Autism roundtable, Part I: Angry parents, disability rights, and living in a neurotypical world

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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.

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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 first half of a lightly edited transcript of our conversation; the second half has been posted on The Huffington Post. (One note: Ari was tied up with other work when we began; he doesn’t jump into the fray until tomorrow’s segment.)

Seth: I want to begin our discussion by looking at the ways autism is portrayed in the the media. I’ve been having an online conversation with New York Times reporter Amy Harmon about a story she wrote about a young couple with Asperger syndrome (one of whom, incidentally, happens to be John’s son). That discussion made me think about how dramatically the ways we think about and talk about autism has evolved. And with that deliberately open-ended intro, I’ll open it up…

Steve: I’d like to start out by asking my fellow roundtablers a question. For about a decade or so, the most prominent voices in media coverage of autism (other than scientists)  were those of parents like Jenny McCarthy, who earnestly believed that vaccines had triggered brain injury in their kids. Now, new voices are coming to the fore. Self-advocates like Ari and Lydia Brown are talking about what it’s like to live on the spectrum and putting autism within a disability-rights framework — as a human variation that deserves accommodations and support (as the deaf community has successfully argued for use of closed captioning in TV broadcasts, for example, which ended up producing myriad benefits for folks even beyond the deaf community). Todd’s wonderful film Loving Lampposts presents his perspective of being the parent of an autistic kid who focuses on learning to love his son Sam just as he is, while helping him reach his full potential. I get the same kind of message from the powerful new book by Shannon and her team, The Thinking Person’s Guide to Autism, which I chose as Book of the Year on my PLoS blog, Neurotribes.

What has changed?

Shannon: I think it’s partially due to what I stated at the end of my essay, “Identifying and Avoiding Autism Cults.” Note the emphasized sentence in the section below:

Families of children with new autism diagnoses can avoid cultish mistakes like ours if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed children with autism make careful choices and maximize limited resources. We can prevent them from taking their kids on expensive and emotionally-propelled journeys to nowhere.

To do this, we need to be outspoken in identifying crusaders for fringe autism interests, and those who ignore autistic voices yet claim to speak for all autistic families. We need to be vigilant in calling out misinformation, ignorance, and potentially harmful advice. And we need to keep our virtual doors open and welcome mats out, because most of the families who fall into autism cults will eventually lose their faith, and start looking for answers anew. They’ll need to know where to find them.

I think Todd’s film is part of that movement. Loving Lampposts helps people understand that children like my son Leo are part of a … tapestry rather than a spectrum, even, and that institutionalization will not be his only option when he becomes an adult. It also shows why pity doesn’t have much place or use in our personal lives, why my son deserves respect, and how autism can mean a life filled with joy as well as challenges. Leo is as loved as any child who ever appeared on this earth — and that FFS I do NOT see him as “broken.”

I’m so very done with the pity angle for kids like my son who are considered “severe.” Even the Apple iPad video Leo was in (at 4:40) focused on his challenges more than the fact that he uses his iPad to play like any other kid — and this is after I debriefed the team about positivity balancing honesty. And I do think Apple did a superior job compared to most popular media purveyors, in this instance.

We created TPGA because we want to reach people newly affected by autism — family members, people with new autism diagnoses, people who are wondering if they themselves might have autism — before the media takes them down the pity, horror, and misinformation rabbit hole. This is in parallel to the discussion Seth and I recently had on TPGA, in which he pointed out that if more parents felt comfortable having conversations with their pediatricians, if they felt like they could get all their vaccine (and other) questions answered, then they might not go bounding off into the Internet.

John: Steve, you mentioned two groups in the media coverage of autism – what we might call Angry Parents and now, Disability Rights advocates.

In between those two groups, I think you have people like Temple [Grandin] and me, and we make up a group you might describe as Learning How to Fit in an NT [neurotypical] World.  I’m all for the crusade for more and better accommodation, elimination of discrimination, etc —  but I also want to make a secure place for myself now.  To that end, I focus on changing the one thing under my control, which is me.  Not you, or the law, or my employer.

I’m all for self advocacy, too, but again, my focus remains on security right now.  I say I want you to accept me, but I know the only thing I have the power to change today is myself.  So I want more rights, tolerance, acceptance, accommodations, but I’m also willing to change my behavior to more closely fit society’s standards.  I do that to the extent I can, while still feeling true to myself.

In summary, I suggest there are three groups. Angry Parents will probably always be with us.  Uncertainty about the causes of autism remain, and our society is one where many people grow up with a victim mindset.  The idea that autism is “something someone did to my kid” is very compelling to a portion of the parent population and I expect that will remain true, even if vaccine ceases to be the means through which the villainous deed was supposedly done.

Todd: John is likely right that what he calls “Angry Parents” will probably always be with us.  At the same time, I agree with Steve that we’ve seen a change in the public portrayal of autism over the past few years.

My guess is that the change is due partly to the fact that the “causes and cures” model of thinking doesn’t ultimately lead to a place that’s very useful for autistic people.  Even if a definite cause or causes of autism could be determined in the near future — a rather huge if —  it’s not immediately clear what relevance that would have to autistic people who are already here.

