Talk back to IACC
“requires the Interagency Autism Coordinating Committee (IACC) to develop and annually update a strategic plan for ASD research.”
As part of the process the IACC consults with members of the autism community through a number of mechanisms. Some parent advocates and one autistic person are members of the IACC . They get the chance to meet with researchers and clinicians and shape the autism agenda. There is another overlapping group the IACC Strategic Planning Workgroup and four scientific workshops.
Unfortunately, for reasons I have been unable to fathom, one of the parent advocate groups that has been involved with IACC is the anti-vaccine group Safe Minds. Lynn Redwood, Laura Bono and Mark Blaxhill have had a disproportionate voice in IACC’s workings to date. I doubt that they have been able to influence the scientists with their ideas but I am concerned that the research community is getting the wrong idea about the autism community if it thinks that these are typical representatives of us. I am also upset by the way they have operated within IACC. They make their unfounded statements in the meetings and feed them back to their media friends who report them as if IACC support them. Take this example from David Kirby.
July 15, 2008 - A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.
Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”
Part of the problem is that the scientists do not argue back. Perhaps they believe that autism is such a terrible affliction that they would be wrong to criticize parents. But these Sefe Minds parents are cynically abusing their politeness to pursue a political agenda and misrepresenting the scientists silence as support for their ideas.
Now we have a chance to put that right. IACC has called for public comments in a Request for Information on the Interagency Autism Coordinating Committee Draft Strategic Plan for Autism Spectrum Disorder (ASD) Research.
They include instructions on how to make you input
Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions. The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.
I suggest that it would be good for them to get as many responses as possible from anyone with a connection to autism - autistic people and their familes, researchers and practitioners - to demonstrate the full extent of our community and show that Safe Minds is unrepresentative of our views. And you do not have to be American to respond. The US research budget for autism is massive in comparison to anything else in the world today. The direction that US research takes will influence researchers all over the world. And their findings will impact on the world autism community. We are all affected by this. We should all make our thoughts known while we have this opportunity.
Other posts on this subject include:
I have no doubt that Safe Minds, Generation Rescue, NAA, TACA and all the other anti-science autism groups are mobilizing their members to comment to the IACC. It is up to us to improve the signal to noise ratio and make our voices heard.
Pingback by IACC Strategic Plan RFI | Autism Library | August 22nd, 2008
[...] This has already been discussed at Neurdiversity, LeftBrainRightBrain, and Action for Autism. [...]
Comment by laurentius-rex | August 22nd, 2008
If they will listen which I doubt
There was supposedly a public comment process for DSMV
I commented and got no reaction, followed up and got no reaction , followed up and got no reaction,
Wonder whether the US consultation methodology and the self salving is not even worse than our own civil service?
Well I will give it a try, but who am I? My name is not Putin and neither am I Iranian or North Korean?
Is the Banana Obama gonna be worried, the white man’s black man, I doubt it.
Well I shall endeavour a comment none the less and hope that this little Englander is not considered an also ran and no more.