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As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became powerful and articulate advocates. Even longtime autism researchers say families have really led the way. "Beyond raising awareness," says Dr. Thomas Insel, director of the National Institute of Mental Health, "families have become the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive, who could have a meltdown at any moment. They become highly skilled at knowing what helps."

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But raising Isabel has its own rewards. Isabel's sister, Olivia, 13, is "like a third parent," says Grinker. The family judges Isabel not by the standards of others but by how far she has come. "When Isabel achieves something, I feel like we're a team, like we all did it, and I feel incredibly rewarded," he says. For now, that is enough.

© 2006

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Member Comments

  • Posted By: momtotwo @ 02/28/2009 9:05:20 AM

    Seriously, I get so tired of the subtle lies laced throughout articles like this one. Overall this article was good, and brought up quite a few interesting points, but makes an attempt to propagate the myth that the rise in autism is solely due to broader diagnosis and awareness. If that were so, why wasn't there an equally dramatic drop in those diagnosed as "mentally retarded" or "emotionally disturbed"? I think most of us can SEE the difference, even without "scientific studies" (of dubious motivation). When I was growing up there was that one strange kid in my class, the one totally obsessed with Ninja Turtles, who probably would now be diagnosed with Asperger's. That was it. I can't think of a single other child I was in contact with who would fit today's diagnosis. Now I can't even walk into WalMart without seeing multiple children clearly and obviously on the spectrum. Time to wake up guys. There's more going on here than a change in diagnosis.

  • Posted By: hexxa @ 02/27/2009 2:39:31 PM

    What makes you think reproductive choices have anything to do with it? If it became more and more prominent around 1943, there are a million other changes it could be. There have been enough other changes in food preparation and additives, in manufacturing, in prenatal medicine, and after all in DIAGNOSIS that ithere seems no reason to blame birth control unless you have an ulterior motive.

  • Posted By: parent of lisa @ 11/17/2008 8:09:59 AM

    I never used birth control, fertility drugs, and delivered by 27 years of age. The term used by you "these people" is a bit disturbing for parents of a beautiful 13 years girl that happens to have Autism.

    Before you make your observations and sit in judgement of Mrs. Bowers walk one day in her shoes. It seemed to me that she and her psychologist friend were just allowing her son to experience a "normal" activity such as dating; however, with the realization that her son has a disability she wanted to make sure it went smoothly and safely.

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