“The premier research conference for autism”
That’s how one of the students I used to work with described IMFAR, the “International Meeting For Autism Research.” I hadn’t even heard of it until last year when that student expressed a sort of resignation that our work probably wouldn’t fly at IMFAR. Following up with her and a few other colleagues, I got the impression that IMFAR was an intellectually intense conference that was hard to get into. Moreover, the people who were telling me about IMFAR were largely folks who approached autism from a psychiatric or medical perspective. Frankly, I didn’t get the best impression about IMFAR. I was also rather irritated by the fact that I had to pay them $50 just to submit a proposoal considering I’d never had to do so for any of the 54 previous presentations I’d made at other conferences.
Nonetheless, with several doses of naiveté and a shot of courage, I got Amelia, Jeff, and Abby to join me in submitting four paper abstracts as a panel proposal. Our joint panel got rejected. Each of our individual papers got rejected, too (most do).
Instead, IMFAR accepted all four College Autism Network proposals as posters, meaning the people running the conference had at least some appreciation for the type of work we were doing. That was good enough for me! And it left me hopeful that others doing similar work would likewise be represented at the conference.
But I was also expecting to hear an awful lot about biology and genetics, early diagnosis and early intervention, and maybe even a session or two about how to cure autism…
Mutant Mice and the Color Blue
Months later, there I am in Baltimore, walking up to the registration desk, getting my very first impression of the actual conference. And what do I see? Autism Speaks and the Simons Foundation for Autism Research (SFARI) are platinum sponsors of the conference. Most everyone has heard of Autism Speaks. Somewhat less well known among the general public is SFARI, an organization that provided roughly $18 million last year for research focused on “genetic risk variants,” “rodent models,” and the “objective measurement of treatment responses in studies of therapeutic interventions.”
Autism Speaks and SFRI have their names and logos all over the place: outside of meeting rooms, in the program book, and even on the bag where they shove all the participants’ “swag” (a term I use loosely; this ain’t the Oscars). And whatever you feel about Autism Speaks (note: my feelings about the organization are underdeveloped, mixed, and fluid), it’s telling when such a controversial organization is the most prominent sponsor at the conference.
On top of that, Friday morning’s sessions started with an hour-long keynote discussing the “reversibility of synaptic, circuit and behavioral abnormalities in adult mutant mice.” Now, to be clear, I did not attend this particular session, and I suspect that Dr. Guoping Feng has done lots of great work. Likewise, studies supported by Autism Speaks and funded by SFARI have undoubtedly contributed to our current understanding of autism. I am merely suggesting that their prominence at the IMFAR conference frames the event in a certain way, colors people’s perceptions of it (the color blue, perhaps).
Nonetheless, the rest of the day included a few sessions relevant to college students, and several that dealt with adults, lifelong development, or social issues surrounding autism. And I was excited when Jeff pointed me towards a session that he thought would be relevant to our work and presented by someone who was really engaging.
Hybrid Creatures and Double-Edged Swords
So imagine my surprise when I read the abstract for that presentation and see “hybrid creatures: mutant antiheroes who are half human and half demon.” Really? This is how we’re depicting people with autism? Mutant hybrids that are half demon and half human? Is that really any better than the approach of using mutant mice?
Indeed, it was better. Much, much better. For, although the language may be a bit offputting at first, it is not language created by an external researcher and presumptively superimposed upon individuals with autism. Rather, it was language derived from two years of ethnographic study including 130 interviews with people diagnosed with autism, their families, and professionals they work with. The presentation itself was most engaging I saw all day. Imagine this: within a conference full of jargon-laced academic papers, and surrounded by presentations with charts too small to read from even the front rows, Elizabeth Fein’s opening slide was a big sword. She proceded to tell us about the story of “Nightblade”. This excerpt from her paper abstract explains why:
Youth on the spectrum who participated in this study tended to see autism as (as one participant put it) “a double-edged sword”. It gives them cherished strengths, unique perceptual experiences, and terrifying vulnerabilities. It isolates them socially while also bringing them into fellowship and a sense of community with affected others. It helps make them who they are, but also profoundly disrupts their sense of self. In this presentation, I will describe how these youth often look outside of medicalized models of autism-as-disease and autism-as-identity to make sense of this experience, drawing instead on a folk mythology of embodied difference from roleplaying games, Japanese animation films, and other fantastical popular media. In their games, their art, and other informal creative practices, they playfully depict themselves as hybrid creatures: mutant antiheroes who are half human and half demon, pierced by shards of evil swords, or possessed by powerful ancestors. In doing so, they reconcile the valued and troubling elements of their experience.
[See also: Fein, E. (2015). Making meaningful worlds: Role-playing subcultures and the autism apectrum. Culture, Medicine and Psychiatry, 39(2): 299-321. http://dx.doi.org/10.1007/s11013-015-9443-x]
The whole study is an interesting read, and the presentation itself was quite enjoyable. I look forward to following her work going forward.
Jeff and I were also able to join Elizabeth, researcher Kristen Gillespie, and PhD student and self-advocate Steven Kapp for dinner later that night. It was a fascinating group, enjoyable dinner, and a thought-provoking conversation. I’ll try to reflect more on that and post again some other time.
For now, suffice it to say that my experience at IMFAR was both precisely what I expected and nothing at all like I anticipated. Paradoxical perhaps, and complicated to be sure, but I came back from the conference reenergized, newly connected, and filled with hopeful aspirations.