IMFAR 2011: Proof of Evolution

Shannon Des Roches Rosa

As an autism parent, I have a deep interest in seeing autism research proceed toward understanding and results with as few roadblocks or distractions as possible. So, for me, one of the most notable elements of IMFAR 2011 was seeing the Autism Science Foundation and Autism Speaks working alongside each other toward common goals, in the Autism Science Foundation’s tradition of “Funding Outstanding Science.”

Anyone who has read my personal blog for more than a month or two knows I have been openly critical of Autism Speaks’ actions. I believe they have made some questionable decisions in how they approach and portray autism — but then so have I.

If I’m going to give myself permission to evolve, I can’t very well fault them for past choices when their present direction includes wide-ranging funding of promising science, and listening to the community by broadening their support for adults with autism. I believe that, in terms of AS’s science focus, they are fast evolving towards the organization I’d always hoped they could be, given their size and influence. Seeing the current results of their investment in promising science was truly heartening.

As for the cross-section of IMFAR 2011 research I encountered — it amazed me.  But we’re still in a baby steps period in terms of what the science means, e.g., Dr. Eric Courchesne’s work (which I’ll be summarizing for my next post) on neuron overgrowth in infants’ frontal cortexes and temporal lobes could lead to future remediation of autism symptoms — but mostly points to a need for the earliest possible identification of autism symptoms, and intensive early intervention.

IMFAR was also a week of thoughtful conversations with folks I deeply respect for their inclusiveness, ethics, and neurodiversity outlook. We generally agreed that most community members — autistics, Aspergians, or parents of kids with autism — want to ameliorate the challenges that accompany an autism diagnosis, wherever reasonable. For parents, friends, and relatives of kids with autism who are not neurodiversity-aware, that last phrase can be a synonym for “cure.” I think such attitudes are understandable, but demonstrate a need for redoubled efforts to promote autism awareness and acceptance.

I do hope Autism Speaks’ ongoing evolution continues to guide them towards the research and support of autism symptoms, needs, and challenges — and away from the word “cure.” Especially when that word that doesn’t apply to people like Autism Speaks Scientific Advisory Board member John Elder Robison, who stated repeatedly that while he may be on the autism spectrum, he is not disabled. And I really would love to see Autism Speaks do active neurodiversity outreach — hosting regional screenings of Todd Drezner’s movie Loving Lampposts, for instance.

IMFAR was an unintentional festival of bluntness, though there was a difference between the general conversational directness of attendees with autism, and researchers’ clinical observations coupled with clinical language. I will say that listening to many researchers’ descriptions of the deficits of autism took some getting used to — and if I was distressed as the parent of a child with autism, I can imagine the same language must have been even more off-putting to some attending autistics. But the researchers themselves showed tremendous passion and compassion for their topics, compassion frequently rooted in personal experience — Dr. Courchesne had polio as a child and considers himself recovered, Dr. Dolmetsch is a self-described quirky guy who has a child with autism.

And I will also say that some research was personally upsetting — not because it was offensive or flawed — but because it appeared to be going in the right direction, but was happening too late to help intensely affected kids like my son Leo. But, it also gave me great hope for the future.

I can’t recommend IMFAR highly enough to anyone who is interested in autism research. I believe community members who can participate, owe it to themselves and their loved ones to do so. As I told a friend earlier today, IMFAR blew my mind sideways, backwards, and upside down. I really hope I can repeat the experience next year, in Toronto, for IMFAR 2012.

Stay tuned for at least four more reports from IMFAR sessions I attended. Incredible stuff.