Tuesday, January 5, 2010

How come .... ?

I realize that in the haphazard way in which I "research" things that I have no idea what the real universe of research out there looks like, but I'm going to gripe anyway. If I really wanted to know how to understand autism and people with autism, and more importantly, HELP people with autism, I think I would start by trying to distinguish between autistic people who are doing well and those who aren't. Then I think I'd start trying to figure out why. Has anyone done that? I read these studies where a certain percentage of the kids respond well to intervention and others haven't, well ... isn't the obvious question, what's the difference between these kids? But of course, such an investigation could never be a controlled and blinded study, it would be pure fact-gathering. Doesn't anybody do that anymore?

2 comments:

  1. maddening, isn't it? I think the "recovery" research is intended to fill that void. For a good explanation of the flaws of that research see link:

    http://autismcrisis.blogspot.com/2009/05/autism-recovery-story.html

    In advance of my appointment for a second opinion, I had to consent to have Brad be part of a PDD study. The doctor didn't end up using Brad because he wasn't PDD enough (or whatever). Anyway, as fate would have it, the thesis she was setting out to prove is pretty interesting: some children won't improve (or improve only minimally) no matter how much therapy is provided, whereas others are said to "recover". She was setting out to determine indications of what separates the responds-well group from the group with poor prospects.

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  2. Laura ... "some children won't improve (or improve only minimally) no matter how much therapy is provided"?? Oh, how horrible. I hope she's wrong or that she never gets published. I'm sorry to say that, but I mean, to rob parents of all hope, that's just horrible. It reminds me of a passage in an Andrew Weil book I'm reading right now where he likens the pessimism of Western doctors ("you have 6 months to live") to the hexing of shamans [er, sha-men?]. Apparently, there are studies that show that this kind of hexing can really have profound negative effects on people who believe in it. Anyway, I DO want to know what separates those groups, but I sure how she doesn't find that there are some kids who never get better. Thanks for the link!

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