Thursday, October 30, 2008

Solutions to Self-Advocate/Adult Autistic Issues

A lot of autistic self-advocates criticize the mainstream autism community for focusing so much on children on the spectrum, rather than arranging for help for the serious issues that adult autistics face. It's a matter of focus - on children and cure, as opposed to adults and support.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.

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Friday, October 03, 2008

Special Accomodations and Proving Disability

It seems to me that a lot of disability accomodations go about it the wrong way. They have a certain thing everyone is supposed to do a certain way. When a disabled person says 'This is not fair. I can't do it that way' (or they can't do it as well as expected) then the system says 'OK, prove to us you are disabled, and we'll put you in a special category that get to do it a different way.'
There are several problems with this model:
a) it depends on labels and testing for disability. If you're undiagnosed or misdiagnosed, you won't get the help you need, even if you know that you need that kind of help. Even with an accurate diagnosis, you might not quite meet their criteria and still not get any help. (For example, some autistic assistive communication users have lost needed services because they now score over 70 on an IQ test.)
b) just because it's not as desperate for normal people as it is for you doesn't mean it wouldn't be helpful to them. Very often, disabled people can signal a problem that affects many people, simply because it affects them more. But if you single them out for help, the others with less acute needs for the same thing don't get it. For example, one study tested the use of voice recognition software to create 'subtitles' on an overhead as a professor spoke. This was intended for several deaf students as an adjuct to signed translation, but several hearing students also started looking at the display. Some people, like my mother, find it easier to understand text than speech, even though they aren't labeled with any disability.
c) it singles out the disabled person as a 'special case' rather than treating them as part of the group. Because there is no accomodation for differences except in extreme cases, other students may come to resent the disabled student for getting special bonuses (I remember how upset I got when the teachers let my CP classmate chew gum in class but wouldn't let me do it) or else pity them for needing those accomodations. Granted, there are many reasons for normal people to have negative views of disabled people, and changing this one thing won't eliminate that completely. But it will help.
What is the alternative? Make accomodations available for everyone, like they do with curb cuts, elevators and talking walk-lights ("the walk-light to cross college drive is now on. Bee-dup."). It won't really lower the quality of performance in a class if kids are allowed to type essays rather than writing them longhand (of course, they should all be getting practice writing longhand, too) or a professor passes out notes to their lecture to any student who wants them. In cases where there truly is a different need, such as teaching different subjects to a developmentally delayed kid than to their classmates, there are two options - either let people self-select which system to go with, or accomodate everyone regardless of labels (with this specific example, a system where children work on units and go to the next one as soon as they pass the earlier one would work well).
If we do it this way, undiagnosed disabled people will still get the help they need, disabled people won't be singled out as 'special needs', nondisabled people who'd benefit from certain accomodations (such as gifted kids) may be able to get them, and the time-consuming, wasteful and adversarial beaurocracy of determining who gets help will be eliminated. Even if we don't do this for every accomodation, we can do it for most of them and get similar benefits.

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