Published by Contract Consultants, Inc. through funds from the Temple University Institute on Disabilities/University Affiliated Program in cooperation with the Tri-State Consortium on Positive Behavior Support (1997)

TITLE: What We Are Learning About Autism/PDD

Times are changing in positive ways for people with autism/PDD and their families. Our understanding of this diagnosis is evolving rapidly, and outdated images of a mysterious, puzzling condition are fading fast. People with autism/PDD are being included in their schools and communities, and are demonstrating their capacity to enjoy friendships and everyday lives.

This publication is a response to our growing recognition that:o people with autism/PDD are a valued part of the spectrum of human diversity; o information about the many ways to support their development can be shared in a clear, accessible, and respectful manner; and o we are at the start of an important dialogue which has the potential to improve not only the lives of people with autism/PDD, but the humanity and creativity of the communities in which we all live.

Rather than providing a set of answers in one-size-fits-all fashion, these pages offer a way of organizing the questions before us and facilitating the dialogues which need to occur in the lives of Pennsylvania's citizens with autism/PDD. CONTENTS:

1. What's In a Name?2. What's In an Assessment?3. What's In a Methodology...or "How To"?4. What's In a Positive Approach?5. What Questions Should Parents Ask? Conclusion References

WHAT'S IN A NAME?Knowing the history and purpose of labels such as "autism" and "Pervasive Developmental Disorder" helps to put them in perspective. These labels represent human endeavors to classify and think about the problems developing children encounter, but they have little to tell us about the unique individuals who encounter these challenges, nor can they predict a person's future.

Where did the term "autism" come from, and what does it mean?

"Autism" is a theory-in-progress which continues to be researched and reconsidered. Starting in the 1940s, Leo Kanner, a researcher at Johns Hopkins, began to describe certain problems in the development of language, social, and cognitive skills which seemed to occur together in young children. He observed that some children appeared solitary despite the presence of others, and that these same children also seemed caught up in repetitive movements, noises, and routines (Kanner 1943). Fascinated by what he considered the "aloneness" of these young patients, Dr. Kanner named this syndrome "autism." While Kanner emphasized that these children grew up in strikingly different ways and experienced a wide variety of outcomes, their original cluster of symptoms was distinct enough to be considered a behaviorally-defined clinical syndrome. This means that a diagnostician must declare it present or absent by observing a person's actions, since there is no x-ray, blood test, genetic test, brain scan, or other method for making an autism diagnosis. Today there is much scientific evidence that the brains of people with this syndrome developed differently before birth, but these differences in brain organization are subtle and highly varied. An autism diagnosis is still made according to behavioral symptoms, although our appreciation of the nature and meaning of those symptoms has evolved enormously. Autism researcher Nancy Minshew, MD, reminds us that "The functional and structural abnormalities of the brain associated with autism have been completely redefined by research findings in the last decade..." (Minshew 1996: 205). This rapid progress has taken us far from where we were only ten years ago, when autism was believed to result from a single basic learning impediment such as a limited attention-span or inability to shift attention, an amnesiac disorder of memory, or an auditory processing deficit (Minshew and Rattan 1994), and even further from the theories of twenty years ago, when autism was considered to have psychological origins in the home environment. In contrast to these discarded theories, Minshew reports that current research methods "have provided evidence of a consistent profile of cognitive processing abnormalities at higher brain levels in both the motor and sensory systems." (1996: 207). In the light of our improved knowledge of neurological processing, we no longer assume, as Kanner did, that children with these symptoms are fundamentally asocial or unmotivated just because they do not respond in "typical" or expected ways. Today we are beginning to understand better how and why people with autism/PDD are coping with lifelong differences in their experiences and perceptions of the world.

Why are so many myths and misconceptions attached to the autism label?In the decades which followed Kanner's introduction of "autism," other researchers tried to decide where it fit among other syndromes and developmental problems, and ultimately to understand its etiology, or cause. Many false trails were followed. For awhile autism was thought to be a psychosis related to schizophrenia -- another syndrome which was poorly understood -- and therefore it was presumed to worsen over time. "Experts" who insisted that people with autism were inaccessible to human contact and incapable of much learning or

progress tended to place them in segregated settings and neglect their educations, treating them in ways which made these pessimistic descriptions into self-fulfilling prophecies. Books, magazines, and other news media portrayed these neglected people as examples of "autism," failing to recognize that they were really examples of people whose opportunities had been severely restricted.

Another theory, popularized in Bruno Bettelheim's infamous book The Empty Fortress (1967), insisted that autism was a type of psychosis caused by emotional deprivation inflicted by aloof parents. This theory attracted interest because it suggested that if the "cold" parents changed their ways, or the child was removed to a more motivating setting and compelled to give up the autistic behaviors, recovery might be possible. In this way many children and families were doubly stigmatized: first by the diagnosis, and then by their perceived failure or "refusal" to effect a cure.

Nowadays most families, educators, and professionals in the field have moved beyond the self-limiting terms of these old debates and turned their attention to demonstrating that people with an autism label can be sociable, interactive learners when they receive appropriate accommodations, that their differences in learning and perception are a comprehensible part of human diversity, and that successful outcomes for all people with disabilities can be measured by the extent to which they are supported in their efforts to enjoy full, rewarding lives based on their own interests and choices.

What is the relation of "Pervasive Developmental Disorder" (PDD) to autism?Many old misunderstandings about autism were officially put to rest in 1980 when the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III), a publication of the American Psychiatric Association, created the new diagnostic category of Pervasive Developmental Disorder (PDD) for autism and related conditions. This new term was meant to suggest the multi-faceted nature of these syndromes, in which social, language, and cognitive areas of development were "pervasively" or generally involved. The DSM-III emphasized that PDD differed in significant ways from mental health problems and from the types of symptoms which might occur due to neglectful or "cold" parenting, signaling an end to many inappropriate approaches to people with autism and to their families.

Within this new category, however, the labels continue to be shifted and rearranged. The DSM-III proposed three types of Pervasive Developmental Disorder, and these terms are sometimes still heard: Infantile Autism, Childhood Onset PDD, and Atypical PDD. In 1987 a revised DSM shrank the categories to two: Autistic Disorder, in which all of the characteristics originally noted by Kanner are present, and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS), in which many but not all of the symptoms were observed. The DSM-IV, published in 1994, reshuffled the symptoms to produce five varieties of PDD: in addition to Autistic Disorder and PDDNOS, it offers the options of Asperger's Disorder, Childhood Disintegrative Disorder, and Rett's Disorder. In brief, the diagnosis of Asperger's was intended to specify those children for whom

spoken language develops on schedule, despite the fact that social communication and interaction remain problematic. Childhood Disintegrative Disorder was intended as a diagnosis for children who seem to develop symptoms of social, language, and cognitive difficulties after the usual diagnostic window of 18 to 36 months but no later than age 10, although the DSM cautions that reports of such cases are very rare. Rett's Disorder, another rare condition which occurs only in girls, involves a sudden onset of severe problems in language development, as well as movement disorders such as constant hand-flapping or hand-wringing, after what had been a normal course of early infant development.

Since these labels continue to be experimental and subject to change, many diagnosticians do not care to use them; others are not accustomed to them and may use them inaccurately. In the meantime, parents, professionals and advocacy organizations have developed the practical approach of referring to the various PDD categories as "the autism spectrum," and of using the terms autism and PDD interchangeably, establishing a frame of reference which persists through the various revisions of the DSM. Pennsylvania's Department of Education recognized this common usage when it adopted Special Education regulations for "autism/PDD." This publication also uses these two terms to cover the traditional autism spectrum. While the DSM is widely used, it is not the only source of diagnostic terms. A committee of medical and therapeutic specialists working under the auspices of The National Center for Infants and Toddlers has developed an alternative system, called the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (DC 0-3), which focuses on the types of sensorimotor and relational challenges developing children may confront (National Center for Infants, Toddlers, and Families 1994). Within this system, a child classified through the DSM as having Pervasive Developmental Disorder might receive a diagnosis of Multisystem Developmental Delay. A number of fairly rare, non-mainstream diagnostic categories have also emerged from specific therapeutic fields: for example, some speech and language therapists utilize a diagnosis called "hyperlexia" which covers most of the symptoms generally associated with autism/PDD (Aaron 1989).

With so many different sources of information about the autism/PDD diagnosis. what should a critical reader keep in mind? Diagnostic labels like autism or PDD have certain important uses: they may connect us with a funding stream, provide the framework for implementing regulatory protections, give us a basis for accessing medical insurance, and give researchers a common language and common ground from which to work. More important from a parent's point of view is the fact that they may provide a point of connection to information and to the similar experiences of other families. However, in the case of autism/PDD those labels may also lead to many outdated theories and misinformation. Great caution and critical thinking must be exercised.

Families should keep in mind that autism/PDD is not a "thing" people "have," in the sense that a person might have an ear infection or a heart condition. People who receive autism/PDD diagnoses learn and change, and these labels may simply represent "freeze frames" in their developmental process. As tools for scientific investigation, the terms themselves are provisional, have changed over time, and will continue to change. Recent research has recognized that the wide variability among children diagnosed with autism is probably due to distinctly different etiologies. In 1995 a conference convened by the National Institutes of Health and titled "Autism: The State of the Science" concluded that the symptoms of autism may result from the actions and interactions of a wide variety of factors which are not yet understood, including infectious, metabolic, immunological, neurophysiologic, environmental, and genetic mechanisms. (Bristol, Cohen et al 1996) . As the Autism Society of America states, "...most professionals will agree that there is no standard `type' or `typical' person with autism." (ASA, current brochure).

It is also important to be aware that, while the symptoms of autism/PDD are now understood to have their roots in the central nervous system, the language used to describe those symptoms frequently fails to qualify as an objective medical description. Instead, diagnostic language often consists of impressionistic, unproven psychological assumptions and social judgments. "For the purpose of diagnosis," write Martha Leary and David Hill after an extensive review of the autism literature, "behaviors are often described with phrases such as "prefers to" "failure to" or "unusual interest in" without specifying what particular symptoms may lead to that impression." (Leary and Hill 1996: 40) For example, can we really know from a clinical observation of behavior that a child is "oblivious to other children" or involved in "nonfunctional routines or rituals," as stated in the DSM-IV description of Autistic Disorder (1994: 66-67)? Could it also be possible that the child is noticing others but unable to engage the appropriate signals to demonstrate interest, or that those routines have an important organizing or calming function? Diagnostic language has not always respected the difference between objectively recording the presence of a behavior and leaping to conclusions about the extent to which that behavior is under conscious control, the purpose it serves, the nature of the person's intentions, and what meaning the person brought to and took from the situation in which it occurred. Recognition of this widespread shortcoming is essential for critical reading of the literature on autism/PDD, and for a thoughtful, cautious approach to intervening on behalf of a person with autism.

Can a diagnosis of autism/PDD tell us about a child's future?Parents should beware of attempts to offer pessimistic predictions about their child's learning potential and what the future may hold. Pediatric psychiatrist Stanley Greenspan suggests that "the traditional pessimistic prognosis for PDD" may have had less to do with the nature of the syndrome than with traditional types of "mechanical, structures treatment approaches" which may have exacerbated these children's initial rigidity and limited development (1992: 3). Dr. Greenspan and his colleagues at the National Center for Infants, Toddlers, and Families urge that the nature of PDD be reconsidered on the basis that "children

originally diagnosed as PDD are learning to relate to others with warmth, empathy and emotional flexibility -- characteristics that run contrary to the very definition of PDD and that have been thought to be possible only for an exceptional few." (1992: 2-3)

The connection between diagnosis and prognosis is extremely tenuous and poorly understood. Much of the "data" currently quoted on this subject, suggesting that the presence or absence of certain symptoms correlates with the presence or absence of academic potential, job potential, or the capacity to live a full and happy life in the community, may be as much historical artifacts of the way the symptoms of autism have been interpreted and treated as of any necessary consequences of the syndrome. Charles Hart, who has both a brother and an adult son with autism, captures the enormous impact of changing social expectations when he writes of his son, Ted:

"Ted isn't perfect; he's human. Twenty years ago we wanted a miracle that would make our son's life better than his uncle's had been. The miracle didn't come in a flash of light, or a quick response to treatment, so we didn't notice, until looking through our family album. Then we saw the miracle. School pictures, including graduation and the senior prom, showed how rich our son's life had become. How rich it could have been for my brother, if he'd been born in 1970, instead of 1920! If your child is even younger than mine, he or she will be even luckier." (1993: 2)

As Charles and Ted Hart discovered, autism is no longer considered a barrier to a full and happy life. Today people with autism, including those with very complex challenges, can be found living in their communities, attending their neighborhood schools, participating in their church or synagogue, riding public transportation, working competitively through supported employment, and even forming or joining advocacy groups to help each other and make their voices heard.

