We Cured Our Son's Autism

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We Cured Our Son's Autism

Karyn Seroussi

 

 

http://www.chetday.com/autismdiet.htm

 

 

When the doctors said our son would be severely disabled for life,

we set out to prove them wrong.

 

When the psychologist examining our 18-month-old son told me that

she thought Miles had autism, my heart began to pound. I didn't know

exactly what the word meant, but I knew it was bad. Wasn't autism

some type of mental illness -- perhaps juvenile schizophrenia? Even

worse, I vaguely remembered hearing that this disorder was caused by

emotional trauma during childhood. In an instant, every illusion of

safety in my world seemed to vanish.

 

Our pediatrician had referred us to the psychologist in August 1995

because Miles didn't seem to understand anything we said. He'd

developed perfectly normally until he was 15 months old, but then he

stopped saying the words he'd learned -- cow, cat, dance -- and

started disappearing into himself. We figured his chronic ear

infections were responsible for his silence, but within three

months, he was truly in his own world.

 

Suddenly, our happy little boy hardly seemed to recognize us or his

3-year-old sister. Miles wouldn't make eye contact or even try to

communicate by pointing or gesturing. His behavior became

increasingly strange: He'd drag his head across the floor, walk on

his toes (very common in autistic children), make odd gurgling

sounds, and spend long periods of time repeating an action, such as

opening and closing doors or filling and emptying a cup of sand in

the sandbox. He often screamed inconsolably, refusing to be held or

comforted. And he developed chronic diarrhea.

 

As I later learned, autism -- or autistic spectrum disorder, as

doctors now call it -- is not a mental illness. It is a

developmental disability thought to be caused by an anomaly in the

brain. The National Institutes of Health estimates that as many as 1

in 500 children are affected. But according to several recent

studies, the incidence is rapidly rising: In Florida, for example,

the number of autistic children has increased nearly 600 percent in

the last ten years. Nevertheless, even though it is more common than

Down syndrome, autism remains one of the least understood

developmental disorders.

 

We were told that Miles would almost definitely grow up to be

severely impaired. He would never be able to make friends, have a

meaningful conversation, learn in a regular classroom without

special help, or live independently. We could only hope that with

behavioral therapy, we might be able to teach him some of the social

skills he'd never grasp on his own.

 

I had always thought that the worst thing that could happen to

anyone was to lose a child. Now it was happening to me but in a

perverse, inexplicable way. Instead of condolences, I got

uncomfortable glances, inappropriately cheerful reassurances, and

the sense that some of my friends didn't want to return my calls.

 

After Miles' initial diagnosis, I spent hours in the library,

searching for the reason he'd changed so dramatically. Then I came

across a book that mentioned an autistic child whose mother believed

that his symptoms had been caused by a " cerebral allergy " to milk.

I'd never heard of this, but the thought lingered in my mind because

Miles drank an inordinate amount of milk -- at least half a gallon a

day.

 

I also remembered that a few months earlier, my mother had read that

many kids with chronic ear infections are allergic to milk and

wheat. " You should take Miles off those foods and see if his ears

clear up, " she said. " Milk, cheese, pasta, and Cheerios are the only

foods he'll eat, " I insisted. " If I took them away, he'd starve. "

 

Then I realized that Miles' ear infections had begun when he was 11

months old, just after we had switched him from soy formula to cow's

milk. He'd been on soy formula because my family was prone to

allergies, and I'd read that soy might be better for him. I had

breast-fed until he was 3 months old, but he didn't tolerate breast

milk very well -- possibly because I was drinking lots of milk.

There was nothing to lose, so I decided to eliminate all the dairy

products from his diet.

 

What happened next was nothing short of miraculous. Miles stopped

screaming, he didn't spend as much time repeating actions, and by

the end of the first week, he pulled on my hand when he wanted to go

downstairs. For the first time in months, he let his sister hold his

hands to sing " Ring Around a Rosy. "

 

Two weeks later, a month after we'd seen the psychologist, my

husband and I kept our appointment with a well-known developmental

pediatrician to confirm the diagnosis of autism.

