT receptors are located in the Anterior Cingulate Gyrus of the limbic system. This area is involved in higher cognitive functions, the expression and recognition of emotion and affect, mother-infant bonding, pain response and the ability to initiate goal directed behavior. If the 5-HT receptors in this area are not properly activated, these functions would be impaired, as they are in autism.196

78. THEORY: Repetitive, compulsive autistic behaviors may also be attributable to a curtailment or alteration of Cingulate Gyrus activity due to a lack of stimulation of 5-HT receptors.

79. FACT: As the hormone secretin (along with the coenzyme BH4) is needed to activate the conversion of tyrosine hydroxylase into dopamine and the catecholamines, a problem with secretin synthesis could further curtail the synthesis of these key neurotransmitters.

80. FACT: A lack of facilitatory dopamine and norepinephrine would also impede neural message transmission, especially to critical cerebral processing centers in the frontal lobe and limbic system.

81. FACTS: In the body, norepinephrine and epinephrine act as regulators of carbohydrate and lipid metabolism, increasing the degradation of triacylglycerol and glycogen to glucose as well as increasing heart beat and blood pressure in response to fright, exercise or cold. Any lack of these “fight or flight” chemicals in the blood would further impair glucose metabolism, as well as hindering a person’s ability to react in emergency situations.

82. THEORY: Because the reticular nuclei in the autistic brain stem are overly sensitive to stimulation (due to lack of modulation and inhibition from vestibular and cerebellar nuclei) and because these nuclei determine what regulatory information is passed on to the hypothalamus, it is possible that the release of an excess of norepinephrine and epinephrine is called for under conditions that would not be considered arousing under ordinary circumstances.

83. THEORY: An excess of these chemicals released into the bloodstream would trigger a surge of glucose metabolism, which would result in the synthesis and firing of more excitatory neurotransmitters. This unmodulated, unregulated burst of neural energy would have the effect of throwing the entire nervous system into a state of overdrive, accounting for the high state of arousal and anxiety many people with autism experience when confronted with novel situations and challenges.

84. THEORY: If the information processing circuitry in the limbic system of autistic brains is skewed or underdeveloped, particularly with regard to information relayed from the prefrontal cortex, it could be that this unregulated burst of neural energy gets caught up in a repetitive, posterior cortical cycle rather than reaching and activating crucial frontal lobe and limbic receptors.

85: THEORY: As the hippocampus is located in the limbic system, one consequence of this skewed circuitry could be that too little regulatory information reaches this structure too late, so that it continues to relay misinformation down to the pituitary.

86. THEORY: The excitatory neurotransmitter glutamate is supposed to activate receptors in the hippocampus, facilitating learning, memory, emotion and motivation. But if these limbic receptor cells are dysfunctional, excess glutamate might wend its way back to the adjacent hypothalamus, which might react by instructing the pituitary to release more insulin and less glucagon, resulting in the cutback or curtailment of glycolysis and glucose metabolism.

87. FACTS: Continuing the metabolic cycle where we left off at fact 58, less

glycolysis would precipitate another chain of detrimental consequences having to do with the catabolism of lipids. First, less glycolysis would mean less cAMP, the chemical that serves as a substrate for the degradation of triacylglycerols into glycerol and fatty acids. It would also mean less pyruvate and lactate, the primary sources of the mitochondrial acetyl CoA and palmitol CoA involved in fatty acid metabolism.

88. FACT: As fatty acids act to rebuild and produce new cells and tissues, and in this capacity help to maintain the integrity of the intestinal mucosal cells, any problem with their synthesis could result in increased permeability of the intestinal lining, allowing toxins and partially digested food products (opioids) to pass more easily into the bloodstream. (Refer back to fact 53.)

89. FACTS: A deficit of the glycogen dependent amino acid serine would result in a deficit of the serine based enzyme carnitine transferase, which functions to transport long chain fatty acids across mitochondrial cell membranes so that they can be broken down and metabolized. This could account for the finding of an accumulation of long chain fatty acids in the cell membranes of people with autism.197 (Carnitine Deficiency Syndrome, a glycogen storage disease, presents like autism.)

90. FACT: Insufficient carnitine transferase would impede the breakdown of CoA fatty acid derivatives into the glycerol, springosine and phosphatidic acid that serve as substrates for the production of springomyelin and the phospholipids.