Should a child's diagnosis of autism/PDD dictate decisions about school or treatment?A broad-brush, highly variable diagnosis like autism should not be taken to indicate that the child must be plugged into an "autism therapy," "autism behavior plan," or "autism program." For that reason both the federal Individuals with Disabilities Education Act (IDEA), and Pennsylvania's own State Regulations and Standards for Special Education, require that educational placement decisions be based on the individual needs of students, as determined by multidisciplinary evaluation or reevaluation and an IEP team planning process, rather than being based on "category of eligibility."

Non-categorical decisionmaking should be driven by individualized assessment. As defined in New Visions for the Developmental Assessment of Infants and Young Children, this should be "a process designed to deepen our understanding of a child's competencies and resources, enhance our perspective on the caregiving and learning environments most likely to help a child make fullest use of his or her developmental potential, and describe the essential connections between

assessment and intervention." (1996: 6). This endeavor to understand and support the development of the whole person, rather than a process of matching a person's deficit label to a program's label, should describe the nature of the ongoing, collaborative investigation in which parents and service providers are engaged. Further down the road, it should remain the process in which adults with disabilities and those who support them continue to engage.

WHAT'S IN AN ASSESSMENT?Autism/PDD, like the elephant in the parable, has many different aspects, and wise people can approach it in many different ways. Perhaps the wisest of all are those who can step back and recognize that all of these parts are interrelated into a larger whole.

Since the symptoms of autism/PDD vary widely, what are some of the factors we should observe and consider in our assessment process?We all need to sit down from time to time and assess our lives: what's working well, what's giving us problems, what environments bring out the best in us, what new skills we need to learn, and what are the logical next steps in our personal development. The questions to be considered for a person with autism are the same. To help answer these questions, we may require the support and expertise of people such as: a physician, speech pathologist, occupational therapist, psychologist, special educator, and others whose knowledge and involvement are important to the person's life. As this team works together to learn about the child or adult, the following areas will be important to consider.

COMMUNICATIONIt is not unusual to find a variety of communication disorders among any preschool or school-aged group of children. Many young students have specific problems with expressive or receptive language; some will be discovered to have a hearing impairment. However, those children who will be diagnosed with autism/PDD seem to encounter a more broad-based difficulty which interferes with social communication and social interaction as well as the development of language. These children may have body language, gestures and facial expressions which are difficult to read, and in turn they may have trouble interpreting and responding to the nonverbal communication of others. The impact of this problem becomes apparent when we consider that only about seven to ten percent of the meaning of a verbal utterance is carried by the words themselves, while the rest of the meaning is carried by a variety of nonverbal cues (Twachtman-Cullen 1997: 11).

The development and use of language can be challenging for people with autism/PDD. While some are able to use language with a great degree of flexibility, their rate of speech, intonation, and other vocal qualities may be unusual enough to disrupt the meaning they intend to convey. Their conversational flow and timing may not match the usual expectations; in particular, many people with autism seem not to process language within the timeframes expected in typical conversation. For other people with autism/PDD, verbal communication seems to be called forth with great difficulty, like a foreign

language which has to be memorized and repeated from a phrase book. Some people have no spoken language, but when provided with alternative communication methods may have a great deal they wish to express. Systems such as the Picture Exchange (Bondy and Frost 1994), as well as augmentative and alternative communication systems and facilitated communication (Barker 1993; Biklen and Cardinal 1997; Crossley 1997), have helped many individuals with autism establish lines of communication with those around them.

A number of researchers believe that these social communication problems are the core of autism/PDD, and that the other behaviors associated with the syndrome may develop secondarily, as the cumulative effects of missed and mis-communication. This suggests that the earlier communication problems are addressed, the better. Amy Wetherby and Barry Prizant, who have made extensive studies of the development of children with autism/PDD, suggest that "Assessment of language and communication in young children should occur in authentic, interactive contexts, with the child's caregiver integrally involved as an active participant, informant, and collaborator in decisionmaking. Furthermore, assessment should be viewed as a dynamic process of identifying a child's relative strengths and weaknesses in communication and related areas, as well as understanding the child's capacity for developing communicative competence." (1996: 308).

SENSORY AND MOVEMENT REGULATION Over two decades ago, one of the pioneers of autism research, Lorna Wing, MD, constructed a classic definition of autism which listed among its characteristics unusual responses to sensory experiences, problems of motor imitation and motor control, and abnormalities of autonomic and vestibular function and control (Wing 1976; 1975). Neurologist Oliver Sacks adds to this list, noting that many such children manifest "`soft' neurological signs and symptoms -- a whole range of repetitive or automatic movements, such as spasms, tics, rocking, spinning, finger play, or flapping of the hands; problems of coordination and balance; peculiar difficulties, sometimes, in initiating movements, akin to what is seen in parkinsonism." (1995: 245). A recent study by Martha Leary and David Hill surveyed the autism literature to find a wide variety of movement disturbance phenomena which corresponded to typical clinical features of movement disturbance as described in relation to other conditions, such as Tourette Syndrome and akinesia/dyskinesia (1996). The work of Anne Donnellan, PhD, in conjunction with Martha Leary, traces a variety of movement differences affect not only actions, but speech, thoughts, perceptions, and emotion (1995).

As more people with autism commit their experiences to books and articles, they are telling us how overwhelming their sensory experiences can be. Temple Grandin's first book, Emergence, Labeled Autistic (1986, republished 1996), centered on the excruciating effects which tactile sensitivities wreaked on her nervous system, and on her eventual discovery of ways to mitigate some of these effects: "Tactile stimulation for me and many autistic children is a no-win situation. Our bodies cry out for human contact but when contact is made, we withdraw in pain and confusion. It wasn't until I was in my mid-twenties that I

could shake hands or look directly at someone." (1986: 32-33) After tactile sensitivity, sound sensitivity is probably the most frequently-discussed sensory problem in this autobiographic literature. "It was much easier getting my wisdom teeth pulled than to be in noisy surroundings," reports Barbara Moran, for whom noise are experienced as physically stressful (1997: 18). The existence of certain types of sound sensitivities has been corroborated by independent researchers such as William Condon, who confirmed by a process called sound-film microanalysis that some individuals with autism experience auditory echoes which may interfere with their ability to comprehend speech and to organize an appropriate and timely response (1985).

In Autism: Handle with Care (1996), Gail Gillingham has compiled the comments and suggestions of numerous people with autism concerning their sensitivities across all modalities: tactile, auditory, visual, olfactory, and taste. These disturbances in the regulation of sensorimotor experience have a potentially enormous impact on child development, on the ability to explore and make sense of the world, and on the ability to interact with and to have one's behavior understood by others.

The National Center for Infants, Toddlers, and Families has become a leader in the study of childhood regulatory disorders, and the Center's research and publications focus on developmental considerations of how a child's biologically-based auditory/verbal, visual/spatial and perceptual/motor processing difficulties will "play out" differently in different experiential and treatment contexts. Stanley Greenspan has identified five different biologically-based regulatory profiles based on various combinations of motor planning problems, under- or over-reactivity to sensory stimuli, and information processing difficulties: "Contrary to the belief that all of us experience basic sensations similarly, we have found that children vary considerably in how they perceive sights, sounds, touch, odors, and movement patterns. A child may be overly sensitive and overreactive or undersensitive and underreactive to a given sense, while another may have difficulty in comprehending information through that sense. We have observed that some children are gifted in their ability to plan complex behaviors and movement patterns, while others find even the most elementary sequencing of motor acts, such as putting their fingers in their mouths, a most perplexing task." (1995: 4). For each type their are certain "best approaches" which fit the child's needs like a key to a lock, while inappropriate interventions may only compound the child's challenges.

LEARNING DIFFERENCESProblems with communication and with sensory and movement regulation can contribute to a variety of learning differences. "Some educators call autism the ultimate learning disability," write Charles Hart, EdD, "not because the students can't learn, but because their teachers need to discover the individual's learning style." (1993: 107). Fortunately, as society's awareness of and respect for learning differences steadily increases it is becoming easier to find information and understanding about the needs of people with various learning styles. Frames of Mind (1983), Howard Gardner's exploration of different types

intelligence, suggested new ways for educators to think about presenting information and discovering the optimum learning environments for each individual. Some people, Gardner proposed, are linguistic learners who easily master complex grammatical rules and feel at home within the shifting nuances of human language; others are logico-mathematical thinkers, adept at abstract reasoning about the properties of physical objects; musical thinkers perceive meaning and communication in sets of pitches; spatial thinkers problem-solve by visualizing detailed images; bodily-kinesthetic thinkers learn and communicate best by interacting physically with their environment; while those with personal intelligence are gifted interpreters not only of their own feelings, motivations and intentions, but those of others.

Gardner's classic categories can illuminate many examples of learning differences which are found in the autism literature. For example, in Thinking in Pictures (1995) Temple Grandin argues that many people with autism are visual/spatial learners who store, retrieve, and consider information by means of vivid mental pictures, and who will be helped by learning systems which appeal to visual rather than linguistic skills. Donna Williams' numerous publications (1992; 1994; 1996) offer a fascinating portrait of a person who has struggled to develop her linguistic and personal intelligence in the face of highly unreliable bodily-kinesthetic information. For Williams, this input is difficult to integrate because she can only maintain awareness of one sensory channel -- vision, sound, taste, smell, or touch -- at a time. For such a person, the ideal learning environment would be one in which extraneous channels could be "switched off."

It is interesting that much recent research into learning disabilities such as Attention Deficit Disorder or Dyslexia suggests that they too are often accompanied by difficulties in sensorimotor regulation and communication. The ever-growing research on accommodations and adapted curricula to support different learning styles offers a rich source of information for assessing what works best with each individual child.

FURTHER INFORMATION: For more detailed information, references, and resources concerning the process of developmental assessment, you may wish to consult New Visions for the Developmental Assessment of Infants and Young Children, edited by Samuel Meisels and Emily Fenichel, published by Zero to Three/National Center for Infants, Toddlers, and Families in 1996.

Once we have translated the generic label of autism/PDD into a personal profile, are there other factors to be considered?Not everything can be seen through the lens of "autism." Just because a person receives a diagnosis of autism or PDD, we cannot automatically assume that everything he or she does is symptomatic of this disability, nor can we assume that the basic human needs and wishes of a person with a disability are any different from those of a person without a disability.

HEALTH AND HUMAN DEVELOPMENT

All people grow from childhood through adolescence to adulthood, with the changing needs and expectations which development entails. Yet too often the same adults who respond calmly and philosophically when a non-autistic child goes through the "terrible twos" or a period of adolescent rebellion, will interpret similar behaviors in a child with autism as a sign of worsening symptoms or regression, and may organize an inappropriate response. Schools sometimes confuse disability label with age level, assuming, for example, that there is little difference between an 18-year old with disabilities and an 8-year old. When this happens, teachers may not understand why their 18-year old student is no longer content with the same classroom activities he enjoyed 10 years ago, and may suggest a new behavior plan or medications to restore a "status quo" that can no longer exist. By the same token, if people diagnosed with autism/PDD develop biologically-based psychiatric disorders, the symptoms may be mistakenly assumed to be part of their autism and either left untreated or handled in ways which exacerbate their impact. "In the past," writes Dr. Christopher Gorton, "it was believed that individuals with developmental disabilities were incapable of being affected by the mental illnesses that afflict the rest of the population. Therefore, any difficult behavior they exhibited was not a symptom of treatable illness but a problem to be suppressed." This treatment was often in the form of antipsychotic medications and amounted, notes Dr. Gorton, to "the inappropriate and potentially dangerous use of sedation to suppress unwanted behavior." (1996: 15) Equally inappropriate is the sole reliance on medication or behavior plans to "readjust" the person, when it is may be the limited and lonely circumstances of the person's life which need readjustment.

