IAN Report: National Town Hall Meeting Focuses on Adults on the Autism Spectrumby Connie Anderson, Ph.D.
On November 13, 2009, I attended the Advancing Futures for Adults with Autism (AFAA) National Town Hall Meeting. Although the core site for the event was in Chicago, participants in sixteen cities were linked together by the newest in remote meeting technology. I had registered to participate at the Washington, D.C. site, located in a conference room at the local CBS station. The atmosphere in D.C. was charged with excitement. I traveled to the meeting with an adult with autism spectrum disorder (ASD), as well as with parents of adults from my local Autism Society of America chapter. When we arrived, none of us was exactly sure how the meeting would work, but we were sure of one thing: We, together with hundreds of people across the country, were going to try to come to some consensus about what is needed to increase the independence and quality of life of adults on the autism spectrum in the United States. At this point, nothing has been organized for adults with autism spectrum disorders on a national level. These were to be our first collective steps in that direction. The meeting’s scope and design were incredible. Each participant across the country was assigned to a table with 8 or 9 other people. Each table had a note taker, typing furiously on his or her laptop and submitting the table’s ideas and feedback to Chicago. As each issue came up, a “theme team” in Chicago distilled the ideas and priorities coming in from around the country into key points. Each person had a wireless voting device, so people across the country could cast their ballot on an issue instantaneously, sharing their opinion about how to prioritize the many pressing needs. The entire set up was an impressive display of democracy in action, live and in real time. Although topics had been laid down for the table discussions, many new topics were introduced by the participants. For example, it was suggested that helping people with ASD develop and maintain friendships or other relationships was as important as helping them cope with challenges in the work place. At the end of the day, detailed lists of the most urgent needs identified were generated, together with a list of overall priorities, as follows: Cross Cutting Strategies
Housing Strategies
Employment Strategies
Community Life Strategies
Learn more about the AFAA National Town Hall. Read the AFAA National Town Hall Preliminary Report. While I was attending this event, I spoke about the crucial role the IAN Project can play as adults with ASD and their advocates organize to improve the situation for adults on the spectrum. To fight for policy change, data will be needed. (Imagine standing before Congress saying, “We know from what people say that adults with ASD are failing in the work place” vs. having graphs, charts, and data that provide evidence that this is a problem. Evidence-based information makes a much stronger case.) IAN already has an online data collection system in place, so this investment has already been made. Now, our main challenge is to inform adults with ASD, their caregivers, supporters, and providers about IAN Research – the nation’s largest online autism research project – and to encourage participation. We have already developed general adult-focused questionnaires. It will be fairly straightforward to design and deploy topic specific questionnaires on employment, healthcare, or any of a number of crucial topics in support of those trying to inform lawmakers of the needs of adults on the autism spectrum. Learn how adults with ASD (or their guardians) can participate in IAN Research. |
