IACC

Information about Services Needed: Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports. Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues.

Augmentative and Alternative Communication: Since communication difficulties are experienced by many, if not most, people on the autism spectrum, funding research in this area should be a high priority. Advances in communication technology, and the development of AAC options that are affordable, will have a practical application to the lives of people on the autism spectrum, throughout the entire lifespan.

Shift in Focus Recommended: Research should address the domains measured by the World Health Organization Quality of Life Instrument. The research agenda should respect the wishes of autistic individuals and their families, many of whom have written in response to Requests for Information.

Causation and Cure Focus Excessive: These priorities are 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.

The IACC’s mandate is broader than scientific research. Access to services and supports, safety improvements, and research across the lifespan are significant issues.

Expanding Focus on Whole Individual: While NIMH and the IACC are obviously not first and foremost service-delivery organizations, the goal of all scientific research into any disabling conditions should ultimately be the application of that research to real-life situations in ways that directly benefit the subjects of that research.

The Autistic Self Advocacy Network and several other disability rights organizations submitted a joint comment calling for the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation.

Advantages of Community-Based Participatory Research: 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.

Communication and Quality of Life Research Should Be Prioritized: The media portray the autism spectrum as something new only existing amongst children. Yet, the adult population continues to lack needed support and awareness.