Whose Planet Is It Anyway?

Saturday, December 22, 2007

Rock the IACC

Yo, I'll tell you what I want,
What I really really want...

— Spice Girls

Last year, when the Interagency Autism Coordinating Committee (IACC) solicited public comments on federally funded autism research, many of us signed a petition created by Kevin Leitch that asked for respectful language to be used in all discussion of autism. That was a good start toward making the American government aware of our concerns, and it led to some improvement of the language and to more representation of the neurodiversity point of view. But as we've seen in the past two weeks with the quick victory against the Ransom Notes advertising campaign, our community has grown much stronger—when we stand together, we have the power not only to accomplish small successes, but to bring about far-reaching change. This year, we should be sending thousands of e-mails to the IACC demanding not only a respectful tone, but actual, substantive reforms in autism research.

The current request for comments, reposted in the Neurodiversity Weblog, was issued by the National Institute of Mental Health (NIMH) and has a response deadline of January 4, 2008. Comments, which have a two-page limit, should be sent to
iacc@mail.nih.gov with this identifying code in the subject line: NOT-MH-08-103.

As one might expect of anything from NIMH, the focus is on psychological and mental issues, and this limitation needs to be kept in mind when composing comments. We can't, for instance, get more funding for special education services through this process because that is outside NIMH's jurisdiction. However, we can tell NIMH to put more research money into the areas of cognitive and educational psychology, in order to determine what kinds of school environments and programs are most useful for autistic children.

Here are some examples of studies I'd like to see funded:

Self-image in autistic children: I have in mind something similar to the psychological studies cited at the U.S. Supreme Court in the 1954 case of Brown v. Board of Education to demonstrate the harmful effects of racial segregation. If autistic children are shown videos of autistic and non-autistic people, which will they prefer? If they are asked which of these people are good or bad—and why—what will they say? How will they react when they are asked which of these people are like them?

Stigma and autism-awareness advertising: Get a large random sample of non-autistic people who have no autistic family members. Survey them regarding their exposure to autism-awareness media campaigns, also ask some questions as to how they'd feel about having an autistic neighbor or co-worker or employee, and see what sort of correlations show up.

Role models: Find three schools that have similar autism programs and are comparable in other ways. In one of the schools, have a positive Autism Month event (along the lines of Black History Month) that focuses on the accomplishments of notable autistic scientists, musicians, etc., and that brings in successful autistics from the community to speak to the students. In the second school, put up Autism Awareness Month posters and teach basic information about diagnostic criteria and prevalence. The third school is the control group and gets no special events. How will the autistic kids view themselves afterward? Will there be any significant differences in how the autistic and non-autistic children interact in each of the schools? What about the mental health of the autistic kids—any differences in anxiety, depression, and other such issues among these three groups?

These are just a few ideas off the top of my head; I'm sure y'all can think of many more. What's important is to send as many e-mails as possible from the neurodiversity point of view. Keep in mind that the budget available for autism research is a fixed amount, so every study that is funded in response to our comments reduces the amount of money that might otherwise be spent on eugenics research or on unethical and potentially child-endangering studies of chelation and other quackery. Our kids are not lab rats, and we need to make it crystal clear that we won't stand for any more shoddy science, biased assumptions, and damaging rhetoric.

Let's get our comments written, everyone!

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  • Good points. Punishment for neuordiversity makes no sense, any more than punishing a child for having darker skin.

    What we put on the backs of our children!!!!

    Okay now, whose kid is going to be the Ruby Bridges (http://www.rubybridges.com/story.htm) for the neurodiverse????

    By Blogger Usethebrains Godgiveyou, at 11:39 AM  

  • Well if they would fund me I would be happy, I would swap my landie for a cadillac.

    It's hard being out in the cold.

    By Blogger Larry Arnold PhD FRSA, at 2:09 PM  

  • Rose: What we put on the backs of our children, indeed.

    Larry: I wish you good luck with your quest for funding, but it probably won't be from NIMH, unless you're planning to move to the United States. I should mention, however, that a person does not have to be a US citizen to send a comment to the IACC.

    By Blogger abfh, at 7:16 PM  

  • "I should mention, however, that a person does not have to be a US citizen to send a comment to the IACC."

    Oh, I was just about to ask. That's wonderful news. Thank you.

    By Blogger elmindreda, at 11:12 PM  

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