As some folks in the autism communities seem to misunderstand the purpose and mission of the IACC — the Interagency Autism Coordinating Committee, we asked recent IACC appointee Matt Carey to talk about why he joined the IACC, what the IACC does, and what he hopes to accomplish as a member. 

From the IACC member bios: Dr. Matt Carey joined the IACC as a public member in 2012. Dr. Carey is
the father of a young child with multiple disabilities, including autism
spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and other autism blogs. His writing focuses on
reviewing current autism research in an understandable way for the
public and he is deeply committed to communicating the importance of
getting the science right for autism. 

TPGA: What is your elevator pitch, in terms of telling people what the IACC is and what it does?

Dr. Carey: First, I’d point out that while I am a member of the IACC, I don’t represent them. So, even when discussing the IACC itself, my opinions are my own.

The IACC is a group with both government and community members whose job is to advise the government and private funding agencies on autism related issues.

What is the membership of the IACC, in general? Is everyone from the autism communities?

The IACC is 29 members, if I count correctly, about half government and half community members. There are autistic adults, parents, and representatives of autism organizations, with some overlap. For example Scott Robertson is both an autistic adult and a member of ASAN (The Autistic Self-Advocacy Network).

What made you want to join the IACC?

I’ve been following the IACC closely since the second generation of the committee formed in 2007.  After watching meetings and writing about them for years, I decided I had things I wanted to try to see done and the best way was to participate.

How does your membership experience compare to your expectations?

This has been a strange year for the IACC. The previous IACC’s term ended in September 2011, and we started in July 2012 so there was a big gap. We had complete the requirements for 2012 in less than six months. And our big meeting was cancelled due to hurricane Sandy.

So, so far this has been very different from what I’ve seen before.

One big surprise is how little time there is to actually do business at the meetings. There are about 29 people on the committee, and a few hours for discussion and business at each meeting. That’s not a lot of time for any one person to have an impact. There are votes by email and the drafts of documents are put together outside of meetings, so that saves a lot of time.

Also, I never realized how big the support team is for the IACC and all the good work they do. If you watch a meeting you will see Susan Daniels, the acting director of the Office of Autism Reseach Coordination, helping to keep the meeting moving and following the federal rules. She does a lot more than that. There is also a small team of people making sure everything happens, including science writers and support. It’s a big effort and these are really good people. They make sure that the publications like the Strategic Plan get put together in a final form. A great example of their work is the Research Portfolio Analysis Tool (https://iacc.hhs.gov/apps/portfolio-analysis-web-tool/projects), that was put together by OARC to help everyone take a look at what projects are being funded and what are not.

What are some of the IACC’s more challenging issues?

My opinion is that the IACC’s biggest challenge is in getting its advice put into action. As I mentioned above, the IACC is an advisory committee. We don’t write requests for researchers to submit grants or review grant proposals or things like that. So ensuring that much of the advice is implemented can be tough.

Another issue is that in putting together a long-term plan, when the law doesn’t provide for long term funding for autism research. Public Law 109-416 created the second generation IACC and allowed the government to appropriate millions of dollars for autism research. But neither 109-416 it nor its follow-on, Public Law 112-32, created a long-term funding source. 112-32 ends next year (2014).

What aspects of the IACC give you hope for its effectiveness?

First, this is a good team of people, both from the government and community side. For example, I had lunch with Noah Britton and Dennis Choi at the last meeting. Noah is very good. He has some good work of his own and some excellent insights into areas outside his own specialty (psychology). Denis Choi is at SUNY Stonybrook and is with the Simons Foundation. He’s not only a good researcher, but he’s very good at describing complex issues in a way a non-specialist can understand.  And these are just two examples.

I think the fact that we have director-level NIH people on the IACC is good. This is a key target audience for the advice of the IACC and they are right there. The fact that Tom Insel (IACC chair and director of the NIMH) obviously stays on top of autism research is a good sign. I’ve also found that researchers take the IACC very seriously. When I’ve approached researchers for information, I’ve found them to be very willing to make time to share. When we were putting together the update for the Strategic Plan last year, the outside advisors brought in to work on it were some of the best out there.

