Thursday, February 22, 2007


They're profiling a rather amazing lady this week on Anderson Cooper 360. 26-year old Amanda is intelligent and extremely well-written, as she demonstrated because her autism doesn't allow her to speak. She communicates entirely by computer and voice software. What struck me especially was an analogy she made during the interview. Dr. Sanjay Gupta, a senior medical correspondent for CNN, noted that when she was in public, rather than greet someone she recognized in the "normal" way, she instead rocked more and exhibited more autistic tendencies. Her condition makes her long-winded, but she explained that to greet someone in a "normal fashion" would cause her to experience a significant overload. She doesn't even walk much, because the act of keeping her balance and putting one foot in front of the other is too overstimulating. We regular folks take such automatic behavior for granted, but for her, it's like doing calculus in your head just to say "hi."

This naturally got me thinking about Hunter, my autistic nephew. Only 6 years old, he spends his days in a special needs kindergarten, doped to the gills so he won't do harm to himself or others. I don't see him nearly often enough, but I do see him more, now that Cyril lives at home with my folks. Watching Amanda was a good education on autism; I learned several things. She calls herself bilingual, and I really understood what she meant. These first years are incredibly important for Hunter. He needs to learn English, normal English, and even more importantly, the people around him need to learn Hunter's English. Then, and only then, will he be able to communicate with us. At present, he's pretty quiet, and he's quite ritualistic; when he plays, there's a specific plan in mind and good luck diverting him from it. But so much of that quietude is the drugs, and it pains me that that could be squelching his intelligence and creativity, keeping them hidden inside his head. I understand the need for his meds; his mother is tiny and hasn't been able to handle him physically for a while now. But I also ache when I think of the potential neglect he's facing when his little brother or sister arrives on the scene. But his mother's an irrational, unstable individual, and his father's role is limited by work and divorce. So I stay in the shadows and pray for better things for him.

Amanda wore sunglasses to combat the overstimulation. It made me wonder if the same, or some very thin earmuffs or thin gloves, would help more autistics. Or even a set of those extra fingerprints, like they had on Gone in 60 Seconds. Also got me thinking about my past and the heredity factor. I wonder about what part of the brain controls those levels of behavior, autistic vs. normal. Because I was watching Amanda last night and recognizing some old behavior in myself. When I was at my very worst, in Tampa and Fort Myers, my depressive condition caused panic attacks, agoraphobia, rocking, head banging, and short bouts of catatonia. Thankfully my medication allows me to lead a "normal life," and from the way I've always lived before and after, it's certainly apparent that my brain has the proper tools to remain on the "normal" side of society. But what in the brain makes that distinction? As far back as 5th grade, I've been fascinated with autism, even wrote a paper on it for school. When I noticed the symptoms in Hunter at age 18 months, and he was diagnosed a year or so later, all fascination went out the window naturally. Amanda's story got me thinking again. Maybe it somehow ties into how good I am at medical informational recall; maybe there's where I could do some good. Maybe...

That 1 in 150 statistic bugs me though, saying that 1 in 150 kids has some form of autism, for several reasons: a) it's a statistic, so the margin for error is far from negligible, b) it doesn't mean that 1 in 150 kids has autism now; it means 1 in 150 kids is diagnosed today with some form of autism. The actual number of people afflicted with autism spectrum disorders may not have increased much at all in the past 30 years; the difference is that back in the day, they didn't call it autism or asperger's syndrome or some other spectrum disorder. Now that these conditions have names, they can be counted, but as a result, the numbers are dangerously misleading, causing panic and words like "epidemic."

Amanda's blog is extraordinary, totally blows away the concept that autistics are somehow less intelligent. Be patient with it loading, as her popularity is causing serious traffic.

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