What will happen to my loved ones with autism when they are adults and I am dead? Where will they live? How will they work? Who will be their friend? Will they be happy and safe? Who will fight for them?
Last Friday, twenty-first century technology facilitated finding answers to twenty-first century questions. Autism’s vast increase in the past two decades has produced an urgent need for a national plan. In the last ten years, autism has increased 15-25 fold. The poster children are growing up, and need specialized supports and services that practically don’t exist.
A technologically advanced, interactive consortium met to define and shape policies addressing the unique needs of adults with autism. The Advancing Futures for Adults with Autism (AFAA) National Town Hall was held across the United States at 16 satellite sites, including Extraordinary Ventures, Inc. in Chapel Hill, North Carolina. The site was sponsored by Extraordinary Ventures, the Autism Society of North Carolina and Division TEACCH.
Produced by America Speaks, the all-day event facilitated discussion among more than 1,000 attendees to prioritize a list of preset strategies taken from a think tank. The final report will be available online in January 2010, with recommendations for an Autism Congress.
Individuals, parents, professionals, and lawmakers active with the adult autism community attended. Members sitting at my assigned table included original autism advocate Betty Camp, a residential service provider, a university Dean of Students volunteering as Facilitator, State Representative Verla Insko, Dr. Rob Christian of Carolina Institute for Developmental Disabilities, an Applied Behavior Analyst, a local management agency, and parents of adult children committed to community programs such as Extraordinary Ventures and Voices Together.
As we deliberated, submitted feedback, and voted our way through the day (no breaks) with laptops and credit card-sized touch pads, I couldn’t ignore a nagging sense of unrest. We have a technologically advanced society spending it’s technologically enhanced dollars to chew over the best way to do the most simple of human acts: caring for those who need help.
All the strategies put on the virtual table were certainly valid. The overall priority is how to convince federal, state, and local legislators to get involved and fund what is needed for adults with autism. Here’s our real test: Will our efforts make decision-makers open the wallet? How will we persuade that people matter first? Should we slickly market some sort of a National Autism Lottery to fund programs, supports, and services?
In the meantime, I scarfed all the attendees’ sturdy lunch boxes to take to TEACCH for individualized shoebox tasks. Like most who serve autism’s avalanche, their needed funds were also cut. Hopefully, North Carolina residents will continue to have the opportunity to “learn how to learn”. But without a major shift in government perception, only a few might be considered ‘lucky’ enough to fill salt and pepper shakers (see photo) for those who can still afford to eat out. Our loved ones deserve better.