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Secrets and lies | 1, 2, 3, 4 Months earlier, when we hadn't suspected any problems, I had enrolled Connor part-time in a day care program that mixed typical kids and special needs kids. My mother was physically disabled, and I wanted Connor to grow up in an environment that didn't exclude the handicapped. As it turned out the decision was a blessing -- the staff therapists had seen plenty of autistic kids, unlike my doctor, who had never seen even one (and who admitted humbly, later, that he only got three days of education on autism in med school). But the day care staff was able to diagnose him earlier than many kids with the same condition, which was probably the key to Connor's eventual progress.
I remember very clearly my first reaction to the label of autism: "But my kid's not Rain Man." And he wasn't. When I started reading I found out the real statistics on autism, and they were scary. There was a new crop of kids who had what many called "acquired autism." Unlike Dustin Hoffman's character, the kids progressed normally until their second year and during that period lost any accumulated skills and socially retreated from people. The late-onset kids made the current genetic theory suspect -- if the cause was inborn, the kids would never have gained ground in the first place. Plus, the rate of these kids was staggering: In 10 years the incidence of autism had increased from one child in 10,000 to one child in 500. No one was sure why. So I continued to go to doctors -- immunologists to help me understand why Connor's mosquito bites took six weeks to heal; neurologists to explain why his IQ was so low it couldn't be measured; allergists to tell me why his cheeks and ears got red when he ate certain foods; gastroenterologists to relieve his constipation. Over and over again I was told that the outlook for autistic kids was grim, there was no treatment available for his symptoms, that perhaps I should consider putting him (and myself) on Prozac to help with his behavior. Frustrated by the lack of sympathy and knowledge in the medical community, I networked with parents on the Internet and read as much as I could on my own. I decided to focus on cures instead of causes. Some parents had actually been able to "recover" their children with behavioral therapy, or ABA. This therapy used a one-on-one approach to teach autistic kids how to interact in the world, to talk, to socialize, to learn academic concepts, to regain the skills they had lost or never developed. We started within weeks of Connor's diagnosis. In my heart and in my prayers I asked for one thing: Please, please let him say "mama" to me again. And, amazingly, he did progress. One of Connor's doctors, who had seen the results of the therapy with her own eyes, agreed to write a prescription for this treatment, and I sent it along with my claims to the medical insurer. The claim was denied because the therapy was considered "educational." We continued to spend around $2,000 every month on behavioral treatment anyway. It was the only thing that was working. Within a year Connor began talking again, regaining his old words first: mama (Yes!), daddy, cookie, no. Then he had a cognitive leap when language finally seemed to "click," and he was off and running. He sought out adults and other children to talk to and play games with, caught up to age level in comprehension, bypassed his classmates in academics, and even developed a sense of humor (he renamed "Carnotaurs from Disney's "Dinosaur" movie to "Connor-taurs"). In March of this year he finally lost his autism label, after a year and a half (at 25 hours per week) of intensive ABA. His speech was still a year behind, but it was appropriate, and his therapists predicted that by the time he started first grade he would have the same basic skills as his peers. I breathed my first tentative sigh of relief -- he had a chance of living a normal life. It was only then that I began to focus attention back to the cause of Connor's condition, and listened with interest to the congressional hearings on autism in April, spurred by Rep. Dan Burton (R-Ind.), chairman of the Committee on Government Reform. Burton had almost lost his granddaughter to anaphylactic shock after her DPT vaccination, and lost his grandson to autism within a week of the child's receiving 11 vaccines administered in a single office visit. I read the media coverage, too, most of it from medical professionals who pitied Burton's situation, but tended to dismiss him with red herrings, "out-sensationalizing" Burton with claims that not vaccinating children would lead to outbreaks of life-threatening diseases. (A recent Newsweek story does this too, ending on the note: "Autism aside, the measles virus can kill.") But Burton wasn't interested in eradicating the vaccine program, just in getting some answers about the rise in autism. He asked CDC representatives about their investigations of the Brick, N.J., township where the autism rate was dramatically higher even than the rising national average. He wondered aloud about California Department of Developmental Services statistics, now replicated in many states, that reported a 273 percent increase in autistic kids in the school districts. Autism was an epidemic, Burton insisted to the CDC. What are you doing about it?
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