As we identify more parts of the autism/PDD "elephant," some of them are emerging from the mysterious aura which once surrounded an autism diagnosis. Medical researchers are beginning to make a case for reconsidering the meaning and treatment of perception and movement-related aspects of the autism syndrome, casting them into a broader context of more widespread and well-understood neurological and psychiatric conditions. Hyperactivity, short attention span, impulsivity, verbal and motor stereotypies (repetitive behaviors), excessive fearfulness, and episodes involving loss of control and potential injury are symptoms and behaviors traditionally viewed as "associated features" of autism, and have been subjected to behavioral modification techniques by many professionals. However, the effectiveness of behavioral interventions on these symptoms has often proved limited or nonexistent. Emerging clinical data now suggest a different approach: that these symptoms be considered in relation to attention-deficit hyperactivity disorder, obsessive-compulsive disorder, tic disorders, anxiety disorders, and affective disorders such as bipolar disorder, unipolar disorder, or depression, and that the psychopharmacological treatments appropriate to these conditions be considered (Tsai and Ghaziuddin 1996).

A great deal of documentation already exists for the development of convulsive seizure activity in at least 25% of children and adolescents with autism/PDD. However, the impact of nonconvulsive seizure activity, which does not involve loss of consciousness, may be just as great and remains largely unrecognized. This

type of subclinical seizure may result in movements that appear intentionally aggressive or self-injurious, and may be misdiagnosed as a behavior problem, psychological disorder, or temper tantrum (Gedye 1991; 1996). Some experts have suggested that another potential explanation in some cases of sudden-onset, baffling behaviors may be Post Traumatic Stress Disorder (PTSD), which can originate in acute experiences of danger and vulnerability and result in periodic, uncontrollable recurrences of the original physical response (Lovett 1996: 207-209)

Sorting the symptoms of autism/PDD from the symptoms of a mental illness such a depression, a neurological condition such as nonconvulsive seizures, and other unrecognized medical conditions, requires caution and care. Undiagnosed illnesses, injuries or infections must be ruled out as causes of the symptoms in question, including conditions which are chronic but periodic, such as migraine headaches or seasonal allergies. It may also be useful to consider the possible role of nutritional deficiencies and of allergies and sensitivities to food, medications, and other aspects of the environment, on human development and behavior. We do not know whether people with developmental disabilities encounter these problems more frequently than their peers, but it is possible that their effects on behavior may be magnified for those who are already experiencing difficulty with sensory regulation. Because diagnoses of psychiatric conditions typically depend on extensive and reliable self-reporting of symptoms, many people with autism/PDD may not be in a position to provide sufficient information. Careful observation and data-gathering over time, as well as creative approaches to the development of communication, will be required to generate useful hypotheses about the meaning of the symptoms in question. "It may surprise many people to learn that despite all of our incredible modern biomedical technology, a medical history is still the cornerstone of all diagnoses," cautions the author of a recent guide to psychiatric treatments. "All the tools at the disposal of today's physician are used to confirm or rule out the diagnostic impression a doctor gets from asking the patient what is wrong." (Gorman 1966: 166). Given our growing awareness that the DSM and other diagnostic sources have sometimes been guilty of jumping to conclusions about psychological states based on decontextualized observations of behavior, this emerging branch of psychopharmacology should be in a position to avoid similar traps.

We should also be aware that, while pharmacological approaches to various symptoms associated with autism/PDD show great promise (McDougle, Price, et al 1994), this is so far an understudied and underdocumented area. The relationships among the various parts of the autism "elephant" are not well understood, and dual diagnoses may sometimes represent random co-occurrences, sometimes different manifestations or stages of the same condition, and sometimes separate conditions with related genetic or environmental causes (Kraemer 1996: 152) . We must remain sensitive to the fact that two behaviors which look alike may not respond alike to medication because their roots may be quite different.

Finally, we should be clear about the complex relationship between medication and behavior. "Medicine doesn't change behavior!" parent and educator Charles Hart emphasizes in A Parent's Guide to Autism. "Instead, a drug affects the biology of the body. If a behavior grows out of the body's chemistry and the drug changes that chemistry, the behavior may change as a result. That's a biological chain reaction, not a pill's direct signal to the brain that changes one, and only one, behavior." (1993: 51). Furthermore, most psychiatric conditions require far more than medication for a full chain reaction to occur; there must be appropriate changes in the circumstances of the person's life, as well as ongoing support to help the person develop new insights and coping strategies. While there are no medications which can be targeted toward the difficulties with language and social behavior considered central to autism/PDD, psychopharmacologists hope that the alleviation of interfering conditions may start a chain reaction which will free people with autism/PDD to develop their social and communicative potential more fully. Medical, neurological, and psychiatric assessment may answer important questions that a diagnosis of autism/PDD cannot address.

INTERESTS AND CAPACITIESWe all do best when encouraged to pursue those interests and abilities which are most meaningful to us. Even an enthusiasm which at first glance seems narrow can ultimately be linked to a potentially limitless array of other topics and ideas. A classic and dramatic example is Temple Grandin's childhood "fixation" on cattle holding pens, which evolved into her development of a simple machine to provide herself with controllable tactile stimulation, and which then evolved into an interest in the physiology of such experiences, a degree in animal science, and an international consulting business in the design of livestock facilities (Grandin 1986). A Pennsylvania family tells the story of their son who, after pursuing for many years a deep interest in looking at storage tanks, gradually shifted his focus to building an extensive collection of laboratory tubes and beakers (mini-storage tanks), then developed an interest in the compounds and solutions which were typically put into these containers, and eventually began pursuing the study of chemistry with great energy and pleasure. Each assessment process should take note of the person's natural interests so that they can be engaged and appreciated.

FRIENDSHIPS AND RELATIONSHIPSRecent research into the neurobiology of development reminds us that our emotional and intellectual lives are not separable; rather, the foundations of cognitive development are in the daily experiences of human interaction which forge meaningful connections between our personal feelings and the larger world of actions, words and ideas. Sean Barron recalls experiencing such an epiphany when, upon moving to a new high school, he was included in other students' activities for the first time: "Several other kids came over and sat down, and I was introduced to all of them. Everyone chatted about school, but I couldn't really hear them -- there was a kind of hum inside me that I later realized was happiness. I was very aware that, as they talked, they looked at me too, that they were including me in their group. I believe I'll never forget that day." (1992: 218)

Unfortunately, for people diagnosed with autism/PDD the need for relationships is too often overlooked or considered merely "optional." Sometimes there is a perceived need to "teach social behaviors" before engaging in social situations. Yet, as educational consultant Carol Gray reminds us, "What we say, how we say it, and what we do is far more complex than most of us realize. I believe it's important to look closely at ourselves to understand the social challenge we present to people with autistic spectrum disorders." (Gray 1996: 9). Parents and professionals might consider including themselves and the challenges presented by their "neurotypical behavior" in the assessment process.

EVERYDAY LIVESWhile people with autism may have "equal access" to typical human development issues, many nonautistic people notice that they share some of the behaviors associated with autism, especially when they feel overwhelmed or stressed. They may retreat from conversation and become irritable when the sounds of a shopping mall "get to them." When startled by a sudden loud noise, they may find themselves responding with an unplanned, uncontrollable gesture of self-defense. They may calm or focus themselves with certain behavior rituals, such as tapping out the same tune over and over on their car's steering wheel while waiting for the traffic light to change. They may have certain routines, such as always taking the same route through the same grocery store, which seem to serve as memory cues, and other routines, such as never stepping on sidewalk cracks, which they can neither explain nor abandon.

Herb Lovett suggests that we also consider some of the negative, judgmental terms used to assess the behavior of people with autism/PDD, and see how well they fit our own lives. For example, anyone who has ever phoned a friend just because they felt like talking is guilty of "attention-seeking behavior." As for the frequent verdict that people with autism are "noncompliant," Lovett observes, "No one of my acquaintance has ever said, `I am proud to do what I am told without question.'" (1996: 49-50). It can be enormously helpful and "de-mystifying" to take note of the many responses, reactions, and coping strategies which people with autism and people without have in common.

What's in a Methodology....or "How To"?Methodologies, "matched sets" of strategies and goals for intervention, can be investigated as we get to know the individual through careful assessment. Different methodologies are motivated by different theories about the nature of autism and employ techniques and goals which may be educational, supportive, or medical in nature. While they are sometimes packaged and sold by brand name, it is vitally important to check and question the ingredients.

What types of methodologies are currently used to help people with autism/PDD?The most prominent and productive approaches to intervention are either educational, meaning that the person is taught better ways to adapt to the

environment, or combine education with accommodations and supports, meaning that the environment (including people) is also taught to become more flexible and adaptive in the face of different needs.

The National Institutes of Health report that there is "no biological marker, no cure, and no psychopharmacological treatment specifically for the core symptoms of this lifelong disability." (Bristol and Volkmar 1996: 116). However, a number of medically-based treatments involve attempts to alleviate, and occasionally claims to "fix," a person's autism either by adjusting aspects of their vision, hearing ability, or other sensory problems, or by altering a person's metabolism and biochemistry. Different people have always reported very different results with a wide variety of such interventions, from listening to frequency-adjusted musical tapes (Auditory Training), eye exercises (Visual Training), or the wearing of colored glasses (Irlen lenses), to biochemical readjustment through the ingestion of certain vitamins such as B6, nutrients such as DMG, or specialized diets, and even immunodefiency treatments such as intravenous gamma globulin infusions. While new suggestions are continually being added to this repertoire, basic lists can be found in Charles Hart's A Parent's Guide to Autism and in Elizabeth Gerlach's Autism Treatment Guide.

Mechanisms to justify many of the sensory remedies are unclear. As Nancy Minshew, MD has shown, there is no evidence in studies to date of "abnormal or erratic transmission of sensory input to the cerebral cortex" (1991: 778). Rather than being neatly attributable to some malfunction of the ears or eyes, the difficulties faced by people with autism seem to be traceable to "the larger neural network of association cortex involved in complex information organization and processing." (1991: 779). From her observations of movement and sensory integration in children with autism, occupational therapist Jean Ayers also concluded that the basic nerve tracks to the brain are functioning adequately: "Some other aspect of sensory processing is causing the problem; some other part of the brain is not working well." (1979: 124). At this time, it is difficult to find a convincing rationale which connects many of these sensory remedies with what we know about information processing in the brain. The biochemical therapies are particularly problematic, having been tried to little avail with other neurological syndromes, and sometimes posing risks which call for careful consideration and medical supervision. While some of these approaches may be intriguing to investigate, they are no substitute for the lifelong benefits of an appropriate education.

What makes an education appropriate? Every person's education should be tailored to his or her individual capacities, interests, and needs. Students whose growth and development are hindered by challenging behavior, whatever their diagnosis, are entitled to an individualized behavior support plan within their IEP. When many of a student's needs are considered to stem from something called autism/PDD, it is crucial to understand the explanation or belief system on which the proposed educational approach is based. The alphabetical typology which follows gives a general idea of some of the different methodologies and the views of autism which drive them. However,

it cannot be definitive because different people will slice the issues in different ways, because names (especially brand names) come and go, and because most people "mix and match" to suit individual needs rather than committing themselves to one approach. For example, the team planning framework and formats outlined in the Pennsylvania Department of Education Guidelines on Effective Behavior Support lend themselves to integrating various approaches in a holistic manner to address individual needs.

APPLIED BEHAVIORAL ANALYSIS (ABA), a.k.a. Functional Assessment or Analysis, is not an actual teaching method although it is often described as such. Rather, it is a process of gaining an understanding of the person, the problem behavior, and the circumstances under which that problem behavior is more likely and less likely to occur. The term "functional" in this sense means a search for the explanation of the purpose of the problem behavior and that the information gathered to this end will be used functionally to design and implement an individualized plan. Typically, the assessment process combines qualitative information in the form of interviews and rating scales with quantitative information in the form of direct observational data gathered over time to uncover trends. Particular emphasis is given to the development of communication as a replacement for problem behavior (Carr, Levin, et al 1994).