91. FACTS: A deficit of serine and cAMP would also curtail the phosphorylation of phospholipids into the plasmologens that are important components of myelin. Impairment in the myelination of neural fibers would further hinder neural transmission.

92. FACT: As phosphatidyl-based plasmologens also activate transmembrane signaling mechanisms, a problem with their synthesis would adversely affect neural transmission across cell membranes.

93. THEORY: Phospholipase enzymes, like trypsin, function to degrade phospholipids in the intestines. In autism, pancreatic secretion and digestive activity of trypsin (like that of secretin) could be affected by an opioid induced reduction of gastric acid secretion and lowering of intestinal pH. This could result in phospholipids, like phosphatidylserine and phosphatidylcholine, being excreted from the system whole, rather than being broken down into their respective amino acid bases and being reabsorbed and recycled by the body (causing a deficit of serine and choline.)

94. FACT: Toxins and bacteria in the intestinal tract, along with foreign substances introduced into the body via vaccines or antibiotics, can also serve in a phospholipase capacity. In addition to reducing the amino acid pool, this could result in further dissolution of intestinal membranes, allowing for the spread of infection and undermining the immune system (fact 46).

95. FACT: The dissolution of intestinal cell membranes would also allow for the passage of unusual chemicals and foreign protein antigens into the bloodstream, which could cause the formation of brain reactive antibodies to MBP (myelin basic protein) and NAFP (neuron-axon filament protein) further affecting nerve cell myelination and neural transmission.198

96. THEORY: If the synthesis of myelin is slowed or impeded in autistic children, due to impaired fatty acid degradation or immunological assault, this could further explain the curtailment in the development of their neural circuitry. As unmyelinated neural circuits are more susceptible to harmful toxins/antibodies, this cycle could be self-perpetuating.

97. FACT: Myelination of nerve fibers in the human brain begins in the brain stem and progresses gradually to more sophisticated processing centers like the cortex and frontal lobes.199

98. THEORY: In extremely low functioning autistics, the immature neural circuit of brain stem inferior olive to thalamus may never develop into the adult circuit of brain stem to cerebral cortex.

99. THEORY: Studies show that individuals with autism, particularly those with low functioning autism, tend to have larger than average brains. This may have less to do with the degree of myelination than with pockets of cerebral spinal fluid that have accumulated in regions where reduced or impeded processing activity has caused a lack of blood flow and oxygen delivery.

100. THEORY: Higher functioning autistics may have more extensively myelinated processing systems, but some key areas of their frontal lobes may remain unmyelinated, resulting in the impairment of neural communication and information processing at the executive, associative, conceptual level; an impairment that makes it extremely difficult to think and behave in a typical manner.

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APPENDIX

Current Theories about What Might Cause Autism

GENETIC THEORY:

Autism may be caused by several deviant alleles (mutations) of the protein coding regions (exons) of the HOXA1 gene that plays a central role in the development of the brain stem.210 Removal of the HOXA1 gene in laboatory mice produced brain stem features related to those found in autopsied autistic brain specimens. The brain stem was shorter than normal, had smaller facial nucleus and was missing the superior olive. The mice also had ear malformations and were missing a brain structure that controlled eye movement, anomalies associated with autism.211

The genetic glitch that results in autism most likely occurs within the first four weeks of gestation, during which time the only neural cells that are viable are the motor neurons of the cranial nerves in the brain stem and the purkinje neurons in the cerebellum. A deficit of these early forming cells would result in an underdeveloped, dysfunctional connection mechanism that would have widespread ramifications for the development of higher level functional neural circuitry.

ENVIRONMENTAL FACTORS:

The jury is still out on what significant environmental risk factors might be implicated in autism, although it is thought that in utero exposure to rubella (German measles) or to birth defect causing substances such as ethanol, valproic acid or thalidomide might increase the chances of a fetus developing autism. Also, genetic diseases like phenylketonuria and tuberous sclerosis might predispose a person to developing the disorder, but none of these factors is present frequently enough to be responsible for so many cases.212

BIOCHEMICAL THEORIES(and Supplement Treatment Options)

1. Free Sulfate Theory: Low levels of sulfates (which act to disinfect blood) have been found in the plasma of people with autism, along with deficiencies in sulfur transferase capabilities.

