SECOND EDITION 2010 • AUTISM ADVOCATE 3

departmentsPAGE 61

Autism Society 2010 National Awards

PAGE 66

What’s New at the Autism Society

» Autism Society News

» Advocacy

» Conferences

» Chapter News

spotlight PAGE 12

BY JAMES F. GARDNER, PH.D.

WHAT REALLY MATTERS Defi ning Personal Quality of LifeThe elements that defi ne quality of life for individuals with disabilities and mental illness are changing. Quality of life is now being defi ned in very personal terms. Individuals are demanding and advocating better results and outcomes for themselves. Organizations need to respond by facilitating outcomes for the person receiving services and supports, thereby internalizing and personalizing quality. The Council for Quality Leadership has developed self-determined and –defi ned Personal Outcome Measures®, which can enable service and support systems and organizations to learn about an individual’s defi nition for each of these outcomes, and therefore increase the relevance and effectiveness of services and supports to the individual, leading to increased quality of life.

CO

VER

PH

OTO

GR

AP

H: R

ED W

IGG

LER FA

RM

contentsSummer 2010

PAGE 7

The Role of State Developmental Disability SystemsEvolving to Meet the Needs of Those We ServeBY NANCY THALER

PAGE 18

Employment and HealthAre They Connected?BY STEPHANIE BIRMINGHAM

PAGE 23

When Parents are EmployedPlanning for Increased Flexibility and Improving Quality of LifeBY EILEEN M. BRENNAN, PH.D., JULIE M. ROSENZWEIG, PH.D., LCSW, AND LISA A. LIEBERMAN, MSW, LCSW

PAGE 28

The Importance of Recreational PursuitsRunning Beyond Expectations and LabelsBY L. LYNN STANSBERRY BRUSNAHAN, PH.D.

PAGE 32

Quality of Life = Fitness + FunThe Daniel Jordan Fiddle Foundation Addresses Health and Wellness for Adults on the SpectrumBY LINDA WALDER FIDDLE, ESQ.

PAGE 36

A Model of Positive Behavior Support for Individuals with Autism and Their FamiliesThe Family Focus ProcessBY BARBARA BECKER-COTTRILL, ED.D.

PAGE 42

Finding FitnessHow (and How Not) to Create Exercise Programs for the ASD PopulationBY ERIC CHESSEN, M.S., YCS

PAGE 48

A Healthy Mouth Leads to a Healthy BodyOral Healthcare for Children with AutismBY DR. ROBERT PORPER, DDS

PAGE 54

Autism Diets and NutritionProviding Health Benefi tsfor Many Children with ASDBY JULIE MATTHEWS, CNC

PAGE 62

Creating Healthy EnvironmentsThe Importance of Reducing Our Risk to Toxic ExposuresBY CATHY FICKER TERRILL, M.S.

features

The Autism AdvocateAs a member of the Autism Society, you will receive this publication. For membership information, visit www.autism-society.org/join.

SECOND EDITION 2009, Volume 55

R2

ww

w.a

utis

m-s

ocie

ty.o

rg

IN THIS ISSUE:Learning the SignsImportance of the Medical EvaluationThe Role of AssessmentTemple Grandin’s Mother on Helping Parents Cope

And more…

AUTISMAdvocate

Early Intervention

A HEAD START TOWARD A BETTER QUALITY OF LIFE

AUTISMSOCIETYImproving the Lives of All Affected by Autism

THIRD EDITION 2009, Volume 56

R3

ww

w.a

utis

m-s

ocie

ty.o

rg

IN THIS ISSUE:Addressing the Inequality of Adult Autism ServicesDesigning Spaces for People with ASDWhat to Look for in Residential ServicesWhen Your Child Leaves Home

And more…

AUTISMAdvocate

Finding a HomeRESIDENTIAL OPTIONS FOR INDIVIDUALS ON THE SPECTRUM

FIRST EDITION 2010 AUTISM ADVOCATE 1

ww

w.a

utis

m-s

ocie

ty.o

rg

IN THIS ISSUE:Research on Social

Skills TrainingA High School Peer

Mentoring ProgramTeaching and Supporting

Social Skills at SchoolMaking Connections Online

And more...