Have you heard any misconceptions from the public about the IACC? If so, what were they?

Probably the biggest misconception is with what the IACC is charged to do. We don’t control the autism research budget, we don’t select which projects get funded, we don’t even take an active role in what research project grants are solicited. The IACC is an advisory committee. We have influence, but not control in how the research agenda is implemented.

One way I look at it, since I’m a parent with a kid in special education, is where the IACC process is like and not like an IEP meeting. In an IEP meeting you get to help set goals for your child. In the IACC, we get to set goals for the research community. And that’s where the parallel ends! In an IEP you then get to work on where and how those goals will be implemented. Not so in the IACC.  The government agencies and private funders take the goals and implement them without our further participation. In an IEP parents help set out how progress towards goals will be measured.  In the IACC, we can count how much money went to what goals, how many papers were published, but how do we measure the impact on improving the life of those in the autism communities? That is a big question which is just starting to be addressed by the IACC.

But the short version is that when people say, “The IACC has spent millions of dollars…” they are saying something that isn’t true. We can influence how money is spent, but not control how it is spent.

How can members of the general public get heard by the IACC?

By submitting public comments. There are two ways:

One is to submit written comments by email: IACCPublicInquiries@mail.nih.gov. You can always send a public comment. OARC (the Office of Autism Research Coordination) saves them and gives them to us before the meetings.

Another is to present public comments in person. This is tough for people who live a long way away — travel to Washington, DC to give a five minute statement is not something in the budget of most autistics or parents. But if one can, it is a way to get heard. You have to sign up and give the basic text of your statement in advance of a given meeting.

I read the comments as soon as I can after I get them, and again a few times before the meeting. It’s clear to me that others on the committee read them as well. And there’s time set aside in the meetings to discuss the comments.

And then there’s participation. As I said before, this IACC ends in September 2014. There is nothing certain, but if they create a follow on bill, there will be a new IACC and new members. If so, there will be a call for nominations and a chance to get yourself considered to be a member. One misconception is that people have to be a member of an organization to get on the committee. That’s not a requirement in the law.

Where does the IACC go from here?

The IACC has focused so far primarily on the deliverables spelled out by the law. The IACC creates a “Strategic Plan” for autism research. The IACC submits a summary of advances in autism research. But there are other broad mandates for the IACC. Such as making recommendations to the Secretary of HSS about any changes we might recommend for Federal activities in autism. Not just research, but any Federal activitities.

The IACC is working right now on a letter to inform the insurance changes that are ongoing with the Affordable Care Act (ACA), which is creating insurance exchanges in the states. The hope is to get autism treatments included in the care offered by the exchanges.

What effect would you like to have on the IACC?

Personally, I’d like to see if we can get the IACC to advise the Obama administration to fulfil its campaign promise to fully fund special education (IDEA).

There are many areas elsewhere I’d like to see focus applied. One is to focus attention on the needs of autistics with multiple disabilities, including intellectual disability. To come up with some goals which are specific to improving the lives of those in this subpopulation.

I’d like to see research into how there are disincentives for doctors in the current system to take on developmentally disabled patients. One doctor told me that about 80% of the information she uses to create a diagnosis is from direct report from the patient. What if the patient has difficulty communicating, on sensory issues that make it difficult to determine the condition? Developmentally disabled patients can take a lot more of a doctor’s time, but doctors are not reimbursed for this.

I’d like to see study ongoing on autistic adults now, so we can see what helps and what hurts now, not wait. I’d like to see if there are medical conditions which are more common to adult autistics. There are a number of medical conditions known for people with Down syndrome, including early onset dementia. But because these have been identified and addressed, the lifespan and quality of life for adults with Down syndrom has been improved. Why are we waiting to focus attention on the adult autism population?