POSSIBLE REMEDIES: Supplementation of the amino acids cysteine, taurine and methionine and the herb, Kaolic Garlic. (The mineral sulfur is not effective as it cannot be absorbed from the gut.)

2. Auto-immune Response Theory: The immune systems of autistic children are thought to be compromised by vaccines and antibiotics, resulting in an allergic reaction in the gastrointestinal tract, leading to the production of unusual or toxic metabolites and antibodies against the brain.

POSSIBLE REMEDIES: Supplementation of the B-complex vitamins, vitamin C, Coenzyme Q10, the amino acids aspartic acid, arginine, cysteine, glutamine, serine, methionine, along with DMG and Kaolic garlic.

3. Fatty Acid Theory: Fatty acids act to rebuild and produce new cells and tissues, and in this capacity help to maintain the integrity of the intestinal lining. An insufficiency of EFAS would result in increased permeability of the gut wall, allowing partially digested food products to pass more easily into the blood stream, leading to the yeast/opioid excess theory of autism.

POSSIBLE REMEDIES: Supplementation of B-complex vitamins, lecithin or choline and inositol, Omega-3 and Omega-6 EFA formulations including DHA, Evening Primrose and Ultimate Oil, and the amino acids serine, taurine and methionine.

4. Yeast infection/Opioid Excess Theory: The waste products of yeast are absorbed from the gut into the bloodstream and travel up to the brain where they act as opioids or opioid-like substances affecting hormones and hormonal regulation and stimulating opioid receptors in the brain to produce symptoms of autism.

POSSIBLE REMEDIES: Supplementation of the amino acid taurine and/or healthy bacteria like Lactobacillus Acidophilus or Bifudus. Also use of antifungal medications, like Nystatin and Diflucan, or an opioid antagonist like Naltrexone.

5. DPP-IV Deficiency Theory: An absence or deficiency of the enzyme dipeptydal peptidase IV, which serves to catalyze the breakdown of polypeptides (including casein and gluten) into amino acids, could cause or contribute to autism. DPP-IV is found on intestinal mucosal cells, on the epithelial cells of the liver and kidney and on the surface of T-cells, which it serves to activate.

POSSIBLE REMEDIES: Infusion of replacement enzyme DPP-IV or GLP (glucagon like peptide), which is cleaved by DPP-IV.

6. Viral Infection Theory: Due to decreased activation of T-cells, people with autism are at risk for developing viruses in the gastrointestinal tract that spread to and undermine the CNS.

POSSIBLE REMEDIES: Supplementation of B-complex vitamins, vitamin C, the amino acids aspartic acid, cysteine, methionine, serine and DMG and Kyolic garlic.

7. Secretin Deficiency Theory: A deficiency of this pancreatic hormone, possibly caused by a lack of one or more of the essential amino acids in its composition or a yeast/antibody induced gut metabolic dysfunction, results in the incomplete digestion or decomposition of carbohydrates, proteins and lipids. This would result in the availability of less amino and fatty acids to serve as substrates for both protein synthesis and the glucose forming processes of glycolysis and gluconeogenesis.

POSSIBLE REMEDIES: Supplement secretin via intravenous injection, topical patches or sublingual pills.

8. Dopamine Theory: Elevated levels of this excitatory neurotransmitter or increased sensitivity of dopamine receptors could cause the high state of arousal common to autism. But, if the secretin and other regulatory hormones fail to activate tyrosine hydroxylase, the problem might be that less dopamine available to facilitate neural communication. Less dopamine would also mean less norepinephrine and epinephrine, since these chemicals are synthesized from dopamine. And less norepinephrine and epinephrine would mean less glucagon, which would mean less glucose synthesis through glycolysis or gluconeogenesis.

POSSIBLE REMEDIES: Supplementation of the amino acids tyrosine and/or phenylalanine, which are hydroxylated to form dopamine and the catecholamines. The B-vitamin Niacin, a precursor to the substrates that catalyze this hydroxylation, might also be helpful.

9. Serotonin Theory: Altered or deficient synthesis of this facilatatory

neurotransmitter, possibly caused by an uneven supply of the glucose derivatives ATP, cAMP, NADP or NADPH, might contribute to either impeded or unmodulated neural transmission. It would also result in either overactivation or lack of activation of serotonin receptors in the key processing areas such as the preforntal cortex and the limbic anterior cingulate gyrus.

