There is a lot of lobbying for a seat on the Interagency Autism Coordinating Committee. This committee’s job is to plan and coordinate research efforts in autism amongst the various U.S. governmental agencies involved.
Membership in the IACC is split between government employees representing these agencies and public members. It is the public membership that draws attention. Many groups would like a seat at that table. Generation Rescue has lobbied in the past for a seat one the IACC or, better yet, on an “autism advisory board” which would oversee even the IACC.
Katie Wright, board member of SafeMinds, the National Autism Association and Generation Rescue, has been rather vocal on the subject on their group’s blog. She has voiced an opinion that the public slots should go to people who represent groups with large constituencies. She was highly critical of one IACC parent member, claiming (falsely) that this parent was only on the IACC due to connections with Tom Insel (the IACC chair). While she has acknowledged her error, Ms. Write remained of the opinion that a mere parent does not belong on the IACC.
Given that the IACC is scheduled to announce new members tomorrow, I thought I would look at the membership requirements. The IACC membership is discussed in the Combating Autism Act, as follows:
(c) Membership-
(1) IN GENERAL- The Committee shall be composed of–
(A) the Director of the Centers for Disease Control and Prevention;
(B) the Director of the National Institutes of Health, and the Directors of such national research institutes of the National Institutes of Health as the Secretary determines appropriate;
(C) the heads of such other agencies as the Secretary determines appropriate;
(D) representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorder such as the Department of Education; and
(E) the additional members appointed under paragraph (2).
(2) ADDITIONAL MEMBERS- Not fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater, shall be composed of non-Federal public members to be appointed by the Secretary, of which–
(A) at least one such member shall be an individual with a diagnosis of autism spectrum disorder;
(B) at least one such member shall be a parent or legal guardian of an individual with an autism spectrum disorder; and
(C) at least one such member shall be a representative of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.
There is no mention that public members must all represent a substantial constituency at all.
My own opinion, for whatever that may be worth, is this. Public members on the IACC should
(a) represent the diverse viewpoints of the autism communities
(b) be willing to put in work on the committee
and
(c) be able to work as a part of a team on the committee.
Somehow, when groups like SafeMinds, Generation Rescue, the National Autism Association and the Autism Research Institute belittle IACC members with blog posts depicting them as “baby eaters“, I doubt whether they meet criteria in [c]. But, hey, that’s just my opinion. The opinion of someone who needs the IACC to work.
That said, is a constituency needed on a governmental committee? I would argue not. Perhaps the most well known public member of a US governmental committee was the late Prof. Richard Feynman. He served on the committee to find the cause of the destruction of the space shuttle Challenger. Prof. Feynman didn’t represent any constituency. He wasn’t a part of the space program. He was just a guy who got things done.
But, if we are going to talk about which big groups deserve to be on the IACC, we should recall that the IACC exists to manage a research plan. Groups that are involved in research should have a seat at the table.
You may recall that last year I discussed Autism research funding: who is paying and how much?. The IACC had put together a document on nationwide (public and private) research funding into autism. It turns out that the largest private group, in dollars, funding autism research is the Simons Foundation. They even outspend Autism Speaks, whom many would assume would be the largest autism organization. Heck, the Simons Foundation outspends the CDC.
Autism Funding by Agency
Another autism organization that doesn’t get heard much on the blogs is the Marks Foundation. Last year they committed $29M to start an autism center for all ages at Boston General Hospital.
It will be interesting to see who the new members are on the IACC. The world is made up of a lot more than just the vaccine-causation groups. Groups who are not as big as they would like us to think. The vaccine-causation groups are already well represented by Ms. Lyn Redwood. I’ve never heard anyone say that she doesn’t represent their ideas ably.
As noted above, there is one parent on the IACC who is not affiliated with any organization. I find this wholly appropriate and would not be surprised nor put off should the IACC appoint a second unaffiliated person–be they autistic or parent. Frankly, another autistic would seem appropriate. I thought Wolf Dunaway was very impressive when he served on a subcommittee.
Tomorrow morning new members will be welcomed. They have my gratitude for being willing to serve in what is an unnecessarily contentious position.
