...brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of autistic adults. Our partnership will adhere to the principles of Community Based Participatory Research (CBPR), whereby researchers and community members serve as equal partners throughout the research process.
Now, of course no research project, online or otherwise, is going to be able to take into account the views of literally everyone in a given demographic. Not all adults on the autistic spectrum even have access to the Internet, and of those that do, not all have either the ability or inclination to use it.
This, however, is true of many populations and the way I see it, so long as any conclusions or hypotheses derived from research keep this in mind, there is still value in gathering the data.
And by making sure to adhere to relevant standards of scientific scrutiny and ethics, which of course includes openness to criticism, peer review, etc., it is my hope that AASPIRE and similar projects may at least have some positive impact on the signal to noise ration in autism research.
The notion that only nonautistic people are qualified to suggest research avenues or comment on study design elements, etc., pertaining to autism research is one in serious need of challenge and actually getting the inputs of at least some persons on the spectrum (and it should go without saying that these persons cannot and do not "speak for" all autistic people) strikes me as a promising avenue for addressing this challenge.
The announcement text appears below in its unmodified form from the AASPIRE administrators (per U.S. IRB requirements)
--- BEGIN ANNOUNCEMENT TEXT ---
Participate in the AASPIRE Gateway Project
You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.
The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are
(1) to collect the Gateway Survey data;
(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and
(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.
You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.
The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.
Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.
If you're interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:
1) Go to the study’s website at www.aaspire.org/gateway.
2) Send an email to info@aaspireproject.org.
3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.
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
--- END ANNOUNCEMENT TEXT ---
And one more comment from me: I would like to make it clear that, to the best of my knowledge, AASPIRE is a research-oriented entity and that participating in the Gateway Project does not in any way, shape, or form constitute an endorsement of any political positions or specific organizations.
I.e., you can be involved in AASPIRE (as I am) and/or participate in research as a member of the world community by taking the Gateway Survey without this implying or signifying that you are a supporter of Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, or the Autistic Self-Advocacy Network, or the expressed political/policy opinions of these entities.
(I made specific effort to find out and confirm this recently because "affiliational" stuff confuses the living daylights out of me and I am leery of associating in any official capacity with anything lately due to past experiences. Moreover, I think it is very important for autistic people to be able to engage in self-advocacy without this being "branded" as adherence to any organization, as it would most definitely in my estimation undermine autistic civil rights if all of us always had to be compromising our personal principles in areas unacceptable to us or "signing on" with groups whose policies we might not even fully understand, let alone approve of, in order for our perspectives to be taken seriously.)
5 comments:
do you ever really run the risk of getting pushed into some political bandwagon, or an otherwise ideological constituency, by putting your name on a mailing list and completing a couple of surveys? it's usually money that seals the deal.
morsincerta: Yes, I have experienced pretty much everything you describe. I am not going to get into that here, though, as that is not the topic of this post. Furthermore, more generally I think it is important to maintain people's ability to be "free agents" in whatever advocacy you are involved in.
This is especially important when there are organizations around with really basic or positive-sounding names because...well, say there is a hypothetical organization called something like "Feed the Kittens", and they are getting a lot of media attention and such.
If that is going on, people who might agree that the kittens need to be fed but do not agree with the way "Feed the Kittens" is going about doing things are going to be faced with possibly being associated with "Feed the Kittens" and having it presumed that whenever they talk about feeding kittens, they are speaking from a standpoint of agreement with "Feed the Kittens". When that may not be true.
And of course it doesn't mean if it isn't true that the individual has anything personally against anyone involved with "Feed the Kittens" -- it just means that the person trying to speak more independently is going to have a bit of an extra barrier to face, because s/he doesn't just have to articulate his/her position now, but also work to distinguish themselves from "Feed the Kittens".
And if you think all that is just useless and "nothing to worry about", that's fine for you to have your opinion but I am not going to stop writing about this stuff, because I do actually think it's pretty important. If you aren't totally confused by "affiliational politics" like I am then maybe you are not the intended audience of this post.
sorry to hear that. maybe you can tell me all about it some other time. but i still can't help but resist persuasion.
look. i understand the mechanism. but unless you're a public figure (or incredibly unlucky), the "affiliational politics" (however confusing) are still innocuous.
take, exempli gratia, the case of "feedthekittens.org". i mean, the extent to which i can be unjustly associated with their rhetoric only because there seems to be some minute or grossly general affinity between their ideologies and mine, is limited by the fact that there is nothing binding me legally to the misconceptions, or slanderous allegations, or whatever else is causing people to associate me with them.
and i agree with the "free agents" ethic. my belief is, though, that it is a condition sternly difficult to revoke -in most cases. the IRS makes a glaring exception with their take on "national membership".
moreover, i'm outraged that you imply that somehow i suggested you should stop writing about the subject. imagine the presumption! i've gone as far as to promote your blog among my peers, and i'll go even further by congratulating you on it right now! *wink*
hope your having a lovely weekend.
namaste
My suggestion is that if you are really "outraged" and thought I was accusing you of telling me not to write, then we are most likely experiencing communication style incompatibilities. No big deal, it happens all the time. Again, if you didn't or can't relate to what I wrote, you are of course welcome to say so but that doesn't mean other people won't think differently.
handsome point of settlement.
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