POSSIBLE REMEDIES: As the amino acid tryptophan is not available in the United States, supplementation of its precursor 5-HTP (hydroxytryptophan), which is hydroxylated to form serotonin. Also supplement the B-vitamins Niacin, , which converts into to the coenzymes that activate this hydroxylation process. Also SSRI drugs, like Prozac or Zoloft.

10. Impaired Myelination Theory: Impairment to the myelination of neural fibers, due to a deficiency of fatty acid derivatives, alters or impedes neural communication, especially to higher processing centers. This theory is consistent with the auto-immune and viral infection theories, as unmyelinated neural cells are more susceptible to harmful antibodies which damage uninsulated neural membranes, causing the flow of neural signals to be interrupted or shortcircuited. Adjuvant chemicals, heavy metals or foreign protein antigens/bacteria, introduced into the body via vaccines, also contribute to reactions associated with demyelination.

POSSIBLE REMEDIES: Supplementation of lecithin or choline and inositol, the amino acids serine, taurine and methionine, and/or the enzyme carnitine transferase and phosphatidyl complexes.

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<== Previous Chapter Table of Contents Footnotes ==>

Footnotes

Notes to Chapter Three

1 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 65.

Notes to Sensory Processing and the Brain

2 Anne G. Fisher,et al., Sensory Integration: Theory and Practice, Philadelphia (1991) F.A. Davis Company, p. 185.

3 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 45.

4 Patricia M. Rodier, Ph.D (University of Rochester) “The Early Origins of Autism.” Scientific American (Feb. 2000) p. 61.

4a Patricia M. Rodier, Scientific American, p. 61.

4b Patricia M. Rodier, Scientific American, p. 62.

4c Patricia M. Rodier, Scientific American, p. 62.

5 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 75

6 Susan A. Greenfield, The Human Mind Explained, p. 50.

7 Susan A. Greenfield, The Human Mind Explained, p. 50.

8 Susan A. Greenfield, The Human Mind Explained, p. 36.

9 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p.44.

10 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 80.

11 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 74.

12 Jean A. Ayres, Sensory Integration and the Child, p. 37.

13 Jean A. Ayres, Sensory Integration and the Child, p. 62.

14 Jean A. Ayres, Sensory Integration and the Child, p. 71.

15 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 114.

Notes to Distal Senses and Motor Responses

16 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 33.

17 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 93.

18 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 36.

19 Jean A. Ayres, Sensory Integration and the Child, p. 71.

20 Patricia M. Rodier, Ph.D (University of Rochester), “The Early Origins of Autism,” Scientific American (Feb. 2000) p. 58.

20a Patricia M. Rodier, Scientific American, p. 59.

20b Patricia M. Rodier, Scientific American, p. 59.

20c Patricia M. Rodier, Scientific American, p. 61.

20d Patricia M. Rodier, Scientific American, p. 61.

21 Patricia M. Rodier, Scientific American, p. 61.

22 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 75.

23 Susan A. Greenfield, The Human Mind Explained, p. 100.

24 Susan A. Greenfield, The Human Mind Explained, p. 114.

25 Susan A. Greenfield, The Human Mind Explained, p. 85.

26 Susan A. Greenfield, The Human Mind Explained, p. 87.

27 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 120.

28 Jean A. Ayres, Sensory Integration and the Child, p. 95.

29 Jean A. Ayres, Sensory Integration and the Child, p. 93.

30 Beth Fouse; Maria Wheeler, A Treasure Chest of Behavioral Strategies for Individuals with Autism (1997) Arlington, TX, p. 58.

Notes to Chapter Nine

31 Bruce Baker,et al., Behavior Problems, Champaign, IL (1976) Research Press, p. 6.

32 Bruce Baker,et al., Behavior Problems, p. 28.

33 Patrick Rydell, Barry Prizant, “Assessment and Intervention Strategies for Children Who Use Echolalia,” Teaching Children with Autism, New York (1995) Delmar Publishers Inc., p. 110.

34 Bryna Siegel, The World of the Autistic Child, New York (1996)

Oxford University Press, p. 248.

Notes to Early Learning and Education

35 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 199.

36 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 44.

37 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 46.

38 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 56.

39 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 63.

40 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 95.

41 Alex Michaels (Educational Consultants of New England, Cambridge, MA), “Bateson Therapy,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 157-58.

