I gave these comments at the IACC meeting on April 30, 2010.
April 30, 2010
Thank you for the opportunity to comment. I am Paula Durbin-Westby. I am on the Board of Directors of the Autistic Self Advocacy Network. On behalf of ASAN, I would like to welcome the new members of the Interagency Autism Coordinating Committee.
The Autistic Self Advocacy Network is the leading organization run exclusively by individuals who are on the autism spectrum. We count among our supporters people on the autism spectrum, parents of children, teens and adults on the spectrum, educators, and practicing professionals.
For those new IACC members who are not aware of ASAN’s priorities for the Interagency Autism Coordinating Committee, I am going to list the priorities we have brought to the IACC over the past several years. I do have one item that I am crossing off my list- for now- “Add another autistic individual to the IACC,” one with a point of view emphasizing acceptance of disability and a proactive stance toward services and supports. It is also critical to have people who have a disability to be involved at all levels of policymaking. I am pleased that the IACC has realized the wisdom of adding additional autistic members, and also, as a committee with multiple members on the spectrum, I urge you to adopt strategies that steer away from the language of “burden” and “sadness” and move toward a more positive stance and appropriately objective language.
ASAN’s other priorities are:
Focus funding toward research and practices that will have practical benefit for people on the autism spectrum, our families, friends and communities.
Focus on services for people on the spectrum throughout the lifespan, including adults, underserved populations such as ethnic minorities, women on the spectrum, people who do not use language-based forms of communication, and others.
Redirect research attention toward developing functional communication systems, through developing and making accessible Alternative and Augmentative Communication systems and individualizing communication systems so that each autistic person can have the most accessible means of communicating. As an adjunct to this, make IACC meetings and materials accessible to people with a wide range of disabilities, both physical accommodations, communication differences, intellectual, cognitive, and developmental accommodations.
Focus away from a fixation on “causes” and “cures,” especially when these research focuses, on a variety of genetic/genomic differences, and various biomarkers for autism, have the potential to bring about a eugenics focus, or the selection out of the “gene pool”, of a certain subset of the American population. Keep eugenics out of autism research.
Ethical concerns must be kept foremost and the ethical concerns need not stop with the concern about how to transmit notions of “risk” during pregnancy. Ethical issues should also be addressed when researching medical and pharmaceutical treatments may, behavioral interventions, also often known by a simpler term- education-, that, without careful consideration of unintended consequences, be physically, psychologically, or emotionally harmful to the individuals receiving these treatments. All such research and subsequent practice must be rigorously monitored so that the health and well-being of the individual person on the autism spectrum is the first priority. In some cases, as Ari pointed out during the DSM-5 discussion, treatments and interventions will be contraindicated. In others, respectful and thoughtful strategies can be used. [note: There was a presentation by Susan Swedo of the DSM-5 Working Group earlier in the day]
Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.
In closing, I am going to quote from Ari Ne’eman’s testimony at the November 30, 2007 IACC meeting. “We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.”