We Cured Our
Son's Autism
By Karyn Seroussi
Copyright © 2000 Karyn Seroussi
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)
Fax 609-737-8453
http://www.autismndi.com/
Publishes ANDI News, a newsletter containing recipes,
research updates, and articles by parents and
physicians.
The Autism Research Institute
Fax 619-563-6840
www.autism.com/ari/
Provides information about autism research and
treeatment, including alternative therapies. Organizes
the annual DAN! (Defeat Autism Now!) Conference.
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