42 Alex Michaels, “Bateson Therapy,” p. 157-58.

43 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 137.

44 Temple Grandin, Thinking in Pictures, p. 38.

45 Temple Grandin, Thinking in Pictures, p. 58.

46 Temple Grandin, Thinking in Pictures, p. 78.

47 Temple Grandin, Thinking in Pictures, p. 33.

Notes to Chapter Fourteen

48 Patrick Pydell, Barry Prizant, “Assessment and Intervention Strategies for

Children Who Use Echolalia,” Teaching Children with Autism, New York (1995) Delmar Publishers Inc., p. 125.

Notes to Atypical Thought Process

49 Robert Schultz, Ph.D (Yale Child Study Center), “Neuroimaging Studies of Autism: Static to Functional,” Current Trends in Autism Conference (Oct. 1999).

50 Robert Schultz, Ph.D, “Neuroimaging Studies of Autism,” Conference notes, p. 25-26.

51 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 28.

52 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc. p. 112.

53 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 45.

54 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc. p. 147.

55 Helen Tager-Flusberg, Ph.D, “Language Acquisition and Theory of Mind,” Current Trends in Autism Conference (Oct. 1999)

56 Alex Michaels (Educational Consultants of New England, Cambridge, MA), Current Trends in Autism Conference (Oct. 1999).

57 Alex Michaels, Current Trends in Autism Conference (remarks).

58 Alex Michaels, Current Trends in Autism Conference (remarks).

59 Alex Michaels, Current Trends in Autism Confreence (remarks).

60 Uta Frith, Autism: Explaining the Enigma, p. 117.

61 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 25.

62 Alex Michaels, “Executive Dysfunction,” Current Trends in Autism Conference (Oct. 1999) Notes, pp. 152-156.

63 Alex Michaels, “Executive Dysfunction,” Conference notes, p. 155.

Notes to Chapter Seventeen

64 Arnold Miller; Eileen Eller-Miller, From Ritual to Pepertoire, New York (1989) John Wiley & Sons

Notes to Brain/Body Biochemical Link

65 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 230.

66 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 47.

67 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 118.

68 Susan A. Greenfield, The Human Mind Explained, p. 118.

69 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 288.

70 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 66.

71 Susan A. Greenfield, The Human Mind Explained, p. 60.

60 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 265

72 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 67.

73 William Shaw, PhD, Biological Treatments for Autism and PDD, Shaw (1998) p. 130.

74 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 277.

75 Pamela Champe; Richard Harvey, Biochemistry, p. 272.

76 Pamela Champe; Richard Harvey, Biochemistry, p. 252.

77 William Shaw, PhD, Biological Treatments for Autism and PDD, Shaw (1998) pp. 295-96.

78 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 66.

Notes to Communication and Conversation

79 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 50.

80 Temple Grandin, Thinking in Pictures, p. 50.

81 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 105.

82 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 68.

83 Temple Grandin, Thinking in Pictures, p. 55.

84 Temple Grandin, Thinking in Pictures, p. 68.

85 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 98.

86 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 31.

87 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., pp. 92-93.

88 Uta Frith, Autism: Explaining the Enigma, p. 124.

89 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 55.

90 Bryna Siegel, The World of the Autistic Child, p. 55.

91 Susan A. Greenfield, The Human Mind Explained, p. 96.

92 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, pp. 53, 72.

93 Temple Grandin, Thinking in Pictures, p. 54.

94 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 120.

95 Jean A. Ayres, Sensory Integration and the Child, p. 120.

96 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 72.

97 Helen Tager Flusberg, Ph.D. “Understanding the Language and Communicative Impairments in Autism,” International Review of Research on Mental Retardation, Special Issue on Autism (1999). Current Trends in Autism Conference (Oct. 1999)

98 Helen Tager Flusberg, Current Trends in Autism, pp. 59-60..

99 Helen Tager Flusberg, Current Trends in Autism, p. 64.

100 Helen Tager Flusberg, Current Trends in Autism, p. 72.

101 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 134.

Notes to Chapter Twenty Three

102 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 136.

Notes to Chapter Twenty Five

103 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 78.

Notes to Lateralization and Memory

104 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 139.

105 Susan A. Greenfield, The Human Mind Explained, p. 139.

106 Susan A. Greenfield, The Human Mind Explained, p. 137.

107 Elizabeth A. Murray et al., Sensory Integration: Theory and Practice, Philadelphia (1991) F.A. Davis Company, p. 185.

