Manual Next Stop: An Autistic Son Grows Up

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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.


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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. 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 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.

Next stop: a son with autism grows up

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. 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 -- 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. 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.

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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.

The children who leave autism behind

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, month-old Miles had his first solid stool, and his balance and coordination noticeably improved.

Adults with Autism | Interactive Autism Network

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.

He smiled and gave me a long hug.

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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.

But I imagined all the other parents who might not be fortunate enough to learn about the diet. 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.