Last week, the quarterly Interagency Autism Coordinating Committee meeting took place. IACC is a government advisory panel responsible for setting federal research priorities. A thread running throughout the six hour meeting was representation and diversity, or lack thereof, both in autism community leadership positions and within IACC itself. In many ways, the sessions were a string of events demonstrating not only the need for more autistic representation, but the need for racial diversity. There are currently only two autistic members of IACC. A third autistic member, Amy Goodman, stepped down in 2017. Similarly, IACC’s membership is almost entirely white.
Dr. Marcella Ronyak, IACC member and Deputy Director of the Division of Behavioral Health for the Indian Health Service, gave the first presentation of the day. She began by asking how many people in the room had a good understanding of what Indian Health Services is and what it is that they do around autism issues. Only a few hands went up in a packed room. She went on to give an overview of what her department does — What services are provided, cultural barriers, navigating an ever shrinking pot of funding, and other issues vital to the American Indian community.
The question period was dominated by Dr. Diana Bianchi another IACC member, asking several questions about the “blood quorum,” a malapropism of “blood quantum.” Blood quantum is the method by which individual tribes determine who is eligible for tribal services. While undoubtedly serving Dr. Bianchi’s personal curiosity, her questions had little relevance to autism. A man sitting behind the writer of this article huffed in frustration after the second question on determining percentages of native ancestry. “Why doesn’t [Dr. Bianchi] just Google it?”
Dr. Ronyak’s presentation was followed by discussion of which research papers should be highlighted by IACC. Discussion of a paper about differences in what autism indicators black parents find concerning was missing a necessary component — The opinions of black parents. One of the few black members in the committee’s history, Shannon Haworth, stepped down in 2016 to pursue a career in public service. Dr. Joshua Gordon highlighted how much still needs to be learned about mental health disparities and race. “We have a lot of evidence for disparities and not yet a lot of evidence about exactly why or exactly what to do about it.”
Autistic IACC member Sam Crane spoke up about the importance of cultural competency and respect. “Sometimes if a culture is not concerned with a particular manifestation of autism — [this paper] says repetitive behaviors, for example. That might not mean that they’re wrong, that they should be really upset about repetitive behaviors… and that we need to educate them that they should be concerned. Maybe we should tailor services to the things [black parents] actually are concerned about [according to the paper], like academics, emotional development, [and] disruptive behaviors.”
Later, during the public comment session, Dr. Lee Watchel of the Kennedy Krieger Institute asserted that IACC needed more parents of “severely affected children.” IACC members Alison Singer echoed concerns that parents were not being adequately represented on IACC. “There are parents who have children who are very severely affected who are feeling left behind, Ms. Singer noted. She even went as far as to suggest that autistic people were unfairly dominating conversations about autism, claiming, “the pendulum has swung the other way.”
Dr. Susan Daniels set the record straight, listing several other parent members of IACC. “We do have Allison Singer, who is a parent on our committee… Edlyn Peña is a parent. Kevin Pelphrey is a parent, and [Marcella] Ronyak is a parent.” Additionally, Robert Ring is a parent and John Elder Robison is both autistic and a parent. Parents of children with high support needs are not underrepresented, unless Ms. Singer is willing to make the claim that her child is singularly afflicted in comparison to every single other IACC parent member’s child. Racial diversity was not discussed again for the remainder of the meeting.
The next IACC meeting will be on April 19, 2018. You can submit your own comments, to read or be read at the meeting by emailing IACCPublicInquiries@mail.nih.gov. Nominations for new public members will open in 2019.