108 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 139.

109 Elizabeth A. Murray, “Hemispheric Specialization,” Sensory Integration: Theory and Practice, Philadelphia (1991) F.A. Davis Company, p. 180.

110 Elizabeth A. Murray, “Hemispheric Specialization,” Sensory Integration: Theory and Practice, p. 191

111 Elizabeth A. Murray, “Hemispheric Specialization,” Sensory Integration: Theory and Practice, p. 191.

112 Elizabeth A. Murray, “Hemispheric Specialization,” Sensory Integration: Theory and Practice, p. 180.

113 Anne G. Fisher,et al., Sensory Integration: Theory and Practice, Philadelphia (1991) F. A. Davis Company, p.181.

114 Margaret L. Bauman, “Microscopic Neuroanatomical Abnormalities in Autism,” (Department of Neurology, Boston City Hospital & MGH) Pediatrics (1991). Also, “Neuropathology of Infantile Autism,” Current Trends in Autism Conference (Oct. 1999).

115 Robert Schultz, Ph.D., “Neuroimaging Studies of Autism; Static to

Functional,” Current Trends in Autism Conference (Oct. 1999).

116 Margaret L. Bauman, MD, “Neuropathology of Infantile Autism,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 16.

117 Margaret L. Bauman, “Neuropathology of Infantile Autism,” Conference notes, p. 14

118 Margaret L. Bauman, MD, “Neurobiology of Autism,” Current Trends in Autism Conference notes p. 9.

119 Stephen M. Edelson, Ph.D., “Autism and the Limbic System, Center for the Study of Autism, Salem, Oregon. Internet Website.

120 Stephen M. Edelson, “Autism and the Limbic System.” Internet Website. Also, Margaret L. Bauman, “Neurobiology of Autism,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 5.

121 Margaret L. Bauman, MD, “Neurobiology of Autism,” Conference notes, p. 5.

122 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 131.

123 Margaret L. Bauman, MD., “Neurobiology of Autism,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 7.

124 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 131.

125 Susan A. Greenfield, The Human Mind Explained, p. 131.

126 Margaret L. Bauman, MD., “Neuobiology of Autism,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 7.

127 Walter J. Freeman, “Chaos in the CNS: Theory and Practice.” (Internet website)

128 James L. McGaugh, Ph.D., Introduction to the Center for the Neurobiology of Learning and Memory, University of California, Irvine campus. Internet website.

Notes to Chapter Twenty Six

129 Jean A. Ayres, Sensory Integration and the Child, Los Angeles (1991) Western Psychological Services, p. 116.

130 Donna Williams, Nobody Nowhere, New York (1992) Times Books, pp. 213-214.

Notes to Social Behavior, Empathy and Emotion

131 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 61.

132 Bryna Siegel, The World of the Autistic Child, New York (1996)

Oxford University Press, p. 45.

133 Temple Grandin, Thinking in Pictures, p. 95.

134 Diane D. Twachtman, “Methods to Enhance Communication in Verbal Children,” Teaching Children with Autism (Quill), New York (1995) Delmar Publishers Inc. p. 135.

135 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 138.

136 Temple Grandin, Thinking in Pictures, p. 129.

137 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 134.

138 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 169.

139 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 154.

140 Elizabeth A, Murray, “Hemispheric Specialization,” Sensory Integration: Theory and Practice, Philadelphia (1991) F.A. Davis Company, p. 184.

141 Robert T. Schultz, Ph.D.(Yale Child Study Center),“Neuroimaging

Studies of Autism: Static to Functional,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 26.

142 Robert T. Schultz, Ph.D, “Neuroimaging Studies of Autism,” Conference notes, p. 26.

143 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 86.

144 Temple Grandin, Thinking in Pictures, p. 36.

145 Temple Grandin, Thinking in Pictures, p. 101.

146 Carol A. Gray, “Teaching Children with Autism to ‘Read’ Social Situations,” Teaching Children with Autism (Quill), New York (1995) Delmar Publishers Inc., pp. 222-232. (Also, The New Social Story Book, Jenison, Michigan (1994) Future Horizons)

Notes to Chapter Twenty Nine

147 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 32.

