Note: This is the second part of a feature that began two days ago 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.
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.
So: I'm jubilant about the progress; I remain panicked about the work that still needs doing, and about the world my son will inherit -- and which will likely inherit him. I am grateful that my son has so many allies not just in the autism communities but in the disability communities, as Ari described above -- that reassurance helps me sleep at night. (For a short overview of the American disability rights movement, including several of the folks Ari mentioned above, I suggest watching the recent documentary Lives Worth Living.)
And Ari, to answer your question: Mostly, I'd like to see a real-world infrastructure that combines the strengths of TPGA with ASAN and similar organizations, that brings Autistics and/or everyone who plays a major role in their lives together to provide instant community and facilitate best practices autism learning. Then, ideally, we could devote more energy and resources to beneficial policy and science. I wonder how much more we could achieve, how many more people would get the support they need, if everyone was able to hit the ground running after an autism diagnosis.
John: I was asked how I might change myself to fit in. Many people ask that; one concern is that "changing myself" implies that I pretend to be something I am not. Be assured I believe we should remain true to ourselves. When I mean by changing is that I've learned a lot about what other people tend to expect in common situations, and I have taught myself to act more in line with those expectations. By teaching myself to remember that "Dave has a daughter in college," I can ask about her when I see him instead of immediately launching into whatever was in my mind. Doing so does not compromise my values, and it makes the interaction go better.
In other situations, I have learned to simply keep my mouth shut. As I wrote in Be Different, it's almost always fine to say "you look pretty in blue," but saying, "That red stripe shirt makes you look fat," will almost always cause trouble, even if it's true. Saying the red shirt makes you look great would be false -- but keeping quiet is neutral, and that too helps me fit in far better. Learning to fit in is a million little things like that.
Steve: There has been a tremendous amount of research in the past ten years into potential causal factors for autism. Most of this research has focused on genetics; there have also been studies of potential environmental triggers -- "environment" including the pre-natal environment in the womb, because the more we learn about autism, the more we discover that autistic people are mostly likely "born that way" (to quote Lady Gaga), rather than being "made" autistic by some toxic insult after birth, as many parents understandably fear. A tremendous amount of money has been spent scanning genomes for mutations that may contribute to autism, and those candidates have proliferated as the research has unfolded. Ten years ago, people were talking about the hunt for "the autism gene"; now it's common for researchers to allude to 50 or 100 or more possible genetic risk factors, including so-called de novo mutations -- copy-number variations that arise in the individual, rather than being inherited. In other words, as this research has unfolded, the genetics of autism have become more complex and elusive, rather than simpler. In fact, it's becoming clear that what we call autism is a cluster of many distinct but related conditions with diverse etiologies. It's probably more accurate to speak of "the autisms," as many researchers do now. And the same goes for the search for a "cure" for autism -- though no one should dispute the need to find better ways of treating some of the physical co-morbidities associated with spectrum conditions so autistic people can lead more comfortable lives. Thinking in terms of cure seems not only scientifically naive, but inadvertently insulting to autistic people, who don't wake up in the morning wishing that they don't exist.
Ari is better qualified than I am to talk about the disturbing social implications of genetic research in a world in which nine out of ten fetuses that test positive for Down syndrome are aborted. As someone who respects science and scientists tremendously, I understand both the will to understand such a complex condition and the fear by autistic people that knowledge gained from that research could be misused to prevent autistic children from being born in the future. At the same time, however, I want to point out how little research is funded into ways of helping the millions of autistic people who are already alive to lead happier, healthier, more secure, more productive, and more independent lives. Compared to the bankrolling of genetic research, it's a pittance.
Almost all the parents of autistic kids I've interviewed are terrified about what will happen when they are no longer around to support and advocate for their kids' needs. They have good reason to be. It's not lost on me also that the kids who get the most support now often come from well-to-do families -- the families that can afford the early interventions, the full-time care, the iPads and other devices that help autistic people communicate. The more we learn about the distinctive gifts of the minds of autistic people -- which is the focus of a lot of the research done in the UK, as opposed to the research in the US, which is obsessed with causation -- the more we appreciate that even profoundly disabled people on the spectrum have very rich inner lives. I hope that in the next ten years, both the research and the national dialogue on autism focus more on ways of providing autistic people with the opportunities for education and community living that will enable them to express this inner richness and creativity, rather than having to worry if they're about to be forced into an institution where they will likely be drugged or subjected to physical restraints, shock treatments, or hellish seclusion. Every parent wants their child to be happy, healthy, and safe. We should be focusing more on making that possible for folks on the spectrum. It's a national tragedy that we haven't -- both for autistic people themselves, and for everyone who loves them.