While the roots of functional assessment or analysis rest within what is considered as one common behavioral framework, a progressive expansion of this perspective is emerging. Larger quality of life factors are being incorporated in tandem with the specifics of behavioral practice. One example of this is the Pennsylvania Department of Education's Guidelines on Effective Behavior Support, where both broad, global hypotheses about the context of a student's behavior, and specific hypotheses about what may work best for that individual, are called for in the design phase of personal behavior support plans. In this way an analysis or assessment may lead to a plan which incorporates environmental modifications, supports and accommodations, and individual interests and preferences, as well as drawing on various behavioral teaching strategies outlined below:

Behavior Modification -- This term is used to cover a wide spectrum of strategies historically aimed at the elimination of behaviors considered undesirable and the increase of personal independence through the systematic teaching of activities judged more acceptable or useful. The learning of new behaviors is generally motivated by a system of rewards and undesirable consequences; however, some practitioners insist that only win-win systems, carefully set up so that the person can only experience and be motivated by some measure of success, are acceptable. While behavior modification is incorporated to different degrees in different educational programs, in some programs "behavior shaping" through behavior modification is the predominant activity.

A number of difficulties are inherent in the exclusive use of traditional behavior modification: the behavior to be changed may serve a purpose in the person's life which has not been understood or addressed, in which case its elimination will

only result in a similar activity emerging to fill its place; the behavior may not be under the person's direct control, and thus may not be accessible through the cause-and-effect relationship set up by rewards or consequences; motivation must be considered with care, since what one person experiences as rewarding may effect another in negative ways; and both the artificiality and specificity of many behavior modification systems may work against the generalization of what has been learned to other environments.

Discrete Trial Training -- This teaching strategy has sometimes been referred to as Applied Behavior Analysis (ABA) or Lovaas Training, although all of these terms have different roots in the behavioral literature and are not actually the same. Discrete trial training is simply a means of teaching how to perform a particular activity by breaking it down into simpler components, which can then be rehearsed individually and chained into a complete sequence (Lovaas 1980). It can be used within other educational methodologies as a way of teaching the steps needed in completing a sequenced task, and is particularly directed toward children who have significant motor planning difficulties. Faced with the task of setting a table, for example, the child may see the arrangement as a whole and be discouraged at its apparent complexity. By breaking it down into a series of simple, repeatable steps involving placement of plate, napkin, and utensils, the job becomes comprehensible. While discrete trial training has been documented as effective in teaching linear, chainable skills sequences, its efficacy has been called into question when teaching behaviors which, by their very nature, need to be inter active rather than re active and sequenced. Language and social interactions are not necessarily linear, chainable skills.

While evolution within the behavioral framework is occurring based on broader quality-of-life perspectives, there are also forms of training that adhere to a strict discipline or methodology. One such approach has been typically described as Lovaas Therapy or Training. This model advocates for exclusive adherence to the view that all behavior is a series of discrete skills which can be selected and sequentially taught in a one-to-one format using a system of cues, drills, and rewards. This approach typically requires extensive training time over a number of years (e.g. 30-40 hours per week) with the intended result of what is termed "recovery." A perspective on this viewpoint may be gained by considering its roots, which go back to the 1960s and '70s when little was known about the neurobiology of learning in typically-developing children, much less in children with autism. Without a framework for thinking about atypical development at that point in time, some therapists assumed that children with autism lack the innate will-power or motivation to problem-solve and learn, and therefore that the teacher or parent must contribute all structure, content, and reinforcement for all learning situations.

Other Behavioral Techniques -- In addition to this approach to assessment, a great variety of other specific behavioral strategies such as modeling, shaping, chaining, and prompting behaviors, and offering physical or written guidance, schedules, or cues, are discussed in the literature. Not all are intended as traditional behavior modification (e.g. eliminating or replacing an undesirable behavior); some of these strategies can be of practical help for an

individual's self-organization or in getting a stalled activity "unstuck." A recent resource which details these behavioral techniques is Teaching Children with Autism (1995), edited by Robert Koegel and Lynn Kern Koegel. None of these strategies is intended to be used by itself, as an entire program. Rather, they represent an array of teaching techniques to be used on an as-needed basis. The continuing evolution of the behavioral framework is resulting in the development of an increasing number of support plans which reflect a multi-component approach to be employed within the broader context of full school and community inclusion, natural environments, supportive friendships, and personal interests and preferences.

DEVELOPMENTAL OR RELATIONSHIP-BASED APPROACHES These approaches are usually understood to include strategies based on Sensory Regulation/Sensory Integration, Movement Differences, and Social Skills Training. The underlying premise is that children with complex sensorimotor regulator problems tend to fall off the typical developmental track over the first few years of life, producing the appearance of aimlessness and withdrawal first noted by diagnostician Leo Kanner. A developmental approach views autism as potentially responsive to treatment, although not `curable' per se, by helping the child re-enter typical developmental sequences more effectively. The goal is promotion of a sense of relatedness, of emotional contact with other individuals, that serves as a catalyst to knowledge acquisition and skills development, rather the immediate exposure to, and retention of, substantive facts.

This emergence of real investment and emotional reactivity on the part of the child marks the beginning of the crucial developmental sequence which first links sensation to emotion, then emotion to meaning as it will come to be embodied, through a child's experiences of people, in gesture and touch, later in words, and still later in the greater abstractions of ideas and concepts. Relationship-based or developmental approaches attempt to propel this process as far as possible by engaging the child's natural motivation as its engine, in preference to constructing an engine out of rote skill acquisition fueled by artificial prompts. Many child development specialists believe that while the "more mechanistic behavioral approaches" to teaching skills may result in some progress for children with autism/PDD, it is "not of the same caliber" as that achieved by supporting the child's emotional development as a natural motivator (Greenspan 1997: 67). One of the best-known relationship-based approaches is the "floor time" strategy developed by Stanley Greenspan. This intensive, family-centered approach involves the coaching of parents into very purposeful play strategies which nevertheless allow the child to take the lead. For example, if the child wants to line up cars or twirl a top, the parents are coached to join the child in this preferred activity (with the intention of developing this action into an affective, emotion-driven interaction) rather than insisting that the child join them in their preferred activity (a process which, at best, will produce no more than rote action and reaction). Starting with this mutual, shared engagement, the parents are assisted to draw the child into increasingly more complex interactions, a process

known as "opening and closing circles of communication." For example, the parent may begin to take turns with the child who is lining up cars, until the child begins to expect and wait for the parent's turn. Then, the parent may "accidentally" place a car in the wrong spot, tempting the child to open and close a circle of communication as he corrects his parent's error. Strengthening this fledgling ability for meaningful interaction, rather than teaching compliance, correcting or extinguishing "fixations," or simulating "normal" behavior, is the first order of business in the relationship-based approach, since it is believed that all other emotional, social and cognitive behavior must develop from this foundation.

A number of other approaches to autism, such as the Options Method popularized through the book and the movie Son-Rise, are variations on the theme of relationship-based teaching (Kaufman 1976; 1994). Gentle Teaching, pioneered by John McGee, is a popular strategy based on the insight that many people with behavioral challenges come to associate learning situations with negative human contact and compliance battles, and respond by withdrawing. McGee found that when the learning experience was reconfigured into a completely positive, accepting activity, even people who had been considered "unreachable" learned and thrived. (McGee 1987; McGee 1991). The technique called Holding Therapy (Welch 1987), with its premise that the missing developmental sequences involved in infant bonding can be rebuilt by forcibly hugging and holding the child for extended periods of time, may actually be an abbreviated attempt to address a child's relationship problems, in the absence of a clear understanding of the complex developmental issues involved. Currently one of the most valuable sources of research, information, publications, and training on supporting the emotional foundations of child development is the National Center for Infants, Toddlers, and Families (see the Bibliography for contact information).

INCIDENTAL/NATURALISTIC TEACHING This approach involves teaching children in the context of daily routines and play activities. Incidental teaching requires concentration, skill, and focus on the part of the teacher. When done well, it may appear to be a laid-back, "hit or miss" type of approach, but this is because a skillful teacher embeds teaching in play and fun activities. Incidental teaching is based on the assumption that children learn best, achieving a more desirable level of flexibility and spontaneity, in real-world settings with activities which they personally choose and find motivating (Bricker and Cripe 1992). In this respect, it is compatible with and shares many assumptions behind the relationship-based approach. The role of the educator, and of the parent as co-educator, is to actively and intensively participate with the child in his or her everyday activities, using cues and prompts found naturally in that setting to gently "push" the child into a more varied and interactive repertoire. For example, the teacher may observe that the next item a child will need is his crayons and place them just out of reach so that communication and interaction become naturally involved within the activity. At home, a parent may build on a child's repetitive activity, such as dunking her doll in the sink, by spinning it into a simple story linking reasons to feelings, providing a beginning and an end.

When incidental teaching is approached incorrectly, it is often for the same reasons that a relationship-oriented approach may prove disappointing. The teacher or parent must be aware of the child's core needs and developmental level if the child is to be engaged in interactions which are meaningful. If the teacher or parent lacks a clear sense of what the child is currently able to understand, they may find themselves stuck in a form of parallel play, unable to engage a response. However, when conducted with attention to each child's individual needs, incidental teaching can be a powerful means of working with children in inclusive schools, home, and community settings.

LANGUAGE AND COMMUNICATION STRATEGIES Communication skills are crucial to social and cognitive development. Without a reliable, comprehensible means of being understood, children and adults experience frustration and anxiety, and may experiment with communication techniques which are likely to be misinterpreted. Therefore a preliminary focus in teaching children with autism/PDD must be the improvement of language and communication. Such teaching is incorporated in many different ways into the various methodologies described in this section, from the more narrow sense of helping a child to make correct verbal responses to the broader sense of fostering the development of social communication skills.

Communication is constantly occurring on a nonverbal basis, whether a person speaks or not. A fundamental objective of early intervention is to discover the communicative content of inefficient "problem" behaviors and help the child to find better alternatives. These strategies, sometimes called functional communication training, offer a starting point which allows others to connect with and understand the person. "However," caution Glen Dunlap and Lise Fox, "functional communication training is just one component of the more general enterprise of instruction in communication and language. There is also a tremendous need to establish a generative language system that the child can use for the myriad purposes that are served by communication -- for example, to issue requests, express desires and feelings, share comments about the environment, receive and transmit information, and develop interpersonal rapport and relationships" (1996: 38).

Nowadays the gap between "special" language instruction and natural language learning is steadily closing. Many modern exponents of behavioral approaches are branching out into new directions as the nature of language learning becomes better understood. As Lynn Kern Koegel has observed, "Early attempts to teach language that emphasized repetitive practice, carefully controlled instructions, consistent and artificial reinforcers, highly structured and simple training environments, and so forth might have actually retarded the efforts to achieve generalized interventions effects." (1995:23). Many educators are shifting to strategies which are interactive, emphasize following the child's lead or interest, and occur in natural environments in which communication leads to direct, natural consequences. "Coincidentally," notes Lynn Kern Koegel, "these newer procedures more closely resemble the way typically developing children naturally

learn language." (1995: 24).

These naturalistic approaches to language learning are sometimes referred to as milieu teaching. This term includes the incidental teaching methods described above, as well as the "natural language paradigm (NLP)," a series of strategies for capitalizing on the child's interests and everyday environments as built-in motivators (Koegel 1995). Milieu teaching procedures can be used in inclusive school settings, in the home, and in the community (Dunlap and Fox 1996).

It is important to note that language-learning does not necessarily require speech. Individuals with autism who remain unable to speak are nevertheless candidates for language-learning and literacy, thanks to the availability of an array of augmentative and alternative communication systems, to teaching strategies such as the Picture Exchange (Bondy and Frost 1993), and support strategies such as Facilitated Communication (Barker 1994; Biklen and Cardinal 1997; Crossley 1997). Sometimes these strategies become a prelude to the eventual initiation of speech, while in other cases a positive outcome is reached through the development of greater communicative independence in using the augmentative or alternative system.

