The Autistic Self Advocacy Network is deeply concerned by the recently introduced Combating Autism Re-authorization Act of 2014 (H.R. 4631). H.R. 4631 fails to address many of the longstanding problems in the CAA, including the lack of funding and attention to research on services and the needs of adults, failure to include adequate self-advocate representation on the Interagency Autism Coordinating Committee (IACC) and the use of language offensive to and stigmatizing of Autistic Americans. Currently, only a small fraction of federal research funding focuses on effective delivery of services or on the needs of autistic adults, both of which are issues of pressing concern to autistic people and their families. Of NIH’s $217 million investment in autism research, only 2.4% has gone towards improving services and only 1.5% toward research on the needs of adults.
H.R. 4631 would exacerbate these problems by extending the existing structure of CAA to 2019. In addition, the legislation would create four IACC members appointed by Congress, risking the further politicization of federal autism policy. The addition of four IACC membership positions to be awarded by politicians is particularly troubling in light of H.R. 4631’s continued neglect of a critical group that is currently dramatically underrepresented on the IACC: autistic people themselves. The IACC is only currently required to have one of its members be an individual with an autism spectrum diagnosis, a status quo that H.R. 4631 would perpetrate. Finally, CAA’s use of the language of “combating autism” shows a profound disrespect and lack of concern for the preferences of autistic people and our families who find such language offensive and hurtful. H.R. 4631 maintains that language.
Last month, ASAN was joined by eighteen other disability rights organizations calling for reforms to CAA to address these problems. Regrettably, H.R. 4631 has undertaken no such changes, preferring to deepen commitment in a status quo that actively works against the interests of autistic people and our families. Support for legislation that perpetrates dangerous and hurtful trends in the lives of Autistic Americans is incompatible with friendship with the self-advocate community. Until such time as these issues are addressed, ASAN strongly urges opposition to H.R. 4631.
What Can I Do?
1) Contact Your Member of Congress and Urge Them To Oppose H.R. 4631. You can reach your Representative by calling the Capitol Switchboard at (202) 224-3121 or by using this phone tool from the Arc of Maryland.
2) Tweet to your Representative why you oppose H.R. 4631 – use the hashtag #StopCombatingMe to help build momentum for our campaign.
3) If you belong to an advocacy organization, contact ASAN about signing on to our joint letter opposing H.R. 4631 by e-mailing Samantha Crane, ASAN’s Director of Public Policy, at scrane@autisticadvocacy.org