Note: This is the second part of a feature that began yesterday on the Public Library of Science. The introduction to both parts is identical.
It’s been almost four years since I began work researching and reporting on autism. The bulk of that work was focused on my book The Panic Virus, which examines the spurious fears over a connection between vaccines and autism. (There’s more information about the book, including a summary and links to reviews, on my website.)The Panic Virus was released in hardcover last January, and over the past twelve months, I’ve learned enough — about human nature, about fears and prejudices, about rationality and superstition and medical ethics and public health — to write several more books. (I’ve also learned first-hand about the anxiety and uncertainty that comes with being a parent: In December, my wife gave birth to our second child.) I incorporated a very small amount of this new information into an afterword that is included in the paperback edition, which was released a few weeks ago.
One thing I did not get to address is how dramatically my own conception of autism has evolved. Human beings have a fundamental need to classify and label; it’s one of the most basic ways we make sense of the world around us. Because “autism” is a medical diagnosis, it might seem, at first blush, to be an immutable definition — but as anyone who has looked at the issue knows, this is most definitely not the case. Just last week, The New York Times made a huge splash with a front-page story detailing how changes in the “official” definition of autism in an upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) could dramatically reduce the number of people being diagnosed with autism or “autism spectrum disorders” like Aspergers syndrome.
I asked some of the people who’ve influenced my thinking about all of these issues to collaborate on a virtual roundtable. This conversation, which took place before the Times story on the DSM, is open-ended and free-ranging.The participants, in alphabetical order:
Shannon Des Roches Rosa — Shannon is one of the powerhouses behind the invaluable website The Thinking Person’s Guide to Autism; last month, Shannon and her collaborators released an incredible book by the same name.
Todd Drezner — Todd is a New York filmmaker whose most recent work is Loving Lampposts, an incredible documentary about his son. You can see a trailer for the movie, read reviews, and learn more about the film on its website.
John Elder Robison — John is a bestselling author who has written two excellent memoirs about living with Aspergers: Look Me In the Eye and Be Different.
Ari Ne’eman — Ari is an autism rights advocate and the co-founder of the Autistic Self Advocacy Network (ASAN). In 2009, President Obama appointed him to the National Council on Disability; he is the first person on the autism spectrum to serve on the Council. The ASAN is currently working on publishing it’s “first and foundational” anthology, which will be titled Loud Hands: Autistic People, Speaking.
Steve Silberman — In addition to being one of the country’s best science writers, Steve is one of my all-time favorite people. (He also shares my love of the Grateful Dead and has his own PLoS blog, NeuroTribes.) He’s currently working on a book about the history of the autism diagnosis and neurodiversity.
What follows below is the second half of a lightly edited transcript of our conversation; the first half can be found here, on my blog at the Public Library of Science.
Ari: Please do excuse my delay, Seth – I’ve just finished attending the National Disability Leadership Alliance’s Annual Planning Retreat. NDLA is a very unique version of something that is very common in Washington, DC – it is an advocacy coalition of national organizations which lobby to influence public policy, with a twist: it is controlled by a Steering Committee limited to national groups run by and for people with disabilities. ASAN serves alongside groups like the National Federation of the Blind, Little People of America, the National Association of the Deaf, the American Association of People with Disabilities and many others. Participating in NDLA is frequently a great opportunity to learn something new from those with backgrounds different from oneself – but more often than not, it gives one a chance to learn about how similar the experiences of people with different disabilities are.
Looking around the table during our two day discussion, we heard people talking about a shared narrative of marginalization, segregation and exclusion from the mainstream of American life. Whether it was ADAPT’s work fighting against institutionalization, the National Federation of the Blind’s work to ensure accessibility in consumer devices such as the Kindle and iPhone, Little People of America’s effort to fight against the repeal of Florida’s ban on dwarf-tossing or our own activities on topics like community participation in research, we felt like there was a common thread going across all of our issues. On topics like closing sheltered workshops and enhancing employment opportunities, we could all mobilize confident that every organization had a stake in the outcome – but what is exciting to me is that we are seeing a growing consensus that we can mobilize even on topics that impact only one part of the community.