Dr. Susan Hyman gave Miles a variety of tests and asked a lot of

questions. We described the changes in his behavior since he'd

stopped eating dairy products. Finally, Dr. Hyman looked at us

sadly. " I'm sorry, " the specialist said. " Your son is autistic. I

admit the milk allergy issue is interesting, but I just don't think

it could be responsible for Miles' autism or his recent

improvement. "

 

We were terribly disheartened, but as each day passed, Miles

continued to get better. A week later, when I pulled him up to sit

on my lap, we made eye contact and he smiled. I started to cry -- at

last he seemed to know who I was. He had been oblivious to his

sister, but now he watched her play and even got angry when she took

things away from him. Miles slept more soundly, but his diarrhea

persisted. Although he wasn't even 2 yet, we put him in a special-ed

nursery school three mornings a week and started an intensive one-on-

one behavioral and language program that Dr. Hyman approved of.

 

I'm a natural skeptic and my husband is a research scientist, so we

decided to test the hypothesis that milk affected Miles' behavior.

 

We gave him a couple of glasses one morning, and by the end of the

day, he was walking on his toes, dragging his forehead across the

floor, making strange sounds, and exhibiting the other bizarre

behaviors we had almost forgotten.

 

A few weeks later, the behaviors briefly returned, and we found out

that Miles had eaten some cheese at nursery school.

 

We became completely convinced that dairy products were somehow

related to his autism.

 

I wanted Dr. Hyman to see how well Miles was doing, so I sent her a

video of him playing with his father and sister. She called right

away. " I'm simply floored, " she told me. " Miles has improved

remarkably. Karyn, if I hadn't diagnosed him myself, I wouldn't have

believed that he was the same child. "

 

I had to find out whether other kids had had similar experiences. I

bought a modem for my -- not standard in 1995 -- and discovered an

autism support group on the Internet.

 

A bit embarrassed, I asked, " Could my child's autism be related to

milk? "

 

The response was overwhelming.

 

Where had I been? Didn't I know about Karl Reichelt in Norway?

Didn't I know about Paul Shattock in England? These researchers had

preliminary evidence to validate what parents had been reporting for

almost 20 years:

 

Dairy products exacerbated the symptoms of autism.

 

My husband, who has a Ph.D. in chemistry, got copies of the journal

articles that the parents had mentioned on-line and went through

them all carefully.

 

As he explained it to me, it was theorized that a subtype of

children with autism break down milk protein (casein) into peptides

that affect the brain in the same way that hallucinogenic drugs do.

 

A handful of scientists, some of whom were parents of kids with

autism, had discovered compounds containing opiates -- a class of

substances including opium and heroin -- in the urine of autistic

children.

 

The researchers theorized that either these children were missing an

enzyme that normally breaks down the peptides into a digestible

form, or the peptides were somehow leaking into the bloodstream

before they could be digested.

 

In a burst of excitement, I realized how much sense this made. It

explained why Miles developed normally for his first year, when he

drank only soy formula.

 

It would also explain why he had later craved milk: Opiates are

highly addictive. What's more, the odd behavior of autistic children

has often been compared to that of someone hallucinating on LSD.

 

My husband also told me that the other type of protein being broken

down into a toxic form was gluten -- found in wheat, oats, rye, and

barley,

 

and commonly added to thousands of packaged foods.

 

The theory would have sounded farfetched to my scientific husband if

he hadn't seen the dramatic changes in Miles himself and remembered

how Miles had self-limited his diet to foods containing wheat and

dairy.

 

As far as I was concerned, there was no question that the gluten in

his diet would have to go. Busy as I was, I would learn to cook

gluten-free meals. People with celiac disease are also gluten-

intolerant, and I spent hours on-line gathering information.

 

Within 48 hours of being gluten-free, 22-month-old Miles had his

first solid stool, and his balance and coordination noticeably

improved. A month or two later, he started speaking -- " zawaff " for

giraffe, for example, and " ayashoo " for elephant. He still didn't

call me Mommy, but he had a special smile for me when I picked him

up from nursery school. However, Miles' local doctors -- his

pediatrician, neurologist, geneticist, and gastroenterologist --

still scoffed at the connection between autism and diet.

 

Even though dietary intervention was a safe, noninvasive approach to

treating autism, until large controlled studies could prove that it

worked, most of the medical community would have nothing to do with

it.

 

So my husband and I decided to become experts ourselves. We began

attending autism conferences and phoning and e-mailing the European

researchers. I also organized a support group for other parents of

autistic children in my community.