148 Kathleen A. Quill, Teaching Children With Autism: Srategies to Enhance Communication and Socialization, New York (1995) Delmar Publishers Inc. pp. 118-126.

Notes to Chapter Thirty

149 Kathleen A. Quill, “Enhancing Children’s Social Communicative Interactions,” Teaching Children With Autism, p. 181.

150 Kathleen A. Quill, “Enhancing Children’s Social Communicative Interactions,” Teaching Children With Autism, pp. 176-178.

151 Sabrina Freeman; Lorelei Dake, Teach Me Language, Langley, B.C. Canada (1997) SKF Books, p. 105.

Notes to Chapter Thirty One

152 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 93.

Notes to Chapter Thirty Two

153 Bryna Siegel, The World of the Autistic Child, New York (1996) Oxford University Press, p. 271.

Notes to Neuropeptides and Supplements

154 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 73.

155 Margaret L. Bauman, MD., “Neurobiology of Autism,” Current Trends in Autism Conference (Oct. 1999) remarks and notes, p. 10.

156 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 36.

157 Eric Hollander, MD.et.al. (Seaver Autism Research Center, Mt. Sinai School of Medicine, New York) “A Dimensional Approach to Autism Spectrum,” Current Trends in Autism Conference (Oct. 1999) remarks and notes, pp. 109-110.

158 Eric Hollander, MD.et.al., “A Dimensional Approach to Autism Spectrum,” Conference notes pp. 109-110.

159 Pamela Champe; Richard Harvey, Lippencott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 265.

160 Susan A. Greenfield, The Human Mind Explained, pp. 70,71.

162 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 76.

163 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews:

Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 266.

164 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 37.

165 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 246.

166 Eric Hollander, MD.et.al. (Seaver Autism Research Center, Mt. Sinai School of Medicine, New York) “A Dimensional Approach to Autism Spectrum,” Current Trends in Autism Conference (Oct. 1999) remarks and notes, pp. 111-112.

167 Eric Hollander, MD.et.al., “A Dimensional Approach to Autism Spectrum,” Conference notes, pp. 111-112.

168 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 226.

169 Susan A. Greenfield, The Human Mind Explained, New York (1996) Henry Holt and Company, p. 63.

170 Bernard Rimland, Ph.D, “Secretin Update, Dec. 1999: The Safety Issue,” Autism Research Review; Volume 13, No. 4, p. 3.

Notes to Chapter Thirty Three

171 Temple Grandin, Thinking in Pictures, New York (1996) Vintage Books, p. 132.

Notes to Chapter Thirty Four

172 Uta Frith, Autism: Explaining the Enigma, Cambridge, MA (1996) Blackwell Publishers Inc., p. 11.

Notes to Chapter Thirty Five

173 James F. Balch, MD; Phillis A. Balch, CNC, Prescription for Nutritional Healing: A-Z Guide to Supplements, New York (1998) Avery Publishing Group, p. 147.

174 James F. Balch, MD; Phillis A. Balch, CNC, A-Z Guide to Supplements, p. 46.

175 Pamela Champe; Richard Harvey, Lippencott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 309.

176 James F. Balch, MD; Phillis A. Balch, CNC, Prescription fo Nutritional Healing: A-Z Guide to Supplements, New York (1998) Avery Publishing Group, p. 68.

177 Diane Chugani, et.al., “MRS study implicates impaired energy metabolism in autism,” Autism Research Review, Volume 13, No.4,

p. 3. (In press, Progress in Neuro-Psychopharmacology and Biological Psychiatry, Volume 23, 1999, pp. 631-341.)

178 Pamela Champe; Richard Harvey, Lippencott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, pp. 323.

179 James F. Balch, MD; Phillis A. Balch, CNC, Prescription for Nutritional Healing: A-Z Guide to Supplements, New York (1998) Avery Publishing Group, p. 89.

180 James F. Balch, MD; Phillis A. Balch, CNC, A-Z Guide to Supplements, p. 132.

181 James F. Balch, MD; Phillis A. Balch, CNC, A-Z Guide to Supplements, pp. 119-120.

182 Paul Shattock (Autism Research Unit, Sunderland, England) “Back to the Future: An assessment of some of the unorthodox forms of biomedical intervention currently being applied to autism,” Internet Website.

183 James F. Balch, MD; Phillis A. Balch, CNC, Prescription for Nutritional Healing: A-Z Guide to Supplements, New York (1998) Avery Publishing Group, p. 145-46.

