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Response to Autism Speaks’ AFAA Report

The recently issued report by the Advancing Futures for Adults with Autism (AFAA) project, a collaborative effort of Autism Speaks and several other organizations, has made recommendations for improving adult supports and services in a number of ways. However, recommendations are useful only when there is adequate funding to back them up. The Autistic Self Advocacy Network (ASAN) accordingly calls on Autism Speaks and other major autism research organizations to demonstrate their commitment to making available adult supports and services by reallocating the bulk of their grant funds to service provision, quality of life research, cognitive research, and other areas of research that could result in better supports, services, and education. One of the few studies of this nature that Autism Speaks has funded, the Soulières et al. (2009) study on enhanced visual processing, demonstrates how more scientific knowledge about the cognitive and perceptual strengths of Autistics could lead to more appropriate educational methods.

Autism Speaks and other research organizations have for many years emphasized genetic studies, which have potential eugenic implications, at the expense of vastly underfunding studies that could lead to improved community supports and services. Moreover, few efforts have been made to include Autistic self-advocates in meaningful roles when determining what services are needed and how best to provide them. ASAN urges autism research organizations to fund studies that use the Community Based Participatory Research model, which involves all concerned stakeholders equally in the research process.

The inclusion of Autistic self-advocates as equal partners in autism research projects is vital not only to accurately identify the needs of Autistic adults, but also to ensure proper respect for our culture and community. For example, Autistic self-advocates repeatedly have objected to the use of misleading alarmist rhetoric that compares the existence of Autistic people to cancer, AIDS, tsunamis, and other fatal diseases and disasters. However, the AFAA report contains several of these inappropriate analogies. This could easily have been avoided if sufficient efforts had been made to include Autistic self-advocates in the AFAA project.

The report suggests “helping adults with autism learn to advocate for themselves.” Given Autism Speaks’ history of excluding Autistic individuals from decision-making positions within its organization, if it genuinely wants to enable self-advocates to have input into policy decisions affecting the lives of Autistics, it should begin by reforming its organizational structure to ensure that the concerns of self-advocates are represented in meaningful ways. Autistics already are advocating on our own behalf… it’s time for Autism Speaks to listen to us.

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