The Autistic Self Advocacy Network takes note of the recently released June 30th, 2015 analysis of autism research funding from the Government Accountability Office. The report, which updates a November 2013 analysis, sheds light on the continued significant gaps in autism research funding priorities, most notably the lack of investment in research pertaining to the service needs of autistic people of all ages and the particular needs of Autistic adults.
GAO’s analysis notes that funding for research on the needs of adults actually declined from 2008 to 2012, reflecting an alarming lack of attention to growing community priorities regarding meeting the needs of adults on the autism spectrum. Not only does adult research continue to remain a low priority for the National Institutes of Health and other key autism research funders, but the area received very little investment as a result of the new autism research dollars made available by the American Recovery and Reinvestment Act which raised funding levels for other autism research areas.
This lack of focus on the service needs of Autistic people and research around Autistic adults represents a long standing problem within federal autism research. In 2010, the most recent year for which data is publicly available, the National Institutes of Health allocated only 2.4% of its autism research budget towards services research and only 1.5% towards the needs of adults. ASAN calls upon NIH and other key research stakeholders to shift research funds to re-balance the autism research agenda.
Autistic Americans deserve a research funding agenda that is aligned with building a better world for autistic people, not one in which we do not exist. Research funding taking place in our name should be allocated with the input and involvement of the Autistic community. In keeping with that, we continue to urge NIH and other research funders to involve autistic adults in grant review and other aspects of the research process, including through the use of Participatory Action Research models.