Learning language and communication involves not just the production of accurate messages, but the ongoing enhancement of the ability to express ourselves and to interact with others. An overview of many useful approaches can be found in the book Teaching Children with Autism: Strategies to Enhance Communication and Socialization, edited by Kathleen Quill.

MOVEMENT DIFFERENCES AND ACCOMMODATIONS The "movement differences approach" is based on basic principles of neurobiology and human development, which tell us that people move in the environment as they perceive it, and perceive it according to their experiences of making reliable, successful, problem-solving connections with it (Thelen 1995; Thelen and Smith 1994). As observers, we may not see the actual "perceptions" or "sensory sensitivities" which have long been associated with autism/PDD, but we can see the movement differences which they entail. We can observe the ways in which those differences may be disruptive of social interactions and ultimately stigmatizing, leading to unwarranted assumptions of social-cognitive deficiency. An understanding of movement allows us to set aside this assumption and adopt a more pragmatic, problem-solving approach to behavior which gets stuck or repetitive, involves so-called "rituals," seems to move at an unusual rate, or is puzzlingly out of sync with the ongoing flow of interaction and activity.

The growing body of movement research suggests that when sensory integration is difficult to achieve, these difficulties will tend to become most problematic and visible at times when the system must reorganize -- that is, at transition points. In fact, movement differences are often observed as problems in starting, executing, continuing, stopping, combining, or switching an activity. People with autism are often described as being unable to switch from one activity to another, as stopping short in the middle of activities, or as having great difficulty beginning

even a well-known task. In a recent consideration of the lack of speech development and limited gestural communication so common in autism/PDD, Barry Prizant has suggested that motor speech impairments "involving motor planning (limb, or oral-verbal apraxias) may be involved." He went on to note that the acquisition and use of augmentative communicative systems can be problematic due to difficulties in "configuring hand and lower arms for initiating and executing particular movements used in sign language or natural communication gestures." (1996: 174) The working assumptions behind such observations are that problems in the planning and carrying out of effective movements are not necessarily indicative of social-cognitive deficits, but that they may be, wholly or in part, outside the conscious control or volition of the individual.

The "movement differences approach" is sometimes used to help reevaluate why a specific behavior modification strategy may have failed. It asks us to consider the utility which particular actions may have within a person's unique system of sensorimotor regulatory strategies, as well as the degree to which a behavior may or may not be under a person's direct control. In this regard, the movement approach fits well with recent advances in psychopharmacology which are improving our ability to identify and treat Tourette-like, Obsessive-Compulsive, and other behaviors which once proved so frustrating as targets for traditional modification programs.

The central goal of the movement approach is the provision of supports and accommodations, which are personalized strategies of adapting both the environment and our own behavior so that the person with movement differences is better able to make choices and perform desired activities. To this end, it may also incorporate basic behavioral strategies, such as a physical prompt to get an action unstuck. Several personalized strategies may come into play at once, as this example illustrates: "Doug tries to start talking. He gives eye to eye gaze, a tense broad smile, and begins vocalizing with his jaw clenched tightly shut. His vocalizations are rhythmic and continuous. Sometimes he also rocks forward to backward, foot to foot. He reaches out to people with one hand. If he touches a person he is sometimes able to talk. His speech comes rushing out like a dam that has burst. After noting this accommodation, one sensitive staff person also notes that if he nods his head in time with Doug's rocking and vocalizations this may also accommodate Doug's difficulty starting speech." (Donnellan and Leary 1995: 72).

The movement differences approach also entails a significant commitment to culture change and the appreciation of diversity, in the belief that people with autism/PDD should benefit from society's increasingly more enlightened view of people with movement differences such as Tourette's, Cerebral Palsy, or Parkinson's.

SENSORY INTEGRATION/SENSORY REGULATION This method helps the child to experience and develop new ways of making

successful, organized responses to sensory stimuli. It is based on the belief that, for some children, the integration of sensory experiences such as touch, movement, body awareness, sight, sound, and the pull of gravity does not develop efficiently in the course of ordinary childhood activities. Such children may present various combinations of problems: acute sensitivity or underreactivity to stimuli, distractibility, an unusually high or low activity level, impulsive behavior, inability to calm themselves, gross or fine motor delays, or difficulty in making transitions. Practitioners of sensory integration, like those of relationship-based teaching, believe that organized sensory experiences provide a foundation for a child's experiences of self, of others, of emotion and relatedness, and ultimately of words, ideas, and more abstract learning, and that children whose experiences of the world are disorganized are at risk for developing social, emotional, and cognitive problems. Lacking an intelligible, reliable, and enjoyable link between their own sensations and what's going on outside their own bodies, these children may experience increasingly limited motivation until their development stalls. Therefore the approach in sensory integration is to identify and build on those interests and motivations which the child is able to experience, guiding the child gradually through new activities so that he or she may discover more satisfying responses to sensory challenges. In her pioneering work, Jean Ayers set the initial goal of helping children with autism to register the everyday sensations that otherwise eluded them. Among the activities she found useful were "very heavy touch pressure," as when a child takes pleasure in being rolled between mats and cushions, and vestibular stimulation, such as spinning, which many children found motivating and which seemed to enhance visual processing. She also observed that "The autistic child senses input from his muscles and joints better than he does through his eyes and ears." (1979: 125-26). Ayers was able to use these entry points into the sensory system to introduce new activitities and motivate children to more independent exploration.

This aspect of guided discovery is crucial to sensory integration: to effect adaptive changes, the person must be an active, decision-making participant, not a passive recipient whose body is being moved or "patterned" by others. Sensory integration, as generally practiced by Occupational Therapists, should also be distinguished from training in specific motor skills, as may be done in adaptive physical education; the goal is to improve body awareness and organization rather than to learn a particular skill, exercise, or sport. While sensory integration is an approach incorporated in many teaching methodologies, it forms a particularly strong and integral component of relationship-based/developmental approaches.

SOCIAL SKILLS TRAINING Helping children and adults with autism gain social competence in an integral part of any intervention. Social skills teaching can include teaching very specific skills (e.g. sharing toys with another child, greeting a friend), building fluency with existing skills (e.g. playing side by side, having a conversation), and helping people with autism "read" and make judgments about social situations. An effective social skills intervention recognizes that social skills are learned best in naturalistic settings, incorporates functional and sensory information, and teaches skills in small increments. Strategies may include arranging activities and

materials to encourage social interaction, using peers to model or reinforce a specific skill, practicing social skills in planned group activities, and social coaching.

A popular form of social skills training, designed to be easily incorporated into school settings, is the Social Stories method developed by educator Carol Gray. Starting with the presumption that developing children with autism miss many of the communicative elements of a situation which are necessary for full comprehension, and that useful social skills must be based on understanding rather than rote mastery of formulas, Social Stories involves a process of specifying and clarifying the informational components hidden in our body language, tone of voice, or, at a further degree of abstraction, in our social codes. Children working on "Social Stories" learn how to construct more subtle, less literal, interpretations of the words and behavior of others through games and activities which offer them strategies for "exposing" important inferential information and honing social judgment through practice (Gray 1994a; 1994b).

STRUCTURED TEACHING A number of approaches place emphasis on structuring the environment and curriculum in order to maximize independent functioning. Perhaps the best known is TEACCH (Treatment and Education of Autistic and Communication-handicapped CHildren), a university-directed system created in 1972 and now established throughout North Carolina's public schools. TEACCH considers two of the primary problems of autism/PDD to be motor planning (the ability to move through a sequence of activities or routines without becoming stuck or aimless) and verbal comprehension, and emphasizes working around these deficits by carefully building systems of visual guidance into most aspects of a person's life. While author Sean Barron was not educated in the TEACCH system, his reminiscences of school clearly depict the benefits of a structured learning environment: "School was very soothing to me in a way. I immediately saw the structure of it, and that helped me feel I had some control. Since I could already tell time when I got there, I know exactly what would happen when -- and that had a calming effect on me. The day was broken up into small parts and I knew exactly what to expect -- I could respond to that." (Barron and Barron 1992: 83).

TEACCH students are taught to operate with a minimum of guidance, often at specially-organized classroom workstations. Organizational devices abound, e.g. student schedules featuring photos of the day's activities, color-coded materials for various tasks, and timers clicking off the minutes for each activity period. TEACCH believes that maintaining this level of structure requires a continuum of placements, with some students fully included, others described as "partially included," and others in segregated classes and special schools. While it has a behavior modification component, TEACCH is characterized by its developers as a more cognitive approach to self-care and self-management, building on skills which children already possess. Parents are trained and actively involved so that they can help generalize skills learned in the classroom to home and community. (Lord and Schopler 1994; Schopler and Mesibov 1995; Schopler, Mesibov and Hershey 1997?)

As is typical with highly structured programs, concerns are sometimes raised about the extent to which structured teaching may leave people dependent on particular cues and unable to adapt to "real world" situations (e.g. students may be cued to form a line by means of adhesive-taped marks on the floor, but on their next visit to a fast-food restaurant this cue will not exist). Questions are also raised about whether, in the quest for predictable levels of individual performance, sufficient emphasis is placed on learning and growing through more open-ended interactive, communicative, and group contexts.

What's in a Positive Approach?"Positive Approaches" are a set of basic principles which frame the way we think about and respond to people and their behavior in ways that are respectful, hopeful, realistic, and grounded in an appreciation of each individual's capacities, resources, and aspirations. To practice Positive Approaches means getting to know the whole person in all their uniqueness, assuming that their behavior has meaning and that their communication should be heard, and understanding that the use of physical or psychological aversives is never a justifiable response to that communication. It means recognizing that people develop and respond best when they are respectfully supported to enjoy relationships and choices.

Over the years, many parents and professionals have recorded the general principles that they found helpful in guiding their approaches to people with autism/PDD, in settings from home to school to the community at large. It is heartening to note how well their observations agree with each other and with Positive Approaches. The following have emerged as significant principles to consider in intervening on behalf of young children, and have vitally important corollaries in the lives of older children and adults: 1. The central role of the family and of natural community settings in intervention and child development. Families serve vital roles in the early development of a child: interpreter of an often puzzling and overwhelming world, facilitator of a child's first feelings and growing sense of self, and shaper of the many ways that those feelings and selfhood are expressed. Families provide enduring resources and continuity, making them unique interpreters of their children's needs and abilities. These roles are either supported or undermined as the family of a child who is different is either accepted or ignored by the community, welcomed as full participants or quickly consigned to "special places." Barbara Moran recalls growing up in the 1950s, when autism was blamed on poor parenting and social conformity was highly prized: "My parents didn't deserve guilt anymore than I did...They must have felt very alone. I think if someone had been able to comfort and encourage my parents that we would have been able to get along better. I doubt if we would have been in the difficult cycle of blame." (1997: 18) For such reasons, the field of education and especially early intervention has been shifting from its previous, narrower focus on "child skill development" to a fuller "ecological" vantage point. "In an ecological perspective,

appropriate practices are ones that consider the whole unit of the child within the family when deciding on the nature of intervention," write Glen Dunlap and Lise Fox (1996: 32-33). This ecological approach seeks to support the child in the environments important to normal family life, and "should consider success in those contexts as meaningful outcomes." (Dunlap and Fox 1996: 41).

Writing in Zero to Three, the publication of the National Center for Infants, Toddlers, and Families, Stanley Greenspan argues that "many communities need to rethink the way in which they organize early intervention and education for children with pervasive and multisystem delays and disorders, as well as for all children with disabilities." He suggests that far more attention must be given to helping parents to optimize family dynamics and interaction patterns to help their child, as well as to the integration of children with disabilities into "adequately staffed, developmentally appropriate early childhood care and education programs with typically developing children of a similar chronological age and developmental level, with one or two preschool children with disabilities in a group with five typically developing children. Grouping children with disabilities with each other may not be in the interest of any individual child, especially if a child's disability includes difficulties in communication or social interaction. As the child tries to communicate, he needs someone who can communicate back." (1992: 8-9). Such typical contexts not only enhance the child's opportunities for social and verbal interactions and skill generalization, they support the unique ecology of each family's life and pave the way for successful community living in adulthood.

