My First Impressions of IMFAR 2012

Filed Under (Research) by Estee on 18-05-2012

This is my first IMFAR 2012 in my hometown, Toronto.

Let me just say, I think that everyone who attends IMFAR should attend AUTCOM and AUTREAT and be exposed to autism conferences run by autistic people. Temple Grandin, in receipt of her Advocate Award yesterday stated “Researchers, you must do more work in sensory processing and visual thinking in order to improve our quality of life.” She noted that there are already hundreds of papers on Face Recognition.

I want to extend that thought. While we are trying to understand autism, we are not much advancing the understanding of how autistic people think and learn and how we can assist autistic people live and thrive in our society as autistic people. As I sit watching sliced brains all it up in orange, blue and yellow, I twitch. Autistic people are referred to as THE OTHER.

“Research provides the foundation for reports about and representations of ‘The Other.’ In the colonial context, research becomes an objective way of representing the dark-skinned Other to the white world. Colonizing nations relied on teh human disciplines, especially sociology and anthropology, to produce knowledge about strange and foreign worlds. This close involvement with the colonial project contributed, in significant ways, to qualitative research’s long and anguished history and to its becoming a dirty word.”

(From: The Landscape of Qualitative Research, Norman Denzin & Yvonne Lincoln).

There are quantitative and qualitative studies here, and I’m very interested in the how autistic people are being studied. The research uses the typical population for comparative analysis. Autistic people are being measured against the typical population therefore cannot be seen as they are. All I’m learning is what I’ve already been told over and over again: autistic people cannot measure up in the same way and manner as typical people, and that we view typicality and normalcy as our goal.

The studies here that I’ve seen use groups with High Functioning Autism, a term which is highly interpretive. Let’s assume, however, that this HFA group must be verbal and must be able to function fairly close to the typical population. This immediately rules out my son who is has limited verbal ability, has pronunciation differences, and some idiosyncratic language. Also, the study groups would exclude him becuase he has many neurological “tics” and “stereotypy,” and has very limited “typical social skills.” As such, it would eliminate the contributions of most of the autistic population who contribute through writing, music, art and more. What of autistic narration? How is that important and valuable instead of merely fascinating? What kinds of insights do autistic people have that some of the typical population may not? It is hard for me to find such presentations here at IMFAR.

Today I did attend sessions on Brain Imaging and fMRI Cognition, Motion Perception and Function and Reward Processing. The most valuable presentations, to me, were two:

Using Visual Strategies to Remember Verbal Information: An fMRI Study of Working Memory in Children with and Without Autism, E.J. Carter, D.L. Williams, J.F. Lehman and N.J. Minshew. and,

Increased Attentional Activation During Reading in ASCAn fMRI Study of Visual Language, J.R. Cooperrider, J.A. Neilsen, J.S. Anderson, A. Froehlich, M.B. Dubray, A. Cariello, A. Alexander, E.D. Bigler, N. Lange, and J.E. Lainhart.

While I’m uncertain of the reliability of fMRI studies, I am very interested in the results. In summary, autistic people have compensatory reading and decoding strategies. I asked the researchers if they’ve ever compared the autistic population to the dyslexic one (one that I tend to do). I am often tired of the comparison of autistic individuals to the typical population as the only measure.

Rather, because we know that the Dyslexic community faced many social challenges including marginalization, stigma, exclusion, and becuase it took the school systems a while to understand Dyslexia in order to teach dyslexics, how can we study and understand autistic visual perception and conceptual understanding and the way they utilize the visual in order to decode language and the verbal?

I’m off to the “Stakeholder’s Luncheon” now where Stephen Shore will be one of a few speakers. There are a few autistic individuals here, but nearly not enough.

How do we get these scientists at IMFAR to collaborate with autistic people more? How do we move from using autistic people as “subjects” to including autistic people as collaborators?

We have a lot of work to do. Apologies in advance for any typos as I sit in a crowded foyer.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.