Earlier this week the IACC met via conference call to finalize the Strategic Plan updates for 2012. A 2-day workshop on the updates had to be cancelled due to hurricane Sandy. Below are just a few fragments of discussions that occurred during the meeting.
The meeting started with a discussion of whether the IACC should issue a statement following the speculation that the shooter at Newtown Connecticut was autistic. Such a statement has been prepared and will be released shortly.
One public comment noted the lack of support for a family trying to navigate the extra hurdles a family with disabilities faced following Sandy. Some of the federal members noted that there are resources specifically focused on vulnerable populations. I am trying to get more specifics on that now.
Each question of the Plan was discussed and modified, sometimes with word smithing and sometimes with more extensive edits. The question on treatments in particular had a great deal of discussion and edits were prepared real-time by OARC staff. There is a good team supporting IACC and it was impressive to see them continue to keep making notes on the discussion while preparing significant edits for approval during the call.
One question that came up during the discussions was that of immigrant populations and autism prevalence. There has been much discussion of the Somali-American community and autism and Idil Abdul spoke of the concerns of that community. Two studies had come out in then past year, one from Sweden and one from the Netherlands, suggesting higher autism prevalence for immigrant communities in those countries. This highlights the fact that we don’t have autism prevalence data for most of the world. To my knowledge there are a few from northern Africa, possibly none from sub-Saharan Africa and South America, little or none from south Asia.
The UK adult autism prevalence study was discussed and the fact that little is known about the adult population in the U.S..
Obviously much more was discussed in the whole day meeting. Much of that can be found in the draft documents linked to above.
By Matt Carey
Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.