THE CRITICAL IMPORTANCE

OF SOCIAL SKILLS

FIRST EDITION 2010 , Volume 58 R1

AUTISMAdvocate

FRIENDSmaking

FOURTH EDITION 2009, Volume 57

R4

ww

w.a

utis

m-s

ocie

ty.o

rg

IN THIS ISSUE:Involving Your Child in the Post-High School Transition ProcessTransitions in the Elementary GradesSuccessfully Transitioning Between JobsTransitions in Sibling Relationships

And more…

MEANINGFUL PLANNING TO ENHANCE QUALITY OF LIFE

Transitions in Autism

AUTISMAdvocate

ILLU

ST

RA

TIO

N C

OU

RT

ES

Y O

F IS

TO

CK

PH

OT

O.C

OM

MANY THANKS! TO RED WIGGLER COMMUNITY FARM IN GERMANTOWN, MD., for allowing us to publish photos of their farm, which employs adults with developmental disabilities. For more information, visit www.redwiggler.org.

AUTISM ADVOCATE • SECOND EDITION 2010

] Diet anD nutrition

FEATURE

BY JuLie MattHeWS, CnC

Diet can help some children with autism.

Autism is a whole-body condition;

therefore, it is imperative for your child’s

health that you understand the connection

between what is happening in your child’s

body and brain and what you are feeding

him or her daily. It is also important to

champion your child’s condition by noting

every healing strategy that is working—for

some children, changes in diet, additions

of special vitamins and minerals, and other

nutritional considerations can improve

their condition.

Leading autism clinicians recognize that

the bodies of children with autism are

unique and require specific care, including

enzymes for digestion, medical treatment

for yeast infections, attention to digestive

issues, special dietary requirements,

nutrient and fatty acid supplementation,

behavioral therapy and more. Many

practitioners recommend multifaceted

treatment plans that balance physician-

recommended approaches and nutrition-

centered autism diets.

Some parents hesitate to try autism diets

because they don’t know if special diets

work, why they may work or how they

work. When parents correctly implement

specific autism diets, improvements in

gastrointestinal problems (including

diarrhea and constipation), language,

learning, focus, attention, eye contact,

behavior, sleep difficulties, toilet training

and skin rashes/eczema have been observed.

As a Certified Nutrition Consultant, I have

been supporting children with autism for

almost a decade, specializing in the science

and application of autism diets, nutrition

and supplementation. My life’s work is

dedicated to the millions of kids worldwide

who live with autism and their parents who

are passionately committed to helping their

children find hope and healing.

I joined the field of autism nutrition after

significant study, training and collaboration

with parents, physicians, nutritionists and

educators who have hands-on experience

with autism diagnosis, treatment, research

and nutrition. Relying on my experience

and research, in this article I will explain

the benefits of autism-specific diets and

why they should be considered when

implementing your child’s treatment plan.

Autism Diets and NutritionProviding Health Benefits for Many Children with ASD iL

LuS

tr

at

ion

Co

ur

te

SY

oF

iSt

oC

KP

Ho

to

.Co

M

AUTISM ADVOCATE • SECOND EDITION 2010

] Diet anD nutrition

a Child’s “Gut”: autism Symptoms Begin HereThe common physical symptoms of

children with autism often include

diarrhea, constipation, bloating and

GI pain, frequent infections, sleeping

challenges and inflammation/pain. For

many children with autism, when things

go awry in the “gut,” negative behavioral

changes and cognitive problems occur

or are exacerbated. For many, food

intolerances, imbalanced biochemistry

and digestive problems are at the core of

these symptoms. These weaknesses in

physiological functioning can be directly

tied to biochemical processes that are

affected by diet—the absence of requisite

nutrients and/or the presence of offending

substances. For many children, altering

food choices and adding supplementation

affects these processes, promotes healing

and can improve autism symptoms.

Why Diet Can Help: autism as a Whole-Body DisorderHistorically, autism was considered a

“mysterious” brain disorder, implying that

it begins and ends in the brain. Through

the array of common physical symptoms

observed and the breakthrough work

of many autism researchers, a more

appropriate “whole-body disorder” (that

the brain is affected by the biochemistry

generated in the body) perspective of

autism has emerged. Martha Herbert,

M.D., Ph.D., the Autism Society’s Director

of Treatment Guided Research, who was

one of the first to describe autism this way,

refers to the brain as “downstream” from

the body’s functioning, as illustrated in the

figure below.