 

Although some parents weren't interested in exploring dietary

intervention at first, they often changed their mind after they met

Miles. Not every child with autism responded to the diet, but

eventually there were about 50 local families whose children were

gluten- and casein-free with exciting results.

 

And judging by the number of people on Internet support lists, there

were thousands of children around the world responding well to this

diet.

 

Fortunately, we found a new local pediatrician who was very

supportive, and Miles was doing so well that I nearly sprang out of

bed each morning to see the changes in him. One day, when Miles was

2 1/2, he held up a toy dinosaur for me to see. " Wook, Mommy, issa

Tywannosauwus Wex! " Astonished, I held out my trembling hands. " You

called me Mommy! " I said. He smiled and gave me a long hug.

 

By the time Miles turned 3, all his doctors agreed that his autism

had been completely cured. He tested at eight months above his age

level in social, language, self-help, and motor skills, and he

entered a regular preschool with no special-ed supports. His teacher

told me that he was one of the most delightful, verbal,

participatory children in the class.

 

Today, at almost 6, Miles is among the most popular children in his

first-grade class. He's reading at a fourth-grade level, has good

friends, and recently acted out his part in the class play with

flair. He is deeply attached to his older sister, and they spend

hours engaged in the type of imaginative play that is never seen in

kids with autism.

 

My worst fears were never realized. We are terribly lucky.

 

But I imagined all the other parents who might not be fortunate

enough to learn about the diet. So in 1997, I started a newsletter

and international support organization called Autism Network for

Dietary Intervention (ANDI), along with another parent, Lisa Lewis,

author of Special Diets for Special Kids (Future Horizons, 1998).

We've gotten hundreds of letters and e-mails from parents worldwide

whose kids use the diet successfully. Although it's best to have

professional guidance when implementing the diet, sadly, most

doctors are still skeptical.

 

As I continue to study the emerging research, it has become

increasingly clear to me that autism is a disorder related to the

immune system. Most autistic children I know have several food

allergies in addition to milk and wheat, and nearly all the parents

in our group have or had at least one immune-related problem:

 

thyroid disease, Crohn's disease, celiac disease, rheumatoid

arthritis, chronic fatigue syndrome, fibromyalgia, or allergies.

Autistic children are probably genetically predisposed to immune-

system abnormalities, but what triggers the actual disease?

 

Many of the parents swore that their child's autistic behavior began

at 15 months, shortly after the child received the MMR (measles,

mumps, rubella) vaccine. When I examined such evidence as photos and

videotapes to see exactly when Miles started to lose his language

and social skills, I had to admit that it had coincided with his

MMR -- after which he had gone to the emergency room with a

temperature of 106°F and febrile seizures.

 

Recently, a small study was published by British researcher Andrew

Wakefield, M.D., linking the measles portion of the vaccine to

damage in the small intestine -- which might help explain the

mechanism by which the hallucinogenic peptides leak into the

bloodstream.

 

If the MMR vaccine is indeed found to play a role in triggering

autism, we must find out whether some children are at higher risk

and therefore should not be vaccinated or should be vaccinated at a

later age.

 

Another new development is giving us hope: Researchers at Johnson

and Johnson's Ortho Clinical Diagnostics division -- my husband

among them -- are now studying the abnormal presence of peptides in

the urine of autistic children.

 

My hope is that eventually a routine diagnostic test will be

developed to identify children with autism at a young age and that

when some types of autism are recognized as a metabolic disorder,

the gluten and dairy-free diet will move from the realm of

alternative medicine into the mainstream.

 

The word autism, which once meant so little to me, has changed my

life profoundly. It came to my house like a monstrous, uninvited

guest but eventually brought its own gifts. I've felt twice blessed -

- once by the amazing good fortune of reclaiming my child and again

by being able to help other autistic children who had been written

off by their doctors and mourned by their parents.

 

Adapted from the book Unraveling the Mystery of Autism and Pervasive

Developmental Disorder: A Mother's Story of Research and Recovery by

Karyn Seroussi. Published by Simon & Schuster February 2000.

 

For more info, contact:

 

The Autism Network for Dietary Intervention (ANDI)

_________________

JoAnn Guest

mrsjoguest

www.geocities.com/mrsjoguest/Genes