Improving research about us, with us: a draft framework for inclusive autism research: Disability & Society: Vol 0, No 0

dark silhouettes of people in the distance with bright flashes of light crossing them
Who’s on the outside? Us or them? Or both? We’re so divided from autism researchers, through systemic barriers that are, sorry (not sorry), just ridiculous.

It always gives me the creeps, when I read research / studies about autism written by clearly neurotypical people who haven’t an ever-loving clue what it really means to be autistic. I firmly believe that this tendency stems from the social sciences, which dictate you must have some distance from the subject(s) of your studies to be objective and unbiased. Anthropology demands it. Sociology, too. Psychology and psychiatry seem likewise inclined.

The only problem is, studying autism and autistic people isn’t like studying the Yanomamo in the Amazon. Or Lakota of the Rosebud. Come to think of it, those folks never should have been shunted to the margins of the studies about them, either. I would hazard to say that, actually, the whole idea of excluding “subject populations” from active participation in studies about them is fraught with … er… stupidity and hubris. People on the outside often have NO idea what’s actually happening in the scenes they observe. And yes, while personal involvement can cloud your vision, so does ignorance and presumptuousness.

Not to mention treating living, breathing, feeling human beings like subjects.

On the bright side, it always heartens me a bit when I see research being done that includes autistic folks and/or advocates more inclusion of an autistic point of view. I mean, seriously, who could ask for a better “target population” to help inform studies about us? Our very natures can be highly objective, scientific, insightful, sensitive far beyond the capabilities of neurotypical researchers. And we understand what things mean to us. What they mean in general. We’re ideal test subjects, so why wouldn’t researchers line up to recruit us?

Huh?

Oh, I can think of a reason — our issues. Like anger. Like rage. Like pain. Like all the things we experience on a daily basis that are incredibly difficult for someone outside our sphere to accept, or even grasp. Those of us on the inside have these intense experiences that people on the outside often dramatize and make into a horror.

Case in point: I sent my Dad a fantastic longform piece “Every Body Goes Haywire” about what it’s like to live with chronic migraine. He doesn’t have migraine issues. He’s got pain from his own illness, but he has never dealt with it over the long term. Not like me. He didn’t even realize I was having migraines, all those years.

I thought the article was great! Such a fantastic read. I thought he’d appreciate it. But then he calls me on the phone and tells me how grueling a read it was, how depressing, how painful to imagine. He’s highly empathetic and very sensitive, himself, so maybe that’s to be expected. I just realized, this morning, what a difference it makes to read about something as a participant, rather than an onlooker… to identify with something, rather than hear about it from a distance.

That’s one of the hurdles that plagues autism research, I think. Neurotypical researchers may get a bit secondary trauma while talking / working with us. They come up with their own interpretations of what the autistic experience “must be like”… and it’s just not good. So, we get crowded out, as a result, ’cause really, who wants to be burdened unnecessarily by experiences that just bring you down and cloud your logic?

Who indeed?

My hope is that autism research will have us all come together, bridge the gaps, and actually make some progress in terms of better understanding the autistic experience and teasing out the joys from the horrors. It’s not all awful. Even if others think it is. It’s a challenge, that’s for sure. But that just keeps us sharp and invested.

Now, here’s what I originally wanted to share:

Abstract

It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.

Source: Improving research about us, with us: a draft framework for inclusive autism research: Disability & Society: Vol 0, No 0

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