Tuesday, November 25, 2008

Books, Manuals, Dianese

There seems to be a disproportionate number of books for Asperger's Syndrome (AS) than "plain" autism. Is it because those kids and adults have more potential to live so-called normal lives, and as such gain more attention for their ability to live alongside the rest of us?

I received the Fall 2008 Jessica Kingsley Publishers catalog today. In it are 99 titles, 30 of those are aimed primarily at people with (or parents of people with) AS. This is above the titles that are about Autism Spectrum Disorder (ASD) which include AS. There are a few titles aimed at the opposite (low-functioning) end of the spectrum, about 9. There are books on teaching and coping and general treatment and diet interventions, but really nothing for middle-of-the-road kids, like my Diana. Marc thinks this is because that group is too diverse to focus on. Because it's a spectrum disorder, and each child is so different in the way they present, he's probably right. It's still frustrating, though.

Mostly what I've done is what I thought was right. In some cases, I've gone directly against conventional wisdom; most notably, scheduling. Diana does not have a rigid schedule. She does have things she does every week (Thursday is mall night with Daddy while I go to my dance class), but we do not have every hour of every day carefully planned. I did this on purpose, because the world doesn't work that way, and if she's to function in the world, she had to learn to cope with change. And you know what, she has. Maybe that wouldn't have worked with another child, more significantly impaired, but it worked with her. So following my instincts have gotten us to age 11 without too much trauma. I've made some mistakes, like not preparing her well for the trip Marc and I took to Hawaii (she stayed with Grandma and Grandpa, and still has anxiety issues over that), but for the most part, I've done OK. She's a happy kid, sometimes incredibly mercurial, and that's the thing I have the most trouble with, and the thing I want some help with.

I eagerly poured over the catalog hoping for a title to jump out at me and say "this is it, this is the manual that will help you with Diana!" - I really should know better than that by now... It would appear that I am writing my own manual for her, but it's written more like a non-native speaker. I speak Dianese, but I wouldn't say I'm fluent. When she was diagnosed, I told the psychologist, "it's like she's trying to get me to play a game with her, but I don't know the rules." You know what? Eight years later, I still don't.

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