My 26 year old stepson has just recently been diagnosed with Asperger's Syndrome and the challenges of daily living with him has been and continues to be physically, emotionally and financially exhausting for my husband and myself. We have discovered that there is little help available to parents and other caregivers because of lack of knowledge and understanding of this illness/condition. Hopefully, more people will acknowledge and support further research with this important health issue. Another health related consequence that is increasing, is the number of adult autistic individuals that are "self-medicating" with alcohol, prescription drugs, inhalants and other drugs to hide their being "different".
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Mysteries and Complications
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To appreciate the complexity of the condition, all you have to do is look at the extraordinary range of people who fall under the umbrella diagnosis of autism spectrum disorders. At one end are kids like Charlie Fisher. At 10, he's unable to read and can speak only short sentences. For two years, he head-banged several times a day, says his mother, Kristina Chew, who writes a blog called autismvox.com. Chew believes that vaccines had nothing to do with her son's condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received. Today, Charlie is doing much better, even learning to surf, but he is still "profoundly different" from other children, says Chew. "There are some things that maybe he can change and other things I hope people can come to accept."
On the other end: Ari Ne'eman, president of the Autistic Self-Advocacy Net work and a 20-year-old university student. Ne'eman was diagnosed at 12 with Asperger's syndrome, a high-functioning subgroup of the spectrum. Exceedingly articulate, Ne'eman says he has never struggled with speech, but he has always had difficulty understanding nonverbal forms of communication, like sarcasm. He also flaps his hands occasionally and he can't stand the feel of certain fabrics, especially velvet.
With the vast range in abilities comes a striking diversity in thinking, too. Over the years, the autism community has divided into camps, often with conflicting ideas about how to view and treat the disorder. Elizabeth Horn, president of the Autism Recovery Consortium, believes vaccines may play a role. Kids "slip away after getting these shots," she says. Horn, whose daughter, Sophia, has autism, believes children on the spectrum are sick, but can recover with help. Sophia, 12, is on a special diet, avoiding artificial colors and chemicals, and she takes supplements like magnesium and vitamin D. Ne'eman, on the other hand, believes in neurodiversity, the idea that differences in human behavior should be celebrated, not fixed. People with autism should be called "autistic people," he says, not "people with autism," the language favored by mainstream advocacy groups. "Our feeling is that the autism spectrum is an intrinsic part of our personality that cannot be separated," says Ne'eman. And he worries about research that might one day locate genes and other markers that could help doctors test for autism. Researchers say such knowledge would allow them to intervene early, during a critical window of development in the first year of life. Ne'eman's fear? That autism will become like Down syndrome—essentially selected out of the population.
It's a provocative idea. But the ultimate goal of the researchers, and the many families who support their work, is to solve the mystery of autism. Clarity is what we need, and science is the way we'll get there.
Editor's note: In an earlier version of this story, we said that the MMR vaccine once contained thimerosal. It did not. Other childhood vaccines, however, did contain the mercury-based preservative.
With Karen Springen
© 2008
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