We
Cured Our Son's Autism
By 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.
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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. 2/00

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. Reprinted by permission of the author.
Copyright
© 2000 Karyn Seroussi. Reprinted with permission from the February
2000 issue of Parents Magazine.
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2001
Autism Rally, Conference, Hearings, and Caucus

Book
of the Week:
Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome

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