On the left side of the chart are the complex

set of factors that influence autism: toxins,

environmental factors, digestive health and

inflammation. The right side indicates the

effects these factors can have on the brain.

Imbalanced biochemistry can affect the

brain and the symptoms of autism in the

following ways:

• When there is yeast overgrowth in the

body, toxins enter the bloodstream and

make their way to the brain where they

From: Nourishing Hope for Autism

Whole Body Disorder

Brain iS DoWnStreaM1. Yeast toxins2. Undermethylated

neurotransmitters3. Brain inflammation4. Increased toxicity5. Nutrient deficiencies6. Opiates

iLLu

St

ra

tio

n C

ou

rt

eS

Y o

F iS

to

CK

PH

ot

o.C

oM

SECOND EDITION 2010 • AUTISM ADVOCATE

Diet anD nutrition [

can cause symptoms such as spaciness,

foggy thinking and drunken behavior.

• When the biochemistry of

methylation is not working properly,

neurotransmitters cannot be

methylated (and therefore are not

“activated”) as they need to be,

increasing the likelihood of anxiety,

depression, ADHD and sleeping issues.

• Inflammation in the gut and brain can

be caused by toxins, food sensitivities,

or bad bacteria or yeast in the gut.

This can cause pain that may lead

to behaviors such as self-injurious

activity, leaning over furniture, eye

poking and head banging.

• When detoxification is poor (proven

common in autism), toxins from

food and the environment (such as

salicylates, artificial ingredients, MSG,

mercury and aluminum) can build up

and act like drugs on the brain, causing

irritability, aggression and brain/

cellular damage.

• When digestion is poor and the gut is

too permeable (leaky gut), the nutrients

that are supposed to go through the

digestive system cannot be absorbed

properly. This leads to nutrient

deficiencies, which can affect all

cellular function, including poor brain

function and immune system failure.

• Opiates can be created from inadequate

breakdown of gluten, casein and soy,

leading to symptoms of opiate excess,

such as foggy thinking, insensitivity to

pain, opiate addiction and withdrawal,

and irritability.

According to Hippocrates, “All disease

begins in the gut,” and this certainly

proves true with autism. As you can see,

digestion and gut health affect both the

brain and autism’s physical symptoms.

Food interacts with the gut constantly

and can have a profound impact on these

symptoms. Removing the offending foods

that contribute to inflammation, trigger

immune response (food sensitivities)

and increase toxicity, and adding foods

and supplements that support a healthy

ecosystem and provide needed nutrients

can ease symptoms.

Understanding that gut and brain are

connected helps explain why autism

symptoms and overall health can be

improved through a diet that supports

digestion/GI health and biochemistry,

although each individual will have different

responses to the addition of one of several

autism diets and nutritional changes.

GI health and biochemistry are partners.

Biochemistry involves cellular processes

that require energy, nutrients and enzymes

to function, and proper digestion is

required to obtain and absorb the nutrients

needed for these processes. If there are

insufficient nutrients, an inability to

digest and absorb nutrients, a limitation

on a particular nutrient or an inability to

convert a nutrient to the active and usable

form, biochemistry can go awry.

By supporting digestion and biochemistry

through diet and nutrition, we can often

improve the symptoms of autism. Following

are several examples of how food and

nutrients can improve the health of the gut

and the whole body’s biochemistry, and

positively affect the symptoms of autism.

How to Begin: Dietary Modifications to improve Leaky Gut and Gut inflammationImproving digestion, reducing

inflammation and healing the gut are

important steps in overall health and

healing. Behavior, language, eye contact

and skin rashes are a few of the areas that

can improve. The following dietary changes

are a good place to start:

• remove foods that inflame the gut.

Gluten, casein, soy, corn and eggs are

common offenders. The exact foods to

remove will depend on the individual;

however, gluten- and casein-free

diets are among the most popular and

effective. Sugar and refined oils also

contribute to inflammation.

