Today, November 29th, the House Committee on Oversight and Government Reform held a hearing on autism. ASAN has closely followed the news and information leading up to this hearing, and we have kept our supporters and members informed. Last week, we expressed our concern that the hearing initially excluded any Autistic speakers or witnesses. Shortly thereafter we were pleased to announce that the House has listened to the voices of self-advocates, and that the hearing now includes two Autistic witnesses, including ASAN president Ari Ne’eman.
Although we are glad that Congress has listened to the Autistic community and heeded our message of “Nothing about us without us!” we have remained concerned about some of the rhetoric that would make its way into the hearing. This includes the pervasive notion of autism as an “epidemic,” and an emphasis on investigating the “causes” of autism at the expense of exploring ways to help Autistics thrive within our communities.
The majority of federal funds directed at autism-related issues and projects are allocated toward research, and ASAN urges everyone invested in the national dialogue about autism to be aware of exactly how those research funds are spent. For example, in 2010 the National Institutes of Health (NIH) spent about 217 million dollars on autism research, but only 2.45% of those funds went toward projects intended to improve the quality of services and supports for Autistic people and our families. Additionally, only 1.5% of the research funding spent by NIH in 2010 was dedicated to investigating or addressing the needs of Autistic adults. As part of his testimony, Ari Ne’eman addressed such glaring disparities in funding, and called for more research and efforts that focus on ways to improve the lives of all Autistic people rather than exclusively focusing on causation, physiology, and diagnosis. He also made sure to draw attention to disparities in accessing autism-services based on income, race, and gender.
In addition to Ari’s testimony before the House committee, DC-area ASAN members and supporters gathered to attend the hearing. Through our presence we showed our support for the Autistic speakers, and provided further representation of the Autistic community. Video of the full hearing is available online.