We Cured Our Son's Autism
© 2000 Karyn Seroussi
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.
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.
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.
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.
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.
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.
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.
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."
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.
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."
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."
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.
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.
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."
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?"
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.
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.
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
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.
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
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.
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.
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.
worst fears were never realized. We are terribly lucky.
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
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
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.
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.
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.
more info, contact:
Autism Network for Dietary Intervention (ANDI)
Publishes ANDI News, a newsletter containing recipes, research updates,
and articles by parents and physicians.
Autism Research Institute
Provides information about autism research and treeatment, including
alternative therapies. Organizes the annual DAN! (Defeat Autism Now!)
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