• add foods that heal the gut. Foods

such as ginger and turmeric reduce

inflammation. Fish oil, flax seeds and

walnuts contain omega-3 fatty acids

that have anti-inflammatory properties.

Fermented foods help heal the gut.

Butyric acid is a short-chain fatty acid

(often produced by good bacteria from

the consumption of soluble fiber) found

in butterfat and ghee that helps nourish

the intestinal lining.

• include foods that supply beneficial

bacteria. Fermented foods, such as

non-dairy yogurt, young coconut kefir

and cultured vegetables, help supply

good bacteria that reduce inflammation

and create an environment that is

healing.

• add foods that increase beneficial

bacteria levels. Prebiotics are foods,

often high in soluble fiber, that support

good bacteria and increase levels in the

By supporting digestion and biochemistry through diet and nutrition, we can often improve the symptoms of autism.

AUTISM ADVOCATE • SECOND EDITION 2010

] Diet anD nutrition

gut. These foods include: asparagus,

bananas, beans/legumes, chicory

root, garlic, honey, kefir/yogurt, leeks,

onions and peas.

nutrient DeficienciesIs your child a picky eater? Due to sensory

issues, many children on the autism

spectrum dislike the tastes and textures of

certain foods; therefore, nutrient deficiencies

are common. Specific nutrients are required

for complex biochemical processes, and

nutrients can only be digested and absorbed

through food and supplementation when

the GI tract is functioning well. In addition

to boosting digestion, it is important to get

a wide variety of nutrients through foods.

Some ways to boost nutrient intake include:

• increase the quality and digestibility

of food. Boost the amount of nutrient-

dense foods, such as vegetables, in the

diet. For ideas on increasing variety, see

the list of nutrient-dense foods below.

Soaking and fermenting grains increases

digestibility.

• Sneak in vegetables for picky eaters.

Pureeing organic vegetables and

adding them to meatballs, smoothies,

pancakes, muffins and sauces is a great

way to disguise them. Try juicing to get

concentrated nutrients that are easy to

digest—making ice pops from organic

juices or smoothies is a good way to

serve nutrient-dense vegetables and

fruits to kids.

• add supplementation. It can be

difficult for a child with autism to

get the required therapeutic levels

of nutrients through food. Adding

vitamins, minerals, fatty acids or amino

acids can be helpful in boosting needed

nutrients. Introducing enzymes that aid

with digestion of foods and probiotics

can supply beneficial bacteria. Calcium

supplementation is particularly

important when dairy is removed

from the diet.

Yeast overgrowthYeast is a harmful organism that can

affect energy level, clarity of thought and

intestinal health. Yeast overgrowth is often

triggered by antibiotic use. Yeast overgrowth

creates gut inflammation and decreases gut

function. The following dietary practices

help rid the body of yeast overgrowth:

• remove sugars. Sugars feed yeast,

contributing to yeast overgrowth.

Reduce the amount of cookies, muffins

and other sugar-rich treats . Even sugar

in fruit, especially dried fruit and fruit

juice, can be a problem for some.

• remove yeast-containing foods. Bread,

grapes, plums, aged meats and cheeses,

and vinegars can feed yeast and should

be removed.

• reduce or remove starches. Like sugar,

carbohydrates feed yeast. Reducing

refined carbohydrates that convert to

sugar rapidly and have little nutritional

value decreases the foods yeast have to

feed on. Some people choose diets such

as the Specific Carbohydrate Diet

(SCD) that eliminates starches that can

feed yeast, such as potatoes, corn and

gluten-free grains.

• add probiotic-rich foods. Fermented

foods contain live beneficial bacteria

that crowd out yeast and support a

healthy internal environment; thus,

adding probiotic supplementation is

recommended.

toxicity and Poor DetoxificationWhen detoxification is not working

optimally or is overburdened by pre-existing

toxins, avoiding additional toxins from

food is important. These chemicals can

cross the blood-brain barrier and affect the

brain, creating hyperactivity, aggression,

irritability and sometimes self-injurious

behavior. Ways to remove toxins include:

• avoid food additives. Artificial

ingredients are very difficult for the

body to process, so avoiding artificial

colors, flavors, preservatives and MSG

is crucial.

