Wanted: Autistics to participate in research

So what comes to one's mind when one reads a sentence like, "Wanted: Autistics to participate in research." Does it make one think of brainy guys and gals in white lab coats looking earnest, with trustworthy faces, to the moms and dads of autistic children--autistic children that the scientists would just love to pop into an MRI scanner, or maybe take a blood sample or three from?

Since these days, about the only people one hears about as having descended in the "hell that is autism" are children. It's not too likely one would get a mental picture of researchers wishing for autistic adults to experiment upon. Perhaps if one is very cynical, one would imagine the scientists wishing that some prime autistic flesh would just up and die (deaths occuring in or near a research hospital and by a cause that creates as little damage to the brain tissue as possible are preferable, no doubt), so that the scientists could have a slice of autistic prefrontal cortex, or maybe a chunk of amygdala or a white fiber tract to check for abnormalities of one sort or another. That way you get autistic participation with no need to concern oneself with how the autistic actually felt about anything, whtether or not he's happy or if he's scared or being harmed by one's research, because one's research participant at that point is pretty much going to cooperate uncomplainingly with whatever you do to him.

Pleading for autistics to participate in research as subjects is what we find in this news story from Health Day news service: First U.S. Online Autism Registry Begins :The goal is better research aimed at a cure, experts say. The article discusses a project that is being run by the Kennedy Krieger Institute. The online database is called Interactive Autism Network (IAN). The author of the article repeats a complaint from someone within Kennedy Krieger, apparently.

Many autism studies cannot be completed because researchers aren't able to enroll enough qualified participants.

Autism Diva has it on good authority that all areas of human research are suffering to some extent from a dearth of research subjects, sometimes the researchers just have to wait and wait to get enough participants. It is not a problem that exclusively plagues autism research, not by a long shot, but one wouldn't know that from reading this little call for future autism research participants.


Autism Diva thinks that maybe out of 500 randomly selected people in the United States and Canada, one or two might have a different thought as to what might be meant by: "Wanted: Autistics to participate in research." Maybe those few people would think the sentence meant that autistic adults were wanted to participate in research as researchers or research assistants, or as an expert or technician in some other capacity. Even autistics who some "experts" would write off as being too impaired to contribute anything to autism research except from the guinea pig or tissue end of research, can actually give valuable insights into the design of experiments, perhaps from a mathematical/statistical, scientific or ethical standpoint.

Dr. Morton Ann Gernsbacher talks about this kind of research participation in her recent Presidential Column for the APS Observer, The True Meaning of Research Participation.

Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?

Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics.

...

“Perhaps even more importantly,” Smith relates, “I don’t have any trouble thinking outside the box. And so I have been more open to different ways of looking at a lot of the problems in economics.” I value highly autistics’ diverse perspective, focused interest, and heightened sense of social justice, along with their occasional jolts of gallows humor. For example, upon reading that the Lifetime Achievement address at the upcoming International Meeting for Autism Research would be titled, “Autism and the Absent Self,” Ms. Dawson posted to a discussion board, “so if I attend, I won’t really be there? I’ll be that empty chair in the back row.”

Autism Diva thinks that autism research needs autistic researchers and autistic input into research just as badly as it needs autistics as research subjects (either on the hoof or in the deep-freeze). As it is there are all these non-autistic researchers taking their superior, and sometimes supercilious stances, announcing their ill-informed hypotheses, and really making fools of themselves by stating things about autism that autistics could tell them were wrong right up-front and save everyone a lot of time, money and trouble. Which is not to say that there is no need for research, or that autism research conducted by non-autistics is a bad thing, or that all scientists need to do is ask autistics what autism is and that should settle it.

At any rate, autism research has been greatly benefited by Michelle Dawson, autistic and autism researcher, both, and there have been other autism spectrum people involved in autism research, though precious few it would seem, unless many of those somber and single-minded autism researchers out there are actually closeted or undiagnosed autistics.

Make sure you read all of Dr. Gernsbacher's article as it mentions a couple of autism hub bloggers, besides Michelle Dawson, namely Joseph of Autism Natural Variation and Amanda Baggs of Ballasexistenz.



Autism Diva
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