I recently returned from New Orleans where I spent several busy days at the annual Autism Society of America conference. Since few people from the Bay Area were able to make it to this festive and well-organized event I thought I would share some take-aways. But please understand, given that I was only able to attend a sliver of all the breakout sessions (not to mention all the time I spent passed out on Bourbon Street, just kidding), this blog should be seen as reflecting my own impressions and not as a comprehensive summary.
I and many other attendees with whom I spoke were certainly in the "splitting" camp. Autism has degenerated into a philosophy and personality identification rather than as the serious mental pathology. When just about anyone with a quirky or acerbic personality can be placed in the same simplistic diagnostic category as my catastrophically disabled nonverbal children, we have a scientific, moral, and practical problem.
The author and all-around fabulous gal Susan Senator is now mom to a young man with autism, and she described her ever-evolving journey, gave tips, and discussed her new book "Autism Adulthood." I loved when Susan said her plan was "to become a ghost" to always be present to protect her extremely vulnerable son. Most families I know are in a state of mild to extreme panic about their children's futures, and indeed much of the talk at the conference was about the abominable waitlists for adult developmental disability services. Though Susan could offer no magic bullets, she promoted strong planning and advocacy to help cocoon your child with support after you're gone.
Autism mom rockstar Denise Resnik and her son Matt, presented on SMILE Biscotti, as an example of a work enterprise parents can help invent for their ASD adult children. Though Matt clearly needs abundant support to make his work a reality, it nevertheless provides purpose, meaning, and very yummy fun to his adult life. We have much to learn from the amazing Resnik family. Learn more about their entrepreneurial venture at smilebiscotti.com.
Another session on an autism housing project in Pennsylvania, where there is a 6,000 person waitlist for services, highlighted barriers of community opposition and logistical hurdles (not to mention the staggering price tag).