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 long way toward achieving our goals,” Robison said. Robison is pleased with what he sees as a shift away from focusing on basic biology and genetics. Instead, he feels that IACC is moving to, “develop and deploy therapies and tools that will help people living with autism right now.”
Federal funding makes up the majority of autism research funding. Currently, only 2% of federal funding goes to research on “lifespan issues,” issues that focus on autistic adults. 6% of federal funding goes to research on services autistic people, mostly children, receive.
The Autistic Self Advocacy Network supports an increase in funding to issues that directly impact the lives of autistic people. Executive Director Julia Bascom notes, “the most pressing issues for the autistic community receive very little funding. We need more research on lifespan issues, services, inclusion in education and in the workplace, effective communication and the needs of autistic people generally. We support increasing funding to all of those research areas and re-balancing the research agenda to better reflect the needs of our community.”
IACC has not yet decided how increased funding should be distributed, or if a greater percentage of funding will go to issues relevant to autistic people’s lives. Additionally, while the recommendation to increase funding will be read by lawmakers, there is no guarantee that they will follow it.
IACC meetings happen four times per year and anyone may attend. If you would like to go to the next IACC meeting, it is scheduled for October 24, 2017. If you can’t attend in person you can watch a free live stream. You can also submit a public comment.