Saturday, March 31, 2007

School Trauma book

I'm very busy working on a book about school trauma, so haven't been posting much. I'm reading all sorts of stuff, and realizing that much of the damaging stuff is considered normal and acceptable practice in schools.
If anyone wants to share their experience of school with me, that would be a great help.


Saturday, March 10, 2007

It Really is one Syndrome

Autistics are very diverse. Many people talk about the range from 'low functioning' to 'high functioning' (actually it's far from linear, and can change over time in an individual). There are autistics who talk in sentences at 18 months, autistics who never learn to talk, autistics who learn to talk late and end up with very good speech, autistics who loose speech skills, and many other variations, and that's just looking at speech (and just superficially).
With all this variation, some people think that certain 'types' of autistics have nothing in common, and barely (or not at all) qualify as having the same condition. And indeed, they can seem very different. When I was volunteering with autistic kids, I found a lot of variation - each kid was autistic in a unique way.
But when I started volunteering with all kinds of developmentally disabled kids, I saw even more diversity. Autistics are all unique, but all have various things in common with each other that they don't have in common with other disabled people.
And when I read stuff by other autistics, even people very different from me, they'll often describe things that are also true for me. Sure, we're all unique, but we have more in common with each other than with most people.

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Thursday, March 01, 2007

Gifted, Blind and Hairy

I just found a reference I've been looking for, and to make sure I don't loose it I'm posting it here.
The condition I was looking for is called Amaurosis Congenita, Cone-Rod Type, with Congenital Hypertrichosis. According to that link, it's characterized by severe retinal dystrophy from birth, profound photophobia, trichomegaly, bushy eyebrows, synophrys and increased facial and body hair. In other words, they're almost totally blind, don't like bright light, and are hairy.
Although that link says they "were not mentally retarded", the journal article describing those two actually gave some information about what they were like mentally. They both had above average school performance. The elder one, an 18 year old, was musically gifted, her younger cousin was shy and introverted. That's only a bare minimum of information but it certainly suggests that they were gifted.
The link above appears to have reached the conclusion that their giftedness was unrelated to their syndrome, but it's really too early to tell. If they were mentally retarded, the assumption would be that it was related to their blindness and increased hair. Giftedness has the same frequency as mental retardation. It's probably just as genetic. And more and more, it's being shown that some conditions cause both disabilities and talents, such as Williams Syndrome. But still, they dismiss the possibility of a relationship when both of the only described cases of this condition were gifted.
We really need more case reports, that mention whether the affected individuals are gifted, to know for certain if it's associated. Knowing how intelligent their siblings are would help, because if these two had equally smart siblings then chances are it was inherited separately. I'm worried that if someone does find some people who are similarly affected, they will say only that they had no developmental delay, because they don't know that giftedness might be associated with this condition.

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