When ASAN was running our campaign against the NYU Child Study Center’s Ransom Notes ads, I’ll always remember calling up Bob Kafka, one of ADAPT’s lead organizers, to ask him for the organization’s support. I had never spoken to him before and wasn’t sure how likely it was we’d get support from a group with such a long and illustrious history, given that we were at the time largely unknown. I briefly explained what was happening – we were a small group of Autistic adults agitating against a public relations campaign by NYU, a major research university, that depicted autistic children and those with other disabilities as kidnap victims, objects of pity and disgust. Before I could launch into our pre-written script about why this was a problem, Bob cut me off – “We know all about that sort of thing. They do this to us all the time – you’re an organization run by people with disabilities, and you’re fighting for the same things we fight for. You’ll have our support.” And, we did – on that and any number of other controversial topics emerging from the autism world, ranging from our work against Autism Speaks to battling against CDC’s proposed wandering code, groups like NCIL, ADAPT, AAPD and many others stood beside us, even when others in the autism community wouldn’t.
I’m raising this not just because I’m a big believer in cross-disability solidarity – though I am. I bring it up because I think we have a tremendous amount to learn from the larger disability world, and I fear this is something that autism does not do a very good job of. No one who had absorbed the lessons of Willowbrook and Pennhurst would think it was a good idea to build special “Gated Communities” to house autistic adults and others with intellectual and developmental disabilities. No one who knows the history of the Jerry Lewis telethon and the objections made by people with muscular dystrophy to being portrayed as pitiful, “half-people” by its star would ever conceive of something like the “I Am Autism” video. No one who knew the names Ed Roberts, Judy Heumann or Justin Dart and the history of all they accomplished for people with disabilities would ever doubt the meaning and importance of self-advocacy by and for us, instead of on our behalf. Yet, these are not things we think about or have even heard of in the autism world.
Let me close by posing a question to the rest of you: What ambitious goal do you think we could set for the autism community for the next decade? In the next ten years, if we all get our acts together and decide to learn from the lesson of the larger disability rights community, what change could we make in the lives of Autistic people and our families? Let’s be ambitious – consider how extraordinary the progress of the previous decade has been. At the same time, we can and should be strategic in how we set out to achieve those goals. Change has never happened overnight and it will always face plentiful challenges and detractors. Yet, I believe that if we break free of the narrow context of the autism community’s own “way things are,” we are going to find that together we can achieve extraordinary things. Todd, John, Seth, Shannon, Steve, what do you think they might be?
Shannon: Seth, in terms of how better autism awareness and information trickle into my family’s personal experience: the knee-jerk pity reactions are less common. But then I am … proactive in promoting the amazingness that is my son to the farthest reaches of our community and the Internet; I rarely give anyone the chance to act on negative autism assumptions.
I find people better informed about autism as a spectrum; they tend to ask questions about what Leo has in common with Temple Grandin or Mr. Robison or Mr. Ne’eman or Carly Fleischmann, rather than assuming he is Rain Man. And Leo goes to a school where they understand not only autism but *Leo’s* kind of autism. We’re very lucky, our boy is pleasantly cocooned.
But I keep coming across articles like Jo Ashline’s recent story in the Orange County Register “Outgrowing Andrew: How Autism Forced My Son to Stay Behind.” The same autism resources I found were available to Ms. Ashline. I wonder if she would feel the same need to mourn her autistic son’s development compared to that of his neurotypical peers had she access a resource like TPGA or Steve’s forthcoming book on neurodiversity and autism. (As an aside, we posted Ms. Ashline’s story on TPGA’s Facebook page and asked folks to go leave her thoughtful, positive comments — her responses were equally thoughtful rather than defensive.”) I have also witnessed NT people turn patronizing in the middle of a perfectly mundane conversation upon discovering they are talking with an Autistic.
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