John Elder Robison, a member of the Autism Speaks Scientific Advisory and Scientific Treatment Board, author, and advocate will be on tour promoting the softcover version of his acclaimed book Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers.
This blog was originally posted here.
In my opinion, the best thing about this year’s IMFAR autism science conference was the degree to which the community has become involved. Four years ago there was hardly a spectrumite to be seen there, geek scientists excepted. This year we were everywhere.
Just a few years ago, autistic bloggers and writers gazed in from the outside and wondered what was discussed in the IMFAR meetings, and what INSAR (the organization who puts on the conference) really did. Scientists wondered about the wisdom of admitting the public to what are often highly technical presentations and discussions. In the absence of openness, conspiracy theory and contempt ran rampant.
Things changed recently, thanks to the INSAR board and the folks on the Community committee. We have seen more community involvement each of the past three years as we’ve added programming to serve the autism community as well as the researchers.
Autistic artists and entertainers have delighted us with their performances, and their work. Not only has that made an enjoyable addition to the conference, it’s provided an important humanizing element, especially to younger researchers who may be new to the field. The arts build community, all round.
I am especially happy to see bloggers and writers from our community of all points of view. People who might never have spoken to one another now share meals together and become friends, thanks to meetings that take place here.
In their writing and other communications, many new ideas emerge, all with a common theme: We need to direct our best scientific efforts to alleviate disability, improve quality of life, and create the best possible opportunities for our population.
Some writers are critical while others are laudatory. I’m pleased to see it all.
Our pre-conference for the community was standing room only, as was the stakeholder luncheon and Q&A. Attendance at those events has gone up every year.
INSAR and its sponsors have continued to offer scholarships, admission fee waivers, and travel grants to encourage community members to attend. That’s a great thing, and it’s made possible by the conservative governance of the INSAR organization that generated the financial surplus to pay for benefits like these.
It may surprise you to read that some of the community openness at IMFAR was inspired by the example set by three US government groups: the IACC, whose meetings are fully open, and NIH and CDC who make more and more of their discussions public as well. Not only are those events open to the public physically, many are webcast and archived online, something INSAR is doing now as well.
I’m proud to have served on committees for INSAR and the government groups above. I’ve learned more than I can tell you here and I’m most pleased at the way others have joined me to explore and share what we find with the wider world.
I’ll look forward to an even bigger community presence, next year in Spain.
John Elder Robison
Writing from IMFAR 2012
Toronto, Ontario, Canada