184 James F. Balch, MD; Phillis A. Balch, CNC, A-Z Guide to Supplements, p. 139.

Notes to Piecing the Puzzle Together

185 Sandra Blakeslee, “New Theories Help Explain Mysteries of Autism,” New York Times, Dec. 28, 1999

186 Sandra Blakeslee, “New Theories Help Explain Mysteries of Autism,” New York Times, Dec. 28, 1999. (Work of Margaret Bauman)

187 Sandra Blakeslee, “New Theories Help Explain Mysteries of Autism,” New York Times, Dec. 28, 1999. (Work of Margaret Bauman)

188 Lewis Mehl-Madrona, MD, Ph.D, “Autism: An Overview and Theories on its Causes,” (1999) Internet Website.

189 Pamela Champe; Richard Harvey, Lippincott’s Illustrated Reviews: Biochemistry, Philadelphia (1994) J.B. Lippincott Company, p. 3.

190 Lewis Mehl-Medrona, MD, Ph.D, “Autism: An Overview and Theories on its Causes,” (1999) Internet Website.

191 Lewis Mehl-Medrona, MD, Ph.D, “Autism: An Overview and Theories on its Causes,” (1999) Internet Website.

192 William Shaw, Ph.D., Biological Treatments for Autism and PDD, William Shaw (1998) p. 95.

193 William Shaw, Ph.D., Biological Treatments for Autism and PDD, p. 97.

194 William Shaw, Ph.D., Biological Treatments for Autism and PDD, pp. 126-127.

195 Lewis Mehl-Madrona, MD, Ph.D, “Autism: An Overview and Theories on its Causes,” (1999) Internet Website.

196 Eric Hollander, MD, et.al. (Seaver Autism Research Center, Mt. Sinai School of Medicine, New York), “A Dimensional Approach to the Autism Spectrum,” Current Trends in Autism Conference (Oct. 1999) Notes, p. 109.

197 Lewis Mehl-Madrona, MD, Ph.D, “Autism: An Overview and Theories on its Causes,” (1999) Internet Website.

198 Lewis Mehl-Madrona, “Autism: An Overview...” Internet Website.

199 Lewis Mehl-Medrona, “Autism: An Overview...” Internet Website.

Notes to Chapter Thirty Six

200 Jerry Newport, Ph.D, Current Trends in Autism Conference (Oct. 1999)

201 Patricia M. Rodier, “The Early Origins of Autism,” Scientific American (Feb. 2000), pp. 58-63.

202 Patricia M. Rodier, “The Early Origins of Autism,” pp. 58-63.

203 Sandra Blakeslee, “New Theories Help Explain Mysteries of Autism,” New York Times (Dec.28, 1999)

204 Anne Donnellan, Ph.D, “Invented Knowledge and Autism: Highlighting our Strengths and Expanding the Conversation,” In press, Journal of the Association for the Severely Handicapped) Current Trends in Autism Conference (Oct. 1999) Notes, p. 129.

205 Anne Donnellan, Ph.D, “Invented Knowledge and Autism,” Conference Notes, p. 128.

206 Anne Donnellan, Ph.D, “Invented Knowledge and Autism,” Conference Notes, p. 133.

207 Anne Donnellan, Ph.D, “Invented Knowledge and Autism,” Conference Notes, p. 138.

208 Anne Donnellan, Ph.D, “Invented Knowledge and Autism,” Conference Notes, pp. 137-38.

209 Jerry Newport, Ph.D, Current Trends in Autism Conference (Oct. 1999)

Notes to Appendix

210 Patricia M. Rodier, “The Early Origins of Autism,” Scientific American (Feb. 2000) p. 61.

211 Patricia M. Rodier, “The Early Origins of Autism,” p. 61.

212 Patricia M. Rodier, “The Early Origins of Autism,” p. 59.

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Baker, Bruce, et.al. Behavior Problems. Champaign, Illinois: Research Press. 1976.

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Grandin, Temple. Thinking In Pictures: And Other Reports from My Life with Autism. New York: Vintage Books, 1996.

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Siegel, Bryna. The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders. New York: Oxford University Press, 1996.

Williams, Donna. Nobody Nowhere: The Extraordinary Autobiography of an Autistic. New York: Times Books, 1992.

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