Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.

By Matt Carey

6 Responses to “Will a new IACC be seated soon?”

  1. Jonathan March 23, 2015 at 03:04 #

    Do self-advocates include pro-cure, pro-treatment, anti-neurodiversity advocates? if that’s the case, how about having roger kulp as a public member. He’s expressed interest in serving and if he’s appointed he’d be the first pro-treatment, pro-cure, anti-neurodiversity self advocate. Maybe you could recommend him if you really believe in diversity of the committee.

    • Roger Kulp March 23, 2015 at 16:35 #

      I have already submitted an appilcation,and like everybody else,I am just sitting back and waiting.I am very indebted to John Elder Robison for the assistance he provided in submitting my application.

      I believe that since Dr. Insel has both expressed an interest in comorbid medical disorders that contribute to autism,and the fact there was a special IACC meeting about these conditions,that an adult who has a diagnosis both of autism,and multiple metabolic/mitochondrial disorders that contribute to autism,should have a voice on the IACC.

    • lilady March 23, 2015 at 17:40 #

      Did you write a letter in support of Roger Kulp as a public member of the IACC?

      Did you post comments on this blog and other blogs where Congressman Posey and other anti-vaccine activists attempted to defeat the reauthorization of the Combating Autism Act?


    • Sullivan (Matt Carey) March 23, 2015 at 23:39 #

      Too late to recommend anyone. The nomination time is closed. My voice carried as much or as little weight as anyone else’s, so my recommendation wouldn’t mean more than, say, yours. I assume you nominated him. I’d be fine with Mr. Kulp as a public member.

      Per Mr. Kulp’s comment, he was helped with his application by John Robison. Is Mr. Kulp anti neurodiversity? If so, well, good for him and for Mr. Robison for working together. If not, why are you calling him that?

      We have discussed at length your misunderstandings of neurodiversity, and of treatment. I don’t see the value in opening that up again other than to point out that you are incorrect on many points.

  2. FeynStein April 4, 2015 at 16:07 #

    Seems like I can’t even discuss autism anymore without everyone in ear shot confiding to me that they think they are, or might be autistic too. The story usually goes that they have felt different, quirky, geeky, bullied, silenced, underappreciated, unrecognized, even out right superior, in some fashions as compared to other children growing up.

    I find the sheer number of people so eager to claim a developmental disorder disturbing, sickening, and quite telling of human nature. Seems these are quite ‘normal’ experiences. What makes all these people autistic then? Well, a psychologist would likely say that most people have some deep-seated need to feel important, ironically most autistics I have personally met do not have this personal desire, to be in the limelight per se. I call it the John Elder Robison Complex, or JERC, for short.

    This JERC phenomenon began after Robison became the poster boy for the now defunct autism disorder labelled Asperger’s. Ironically, he more than likely does not meet the new criteria, and probably never met the previous criteria either. The man has socialized in rock stardom since he was a teenager. I fail to notice any social disorder in John Robison’s life, and I have researched his background as thoroughly as one can without seeking government clearance.

    I am grateful that autism awareness acceptance is taking hold within the general public. And I am sure that these people can relate to some of my issues on the surface. Autism is after all just typical human traits gone awry, so of course many will commiserate to an extent. But they fail to take into account that the scope and scale of disorder that autism has on an individual, often leaves them unable to effectively relate their thoughts, feelings.

    In this way the general public misjudges the impact this developmental disorder has on an individual in reality. And it tends to negate most beneficial aspects of awareness, because now it’s not taken seriously as a debilitating disorder. It’s analogous of Geek Syndrome, It’s quirkiness, it’s eccentricity, it’s intelligence (oddly) ETC. It’s just insane and I don’t blame the public for not falling in-line with the neurodiversity movement which spur this misconception forward with self-vested interest. John Elder Robison at the helm. What JERCs!!!

    • Sullivan (Matt Carey) April 5, 2015 at 00:55 #

      “Seems like I can’t even discuss autism anymore without everyone in ear shot confiding to me that they think they are, or might be autistic too.”

      Never happens to me. Given your premise is false, the rest of your statement is very suspect. That before we take into account that it’s just a big childish slam. Rather sad, really.

      You are

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