Comments at February 4, 2009 IACC Meeting

The Autistic Self-Advocacy Network would like to take this opportunity to thank members of the Interagency Autism Coordinating Committee for inviting us to present on Ethical Concerns in Autism Research this past November. We applaud the effort the IACC has made so far in developing a Strategic Plan for autism research.

Much remains to be done.

Funding allocation has been skewed in the direction of finding causes and cures. For example, $75 million dollars have been allocated toward just one research initiative, that of identifying animal and cell models in the attempt to find a “cure” for autism. Compare this with a mere $1.6 million for the entire services research area.

Public Law 109-416 has a broader mandate than research into causes and cures. Although the short title, the “Combating Autism Act,” was geared toward obtaining congressional and public support for the act, it is time to take a step back and seriously think about what funding priorities mean to people who are on the autism spectrum, their families and communities. The research agenda should respect the wishes of autistic individuals and their families, many of whom have written in response to Requests for Information. If you look at the sheer volume of comments in response to the December 19, 2007 RFI you see that approximately 90 comments were received on services and related issues, under the treatments section. If we add comments about education, assistive technology, and concerns about the future, the comments number in the hundreds, a sizable percentage of all comments received.

The Autistic Self Advocacy Network recommends a shift in focus to research into areas that will actually help families and individuals on the autism spectrum. Such research should address the domains measured by the World Health Organization Quality of Life Instrument, including, in the area of Independence, mobility, Activities of Daily Living, communication, and employment.

Regarding communications technologies and systems, the Strategic Plan mentions Picture Exchange Communication Systems but does not address other systems. PECS can not adequately represent the entire realm of Augmentative and Alternative Communication/Assistive Technology. The Strategic Plan should recommend funding specific research initiatives into emerging promising communications technologies, both for those with no or little expressive language and for those who do have expressive language but cannot always access it reliably.

Examples of such emerging technologies abound, including Aided Language Stimulation, Storybook Aided Language Stimulation, Natural Aided Language, functional communication training with AAC, and Language Acquisition through Motor Planning (LAMP). Augmentative and Alternative Communication and Assistive Technology allow people on the autism spectrum to use and develop language in ways that are natural to us, even if it is sometimes not oral language. Many of the most popular communications systems have been developed entirely without the input of individuals on the autism spectrum. To develop effective communication tools, autistic individuals must be consulted at all stages of the research, from design, through implementation techniques and evaluation.

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