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 … Continue Reading ››
I’d like to respond to “Autistic Advocates Clash with Autism Parents at Government Committee Meeting”
by saying this: No one, and I mean no one, should be talking about what’s best for me besides me. Yes, my parents know me best in the world, but that doesn’t mean they know better. It perplexes me that we are having this debate still, and people don’t see how ludicrous it is to have an autistic group represented by non-autistics. Imagine the NAACP represented by whites. Recall that image of a group of white men signing legislation limiting women’s birth control… Yet it is totally okay for many autistics to be affected by the will of neurotypicals.
I simply say this: If you want the views of nonverbal autistics to be heard, invite them to the table. Make sure they can access the meeting with the support they need. Seek out autistic people … Continue Reading ››
The Interagency Autism Coordinating Committee
(IACC) recently recommended that autism research funding double, including an increase to adult services and supports. They also called for an increase in research funding for co-occurring conditions like epilepsy or Ehler-Danlos syndrome, which cause death and chronic pain for many autistic people.
IACC is a government advisory panel made up of federal officials, autism professionals, family members and autistic adults. Currently, only three of the 31 IACC members are autistic. None of the federal members are autistic, nor is their chair. IACC is responsible for setting federal autism research priorities.
John Elder Robison
, an autistic member of IACC, is pleased with the increase, as well as increased attention to issues beyond basic biology and genetics. “In accordance with out new President’s wish to make America great and get things done, we have recommended a level of funding that we feel will take us a … Continue Reading ››