2. The need to progress through typical, appropriate developmental sequences. When we get to know the individual and start from where they are, our activities will be perceived as meaningful rather than arbitrary and confusing. Development is sometimes viewed as a scaffold, with each level building on what has already been consolidated. Children who have difficulty attending to and processing critical information may need what is called an augmented scaffold, in which "social experiences are not only geared toward a child's developmental level but also are exaggerated and simplified so that the relevant aspects of social interaction are distilled, become highly salient, and are more easily comprehended." (Dawson and Osterling 1997: 315). Greenspan warns that "One of the most common unhelpful approaches is to lose sight of the developmental progression the child needs, and instead, to zoom in on particular skills in a fragmented or isolated way," spending time on isolated, rote-learned cognitive skills while "more basic interactive skills that would serve as a foundation for true thinking and communicating are ignored." (1992: 5). In a practical example, Rogers and Lewis' analysis of their highly successful early childhood program credits the fact that all adults who worked with the children "learned to interpret each child's repertoire of potentially communicative verbal and nonverbal behaviors and to respond at a corresponding level," whether that level was linguistic or whether the child was still working on the meaningful, consistent use of preverbal gestures (1989: 208).

3. The motivational value of identifying and building on naturally-occurring capacities and interests. Temple Grandin, who credits much of her

success to the support she received in following her own unusual interests, advises parents and teachers, "Look for what interests your child and captures his fancy. If, for example, he stands by the toilet, flushing it all day long, ask yourself, is it the sound, is it the pushing of the handle, or is it the cause and effect relationship that fascinates him? Take that involvement and divert it into other channels." (1986: 145). Everyone has an interest with which to start, notes Stanley Greenspan, even in the case of his two-year old patient who spent her days silently rubbing a patch of carpet. Once her mother was coached to build on this single favored activity, putting her own hand on the carpet until her daughter began to push it away, the child's motivation grew incrementally until giggling and interacting became part of the carpet-rubbing game. Eventually she began engaging in more complex mother-and-daughter games on the rug, then struggling to imitate her mother's sounds and speech. By the time she was seven, "age-appropriate emotions, warm friendships, and a lively imagination" had been built on a well-carpeted foundation (1997: 17). Recent studies at the Autism Research Center at the University of California, Santa Barbara, confirmed that when children with autism are allowed to incorporate their own distinctive interests into a social game, their interactions with peers increased dramatically (Baker, Koegel and Koegel 1997).

In adulthood as in childhood, work becomes play and our energy and creativity increase when we are involved in an activity that makes sense to us, drawing on our natural abilities and enthusiasms. Yet, as Herb Lovett has observed, while we are increasingly alert to the fact that people with disabilities need to connect with their friends and communities, we are less astute "in recognizing that we also need to allow people to reconnect with themselves, with their own sense of accomplishment and dignity." (1996: 25). Thousands of self-help books have been written to help us decide "what color is our parachute," and people with autism/PDD have the right to choose their own personal colors.

4. The critical importance of positive, affectionate relationships. An atmosphere of acceptance and support, rather than correction and remediation, is basic to human development. "I wonder what kind of person I would have been," muses Barbara Moran, "if I had known all along that my sensory problems were neurological and what it would have been like if my complaints had been taken seriously and if there had been no shame." (1997: 18). Stanley Greenspan builds his entire theory of child development on the foundation of accepting, supportive human relationship: "For all children, including those facing unusual physiological challenges, emotional interaction plays a vital role in learning. Although it is too early to know for certain whether therapy can correct the original neurological handicap or build compensatory strengths, it appears that both are happening. The improvement seen in autistic children who have gradually passed through the stages of affective development underlines the importance of understanding the emotionally based mental architecture supporting intelligence." (1997: 67-68). Neurologist Ralph Maurer suggests that if we would commit ourselves to learn how relationship works we might discover "a missing behavior technology," one with the power to "compensate for the children's deficiencies in that dance of relationship, like Arthur Murray instructors, and then work from within the dance

to expand the child's world, like mothers do with infants." (1994: 3).

5. The centrality of play in human development. A famous axiom in the field of child development reminds us that "A child's work is to play." Play is the meaningful, satisfying context through which all children explore life's possibilities, developing and testing hypotheses about the workings of their bodies, the objects around them, and the mysterious ways of the other humans who cross their paths. In analyzing the features of one highly successful Early Intervention program model, Sally Rogers and Hal Lewis focused on play as "a learning modality that could promote assimilation and generalization of a wide range of cognitive, communicative, and social/emotional skills in PDD children, just as it does for nonhandicapped young children. Thus, virtually all activities and therapies were presented through the medium of play, with symbolic play and interactive play highly stressed." (1989: 208). Likewise Stanley Greenspan emphasizes the importance of assessing the child's interactive play behaviors in order "to identify children's emerging capacities to relate warmly and intimately with parents or other familiar caregivers," and of helping parents, through play, to "pull the child into spontaneous, joyful interactive patterns" (1992: 3-4). Nor is play only possible when organized and facilitated by adults. Behavioral researchers cite findings that children with autism engage in far more cooperative play when interacting with typically developing classmates, and far more solitary play when with other children with autism, concluding that "This is certainly a different interpretation than the preconception that children with autism are not capable of or motivated to participate in social relationships." (Hurley-Geffner 1995: 119-120)

Throughout life people never outgrow the need for play, although adults may learn to call it "recreation" or "hobbies" or "sports." These activities provide us with the freedom to explore and experiment, an inducement to creative thinking, and a context in which to develop our social life. Not all play needs to be primarily social or structured, however; it is vital for every person to unstructured time which is all their own. "All of us need a private place," writes Temple Grandin. "Autistic children need their secret places, too, in which they can hide and retreat to their own world....I had mine and it was a place for me to think and recharge myself." (1986: 147). All children and adults need the time, the support, and sometimes simply the privacy to enjoy their favorite activities on a regular basis; the opportunity to play is far too vital for emotional growth and well-being to be used only as a reward for good behavior or relegated to an occasional treat.

6. The power of environmental and social supports which foster sensory regulation Most people find that they learn better when they are encouraged to take an active role and to set their own optimal pace. In an overview of research on the development of social interactions in young children with autism/PDD, Dawson and Osterling (1997) offer a strong rationale for allowing the child to initiate and take the lead in interactions: by this means the child is able to regulate the amount of stimulation experienced, thereby helping to increase his or

her own capacity for attentiveness and active social responses. The earliest child-directed strategy to emerge in the course of development, imitation of the infant's behavior by the parents, "is one of the most common forms of communication between a parent and infant during the first year of life" and seems to help build the scaffolding for other early skills such as turn-taking and shared attention (1997: 322). As children grow, some of the best the social supports for fostering sensory regulation seem to be provided by peers. Nancy Minshew and James Payton speculate that the greater consistency and lesser complexity of children's interactions with their peers may explain the success of inclusive settings: "Normal peers were discovered to be more effective behavior `therapists' for autistic children than were adults because their interactions are less complex and more consistent and do not have the emotional intensity and variability that is associated with adult interactions. This led to an appreciation of the adverse effect that normal adult behavior may have had on an autistic child's behavior.... Adults often talk too much and too loudly and make frequent escalating demands on the child to respond. The social intensity quickly exceeds the autistic child's very limited tolerance for social contact, which triggers a regression to a lower level of function...." (1988: 656).

The critical importance of finding and maintaining optimum stimulation within the easily-disrupted and narrow range characteristic of people with autism/PDD is a lifetime challenge, and its successful negotiation may be a major factor in explaining why positive intervention outcomes can result from practices so diverse that any comparison seems like a case of "apples and oranges." "A serious problem in the autism field, particularly evident to parents," observes neurologist Ralph Maurer, "has been the balkanization of interventions. A common theme in many useful interventions, across many different disciplines, is the use of environmental accommodations that provide a consistent pattern of sensory, motor, attentional, emotional, or some other type of modulation....Sometimes the use of such accommodations is an incidental aspect of the intervention, yet may be the actual active ingredient." (1996: 14).

7. The value of individualized teaching and supports. Respectful decisions are made person by person, not label by label. The first clinical consideration emphasized in a major summary of behavioral research by Koegel, Koegel, Frea, and Smith is that "There is variability in symptomatology and responsiveness to intervention across children; therefore, all intervention should be individualized." (1995: 15). In explaining that each child presenting with autism/PDD has "his or her own unique profile for processing sensations," Greenspan emphasizes that "Children are presenting with a continuum of relationship and affect expression patterns rather than one distinct type." (1992: 2). This basic principle of individualization has been so strongly supported by the evidence and advocacy of families and of people with disabilities that it has been codified into law and regulations at many levels.

WHAT QUESTIONS SHOULD PARENTS ASK?As families come to expect more personalized approaches to education and therapy, the quality of the dialogue, information, and vision shared

between families and service providers becomes vital to success.

In Pennsylvania, children with disabilities from birth to age three receive an Individualized Family Service Plan (IFSP) organized through the Office of Mental Health or the Office of Mental Retardation. From preschool until age 21, students with disabilities receive an Individualized Education Plan (IEP) through the Department of Education, and adults may receive an Individualized Habilitation Plan (IHP) through the Office of Mental Health or Mental Retardation. Developing these plans is a team activity through which family members, service providers, and professionals in the field form partnerships, and important decisions about a child's or adult's supports and services are made. In the past, these dialogues were framed in terms of "placements," "programs," or "slots," and families were presented with a very limited number of options (sometimes only one) from which to choose. Placements tended to be based on broad categories such as "autism," "mental retardation" or "emotional disturbance," and the planning process centered on matching the child's label to a program with an opening, or to whatever services the providing agency was equipped to offer at that time.

Nowadays expectations are different. Families expect early intervention, special education, and the necessities of adult life to exist as services, not places. They also expect these services to be tailored to the unique needs, capacities, and dreams of their son or daughter, not generically targeted at their child's diagnostic label. They expect flexible, creative approaches which utilize not only formal services, but also connect their child with natural resources and informal supports in their local area, from community infant programs to neighborhood recreation centers, leadership development organizations such as Boy Scouts and Girl Scouts, volunteer opportunities through local service clubs, work-study programs for students, and adult employment opportunities. To meet these expectations, the quality of the dialogue and information shared between parents and those who are offering educational, therapeutic, or support services is vital to success. As one parent describes it, "Brainstorming together is an energizing process. It can make assessment and planning look more like a celebration and less like a funeral: The focus of the discussion becomes giving families normal life opportunities rather than creating `near normal' children." (Rocco 1996: 57) Effective brainstorming has three vital goals: achieving a shared vision for the person with autism/PDD and their family; acquiring a clear understanding of the methods, beliefs, and goals of the educational approach, therapy, or other services under consideration; and determining what mix of resources best suits their situation. Here are some questions parents may wish to consider:

1. Do you and the people who will be providing services or supports share a common vision? Do all team members share an understanding and appreciation of your son or daughter: who they are, what they like, how they learn best, what motivates them, what makes them happy, what hopes you hold for their future? Are the service providers talking to you about a deficit-based abstraction called "autism" and the requirements of their program, or talking with you about supporting the development of your individual son or daughter? Are

your team members pulling together, or are they presenting a fragmented vision and contradictory opinions based on their various professional specialties? As one mother described the disorienting IEP meetings she and her husband once endured: "The room would be filled with too many people, sometimes as many as 21, all eager to push for their own agendas. The meeting would begin with evaluations, present levels, and a list of things that Andrew could not do....Goals had been written by specialists who discussed how they were going to `fix' Andrew's problems, with the hopes of `getting him ready' for a regular classroom (7 out of 10 times, with 85% accuracy)." This family put an end to such draining, depressing experiences by moving their son into an inclusive educational setting, meeting only with his immediate team and his peers, and reframing the IEP process as a positive discussion of his strengths and the things which could be done to improve the quality of his day: "We talk about a beautiful child and his gifts, the things he is learning and what other children are learning from him. When we set goals no one cares that Andrew doesn't isolate his index finger on command 2 out of 3 times. We care that he is doing the same things as the rest of the class. We depend upon our dreams to set goals for Andrew that will help him succeed in society when his school days are over." (Dixon 1991). There are different dreams for each child and each family, but the process always starts with a group of people who are willing to listen to and learn from a child, and from each other.

