We Cured Our Son's Autism 
Parents Magazine - February, 2000
by Karyn Seroussi
See article
in German
(Deutsch) or French
(Français)
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 the 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."
Miles surprised everyone. 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 computer-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 resolved. 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, Crohns 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 identity 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. Reprinted by
permission of the author.) Order
a signed copy of Karyn's book
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