On the cure side of the equation, most parents who try alternative treatments eventually realize that they are not going to “recover” their children from autism.  As Shannon points out in her discussion of autism cults, these are the parents who start “looking for answers anew.”  They realize that they are going to have an autistic child and they have to think about how best to support, rather than change, that child.  I think it’s at that point that they are more open to what autistic self-advocates and their allies are saying.

And fortunately, the voices of self-advocates are more prominent than they used to be.  It’s no coincidence that the change in the discussion of autism over the past five years coincides with the lifespan of the Autistic Self Advocacy Network.  The work that ASAN, TPGA, and other groups have done in insisting that autistic adults be a primary voice in discussions of autism is very important.  I’m sure it’s played a part in leading to some of the recent media coverage of autistic adults.

Speaking from personal experience, I can say that once you start listening to autistic adults you realize that a true picture of autism is much more complex than the old “recovery or tragedy” type of media coverage that was standard for so long.  The real lives of autistic adults are much more nuanced than that. So we’ve reached a point where, when parents are ready to listen, there are now voices of autistic adults out there for them to listen to.  There is still a lot more work to do, but I think we’ve seen real progress.

Seth: There’s a lot here to unpack. I want to start off by saying it took me a minute to figure out what what FFS was an acronym for; when I did, it had me LingOL.

Shannon, you raise a point that has come up a couple of times in discussions we’ve had and I’ve been meaning to ask you about it. At one point, you were more sympathetic to some fringe ideas about autism; today, you very wholehearted embrace a fact-based, scientifically-grounded approach. I’m curious about what this change looked like for you: What led your thinking and attitude to evolve so dramatically?

I ask because over the past several years, I’ve tried very hard to be open and accepting of people that view the world very differently from me. I think the anti-vaccine forces have done enormous, and in many cases irreparable harm; to this day, I remain in regular contact with families who have lost children to vaccine-preventable diseases. But I try to strenuously avoid writing (or talking) in anger, and I try to keep my proverbial arms open. At several events I’ve been at, anti-vaccine activists have confronted me. When this happens, I try to say to them, I know we disagree about this; I hope we can agree that families and people dealing with autism are not getting the support or services they need and deserve in our society. And without fail, the response to this is basically, Screw you.

I guess what I’m asking — and this isn’t just directed at Shannon — is how one can be vigilant in calling out misinformation and ignorance and simultaneously keep our virtual doors open and welcome mats out to the people spreading misinformation and ignorance.

John, I’m fascinating by your statement, “I want you to accept me, but I’m also willing to change my behavior to more closely fit society’s standards for acceptability. I do that to the extent I can, while still feeling true to myself.” Can you expand on that a bit?

And Todd, I know we’ve corresponded briefly over the past year, but I don’t know if I’ve had a chance to say how powerful and important I found your film. It’s a wonderful examination and meditation on what it means to be a human being, and a parent, and a member of society. (I also love it for the ways it reminds me of my old neighborhood in Brooklyn; before we moved to Boston last August, we lived a few blocks away from Prospect Park, down near the carousel and the zoo.) If you’re comfortable talking about this, I’d love to hear some of the reaction to your movie — both from people who are aware of and involved in the greater autism community and from the general public.

Todd: Thanks for the kind words about my film, Seth. The reaction to it, both inside and outside the autism community, has for the most part been very positive.  I wasn’t necessarily expecting that to be the case because I do take some positions in the film that could be considered controversial.  But like you, Seth, I tried to be respectful of people with differing viewpoints even as I made my own views clear.  I don’t have to tell anyone in this roundtable that it’s easy to find Internet shouting matches about these issues.  I didn’t want to make the filmed equivalent of an Internet shouting match.

And so to some extent, the best reactions I’ve had were from a few people who were in the film who disagree with me, but who thanked me for giving them a chance to express their views.  I certainly haven’t heard from every subject who disagrees with me, but the reactions I’ve gotten, along with a number of reviews that mention the respectful tone of the film, make me feel like I did achieve that goal.  As you say, Seth, being respectful doesn’t guarantee that you will be treated respectfully.  But I think it’s much easier to make an impact in the wider world beyond the autism community if you take a serious, professional tone.

There are a few interesting differences between showing the film to audiences that don’t know a lot about autism (like at film festivals) and showing it to those that do.  Ralph James Savarese, the father of an autistic son who’s now the first non-verbal autistic at Oberlin, has a wonderful quote in the film in which he says that “neurotypical people act so autistic when they’re talking about autism–it’s cure, cure, cure, cure.”  That is a huge laugh line for audiences that know something about the autism community, and it passes silently by for other audiences.

Showing the film to general audiences is a great chance to shape their views about autism before they encounter an autistic person (as they likely will at some point).  To the extent that I can make people who don’t know a lot about autism feel more positive about it, I’m happy.