2. Does your son or daughter feel welcomed into the planning process? Is the team willing to listen to your son or daughter, follow their lead, and build on their enthusiasms and preferences, or is the focus to be only on ways of correcting or extinguishing behaviors? Is there a basic presumption of comprehension and competence? Will he or she be included in decision-making in an age-appropriate manner? As a young child, will your son or daughter receive explanations, be introduced to new people, and be included in the ongoing flow of information? As an older child and as an adult, will he or she be considered a directing, decision-making member of the team?

Does your child feel valued and honored by this process? "I know that my autism has presented challenges to my family," writes Anne Carpenter, "but the value, respect, and acceptance they have shown me has made me the person that I am today. Whenever I hear the word "cure" associated with autism, I ask myself, my family, and my co-workers, `Would you want me to be a different person?' Their answers echo mine: `NO!'" (1997: 2). Does the education and support your child is receiving foster a sense of pride in who they are? 3. Do the claims and rationale for a particular educational or therapeutic approach add up? Is the information you need to evaluate a particular teaching or treatment method readily available in a form that you can understand, or is it represented as too complex or specialized to explain in common language? Does it connect with what you know and have observed about your son or daughter? Does it offer you a positive, meaningful framework for strategizing about your individual child's development, rather than a list of unexplained "dos and don'ts" or mysterious protocols? Are your questions or criticisms handled in a responsive,

respectful manner rather than defensively? Does this approach involve any risks or restrictions for the child or for your family, and if so do you have evidence that these are really necessary?

Is an unusual level of media hype and emotionality associated with this approach? Are you made to feel guilty or inadequate for questioning or failing to endorse a particular course of action? Have you weighed information about the approach from a variety or sources, or is all your information coming from a single source? Are specific outcomes being promised in the absence real knowledge about your particular child and your family situation? Reputable medical and educational professionals show respect for the uniqueness of each person and the feelings of each family, and do not indulge in overstatements and boasts about what their methods will be able to accomplish. When they are particularly successful in helping a person, they do not encourage that family to offer public testimonials promising the same outcome to others. It helps to remember that terms like "miracle" and "cure" have been routinely trumpeted by the media for decades, yet, while supports, accommodations, and the quality of life for people with autism/PDD continue to improve, there is no noticeable decline in their numbers.

4. Is there an appreciation of the diversity of children with autism/PDD and of the methods for teaching them? If you are dubious about the approach being offered, will the providers of that service speak to you openly about alternatives? Is there a back-up plan which can be tried if the initial approach does not show success, or is there only an insistence that a particular method must and will work? According to the Working Group on Social and Behavioral Intervention's report from NIH's Autism: The State of the Science Conference, "Outcomes depend upon the interaction of the characteristics of the individual with the characteristics of the treatment approach. What works for one child may be ineffective or counterproductive for another." (McIlvane 1996: 149). Autism consultant Diane Twachtman-Cullen cautions families to "beware of the professional who tells you that he or she has the only answer for your child, and that only his or her program will work. It's never that simple!" (1996)..

If you are told that there exists only one effective program model, method, or ingredient, what is the evidence? A recent review of eight model Early Intervention and preschool programs across the country concluded that "in spite of somewhat diverse intervention strategies and philosophical differences, all of the programs were quite effective in fostering positive school placements, significant developmental gains, or both for a substantial percentage of their students." This convergence of outcomes was ascribed to the fact that common experiences in working with children with autism shaped practitioners from different backgrounds in much the same ways, resulting in "basic shared beliefs and methods for helping children with autism." (Dawson and Osterling 1997: 308).

The common elements which emerged among these programs turned out to be very straightforward: all had a curriculum content which focused on helping young children with autism or PDD to increase their interest in and attention to other

people; all used highly supportive teaching environments, helping children recognize relevant information by removing distractions and then working incrementally to generalize the skills learned to more complex environments; in their different ways, each model program met children's needs for predictability and routine; all took a functional approach to difficult behaviors, with most of the programs putting their efforts into prevention by engaging the children in alternative, more desirable play activities; all the programs were purposeful and proactive in helping the child and family transition to kindergarten/elementary school settings; and all of the programs placed a high value on family involvement (Dawson and Osterling 1997). How well does the program or approach you are considering make use of these elements?

5. Is your son or daughter viewed as sociable? Does this approach consider that all people have a basic need for friendships and relationships, or is it based on an assumption that people with an autism/PDD diagnosis don't care about, or are incapable of, social interactions? Does the approach presume that helping children with autism/PDD enhance their capacity for relatedness and interaction is the primary step in their development, or does it postpone this step in the belief that people with autism/PDD need an extended period of time in which to "get ready" for social interactions by completing a program of behavior remediation or mastering more normal-looking activities and responses? Different educators and therapists may hold different beliefs about the social development of children diagnosed with autism/PDD. Once these beliefs are clearly spelled out, parents can consider whether they make sense according to their own child's situation and needs.

6. Is your son or daughter viewed as educable? While basic interactive skills may be a primary goal to achieve and reinforce, will your child be supported to build on this foundation? Will the approach you are considering concentrate on behavior management and therapy at the expense of academics? Will the teachers assume that your child has the capacity to learn, even if he or she does not respond well to standardized testing? Is there a prevailing belief that learning should be a lifelong enterprise, or a presumption that some people reach a definable limit at an early age after which all attempts to teach more than life skills should be discontinued?

In the past, many educators believed they could predict, on the basis of IQ score, appearance, behavior, or lack of speaking ability, that some people were incapable of the fundamental achievement of literacy. Anne Donnellan, who has researched educational supports and accommodations for people with autism/PDD, calls for a code of conduct among educators which would entail making the "least dangerous assumption" by presuming the presence of learning ability rather than its opposite (Donnellan, Mirenda et. al. 1984). This call for higher expectations is being born out by recent research on emerging literacy, which indicates that no child should be excluded from reading instruction on the basis of label or severity of disability (Koppenhaver, Coleman et. al. 1991). The Center for Literacy and Disability Studies at the University of North Carolina in Chapel Hill has been founded to pave the way for more positive and effective

instruction for all people with disabilities, and is becoming an important nationwide resource for publications, conferences, and trainings (see Reference list for information).

7. Have your family's needs been considered? Will this approach enhance family life and your ability to enjoy time with your son or daughter, or will it require considerable disruption? Does it ask that you and your child be involved in a program of therapy, education, or remediation for most or all of the day, or will there be ample time for your family to enjoy and explore unstructured interactions? Can this approach be combined with strategies which you are already using successfully, or does it ask for a complete overhaul of your life? Since a calm, happy, smoothly-functioning family is the ideal environment for every child's development, it is important to consider the effect of an educational or treatment approach on your ability to provide that environment.

8. How will success be evaluated? What positive changes can you expect to see, and how well do they match your families' current needs and goals? Will progress be measured by the acquisition of new abilities and knowledge rather than mere suppression of behaviors? Is there an appreciation of the fact that a child with autism/PDD may know more than he or she is able to demonstrate upon demand? Will the program forgo decision-making based on standardized tests, on which children with autism/PDD typically do poorly, for more appropriate measures of competence? How often, and with how much family input, will evaluations be made?

The Working Group on Social and Behavioral Intervention, reporting to NIH's Autism: The State of the Science Conference, noted that "the acquisition of functional abilities such as changes in spontaneous communication and adaptive, flexible behavior over time...are more meaningful than changes in measurements such as IQ" (McIlvane 1996: 148). The inherent limitations of the IQ concept are clearly illustrated in the case of people with autism/PDD: many individuals who test poorly nevertheless achieve a high level of adaptation and independence, while others score exceptionally well on such tests only to discover that the challenges of everyday life bear little relation to the challenge of test-taking. Greenspan reminds us that "cognitive potential cannot be explored until interactive experiences are routine" (1992: 3). For this reason, an increase in flexible, spontaneous interactive skills is widely accepted as the first good measure of a successful approach. Another basic goal of any educational activity or intervention is to help the person improve their understanding of, and ability to operate coherently in, the world around them; therefore, there should also be an observable reduction in your child's -- and your family's -- tension and anxiety over time as a result of the approach you have chosen.

The Working Group on Social and Behavioral Intervention also reported that assignment of students to a regular education classroom is not a meaningful measure of a program or treatment's success, since the achievement of this goal is more a reflection of local political and legal mandates than of treatment outcome (McIlvane 1996: 148). Inclusion in school and community life is now

being viewed as an important component of development rather than a potential outcome of successful treatment. In considering any educational or treatment approach, parents therefore need to ask not only whether accurate data on their son's or daughter's progress will be collected, but what this data will measure and what its purpose will be. Will data collection be done for the positive purpose of adjusting teaching methods and environmental factors, or with the negative purpose of amassing an exhaustive catalog of deficits which will then be used to drive placement decisions? In framing questions about outcomes, families often conclude that no body of supposedly "objective data" should dictate their next move. The visions which parents have for their children inform the measures they choose to define success, and each positive choice changes the rules of the game so that fewer people feel trapped at square one and more can win. In this way our theories and our dialogues about autism/PDD continue to evolve.

CONCLUSIONThe questions which families are asking today are based on the belief that, while their son or daughter may be coping with perceptual and communicative challenges, their activities, interests, and responses make sense, and that reasonable people using respectful, personalized approaches can support their child's development. Increasingly, the educators, therapists, and other service providers to whom families address their questions are reaching the same conclusions. They are learning to respond to the individuality of people who have an autism/PDD diagnosis, and are giving up the futile quest for a single, universally appropriate model or program. Information is becoming easier to find and clearer to understand, thanks in no small part to the ever-increasing number of books and newsletters written by and for people with autism/PDD. These people are sending us a powerful message about the value of human diversity and the need to "listen and learn." Research into neuropsychology and human development is yielding wonderful insights into the many different ways people perceive the world, learn and grow. These new avenues of information are allowing us to think more clearly about the impact of differences in sensorimotor regulation on the lives of people with autism/PDD, and offering us new contexts in which to consider behavior and make choices about the most appropriate teaching methods for each individual. Recent publications emphasizing Positive Approaches in the behavioral field demonstrate that educators who traditionally focused on the impact of external environmental events are also evolving in new directions, seeking ways to incorporate developmental, social, and personal factors into their theories and methods.

It appears that the various teaching and therapeutic traditions in the autism field, while coming from different directions, now find themselves circling the same phenomena. They are all coming to appreciate that people with autism/PDD need and have the capacity to connect with the world, and that there are many ways to facilitate their participation in everyday activities. They are agreed that there is something vitally important and developmentally critical in the nature of friendship, relationship, and genuine inclusion. They all agree that education and therapy must be based on positive approaches to the child or adult. And they agree that people who share the label of autism/PDD are very diverse, requiring

personalized approaches which involve a variety of educational methods.

This is truly a substantial foundation on with which to build a dialogue in support of Pennsylvania's citizens with autism/PDD.

REFERENCES

Aaron, P.G. 1989 Dyslexia and Hyperlexia. Boston: Kluwer Academic Publishers.

American Psychiatric Association 1994 Diagnostic and Statistical Manual of Mental Disorders, ed. 4. Washington: APA Press.

Autism Society of America undated What is Autism? Bethesda, MD: Autism Society of America.

Ayers, A. Jean 1979 Sensory Integration and the Child. Los Angeles: Western Psychological Services.

Baker, Mary J., Robert L. Koegel and Lynn Kern Koegel 1997 "Increasing the Social Behavior of Young Children with Autism Using their

Obsessions." Autism Research Center, University of California at Santa Barbara, 1997 (For information on this and other ongoing research, e-mail: ucsbautism @ education.ucsb.edu)

Barker, Barbara, with Martha Leary, Susan Repa, and Philip Whissell 1993 Getting in Touch: A Workbook on Becoming a Facilitator. Madison, WI: DRI Press.

Barron, Judy and Sean Barron 1992 There's a Boy in Here. New York: Simon and Schuster.

Bettelheim, Bruno 1967 The Empty Fortress. New York: Free Press.

Biklen, Douglas and Don Cardinal1997 Contested Words, Contested Science: Unraveling the Facilitated

Communication Controversy. New York: Teachers College Press.

