Whose Planet Is It Anyway?

Tuesday, May 04, 2010

Autistic Involvement in Research

I'm reposting the following announcement from AASPIRE, a research initiative that seeks to involve autistic people as equals and to take into account the views of the autistic community when making decisions about projects. AASPIRE is conducting a new study about healthcare inequities. More details below.

Be Included in Autism Research

The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) believes in research WITH autistic adults, not just ABOUT autistic adults. The AASPIRE Gateway Project is an online gateway to research that fulfills AASPIRE's mission to

*encourage the inclusion of autistic adults in matters which directly affect them;

*include autistic adults as equal partners in research about autism;

*answer research questions that are considered relevant by the autistic community;

*use research findings to effect positive change for people on the autistic spectrum.

The AASPIRE Gateway Project needs your help, whether or not you are on the autistic spectrum.

If you are at least 18 years old and have access to the Internet, you can participate in a series of continuing online research studies that help AASPIRE achieve its mission. Upcoming studies address topics such as healthcare, Internet use, and problem-solving.

To participate in the AASPIRE Gateway Project:

1. Register online for an AASPIRE Gateway account starting at www.aaspire.org/gateway.

2. Take the online AASPIRE Gateway Survey. The survey takes about 20 minutes to complete.

3. You will be notified by email when new studies for which you are eligible become available.

Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon gift certificate.

If you would like to learn more about AASPIRE or the Gateway Project, you can:

Go to the Gateway home page at www.aaspire.org/gateway.

Send an email to Dora Raymaker at dora@aaspireproject.org.

Make a telephone call to Dr. Christina Nicolaidis at 1-503-494-9602.

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network



  • This is cool, important and (selfishly) could be a great help to parents like myself and our young kids.

    By Blogger Sullivan, at 7:33 PM  

  • I completed the test, and although I did not win the $25 Amazon gift certificate, they did give me one for $10.

    The test was divided into four parts (as I recall) that you take over the course of a few days. There was a verbal portion which tested vocabulary and analogies (sort of like the verbal part of the SAT), a part that had simple logic puzzles, a part that tested spatial reasoning, and a part that had simple arithmetic problems. The test was timed, the actual time limit varied from ten to twenty minutes.

    The only real criticism that I have with the test was that it was hard to backtrack and check completed work, Also, because it is timed, it might be difficult for someone who can't quickly move the mouse and click on the correct radio button. It would also be nice to get some feedback on how well the test taker did.

    By Anonymous rglovejoy, at 10:35 PM  

  • Thanks so much for the link. It felt good to be able to help out, in a small way, to the research currently taking place.

    By Anonymous Riayn, at 9:43 PM  

  • Thank you for what you're doing. I am sickened by groups that are trying to marginalize people on the autism spectrum out of existence.

    (By the way, did you happen to catch the recent episode of "Parenthood" that promoted Autism Speaks? They need a serious letter writing campaign.)

    By Blogger Christina Martin, at 5:41 PM  

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