For the more knowledgeable audiences, I’m always pleased when I feel like I’ve changed their views or articulated something about their views that they haven’t often heard said publicly.  It’s happened enough times to make me feel that this whole change in the public portrayal of autism that we’ve been discussing is partially just a matter of more people saying publicly what they’ve been thinking privately.  I mean, I think I made a good film, but if it wasn’t tapping into something that’s going on in the autism zeitgeist, it wouldn’t have been as successful.

And finally, at the risk of making a long answer longer, a story about one negative reaction: after one film festival screening, the first question I got was from a woman who had attended with her mother.  The woman had a sister who had been severely brain damaged at birth.  She said she wanted to thank her mother for taking care of her sister for so many years without any public recognition.  This was as opposed to all the people in my film (and to me) who were writing books, speaking publicly about themselves or their kids, etc.  It seemed to the woman that we were all in it for the money.

Although she had a very inaccurate idea about how much money someone can make from an autism documentary, the woman was clearly very angry and speaking from a place of pain.  I answered that most people who write books or make films about these issues do so because they’re interested in building a community.  The woman wasn’t really satisfied by my answer, but the whole episode was a good lesson: people’s disagreements with you are sometimes more about them than about you.

Shannon:  Seth, the transition from belief-based to evidence-based thinking about autism stemmed from two factors, both of which took years to root: Our own evidence and data about Leo’s autism eventually outweighed cultish beliefs, as I describe in one section of TPGA:

We tried to remain true to the rest of the DAN! [Defeat Autism Now!] protocol, but became increasingly discomfited by ceaseless recommendations for new supplements, expense, and lack of even a placebo effect. When our son’s cobra-like reflexes resulted in cookie-based “challenges” to his special wheat-free, dairy-free (GFCF) DAN! diet, ABA [applied behavioral analysis] data showed that the transgressions didn’t affect his health or behavior, not at all. I started to wonder if my son might not get the miracle cure we’d been promised. Then we had another crack in the DAN! armor: our ABA program supervisor spent four months tracking DAN! supplements versus behaviors, and determined that illness was the only variable that affected our son noticeably. Not diet. Not supplements.

We started to realize that DAN! diet and supplements affected nothing except our bank account. We stopped seeing our DAN! doctor, gradually took our son off the GFCF diet, and eventually abandoned all but the nutritionally significant supplements.

I guess that makes us the recovered ones, not our son.

When Leo was first diagnosed in 2003, access to best practices autism resources did not exist (or were difficult to find). Over time, we discovered scientifically rigorous autism perspectives like the websites Left Brain/Right Brain and Autism Diva (the second long AWOL, sadly); positive, pride-filled, non-Pollyanna parenting perspectives like those of Kristina Chew and Paul Collins; and self-advocate perspectives including Amanda Baggs and Dora Raymaker. Together, they opened up the top of my head about my son’s future, made it about possibilities rather than limits, about seeing him as a whole person who needs support and understanding rather than a damaged work-in-progress (and please know it is extremely distressing to confess I once thought of Leo as “less than”).

We try very hard at TPGA to be respectful and compassionate while standing behind the evidence, much as you [Seth] do in The Panic Virus and your related writings. It’s not always easy; we try to have humility about that, too. We want to avoid the smackdown mentality of some skeptic sites; they have their role, but to quote Tom Lehrer, “I don’t think this kind of thing has an impact on the unconverted, frankly. It’s not even preaching to the converted; it’s titillating the converted.” Calm, persistent, fact-anchored role modeling and information-sharing — it works. It worked for me, and we get frequent messages at TPGA that it’s working for other folks, too. And that’s wonderful. We’re trying to make it easier for new autism communities’ members than it was for us — via our website but especially in our book —  by making practical, thoughtful, honest autism information centralized, organized, and accessible.

Seth: Todd, your comment about the different reactions to the “cure, cure, cure” quote, and Shannon, your note about the difference in available information between 2003 and now, brings up another question I had: How has the explosion of information and attitudes and perspectives and awareness about autism over the past decade changed the way people interact with you?

Also, Todd, without putting you on the spot, would you care to talk a bit more (and a bit more specifically) about those people in your movie who disagree with you but who appreciated the chance to express their views? (And: I know it’s not funny, but I had to laugh when you recounted the accusation that you were making carefully wrought, poignant, intimate documentary films for the money. I’ve had many similar reactions: People accusing me of exploiting the issue to make a buck. I think in general, people have an extremely inflated idea of the financial benefits of creating content, whether that be in the form of books or magazine articles or documentaries or whatever.)

Shannon, I remember the first time I read about your son’s “cobra-like reflexes”; I loved that description then and I love it just as much now. Thanks, too, for reminding me about Kristina Chew and Amanda Baggs; both of them were (and are) hugely influential in my thinking and learning about these issues. Kristina’s writing in particular had a very profound effect on me: At the time I first discovered her blog, most of the online discussion I had previously encountered about autism and vaccines was the type of shrill, “titivating the converted” invective that you (and the inimitable Tom Lehrer) describe. Seeing Kristina state her position very clearly and forcefully and with incredible compassion and grace served as a kind of attitudinal roadmap for the type of work I wanted to do.

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