Bondy, Andrew S. and Lori A. Frost 1994 "The Picture-Exchange Communication System," in Focus on Autistic Behavior, Vol. 9.

Bricker, Diane and Julie J. Woods Cripe 1992 An Activity-Based Approaches to Early Intervention. Baltimore: Brookes

Publishing.

Bristol, Marie, Donald Cohen, et. al. 19961 "State of the Science in Autism: Report to the National Institutes of Health," Journal of Autism and Developmental Disorders, Vol. 26, No. 2.

Bristol, Marie and Fred Volkmar 1996 "Preface to the Special Issue," JADD, Vol. 26, No. 2.

Carpenter, Anne 1997 "Does Autism Need a Cure?", Horizons, published by the Autism Society of Michigan (Jan/Feb).

Carr, Edward G., L. Levin, G. McConnachie, J.I. Carlson, D.C. Kemp, and C.E. Smith1994 Communication-based Intervention for Problem Behavior. Baltimore, Brookes Publishing.

Center for Literacy and Disabilities StudiesFor information on annual conferences, publications, and trainings on literacy instruction and learning for children and adults with developmental disabilities, contact the Center at the University of North Carolina at Chapel Hill 27599-8135. TDD/Voice 919-966-7486, FAX 919-966-3864.

Condon, William 1985 "Sound-Film Microanalysis: A Means of Correlating Brain and Behavior," in

Dyslexia, A Neuro- scientific Approach, edited by Frank Duffy and Norman Geschwind. Boston: Little, Brown, and Co.

Crossley, Rosemary 1997 Speechless. New York: Dutton Books.

Dawson, Geraldine and Julie Osterling1997 "Early Intervention in Autism," in The Effectiveness of Early Intervention,

ed. Michael J. Guralnick. Baltimore: Brookes Publishing, 1997.

Dixon, Beth. 1991 "My Dream IEP Meeting," Innovations, Institute on Disabilities, UAP, New Hampshire, Spring.

Donnellan, Anne and Martha Leary. 1995 Movement Differences and Diversity in Autism/Mental Retardation:

Appreciating and Accommodating People with Communication and Behavior Challenges. Madison, WI: DRI Press.

Donnellan, Anne, P.L. Mirenda, R.A. Mesaros, and L.L. Fassbender. 1984 "Analyzing the Communicative Functions of Aberrant Behavior," Journal of the Association for the Severely Handicapped, Vol. 9, No. 3.

Dunlap, Glen and Lise Fox 1996 "Early Intervention and Serious Problem Behaviors," in Positive Behavioral Support: Including People with Difficult Behavior in the Community, ed. Lynn Kern Koegel, Robert Koegel, and Glen Dunlap. Baltimore: Brookes Publishing.

Gardner, John 1983 Frames of Mind: The theory of Multiple Intelligences. New York: Basic Books.

Gillingham, Gail 1996 Autism: Handle With Care. Texas: Future Horizons.

Gedye, A. 1996 "Recognizing Involuntary Movements with Vocalizations and Autonomic

Changes: A Nonconvulsive Ictal Signs Checklist," The Habilitative Mental Healthcare Newsletter, Vol. 15, No. 4 (July/August).

________1991 "Frontal lobe seizures in autism," Medical Hypothesis, Vol. 34:174-182.

Gerlach, Elizabeth 1996 Autism Treatment Guide. Four Leaf Press, Eugene, OR (first published 1993, revised 1996).

Gormon, Jack M. 1996 The New Psychiatry: The Essential Guide to State-of-the-Art Therapy,

Medication, and Emotional Health. NY: St. Martin's Press.

Gorton, Christopher 1996 "Medication That Affects Behavior," The Pennsylvania Journal of Positive Approaches, Vol. 1, No. 1.

Grandin, Temple and Margaret Scariano 1986 Emergence: Labeled Autistic. Novato, CA: Arena Press. (Republished by Warner Books, 1996)

Grandin, Temple1995 Thinking in Pictures. New York: Doubleday, 1995.

Gray, Carol 1996 "Gray's Guide to Neurotypical Behavior," The Morning News. Jenison, Michigan: The Jenison Public Schools, (Winter).

__________

1994a New Social Stories (formerly The Social Story Book). Texas: Future Horizons.

__________ 1994b Taming the Recess Jungle. Texas, Future Horizons.

Greenspan, Stanley 1997 The Growth of the Mind. New York: Addison-Wesley Publishing.

__________________ 1992 "Reconsidering the Diagnosis and Treatment of Very Young Children with Autistic Spectrum or Pervasive Developmental Disorder," Zero to Three, Vol. 13, No. 2 (Oct/Nov).

_________________ 1995 The Challenging Child. New York: Addison-Wesley.

Hart, Charles 1993 A Parent's Guide to Autism. New York: Pocket Books.

Hurley-Geffner, Christine. 1995 "Friendships Between Children with and without Developmental

Disabilities," in Teaching Children with Autism, ed. Robert Koegel and Lynn Kern Koegel. Baltimore: Brookes Publishing.

Koppenhaver, D., P. Coleman, S. Kalman, and D. Yoder1991 "The Implications of Emergent Literacy Research for Children with Developmental Disabilities, American Journal of Speech and Language Pathology, 38-44.

Kanner, Leo 1943 "Autistic Disturbances of Affective Contact," Nervous Child, Vol. 2: 217-250.

Kaufman, Barry 1994 Son-Rise: The Miracle Continues. H.J. Kramer.

______________ 1976 Son-Rise. New York: Harper and Row.

Koegel, Lynn Kern1995 "Communication and Language Intervention," in Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities, Robert Koegel and Lynn Kern Koegel (eds.). Baltimore: Brookes Publishing.

Koegel, Robert L. and Lynn Kern Koegel 1995 Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities. Baltimore: Brookes Publishing.

Koegel, Robert, Lynn Kern Koegel, William Frea, and Annette Smith1995 "Emerging Interventions for Children with Autism," in Teaching Children with Autism, edited by Robert Koegel and Lynn Kern Koegel. Baltimore: Brookes Publishing.

Kraemer, Helena C.1996 "Biostatistical Recommendations to the NIH," JADD, Vol. 26, No.2.

Leary, Martha and David Hill1996 "Moving On: Autism and Movement Disturbance," Mental Retardation, Vol. 34, No. 1 (Feb).

Lord, Catherine C. and Schopler, E. 1994 "TEACCH Services for Preschool Children," in Preschool Programs for Children with Autism, eds. S.L. Harris and J.S. Handleman. Austin, TX: Pro Ed.

Lovaas, Ivar 1980 Teaching Developmentally Disabled Children: The ME Book. Texas: Pro-Ed Publishers.

Lovett, Herbert1996 Learning to Listen: Positive Approaches and People with Difficult Behavior. Baltimore: Brookes Publishing.

Maurer, Ralph1994 "Autism, the Brain, and the Dance of Relationships," presentation handout

from Rethinking Autism/PDD Conference, King of Prussia, PA. _____________1996 "Autism and the Cerebellum: A Neurophysiological Basis for Intervention,"

The Communicator, Vol.7, No.1.

McDougle, Christopher, Lawrence H. Price and Fred Volkmar 1994 "Recent Advances in the Pharmacotherapy of Autism and Related Conditions," Psychoses and Pervasive Developmental Disorders, Vol. 3, No. 1, (Jan).

McGee, John1991 Beyond Gentle Teaching: A nonaversive approach to helping those in

need. New York: Plenum Press.

1987 Gentle Teaching: A nonaversive approach to helping persons with mental retardation. New York: Human Sciences Press.

McIlvane, William J. 1986 "Report of the Working Group on Social and Behavioral Interventions," JADD, Vol. 26, No. 2.

Meisels, Samuel J. and Emily Fenichel (eds.)1996 New Visions for the Developmental Assessment of Infants and Young Children. Washington: Zero to Three/The National Center for Infants, Toddlers, and Families.

Minshew, Nancy 1996 "Brief Report: Brain Mechanisms in Autism: Functional and Structural Abnormalities," JADD, Vol. 26, No. 2.

______________1991 "Indices of Neural Function in Autism: Clinical and Biologic Indications," Pediatrics, American Academy of Pediatrics.

Minshew, Nancy J. and James B. Payton1988 New Perspectives in Autism, Part II: The Differential Diagnosis and Neurobiology of Autism, Current Problems in Pediatrics, Vol. 18, No. 11, (Nov).

Minshew, Nancy J. and Arlene Rattan 1994 "The Clinical Syndrome of Autism," Nancy Minshew and Arlene Rattan, in Handbook of Neuropsychology, Vol. 7: Child Neuropsychology, Ed. S.J. Segalowitz and I. Rapin, Elsevier Science Ltd.

Moran, Barbara1997 "Growing Up Autistic," The Communicator, Vol.8, No.1.

National Center for Infants, Toddlers, and Families1994 Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (DC 0-3). Arlington, VA.

For information on conferences, publications, and trainings, contact the National Center at 734 15th Street, NW, 10th Floor, Washington, DC 20005-1013. Tel 202-638-1144, FAX 202-638- 0851, e-mail dcnccip @ aol.com

Pennsylvania Department of Education 1995 Guidelines for Effective Behavioral Support. Harrisburg, PA. Pennsylvania Office of Mental Retardation1991 Positive Approaches Bulletin. Harrisburg, PA.

Prizant, Barry 1996 "Brief Report: Communication, Language, Social, and Emotional Development," in JADD, Vol. 26, No. 2.

Quill, Kathleen (ed.) 1995 Teaching Children with Autism: Strategies to Enhance Communication

and Socialization. Delmar Publishers.

Rocco, Susan 1996 "Toward Shared Commitment and Shared Responsibility," in Samuel J.

Meisels and Emily Fenichel (eds.), New Visions for the Developmental Assessment of Infants and Children. Washington: Zero to Three/The National Center for Infants, Toddlers and Families.

Rogers, Sally and Hal Lewis 1989 "An Effective Day Treatment Model for Young Children with Pervasive

Developmental Disorders," Journal of the American Academy of Child Psychiatry, Vol. 28, No. 2.

Sacks, Oliver1995 An Anthropologist on Mars. New York: Alfred Knopf.

Schopler, Eric, Gary Mesibov and K. Hershey 1997? "Structured Teaching," in Assessment and Management of Behavior Problems in Autism, E. Schopler and G. Mesibov (eds.). New York: Plenum Press. Schopler, Eric and Gary Mesibov 1995 Learning and Cognition in Autism. New York: Plenum Press.

Thelen, Esther1995 "Motor Development: A New Synthesis," American Psychologist, 50, No. 2 (Feb).

Thelen, Esther and Linda B. Smith1994 A Dynamic Systems Approach to the Development of Cognition and Action. Cambridge, MA: MIT Press/Bradford Books.

Twachtman-Cullen, Diane 1996 "What's a Parent To Do: Sorting Through the `Breakthroughs' in Autism" from the Reporter, Institute for the Study of Developmental Disabilities, Vol. 2, No. 1 (Fall).

_______________________ 1997 "Comprehension: The Power that Fuels Expression," The Morning News. Jenison, Michigan: Jenison Public School, (Spring).

Tsai, Luke and Mohammad Ghaziuddin1996 "Autistic Disorder," in Textbook of Child and Adolescent Psychiatry, 2nd Edition, Jerry M. Wiener (ed.). American Psychiatric Press.

Welch, M.G. 1987 "Toward Prevention of Developmental Disorders, Pennsylvania Medicine, Vol. 90.

Wetherby, Amy M. and Barry M. Prizant

1996 "Toward Earlier Identification of Communication and Language Problems in Infants and Young Children," in New Visions for the Developmental Assessment of Infants and Young Children, Samuel Meisels and Emily Fenichel (eds.). Washington: Zero to Three/ National Center for Infants, Toddlers, and Families.

Williams, Donna 1996 Like Color to the Blind. New York: Random House.

_______________ 1994 Somebody Somewhere. New York: Random House, 1994

______________ 1992 Nobody Nowhere. New York: Times Books, 1992.

Wing, Lorna (ed.) 1976 Early Childhood Autism: Clinical, Educational, and Social Aspects. Oxford: Pergamon Press.

Wing, Lorna1975 Autistic Children: A Guide for Parents. London: Constable.