John: We've been talking about medical interventions and genetic research. I agree that most of that work does not offer the promise of benefit to the autistic population living today. However, a steadily increasing amount of our autism research budget is being spent on "softer science," which most assuredly does lead to benefits to today's population. For example, the PEERS work at the University of California or the Unstuck and On Target program at George Washington University are great examples of how we are developing therapies that help people with autism succeed better in daily life. As we put more effort into studies like that we will accomplish two important things: First we help our autistic population. Second, we learn more about our specific differences, which leads to a better understanding of accommodations that may be developed for workplaces, schools, etc. So that sort of work is vital on several fronts.
Todd: Seth, to answer your question from a couple of pages ago, the most interesting interaction I had with a film subject who disagreed with me was with a woman who believes in a vaccine-autism connection. One of the things she was most excited about when she saw the film was that I had used some footage of Paul Offit testifying in a Congressional hearing and saying that he was working with Merck to develop a rotovirus vaccine (this footage was from 1999, I think before the vaccine was on the schedule). The woman from my film said in an email, "We've been saying this for years." In other words, she was excited because she believed Dr. Offit had somehow been trying to hide his work on the vaccine, and I had "caught" him on video.
I told her that I didn't think Offit could hide his work even if he wanted to, and moreover, I was sure he didn't want to. On the contrary, he told me in our interview (as I'm sure he's told other interviewers) that he was proud of his work developing the vaccine (as well he should be). Nevertheless, this woman thought that this particular video clip was a big deal, and she assured me that if I posted it online, it would draw a lot of attention to the film. On the theory that no publicity is bad publicity, I had the film distributor post the clip. While it got a fair number of views, it didn't appreciably affect sales or publicity.
The whole thing was just eye-opening in terms of seeing how someone who believes in the vaccine-autism connection thinks. The idea that Offit would be ashamed of his work was surprising and very different from how those of us who don't believe in a vaccine connection think.
As for Ari's question, it's a hard one. Given that "if you've met one autistic person, you've met one autistic person," it's hard to think of a single policy or legal goal that would necessarily benefit all autistic people. I think it will continue to be important to make sure that autistic adults are a part of every autism discussion and to continue to move the conversation away from a deficit-based model to a strength-based model. I think there's now an infrastructure in place to help that process along, and I hope it will also bring about more dramatic changes that I can't even conceive of at the moment.
Ari: Very worthwhile goals, Todd. I think that changing the nature of the autism conversation is going to be a necessary foundation to almost any other kind of change we could hope to drive. Still, I wonder if it's entirely the case that we can't think of single policy or legal priorities that would lift all boats in the autism community. For example, meaningful efforts to curb and ultimately end aversives, restraint and seclusion would stand to drastically improve the lives of all Autistic people. Ditto action against bullying, or further steps to building a real and broad-based employment support infrastructure in this country, tackling both the availability of service-provision and the Social Security and Medicaid bureaucracy that makes it difficult for people to work.
For that matter, what is it that precludes us from setting ambitious goals that are skewed towards a particular part of the autism spectrum? For example, the coming decade could see a vast expansion in Augmentative and Alternative Communication technology, an end to sub-minimum wage employment for people with disabilities, or a further expansion in Olmstead enforcement leading to even more states deciding to move away from the institutional model of service-provision. All of these things would disproportionately benefit those with more severe impairments than I possess, but I can't imagine looking at them as anything but positive ambitions for the community. Furthermore, it is my suspicion that as long as the dignity and autonomy of those with severe intellectual and communication related impairments remains in doubt, it will be impossible for the rest of us to be secure in our own rights. If it is deemed acceptable to segregate and deprive of rights those at one part of the autism spectrum - or with any disability - then the rights and inclusion of the rest of us are conditional upon our "fitting in" sufficiently within normal society. As my own time in the special education system taught me, possessing only conditional rights can be a very dangerous existence.
Seth: Unless someone has a strong objection, I think this is a good place to end this -- at least for the time being; we can always revisit/expand/explore anew at some point in the future.
More:Public Library Of Science Thinking Person Guide's To Autism Steve Silberman John Elder Robison Loving Lampposts
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