Friday, May 8, 2009

Testimony at IACC meeting May 4, 2009

Paula C. Durbin-Westby

May 4, 2009

[Sentences in square brackets are for clarification purposes and were not spoken.]

Thank you for the opportunity to speak today.

You may now have two people who are interested in summarizing the 120 scientific studies mentioned earlier. [in reference to only 6 IACC members submitting comments on hundreds of scientific studies up for review].

Augmentative and Alternative Communication:

It is gratifying to see that the IACC is addressing the critical issue of Augmentative and Alternative Communication.

Now it is time to allocate funding to AAC research. Including a presentation about AAC is an important but preliminary step.

Since communication difficulties are experienced by many 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.

Because of the extreme disparity between services/quality of life funding and the funding of basic research, funding for AAC should be diverted from the millions of dollars allocated to genetic and treatment research and NOT drawn from the already minimal funding for service-related research.

Community-Based Participatory Research:

I recommend using a community-based participatory research model for AAC and other research. Rather than being “grown-up children” as far as research is concerned, autistic adults must be included as collaborators in research, for both practical and ethical reasons. The community-based participatory research paradigm is one model; others may be developed and utilized. [“grown-up children” in reference to comment made by Susan Swedo about the role of autistic adults in research studies.]

One likely outcome of including people on the autism spectrum as collaborators and co-researchers is that the research will be made more relevant to the lives of people on the autism spectrum, including not only adults but children as well.

Just one example from a current research area is that of eye contact research. It has been recently discovered that autistic children look at mouths more than at eyes. Although this is an exciting new discovery for researchers and others, it is not necessarily news to people on the autism spectrum, who are often aware of the reasons and motivation for our own actions.

In addition, studies have already been undertaken that show that typically-developing children also use multi-modal perception to process their experiences.

It has been suggested that some sort of retraining could be done to direct children to not look at mouths but at eyes. The theory is that by looking at mouths children, and presumably adults who do not make much eye contact, are missing important social cues… and that we don’t make use of our peripheral vision.

While it is critical to understand the underlying mechanisms for human communications and processes, the design and application of scientific theories, especially when young children are involved, should have participation, input, and oversight from people on the autism spectrum.

Researchers should take into consideration the numerous self-reports of people on the autism spectrum about the necessity of looking at people’s mouths in order to compensate for auditory processing difficulties, among other reasons. Including co-researchers who are on the autism spectrum can positively inform research so that time and taxpayer money are not wasted and so that studies involving autistic children as subjects do not cause additional difficulties when children are retrained to look away from mouths and possibly lose a significant visual method of accessing receptive communication. Audio-visual synchronies are important not just because they are early indicators of autism but because they are a critical component in how we make sense of communication inputs.

Language Use:

Once again, a chronic or fatal disease model or metaphor is not appropriate for autism. Autism is not fatal like cancer, and, as an autistic person with kidney disease, I can tell you that they are not comparable. The IACC must promote appropriate language to reduce myth-making and stigma. [reference to comments comparing autism to cancer and kidney disease.]

Autistic self-advocate organization as public member:

The time has come for the Interagency Autism Coordinating Committee to include representation from autistic self-advocacy organizations such as the Autistic Self Advocacy Network, which has had a representative at all but one of the IACCC meetings since November 2007. Autistic self-advocacy organizations are an increasingly recognized stakeholder in autism policymaking and should not be purposely excluded from the Committee that makes decisions about federal funding for research. The public law that created the current IACC has been in place since 2006/2007. The newly founded Autism Science Foundation has is represented, if not officially [by Alison Singer, president of that organization] but still no representative from a major autistic self-advocacy organization has been named to the committee. Adding a public member from an autistic self-advocate organization will begin to redress the existing imbalance in parity, and add a much-needed dimension of focus on research and policy that will benefit people on the autism spectrum across our lifespans.

This will enable research into AAC, eye contact, and other areas, to move from the “promising practice” realm to a best-practice reality.


1. R000239930- Benefits of Averting Gaze and Cues to Comprehension. Doherty-Sneddon, Gwyneth.

2. Read My Lips: Using Multiple Senses in Speech Perception. Rosenblum, Lawrence D. Current Directions in Psychological Science

3. YouTube video on multi-modal processing:

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