IMFAR reminded me we still have work to do
October 30, 2012 by autismsciencefoundation
By Emily Willingham
Emily Willingham, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent and writer for The Thinking Person’s Guide to Autism Blog.
My overall experience at IMFAR was one of dizzying confusion. The conference is huge, with hundreds of posters to view, presentations of interest to me scheduled in conflict with one another, and many comments that left me wanting researchers to talk more to autistic people and less about them and their parents. Some presentations were quite enlightening–one regarding the CDC numbers was in particular rather alarming to me. Others felt like duds, in part because I felt that some presenters lacked empathy when talking about autistic people.
In other words, it was just like any other large scientific conference I’ve attended except that this time, it was personal, and I took some things personally. But I was there as the science editor for the Thinking Person’s Guide to Autism
(TPGA), so I channeled the science part of me and left the personal part to other members of our TPGA team
“Much of what I saw at IMFAR (self-selected, obviously) focused on assessing sex hormone differences or the presumed outcomes of such differences in autistic vs non-autistic populations. As the Father of the Extreme Male Brain Hypothesis that androgen levels relate to autism, Simon Baron-Cohen appeared as senior author on several posters in this subject area and also gave a talk on the same topic. While he is possibly best known in a negative light in autism circles for his tautological “autistic people do poorly on my empathy test ergo autistic people lack empathy” ideas, what I discuss below is not related to that, at all. It’s all about the steroid hormones during development in the womb, and I found it fascinating …”
My second post is a discussion of the relevance of mouse models of autism
and the science associated with them. What I ended up writing was both a primer and a commentary. The core of it was as follows:
“But I’m feeling a little jaded about animal models in autism because of the genetics and genomics data I saw presented at the conference. With a few exceptions, nothing seems to have emerged as a clear new contender for knocking out or otherwise manipulating in mice. Some of the usual suspects, like SHANK, were there. But the genome-wide association studies, intended to examine a genome for changes associated with a disorder or other condition, are not kicking out a lot of obvious single candidates for genes associated with autism. It’s almost looking like we’d have to make about a thousand animal models of autism to tease out various associations between a gene change and a specific autism-related endpoint.”
Because autism is as much a social human construct as it is a genetic or neurobiological construct, using mouse models and mice with “autistic-like” behaviors will get us only so far. I think that the best use of these models is to target candidate genes–which is what mouse models in general are for. But when every story about a mouse model of autism gets trumpeted as the be-all and end-all of autism gene studies, autism behavioral studies or autism cure studies, I start to feel a little jaded.
IMFAR 2012 was a worthwhile conference to attend, and I thank Autism Science Foundation for providing travel funding for my attendance. I spent the entire day every day in sessions and viewed, I believe, every single poster at the conference, talking with many investigators. It was a full immersion in autism research, with views that were interesting and not so interesting. The commentary I heard tells me that we have some work to do so in terms of how some researchers, at least, view the autistic people who are the focus of their work.