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Delivering ‘Real World’ Science at Autism Speaks National Conference

Posted by Autism Speaks Vice President for Clinical Programs Clara Lajonchere. Dr. Lajonchere was the chair of the organizing committee for Autism Speaks’ 2013 National Conference for Families and Professionals, held in Columbus, Ohio, this past weekend.

 

Even while I’m recovering from the jetlag, it’s a pleasure to reflect on the enthusiastic response to this past weekend’s national conference. First, we were thrilled to be welcoming more than 400 parents, professionals and self-advocates – all of them hungry for information and discussion.

As I was facilitating sessions from morning till night, some of my best opportunities to talk with participants came after the conference – at the Columbus airport. There, one person after another approached me to say “this was the most amazing conference I’ve been to in my life.” And I know how many conferences many of these parents and professionals attend!

I talked with families that were beyond grateful for the practical tools they gained from our hands-on workshops. This year, they said, even the science sessions stood out in their practicality. Among their favorites was David Miller’s science session “Genetics for the Real World,” which included an extended question and answer period.

For the first time, many parents said, they understood how genetic testing can help guide their children’s treatment. You can imagine how happy I was to hear the same thing from doctors. After all, this is the mission of the Autism Speaks Autism Treatment Network (AS-ATN) – to raise the standard of autism care beyond its 17 centers across North America.

I knew we had hit a sweet spot when I heard doctors say they were “riveted” by the same presentations that were such a hit with parents.

This was particularly true about the sessions and workshops that reflected this year’s emphasis on the transition to adulthood. On the medical side, we had physician Susan Conners, of Boston’s Lurie Center for Autism, discussing the key steps to planning adolescent and adult care. On the psycho-social side, developmental psychologist Julie Taylor led a science session on preparing for a successful adulthood. (Also see Dr. Taylor’s video blog here.)

I particularly appreciated the self-advocates who approached me with offers to help craft and design transition and adult medical services. They want to be involved, and we want their input. One young woman, for example, wants to help improve the emergency room experience for those with autism. It’s awesome to have this engagement.

In integrating feedback from last year’s conference, we also had many more booths and exhibitors at this year’s conference. They included local Ohio organizations as well as groups from across country. The founder of Talking About Curing Autism (TACA), for example, traveled from California to join us. In addition to being an exhibitor, she became an engaging part of many question and answer sessions.

In closing, I want to extend my personal thanks to all the parents, providers and self-advocates who talked with me during and after the conference. More kudos go to the tremendous team of people who’ve been working for a full year to make this conference a success.

We hope many more of you can join us next year!

Editor’s note: Complete coverage of Autism Speaks 2013 National Conference for Families and Professionals – including video blogs by presenters and parents – can be found here.

The Autism Speaks National Conference for Families and Professionals was made possible by the passion of Autism Speaks’ community of families, volunteers and donors. It received additional support through the AS-ATN’s role as the Autism Intervention Research Network on Physical Health (AIR-P), a federally funded program of the Health Resources and Services Administration.