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Thursday, March 29, 2012

1 in 88???

The big news today of course is that the CDC says autism is being diagnosed even more often than before. (here's the article) I have two reactions, both based of course as anything I say here on my own personal thoughts and feelings.

First, I don't think the rate of autism is truly rising as fast as they say. I think the rate of autism being DIAGNOSED certainly is, but there's a difference. My evidence here is my own children. As I've talked about before here, my older son was originally diagnosed as autistic, later, at age 4, changed to Aspergers. As the years went by, the diagnosis seemed less apt to me. At around age 8, he was in a couple studies, and testing during both showed he didn't at that time meet the criteria for Aspergers. Of course, autism spectrum disorders are supposed to be for life, except in rare cases. Those cases are the kinds books and movies are made about, where incredibly dedicated parents (or Jenny McCarthy) do everything in their power to "cure" their child. That wasn't me. I'm dedicated, but not that focused. William got good quality inclusive special education help and therapy at school, no ABA, no diets, no miracle cures. He just, in my eyes, didn't actually have Aspergers. He was a preemie, he had a strong and unusual personality, but he wasn't on the autistic spectrum. Today, William is 17, the top student in his class, a pretty decent guitar player and a very, very cool person. He's quirky, but we're all quirky. He has not had any special services at school since 5th grade. None. But the state still considers, if they have statistics some place, that he is autistic. We still get mailings from the Department of Retardation for him, which I hide and which I have tried and tried to call and have stopped. He's looking at some Ivy League schools---a stretch, but not an incredibly big one. I don't think he needs those services. But yes, he'd be counted as one of the 1 in 88.

And then there's Janey. I don't need to tell her whole story. But she's one of the one in 88, and rightfully so. Knowing the two of them fairly well, as I can say I do---it's a huge world of difference. About as huge as I can imagine. Aspergers, however, even for people that really do have Aspergers, is grouped right along with autism. Kids like the son of a close friend, who is probably the single brightest person I've ever known, are grouped with Janey. This paints a very confusing picture for the general public. Is autism someone like Janey, or is it something else entirely? If you can only get services to help your high functioning kids, kids that might very much indeed need help, by calling them autistic, would you? I guess I did, once. I didn't call him that, but I didn't know any better, and I accepted him being called that, something that now that he's old enough to understand, upsets him a great deal when he thinks of it, although I wish it didn't.

So that's my first thought. My other thought---if this is true, if somehow the rate of autism keeps going up and up and up, what are we going to do about it? It's a horrible emergency, if it's true. If one in 88 kids is going to need help in life like Janey is going to keep, then there's going to be a HUGE cost. A monetary cost, but also a huge cost to families. I know how having a child with autism affects a family. I love Janey with all my heart, more than I can possibly say. But she is tough. Very, very tough. And I have a supportive husband, great older kids, a wonderful school system with fantastic teachers and therapists---I have all that. If I didn't, I don't know how I'd do it at all. And if there are really that many kids out there with autism---well, the nation is in for a shock.

I worry about the short attention span of causes. If autism is rare and something fascinating and interesting, celebrities and all will jump on the bandwagon and help. But if autism is common and wearing and no longer a novelty, I can picture a backlash. This is the case whether these kids have Janey-type autism or Asperger type autism. I can see public skepticism, public boredom. It's how the country works. For a while, everyone thought about Haiti all the time, or Japan after the earthquake, or New Orleans, or so on. Then, gradually, they fall out of the news. and although there are still dedicated people working for those causes, people's minds can only seem to hold so much caring at a time. I worry about that. Because all these autistic kids aren't going any place.

And so I'll do what seem to always do---think extremely locally. So locally that the local place is my own house, my own family. I will be there for my own little 1 in 88.

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