Seroussi, Karyn 1965-

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SEROUSSI, Karyn 1965-

PERSONAL: Born 1965; married a chemist; children: Miles.

ADDRESSES: Office—ANDI, P.O. Box 17711, Rochester, NY 14617-0711.

CAREER: Small-business owner; cofounder of Autism Network for Dietary Intervention (ANDI) and publisher of ANDI News (newsletter).

WRITINGS:

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery (memoir), Simon & Schuster (New York, NY), 2000.

SIDELIGHTS: Karyn Seroussi's book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, documents her successful struggle to help her son, Miles, who was diagnosed with autism at the age of eighteen months. Miles developed normally until he was fifteen months old and then stopped communicating normally. He began to act in a manner associated with autism: repeating actions, crying, and refusing to be held. He also developed chronic diarrhea and ear infections. Seroussi noted in an article in Parents Magazine that "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 Institute of Health estimates that as many as one 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." Seroussi and her husband, a chemist, were told that Miles would grow up severely impaired.

When Seroussi began researching autism she discovered references to a link between the condition and milk allergy. She realized that her son's ear infections had begun when she switched him from soy to cow's milk. She then eliminated all dairy from his diet. His condition improved, and when Seroussi took him to see Susan Hyman, a developmental psychologist, she described these improvements, but Hyman, after testing the child, confirmed a diagnosis of autism. Improvement continued, and to test their theory, Seroussi and her husband gave Miles two glasses of milk and watched his behavior temporarily deteriorate.

Seroussi sent a videotape to Dr. Hyman, who was amazed by Miles's improvement. Seroussi bought a modem for her computer and found an autism support group on the internet. What she discovered was that preliminary evidence on the milk link had already been verified by researchers in England and Norway. She found that in journal articles "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." Seroussi realized that this was the reason Miles had craved milk; opiates are highly addictive.

The Seroussis also found that gluten found in wheat, rye, oats, and barley, which are added to thousands of packaged foods, can break down into a toxic form. Within two days of being gluten-free, Miles, now twenty-two months old, had his first solid stool, and his coordination and balance improved. A month later he began to speak again. Seroussi's theories received no support from her doctors, including Miles's pediatrician, geneticist, and neurologist, who dismissed any connection between autism and diet. The parents attended conferences, e-mailed European researchers, and organized a local support group. Although Seroussi acknowledges that not all autistic children are helped by dietary modifications, fifty families who made the dietary changes did see improvement in their children. Seroussi finally found local professional support with a new pediatrician, and by Miles's third birthday, he was declared cured. At age six he was reading at a fourth-grade level and living a normal happy life.

Seroussi established the Autism Network for Dietary Intervention (ANDI) with Lisa Lewis, author of Special Diets for Special Kids. They maintain a Web site, publish a newsletter, and communicate by e-mail with parents around the world. Seroussi continued her research, which indicated that autism is related to the immune system. She discovered that nearly all the children in her group had at least one immune-related problem, but she was still looking for the factor that triggered the disease. Some parents felt their children's behavior changed after they received the MMR (measles, mumps, rubella) vaccine. Seroussi realized that following Miles's MMR, she had taken him to the emergency room with febrile seizures and a temperature of 106 degrees. Seroussi noted that British researcher Andrew Wakefield had published a study linking the measles portion of MMR to small intestine damage, "which might help explain the mechanism by which the hallucinogenic peptides leak into the bloodstream." Seroussi said that if this is the case, it should be determined if some children are at higher risk, and whether they should receive the vaccine at a later age or not at all. Seroussi's husband is one of a group of researchers who study the abnormal presence of peptides in the urine of autistic children. Seroussi writes that her 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."

Booklist contributor William Beatty noted that in the book, Seroussi "gives practical advice to others facing similar child-development problems and points them to helping organizations." "Seroussi has written a book that will give hope to many families," wrote a Publishers Weekly reviewer.

BIOGRAPHICAL AND CRITICAL SOURCES:

BOOKS

Seroussi, Karyn, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, Simon & Schuster (New York, NY), 2000.