Left Brain Right Brain 
I’d like to see someone good at bridging, and not attacking, anyone. That is the only way the community will move forward.
susan senator,
I agree. I think one can and should have opinions and a firm viewpoint to sit on such a committee.
I’ve been meaning to write on this, but there is a big difference between finding “common ground” and being “unified”. No two people speak with a unified opinion. Heck, I don’t even agree with everything I’ve said in the past. People who want a unified opinion shouldn’t work on a committee.
I once wrote a post about how the vaccine-causation groups could integrate with the greater autism community. It doesn’t involve giving up their ideas of vaccine-causation. It does mean giving up on some ideas that are pretty clearly disproven or, at the very least, expecting everyone else to accept those ideas. For example, they don’t need a vaccine-induced epidemic. In fact, they should argue the opposite–that with the rising autism rates (for whatever reason) it is nearly impossible to work out whether there is a small susceptible population to vaccine injury. Use the facts to their advantage and ask for help from the community. Don’t push unproven or disproven ideas on the community and demand to run the show.
A coalition could happen. Probably not with the current leadership, but it could happen.
But, frankly, the more important coalitions are between autistics themselves, researchers and parents. That’s going to take work, but it will pay off more in the long run.
Sullivan: totally. First, they need more autistics involved. But, if they are looking for parents, they cannot be screamers from either side. They have to be people who respect the way others thing. I do not buy into the vaccine causation, although experts themselves admit that vaccines cause harm to a *small* percentage of the population… okay, so it’s something environmental for some of those people. And PBS Frontline did not do a good job representing the serious thinkers on that side. That being said, the other side has to attack us a lot less, too. BUT we can’t just cut off such a large percentage of the community. And neither should they.
Looking back at this, I wish I hadn’t used the word “deserves”.
The IACC isn’t an award or recognition. It is a responsibility.
The question is really, who do we need on the IACC to better serve the communities.
If they are going to set research goals, they have to understand what goals are needed, i.e. they have to understand the needs of people with autism.
They have to have an understanding of how research is done, and what is reasonable to expect. They have to have a respect for the scientific method and to set research goals that follow the science that has already been done, and that builds on that science.
Sullivan I agree, “deserve” is a poor choice of wording.
Demanding a seat for the “Hairy Biped” on the grounds that their “constituency” deserves representation is pretty much exactly like fascists running in a democratic election. Why should anyone even consider a rep of GR, SafeMINDS etc. for a position which will require cooperation and compromise when they won’t even let people with other views comment at AoA? Making a central talking point of the belief that the same health authorities on the board are also involved in a massive coverup doesn’t help much either.
Incidentally, GR has applied for 250K Pepsi grant which will be decided by popular vote, and it appears has already been overwhelmingly voted down (see discussion at Orac). AoA announced that SafeMINDS has entered into a similar popularity contest for 50K through ebay. I suggest people look into this, and get out the vote against anti-vax bullies.
I think it is ridiculous that there is only one Autistic person on the IACC. Generally, reputable organizations serving specific populations of people tend to be made up of, at least in large part, of persons from that population. How can a group of people make decisions that will affect the lives and welfare of Autistic people without significant input from Autistic people? It’s ludicrous. There would be an outrage if the government had a group of private and public members devoted to research bettering the lives of women, made up of all men and one woman. Our society would not stand for that. But because of pervasive attitudes that Autistic people (and people with other disabilities), are “less”, no one seems to care much that we’re not included in the very conversations that affect us. I’m angry.
Well then, I’m happy to announce here that Ari Ne’eman has been appointed to the IACC.
Today the Department of Health and Human Services announced that Secretary Sebelius appointed five new public members to the Interagency Autism Coordinating Committee (IACC), expanding the committee to a total of 24 members. The five new members include a person with ASD, parents of people with ASD, and they also represent perspectives from a variety of different ASD research and advocacy organizations. To read more, please see the Department of Health and Human Services press release http://www.hhs.gov/news/press/2010pres/04/20100430a.html
and the IACC News Update posted on the IACC home page (http://iacc.hhs.gov/).
Clay,
thanks for that comment and the links–soon to be incorporated into a post.
YES! Ari!
I thought that was too much to ask for.
Well, two Autistics on the board are certainly better than one.
Now if the Senate would just confirm him for the NCD.