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Friday, April 22, 2016

Debating Research Priorities

Arguing that autistic people themselves are the main stakeholders, groups such as ASAN have called for increasing this representation.[on IACC] They also argue that too much autism research spending goes to the “disease frame” and that no enough goes into improvement of services and the quality of life. In 2010, for instance, only 16 percent went to services and only 2 percent went to “lifespan issues” (e.g., the needs of adults on the spectrum).

Some parents, however, argue that the case against cure overlooks differences among people with autism. It is one thing to say that autism is just a “difference” when it involves a high-functioning person with a college degree. It is another when the person is nonverbal or lacks bowel control. One mother told the Pittsburgh Post-Gazette: “I say to this one young man who always brings it up to me, “Look: if my son could be you, that would be a cure.” As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger’s.”
At Vox, Dylan Matthews writes:
One point that autistic people like myself have been hammering since the rise of the autism rights movement is that charities devoted to the condition focus on the wrong thing. There's a huge emphasis on preventing or even "curing" autism, even though we're nowhere near being able to do either, and many autistic people resent the idea that their psychological differences are in need of "curing."
And a new report finds that this problem isn't going away. In fact, it's getting worse.

The report found that autism funding in 2011 and 2012 was heavily tilted toward researching the underlying biology and risk factors contributing to autism, and away from ways to help actual autistic people.
A mere 7 percent went to researching services for autistic people, and 1 percent to researching the needs of autistic adults...