• avoid toxins in food supply and meal

preparation. Prevent the introduction of

further toxins into the body by avoiding

aluminum and plastic in cooking. This

iLLu

St

ra

tio

n C

ou

rt

eS

Y o

F iS

to

CK

PH

ot

o.C

oM

AUTISM ADVOCATE • SECOND EDITION 2010

] Diet anD nutrition

includes aluminum pans and aluminum

foil, as well as storing and microwaving

in plastic. Minimize or eliminate canned

foods and drinks.

• eat organic. Eat high-quality foods that

are free of pesticides and hormones,

such as organic produce, grass-fed

meat, and pastured eggs and chickens.

Non-organic chicken can contain

arsenic. Eating organic foods avoids

consumption of pesticides, other

harmful chemicals, GMOs (genetically

modified organisms) and hormones.

Organic foods also provide higher

nutrient content.

• add foods that support the liver.

Antioxidants, such as beta carotene;

vitamins A, C and E; B vitamins,

including folic acid; and selenium

support liver detoxification. Sulfur-

rich foods, such as broccoli, cabbage,

cauliflower, collard greens, kale

and Brussels sprouts are especially

beneficial in liver detoxification

processes.. Spices, such as cinnamon

and turmeric, support the liver.

Glutathione is a powerful antioxidant,

and adequate levels are supported

by the consumption of asparagus,

watermelon, broccoli, papayas, avocados

and the herb, milk thistle, as well as

through nutritional supplementation.

Poor Methylation and Sulfation BiochemistryMedical studies have shown that

methylation, transsulfuration and sulfation

are one set of biochemical pathways that do

not function optimally for many children

with autism. These pathways—involved in

the processes of detoxification, heavy metal

elimination, digestion, immune function,

cellular/metabolic function, gut integrity

and microbial balance—can be supported, as

follows, by avoiding certain substances and

supplying needed nutrients.

• remove phenolic foods. When the

biochemical processes of methylation,

transsulfuration or sulfation are not

functioning well, limiting phenols

and salicylates is important. Artificial

phenols occur in petroleum-derived

additives, such as artificial colors,

flavors and preservatives. Even

naturally occurring phenols, called

salicylates, present in organic and

non-organic foods such as grapes,

raisins, apples, berries, almonds,

honey and more, can create a variety

of behavioral, emotional and physical

symptoms.

• improve methylation and sulfation

through supplementation.

Supplementing with nutrients that

can support these biochemical

pathways is important. Methyl-donors

and methylation/transsulfuration

support, such as vitamin B12, folate,

B6, DMG/TMG, magnesium and

zinc, are important supplements

to consider. Determining which

supplements are needed and adding

them can be helpful to regulating the

biochemistry and reducing autism

symptoms.

I hope that parents and practitioners can

see the possibilities for positive influence

and realize that diet can help autism. Diet

is a powerful personal tool; it has few

downsides and is accessible to everyone.

With diet, parents have greater control

over choices that can have immediate

impact on a child’s daily life. For some

children, improvements can occur right

away as offending foods/substances are

removed from their diet.

Anyone can implement a new diet. A

good way to start is to remove artificial

ingredients, reduce sugar, avoid gluten

and casein, add fermented foods or

probiotics, and include more vegetables.

As you move forward, an autism

practitioner with diet and nutrition

expertise can help determine the best

dietary principles for your child, help get

you out of a food rut and ensure your child

is getting adequate nutrition. They can

also provide food and meal suggestions

as you become fully compliant with the

new diet. Many online autism diet support

groups, books and blogs are available to

help families.

Whether you reach out to a nutrition

consultant or start on your own, getting

good nutrition, avoiding problematic

ingredients and supporting good digestion

are practices that will benefit everyone in

the family.

About the Author JuLie MattHeWS, CnC

Julie Matthews, CNC is an internationally respected Certified Nutrition Consultant specializing in autism spectrum disorders. She provides diet and nutrition intervention guidance backed by scientific research and applied clinical experience. She is the author of the award-winning autism diet and nutrition guide Nourishing Hope for Autism and Cooking to Heal autism nutrition cookbook. Julie is a Defeat Autism Now! practitioner, conference educator and nutrition faculty member. For more information, visit NourishingHope.com.