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Comments at May 12, 2008 IACC Meeting

Members of the committee:

My name is Paula Durbin-Westby. I am representing The Autistic Self Advocacy Network, a volunteer-run nonprofit organization run by and for autistic people, dedicated to advancing advocacy and support for the autism spectrum. ASAN urges research directed toward quality of life in areas such as service delivery, education and support services.

I spoke at the March 14 meeting about the need for research models that include autistic people at every level of the project. As I mentioned at that meeting, community-based participatory research is a promising avenue for exploration. With community-based research, members of the community being studied are full participants at every stage of the research process.

Funding should be allocated to research that will have practical applications for autistic people and our families. Since I last spoke to you, I have learned of a promising new project that exemplifies how the academic and autistic communities can partner together to conduct research to improve the lives of autistics.

AASPIRE is the Academic Autistic Spectrum Partnership in Research and Education. The partnership adheres to the principles of community-based participatory research. http://aaspire.org

The mission of AASPIRE is:

To encourage the inclusion of autistic people in matters that directly affect them.
To include autistic people as equal partners in research about autism.
To answer research questions that are considered relevant by the autistic community.
To use research findings to effect positive change for people on the autism spectrum.

AASPIRE team members come from three interrelated communities:

The autistic adult community
The academic community, and
The support and service community

The autistic community partner is The Autistic Self Advocacy Network. Academic partners include health services, disability, and autism researchers from multiple institutions. Team members from all three communities work as equal partners to design, implement, and disseminate the research. The inclusion of autistic individuals in all phases of the project ensures that the research is relevant to the autistic community, that the methods are feasible and respect the rights of autistic adults, that the questions are clear, that the conclusions are valid, and that the findings will be used directly to benefit the autistic community.

A strong literature exists documenting health care disparities for people with developmental and intellectual disabilities including increased mortality, increased morbidity, and lower quality of life. AASPIRE is currently undertaking an initial pilot project to address these disparities.

The first pilot project will examine the experiences and recommendations of autistic adults as consumers of health care, and the experiences and recommendations of primary care clinicians as providers of health care services to autistic adults. The project will use a variety of methods to obtain and analyze data, including surveys, semi-structured open-ended interviews, and data-mining of information shared through public online communities.

The purpose is to obtain pilot data for an NIH proposal, to develop and evaluate practical tools that can improve patient-provider communication and make health care more accessible to health care consumers on the autism spectrum.

Using AASPIRE as an example, I urge high-priority funding for studies utilizing community-based participatory research. Results are based in the real-life experiences of people on the autism spectrum and will have practical application.

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