By Jill Escher, president, Autism Society San Francisco Bay Area
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 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.
Theme One: "Lumpers v Splitters"
Authors Caren Zucker and John Donvan with Sesame Street's spectrum kid Julia
Both in official sessions, and outside in the corridors, the strongest issue to emerge was about the conceptualization of autism itself. The new DSM collapses an array of abnormal neurodevelopment under the term "autism spectrum disorder," but there is growing discontent with this "lumping" moment. In their very fine keynote address, Caren Zucker and John Donvan, authors of the sweeping and informed autism history, "In a Different Key," addressed this debate explicitly, observing that we are currently in a lumping phase, but that "splitting" may be poised to make a comeback.
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.
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.
Theme Two: Boys Growing into Men
 Ryan Wexelblatt, LSW |  Author Susan Senator |  Denise and Matt Resnik of Smile Biscotti |
The most replicated finding in autism research is that boys are diagnosed at about 4x the rate of girls. And now those boys are growing into men, presenting new challenges in terms of things like sex, hygiene, and oh, that little challenge of lifespan care. Ryan Wexelblatt, LSW, gave a superb talk on teaching ASD boys about sexuality, hygiene, self-care, and relationships. You can find Ryan at centerforsocial.com. By the way the fabu animated video Ryan showed, pic is above, is "Smell Check."
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).
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).
Theme Three: Autism Research Has Made Big Strides, ASA has Roots in Citizen Science, and Families Play a Key Role in Advancing Research
 Bernie Rimland, autism's first and foremost "citizen scientist." |  Alycia Halladay, PhD, chief science officer, Autism Science Foundation |
When I "Feel the Bern," I think of Autism Society of America co-founder Bernie Rimland. As I said when I introduced keynote speaker Alycia Halladay, Dr. Rimland was the first and foremost autism "citizen scientist," who in 1964 through a tour de force of logic and reason eviscerated the horrific old scientific dogma that cold parenting caused autism. Read Chapter 3 of his "Infantile Autism" to see what I mean. Citizen Science is now a large part of my work at the Escher Fund for Autism, where I promote research into the genetic toxicology of autism. So I was very pleased to co-present with Alycia, Chief Science Officer at Autism Science Foundation, on the Importance of Citizen Science in Advancing Autism Research. More importantly, Alycia delivered a fine keynote summarizing the state of the science, emphasizing that much work remains to be done in gene-environment interaction, understanding neurobiological deficits, understanding females and the female protective effect, and potential treatments to address the debilitating symptoms of autism. Speaking of science, three staff from the Centers for Disease Control presented on their autism surveillance and education programs. To them environment is clearly a contributor to the increase in autism, though the drivers remain to be understood.
Theme Four: Parents of Kids with Severe Autism Feel Marginalized
 Parents on the "Low Functioning Autism" panel |  Keynote address by NeuroTribes author Steve Silberman |
In the foyer Autism Society was selling cheerful "I'm Unique" T-shirts, while in the quiet of a nearby meeting room, parents tearfully shared horror stories of life with their severely autistic children in their session "Low Functioning, A Bad Word? Let's Discuss the Population Typically Not Talked About." The parents, who had suffered so much and fought so hard for their disabled children, felt marginalized by pressures of political correctness and the language police pushing to sugarcoat autism. For these families, there was no relief from constant chaos and strain until they were able to place their children, now grown, in group homes. The children are happier in their new placements, too. Reflecting the "two worlds" of autism, the closing keynote featured Steve Silberman, author of NeuroTribes, a book that relentlessly trivializes autism and in fact preposterously denies any true increase in the disorder (see my book review). Notably, his panel of people on the spectrum omitted anyone like those discussed in the session the day before.
In closing, all in all this was an excellent conference and I commend Autism Society of America for hosting it. It was clearly a Herculean effort, and kudos all around. I also welcome the warm, wonderful, and dedicated Joe Joyce as the new chair of the ASA board.
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