There was an extraordinary gathering of scholars at Stony Brook University earlier this week. Top researchers in the fields of sign linguistics, autism research, disability studies, anthropology, and education all met to discuss a possible "paradigm shift" in autism research, using the history of sign language research and its profound positive impact on the Deaf community as a model. I left the meeting feeling inspired, energized, even transformed. Here are a few brief take-aways now that I've had a couple of days to digest the experience:
1) The inclusion of people with autism in autism research is essential.
It's taken for granted that Deaf people have greater insight and intuition into their own language than non-native signers and hearing people, yet it hadn't occurred to me (DUH) that the same could be true of people with autism. During the meeting, the contributions of participants with autism led me to dramatic new insights that I would never have arrived at on my own.
2) A strengths-based model can be more elegant than a deficit model.
There's plenty to criticize about a deficit model of autism just based on the notion of stigma. However, even holding that aside for the moment, what most impressed me was the realization that, for my data at least, a strengths-based model of autism had greater explanatory power than a deficit model. This leads me to think that a reframing of autistic language from a strengths-based perspective could be more scientifically correct in the long run.
3) The language we choose to use to describe autism is important, and some changes are in order.
We use words like "deficit", "impairment", "failure", "absence", "delay", "risk", etc. all the time without hesitation. These words carry a lot of stigma, judgment, and could also just be plain old inaccurate. For example, one of the participants with autism (the extraordinary Ibby Grace) pointed out that the phrase "children at risk for autism" (in reference to younger siblings of autistic children) was not only stigmatizing but also imprecise. Why not just say "children with an older autistic sibling"? Why not, indeed?
I had so many a-ha moments at the conference that now seem obvious in retrospect. Sometimes, truly, it is most difficult to see what is right in front of our noses.
1) The inclusion of people with autism in autism research is essential.
It's taken for granted that Deaf people have greater insight and intuition into their own language than non-native signers and hearing people, yet it hadn't occurred to me (DUH) that the same could be true of people with autism. During the meeting, the contributions of participants with autism led me to dramatic new insights that I would never have arrived at on my own.
2) A strengths-based model can be more elegant than a deficit model.
There's plenty to criticize about a deficit model of autism just based on the notion of stigma. However, even holding that aside for the moment, what most impressed me was the realization that, for my data at least, a strengths-based model of autism had greater explanatory power than a deficit model. This leads me to think that a reframing of autistic language from a strengths-based perspective could be more scientifically correct in the long run.
3) The language we choose to use to describe autism is important, and some changes are in order.
We use words like "deficit", "impairment", "failure", "absence", "delay", "risk", etc. all the time without hesitation. These words carry a lot of stigma, judgment, and could also just be plain old inaccurate. For example, one of the participants with autism (the extraordinary Ibby Grace) pointed out that the phrase "children at risk for autism" (in reference to younger siblings of autistic children) was not only stigmatizing but also imprecise. Why not just say "children with an older autistic sibling"? Why not, indeed?
I had so many a-ha moments at the conference that now seem obvious in retrospect. Sometimes, truly, it is most difficult to see what is right in front of our noses.
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