Tuesday, September 04, 2007

Telethons and Self-care problems

Two unrelated comments today:
Firstly, the Protest Pity anti-telethon blog thing is up. I didn't know about it until today, but apparently it's an annual thing similar to blogging against disablism day.
Secondly, I'm researching self-care problems in high functioning autistics. I'm thinking of maybe getting together evidence regarding self-care problems in people diagnosed as Asperger Syndrome in order to argue that the 'lack of significant delay in self-care' criteria of AS is misleading. So far, I've found the following articles: one comparing AS and Conduct Disorder in teenage boys, finding that, according to their parents, 50% of the AS boys and 95% of the CD boys were independent in basic self-care (washing, toothbrushing), 5% of AS and 40% of CD boys had no problems with decisions about self-care (eg deciding when to eat), 15% of AS boys and 80% of CD boys had normal telephone skills, 5% of AS and 35% of CD boys could plan their own travel, 0% of AS boys and 25% of CD boys were independent in buying major items, 5% of AS boys and 70% of CD boys had no trouble planning their own routine and 0% of AS boys and 60% of CD boys were independent in leisure activities outside of home and one studying AS or HFA adults that found that out of 16 individuals, 1(AS) had a regular job, 1(AS) was a university student, 3(1 AS, 2 HFA) had a sheltered job, 5 (2 AS 3 HFA) attended a day center and 6 (5 AS, 1 HFA) had no occupation, the one with a regular job was the only one not living off of public assistance, which in 13 of them was some form of disability pension, 9 lived in their own apartment, 1 (the student) with their parents, 5 in a group home and 1 in the hospital. Not much available, but the few studies done show significant difficulties for older 'high functioning' autistics. Note that I don't really think there is a significant difference between the different diagnostic groups or functioning levels, but if they're following the DSM, the AS people should have normal or near normal self-care skills. Instead, they have difficulties with are definately significant, in the sense of needing assistance or accomodation.
Anyway, I just thought of a way to link these two subjects together. One big problem with telethons is that they're raising money for a cure/prevention while providing nothing towards helping actual disabled people live well, with their needs met and their 'voices' (even if not actual speech) heard.

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Blogger elmindreda said...

In my experience, the "no significant delay in self help skills, adaptive behaviour, ..." criteria is almost always ignored. They set diagnoses based on a few details of superficial speech skills and a subjective assessment of intelligence. One of the major problems with this is when the people approving services start believing that people diagnosed AS really don't have any such problems (and I've yet to meet a single person with such a diagnosis who doesn't have them to some degree).

6:49 AM  

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