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Comments at January 14, 2009 IACC Meeting

The autism research agenda has been near-exclusively focused on causation and cure, two priorities out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autism research budget was allocated to services research.

Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan. Such a research agenda would compliment other aspects of federal disability policy, such as de-institutionalization mandated under Olmstead v. L.C., the IDEA and NCLB requirements for evidence- and research-based methodologies, the IDEA “Least Restrictive Environment” right and increased numbers of individuals with disabilities, including the autism spectrum, in the workforce.

We recommend the following:

▪ Require that no less than half of the federal autism research budget across all departments and agencies, including NIH, CDC, HRSA, HHS, DOL and others, be allocated towards services-research.

▪ Pursue a vigorous quality of life autism research agenda focused on issues such as improved service-delivery methodologies, social barriers to full participation and quality of life, effective systems change models, means of effectively and respectfully addressing social, behavioral, emotional and other challenges, empowering communication and other priorities.

▪ Mandate that the Inter-Agency Autism Coordinating Committee include representation from autistic self-advocacy organizations, such as the Autistic Self-Advocacy Network, and that there exist parity between the number of parent, provider and self-advocate representatives in the public membership to the IACC.

▪ Include a specific recognition in the Strategic Plan of the perspectives of autistic adults who do not want to be “cured” of autism and who see severe ethical issues with the cure agenda.

▪ Fund research into Augmentative and Alternative Communication (AAC) options for autistic people across the lifespan, including Assistive Technology, so as to empower all autistic people to meaningfully communicate.

▪ Allocate no less than one third of the federal autism research agenda towards the needs of adults on the autism spectrum, addressing the near total lack of research funding towards the needs of this population to date.

▪Fund Community-Based Participatory Research (CBPR) models including autistic self-advocates as full partners at every stage of the research process, from topic selection to study design and implementation. Look to existing projects as models, such as the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE – http://www.aaspire.org).

▪ Provide for Student Loan Forgiveness for services-related and quality of life/participation-based researchers that is comparable to the loan forgiveness offered for researchers who work on basic science research.

▪ Look to research funded by the National Institute of Disability and Rehabilitation Research (NIDRR) as a model for autism research priorities.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

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