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.

REFERENCES:

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

http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Plain_English_Summaries/knowledge_communication_learning/knowledge/index405.aspx?ComponentId=9673&SourcePageId=11764

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

http://www.eurekalert.org/pub_releases/2009-02/afps-rml021109.php

3. YouTube video on multi-modal processing:

http://www.youtube.com/watch?v=jtsfidRq2tw

Listen to the Real Experts

Here is a link to an article on ASAN's Public Service Announcement produced with the Dan Marino Foundation.

The article is by columnist Valerie Brew-Parrish.

http://www.suburbanchicagonews.com/heraldnews/lifestyles/parrish/1555581,4_4_JO03_PARRISH_S1.article#Comments_Container

CCA petition on change.org

http://www.change.org/autisticadvocacy/actions/view/pass_the_community_choice_act_with_comprehensive_health_care_reform

Today is CCA day. Please support cross-disability efforts and sign the petition if you have not already.

The Autistic Community Mourns the Passing of Alyric

The Autistic Community Mourns the Passing of Alyric, a long-time activist and supporter of autistic rights and neurodiversity. She passed away on April 18, 2009, after a long and courageous battle with cancer. Her blog A Touch of Alyricism will remain intact. With her incisive commentary, Alyric was unwavering in her commitment to defend the rights of autistics to respect, honesty and accuracy in science and reporting, and was unafraid to take a strong stand about issues she believed in. Alyric touched many lives. She was always ready to help advocates with research, support, and encouragement. She was a well-respected advocate who made profoundly important and meaningful contributions to our community. We will miss her vibrant presence. Several bloggers have posted tributes to Alyric; here is one that describes her advocacy efforts in more detail.

End the Hate: Petition to Tony Attwood and Isabelle Hénault

A petition created by the Autistic Self Advocacy Network is asking clinical psychologists Dr. Tony Attwood and Dr. Isabelle Hénault to stop giving their support to hate groups such as FAAAS and ASPIA that portray Autistics and people with neurological disabilities as violent by nature and abusive toward family members. In promoting the pseudoscientific concept of Cassandra Affective Deprivation Disorder, which is a completely groundless claim that being involved in a relationship with an Autistic person causes depression and other psychological harm, these groups seek to encourage discrimination against Autistic people in family law and relationships. Stereotypes and falsehoods like these can cause people with disabilities to face discrimination in divorce and child custody matters and, in some cases, to be denied their parental rights. Drs. Attwood and Hénault are closely associated with FAAAS through their membership on its Professional Advisory Panel and regular presentations at its conferences, and they recently presented at a conference sponsored by ASPIA.

Please join us in signing this petition to help secure the rights of all people to be treated equally under the law. E-mails can also be sent directly to tony@tonyattwood.com.au for Dr. Attwood and to ihenault@internet.uqam.ca for Dr. Hénault. ASAN President Ari Ne'eman has issued a statement to the community asking for support and signatures on the petition to Dr. Tony Attwood and Dr. Isabelle Hénault. It's time to end the hate!

ASAN Group for Autistic Teens

The Autistic Self Advocacy Network has created a new online group for autistic teenagers and would like to invite interested people to participate. More details below:

A new yahoo group has been created exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. The group is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.

Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.

The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.

To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.

Please pass this information along to any adolescents and teens you know who would be interested!

No Myths Autism PSA: A Different Kind of Autism Awareness

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA.




Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao

Go to http://www.nomyths.org/ to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).

About the Public Service Announcement:

The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.

The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.

"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530