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The next IACC meeting is scheduled for Tuesday, January 12, and will be webcast live. Community members who would like to submit written comments for the meeting should do so by Tuesday, January 5th.
TPGA: How would you describe the IACC to someone who isn't aware of what the IACC is, and what it does, beyond the standard -- rather stuffy -- description?
Sam Crane: The Interagency Autism Coordinating Committee is the government's attempt to keep track of the very large number of research studies, pilot projects, and ongoing programs that concern autism in some way. These include the autism prevalence studies that the Center for Disease Control conducts, brain research funded by the National Institute of Health or by private foundations, university centers on developmental disabilities, and even autism programs funded through Medicaid. There are so many research projects and programs that, without coordination, there's a real danger of ending up with huge gaps in research or services, or unnecessary duplication of research and services.
That said, the IACC's job isn't just to keep track of what everyone's doing - it also makes recommendations and helps to promote the research that it thinks is most important. That's why it really matters to have the right people at the table. A little more than half of the members are from government agencies that fund research or services -- such as the NIH, CDC, and the Centers for Medicare and Medicaid Services. It also includes a lot of members of the public, such as representatives from autism advocacy groups, universities, and private foundations. At least two of the members of the public have to be autistic self-advocates, another two have to be family members, and two have to be representatives of autism research, advocacy, or service organizations. In practice, there are a lot more family members and organizational representatives than self-advocates, but I'll get to that in more detail later.
TPGA: This is your first time serving on the IACC. What motivated you to apply? What are your goals for being on the IACC?
SC: I've got a background in psychology research and was very interested in being part of that work again. I wrote my undergraduate thesis on language learning and worked for a year in a language development lab before deciding to go into advocacy instead. I also wanted to make sure that there was adequate representation on the committee by self-advocates, and particularly by members of self-advocacy organizations. Right now I'm the only representative of an autistic self-advocacy organization on the IACC. Before I joined, Ari Ne'eman and Scott Robertson, both co-founders of ASAN, took turns being the only representatives from a self-advocacy organization on the IACC.
My main goal on the IACC is to try and push for more research that responds to felt needs in the community: things like communication needs, access to quality health care, trauma-informed care, and the needs of transitioning youth and adults. I'm particularly interested in addressing how underlying values guide choices about what to research and what conclusions people draw from the results of research. Sometimes when researchers don't talk enough to the people they're studying, they can pick the wrong topics and interpretations -- this is true not only in the autism world but across a wide spectrum of academic research. In the autism world, we see over-spending on research about therapies to increase eye contact and reduce stimming, or about autism causation, and under-spending on research about things that really improve quality of life like augmentative communication.
TPGA: You work for ASAN, the Autistic Self-Advocacy Network. Are you serving as an ASAN representative, as an individual, or as both?
SC: It's a complicated question. The law says that there need to be at least two autistic individuals on the IACC and at least two representatives of autism research, advocacy, or service organizations. Right now there are three autistic people on the IACC, and all of us are also representatives of either a services or advocacy organization, or a university. So I'm really wearing two hats: I'm there as an autistic individual and as a representative of ASAN. When I sit on the IACC, the Autistic Self Advocacy Network is written right under my name.
TPGA: How representative is the current makeup and membership of the IACC, compared to the real-world autism and autistic communities?
SC: It's not really representative at all. More than half of the members are federal agency representatives -- some have a personal connection to autism, and others don't. Of the fourteen public members, only three of us are actually autistic. There are many, many more people on the IACC who are family members, representatives of autism-related organizations, or both, than there are self-advocates. There are few people of color among the public membership and no autistic people of color. All of the public members are "professionals," meaning that there's little class or income diversity.
That's something that we need to change. When the Autism CARES Act was being passed in 2014, we lobbied to make sure that at least one of the autistic members of the IACC would be a person who used Medicaid home and community-based services -- which means they'd have to be someone who needed significant supports in order to live in the community. Otherwise even the self-advocates are trying to talk about services and programs that they don't personally use. In the meantime, I'm going to do my best to make sure that my work on the IACC is informed by a wide range of experiences, and that's where my work with ASAN is going to be very helpful. We have a very diverse community base.
TPGA: Do you think this IACC has more potential to effect positive, useful change than previous committees? Do you think the committee has a reasonable grasp on the matters of most immediate concern to autistic people, and/or their families?
SC: We try to make every year better than the ones that go before it, but this year we have some added advantages. In the last Autism CARES Act reauthorization, we strengthened the IACC's responsibility to talk not only about research but also about federal programs. That means that the committee can't simply ignore long-term services and focus mainly on causation, screening, and prevention like it has in the past.
There's still skepticism among some people on the Committee, though, about whether people with very significant needs can benefit from quality communication interventions and integrated long-term supports. These Committee members are very committed to biomedical and causation research. We have to work on that.
TPGA: You recently participated in your first official IACC meeting. Were there any surprises, good or bad?
SC: I was very well prepared by people who've served on the IACC before me. Even then, I was surprised by how hostile some Committee members were to the self-advocates in the room. They went out of their way to say that self-advocates are not representative of people with the most significant needs, who supposedly can't self-advocate. It was insulting, partly because of the three self-advocates on the IACC, two of us are brand new members. I'd never met these other committee members before, they know absolutely nothing about my personal history or about my support and medical needs.
It also assumes that all self-advocates are only representing ourselves, which again just isn't true and is deeply unfair to self-advocates on the panel. Many of the people representing autism organizations or research groups are also parents, but nobody's accusing them of looking out only for their own children. Why should people make similar accusations of self-advocates who've also made a career out of advocacy? I spend most of my day working to secure access to long-term supports and services, communication supports, self-determination, and health care -- including and especially for people who have complicated medical needs, communication barriers, and support needs. ASAN chose to focus on those issues because they affect the whole community.
TPGA: Was the IACC meeting space aware of, and able to provide, sufficient accommodations for autistic members, or speakers?
SC: I have a pretty hard time sitting still throughout day-long meetings, and I know that others have it even harder. I think a lot of autistic members of the public who came to speak weren't able to stay the whole time. There is a webcast for people who can't be there in person, but of course it's not quite the same.
TPGA: What advice would you give to people who are not on the IACC but still want to contribute to IACC proceedings and help direct policy?
SC: Every time we meet as a full committee, there's a window for sending in comments. You can send them in writing, and also sign up to deliver comments in person. Information on how to do that is here: https://iacc.hhs.gov/public-comment/index.shtml. Comments about research and services priorities are helpful. It also helps to tell us about particular research studies or services programs that you think are particularly important or particularly flawed. There's a very pressing need for comments from self-advocates, especially self-advocates who have personal experiences particular interventions, services, and supports. It really helps to see people sharing their personal stories about being underestimated and/or segregated, and what kinds of interventions and services helped them reach their goals.
Sam Crane is the Legal Director and Director of Public Policy at the Autistic Self Advocacy Network, where she spends most of her time working on access to services, health care, communication supports, and the broader community. She is also one of three autistic members of the Interagency Autism Coordinating Committee.