By Katie Wright
I apologize to Ms. Susan Daniels, the Communications Director of NIH’s autism research programs. In the past I have been critical of IACC’s transparency regarding access to public meetings. The situation has greatly improved so thank you Ms. Daniels. I appreciate the fact that IACC meetings are quickly archived and available for viewing any time. The meeting agendas, slides, list of speakers are also publicly accessible for downloading. The e-mail reminders regarding upcoming dates and times of meetings are very helpful as well.
So many autism meetings remain inaccessible to the public and involve only token stakeholder representation. The NIEHS’s recent environmental science meeting has not been archived on their site nor have they made the DVD available for public viewing elsewhere. In September the NIH and Canadian NIH and Autism Speaks sponsored a conference entitled “Translating Genetic Discoveries into Diagnostics.” Once again this meeting was not publicized, webcast or archived for public viewing. What stakeholders were involved, if any? Were family member allowed participate or just serve as audience members? Were representatives from national autism service/ research organizations, such as the NAA, SafeMinds, Generation Rescue and the Autism Society of America invited?
I hear so much talk, talk, talk about how important stakeholder input is but how about “translating” those promises into actual action. “Translating” needs to start at home.
Scientific organizations must prioritize community wide (press releases on all organization websites, Schafer Report, placing an ad on AoA or other community online newspapers…) notification of meetings, create archived webcasts and energetically pursue public comment. We also really need to see some federal autism meetings outside of the DC area! If stakeholders can travel to IACC or NIEHS, why shouldn’t IACC travel to NYC or LA once or twice and hear from the families in the big cities?
This IACC meeting started with a great lecture by the Assistant Director of Special Education for the U.S. Dept. Of Education. Dr. Alex Posny spoke about service, gaps, access issues and priorities. Dr. Posny brought a great deal enthusiasm and energy to the discussion. It was nice to see a federal employee who really feels a sense of urgency.
The next presenters were Lori MacIlwain and Wendy Fornier of the National Autism Association. Lori and Wendy spoke about the AWAARE program, which is dedicated to preventing and stopping the wandering deaths of ASD children. Lori and Wendy are mothers of children with autism. Most children with autism are impulsive and have little to no appreciation for danger. Despite a parent’s best efforts to watch their children every moment of the day and night, many ASD children will find a way to wander. Most ASD children have no physical disabilities; they run, run fast and sometimes don’t stop running until someone catches them.
Thank you Wendy, Lori and the incredibly brave Sheila Medlam for detailing the safety needs of our kids. These three Moms articulated how and why traditional search procedures are ineffective for children affected by ASD. Nonverbal ASD children cannot respond when they hear their name being called yet may be lost very close to their home. Wendy and Lori emphasized and how cost effective tracking devices are yet most families lack access to such devices.
Dr. Dawson of AS stated that wandering problems must be addressed immediately by IACC and that AS fully collaborates in the AWAARE program. Dawson expressed her incomprehension tracking devices are widely available for pets in needs but not ASD children. Ellen Blackwell stated that relevant Medicaid safety programs are already in place. Alison Singer and Lyn Redwood countered that Medicaid’s efforts are not working and that ASD families sometimes endure years of delays trying to access help from Medicaid.
I am going to end with a synopsis of the Yale presentation. I really, really wanted to like Dr. Kevin Pelphery’s work. He has 2 children on the spectrum (which I am guessing now probably means HF). Pelphery spoke for almost 15 minutes about eye tracking, the social brain and social perception. I kept think why? Why? Why? Why would a parent of an autistic child see this subject matter as innovative or an urgent scientific priority?
I learned nothing I did not already know and I learned nothing that would help children living now with autism. There was no insight into causation factors or treatment. If we are not addressing one of those two problems such research is an academic luxury we can ill afford. Yes, yes always the sales pitch that eye tracking technology will help detect autism early. But I have a radical idea. How about we use our old school technology- specifically our own 2 eyes and look for signs of poor eye contact in babies on our own? No expensive machinery necessary! All right, now we are saving money!
This is exactly why I loved the DoD research experience. They place a premium on innovative and emerging areas of impactful research. Let’s move with the times IACC! No more eye tracking part 27 or baby sibling part 45. IACC and the NIH need to put their money where their mouth is and start investing in the treatment and environmental research they talk, talk, talk so much about but never seem to get around to funding.
IACC Part 2 will cover a presentation on the genome, bizarre incompetence on the part of the NIEHS, and a fascinating but sad discussion about the Somali autism cluster in Minneapolis.
Katie Wright is Contributing Editor for Age of Autism.
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