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The Best Science Writing Online 2012

The Best Science Writing Online 2012

Bora Zivkovic, Jennifer Ouellette

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Contributors Lee Billings and Steve Silberman talk autism, space travel, and extraterrestrial life (Part 1)

Lee Billings and Steve Silberman are two contributors to The Best Science Writing Online 2012, edited by Bora Zivkovic. Lee’s essay “Incredible Journey” chronicles the potential for and obstacles to space travel, and Steve's “Woof! Living Boldly as a ‘Free-Range Aspergian’” tells of the author’s friendship with an autistic man. Here, the two authors got together to talk about neurodiversity, the misconceptions about autism, and what would have to happen to make having a beer with an alien possible. Steve is a longtime writer for Wired, a bloger for the Public Library of Science, and author of Neurotribes. He lives in San Francisco. Lee is a freelance science writer and lives in New York.

Lee Billings:  Why did you choose to write about autism now?

Steve Silberman: In 2001, I wrote an article for Wired about autism in Silicon Valley called “The Geek Syndrome.” I still get email about that piece 12 years later, because it was one of the first mainstream articles to talk about autism in complex human terms, rather than as it’s usually portrayed: a horrible plague brought on by this week’s newly discovered “cause” and soon to be “cured” by next week’s promising breakthrough. In addition to the serious challenges that autistic people and their families face, I also talked about some of the distinctive gifts of autistic minds. I described Temple Grandin, the author of Thinking in Pictures and other books and one of the leading designers of livestock-handling facilities in the world, being able to visualize a complex machine in her mind’s eye, set it “going,” and then check back with it later to see which parts of the machine are worn. It was also one of those pieces in which every line touched on some vast territory of human experience that I wasn’t able to do justice to in the space available. The whole subject haunted me, and I wanted to learn more about the history of autism, and about how we got to where we are now. So now I’m writing a book called NeuroTribes: Thinking Smarter About People Who Think Differently.

I stayed in touch with some of the families I wrote about, and over the years, while the national media coverage of autism became entirely consumed with an angry debate about vaccines, I saw that these families were going through some very difficult transitions as their kids “aged out” of services and support when they turned 18. At the other end of the demographic, there are older parents of autistic adults who are afraid to die, because it means that their kid, who has been living at home for decades, may have to go into an institution. Meanwhile, anti-vaccine activists like Jenny McCarthy are saying things like “There weren’t any autistic adults in the past. It’s all now.” That’s news to the many wonderful autistic adults I know, many of whom grew up before the criteria for the diagnosis were widened into a broad “spectrum” that includes them. John Elder Robison, the subject of my interview in The Best Science Writing Online 2012, is one of those adults. So I feel like there are a lot of issues in autism that don’t get the attention they deserve, and I want to try to cast some light on them.

Lee: How did you meet Robison, and are there any good anecdotes from your interactions with him?

Steve: I met John a couple of years ago at IMFAR, the big annual international autism science meeting. I instantly liked John. He’s a very smart, playful, big handsome bear of a man who says “Woof!” when he gets excited, which is often. I loved his hilarious memoir, Look Me in the Eye, about growing up to be one of the guitar techs for Kiss, which became a New York Times bestseller. I ended up hanging out with John and a small group of other autistic people at IMFAR, which was interesting, because there were hundreds of scientists there, talking about autism solely in terms of disorder, deficit, and impairment—and yet here was John and a few other autistic friends of mine who are actually living on the spectrum every day. It almost felt like everyone at the conference was talking about autistic people behind their backs, while overlooking the living reality of the few autistic people in the room, who obviously have their own expert opinions on the subject! The autistic adults I know don’t walk around hating their lives, wishing they’d never been born, or hoping for a cure that will somehow fix all of their problems. Many of their problems come not from their autism, but from a society that doesn’t respect or understand autistic people, or make reasonable accommodations for their needs. My friends face serious challenges in certain spheres—particularly in trying to make sense of social signals in real time and dealing with sensory overload—but they’re fully fledged multi-dimensional human beings with the usual complement of hopes, fears, emotions, imagination, and the rest of what being a person is all about. By hanging out with them, I quickly realized that many of the stereotypes of autism in the media—like that autistic people lack empathy and have no sense of humor—are either completely wrong or absurdly shallow.

One thing that really impresses me about John is how much thought and consideration he gives to his life, including to the feelings of the people around him. We ended up talking about various things that came up in our interview on the phone for weeks afterward, because he was still thinking and feeling things through. I deeply respect that.

Lee: Is there any emerging consensus about the wide variations in the severity of autism?

Steve: I would say that one emerging consensus is that the idea that there is a single, unified condition called “autism” is little more than a useful fiction. This fiction allows us to address certain similarities across a very broad and diverse spectrum of conditions, and enables government agencies and insurance companies to offer services based on a single box labeled “autism” that can be ticked on a form. But that monolithic notion doesn’t reflect the actual reality, which is much more complex. What we call autism is probably a cluster of many different conditions, rooted in a wide variety of genetic predispositions and epigenetic triggers, which exhibit themselves in many different ways, including variations in severity.  The truth is that there are many “autisms,” rather than one “autism.”

Lee: Could you talk more about the problematic distinctions between “low-functioning” versus “high-functioning” people with autism? What alternative is there to this classification structure?

Steve: Obviously, the language of “high-functioning” versus “low-functioning” is very tempting to use, and most people—that is, parents and clinicians—use it. If you have a kid who can’t talk or use the toilet, rarely seems to connect with the people around her, appears to be profoundly intellectually disabled, and bangs her head against the wall, it seems appropriate to classify her as “low-functioning.” On the other hand, if you have a guy with an Asperger diagnosis who has a job writing code or fixing luxury cars and has a wife and kids of his own—it seems easy to call him “high-functioning.” But the autistic adults I know hardly ever use those two terms, because they know better. Even people who are classified as high-functioning—like John Elder Robison and Temple Grandin—really struggle with some aspects of life that most neurotypical people don’t have to struggle with. At the same time, some research into “low functioning” individuals in recent years indicates that they may have much more going on inside them than is usually visible from the outside. That’s one reason why the development of alternate forms of communication for people who have difficulty with spoken language—and we’re talking about iPads here, an “assistive technology” that many neurotypicals find indispensable these days—is so important. I’ve interviewed some autistic people who would be written off as “low-functioning” by most people, but once they get an iPad with text-to-speech apps in their hands, they become as eloquent as poets.

Personally, I avoid using the terms “high-functioning” and “low-functioning” because I think they’re both misleading. The term “high-functioning” makes certain kinds of challenges invisible, while the term “low-functioning” makes certain kinds of intelligence and capability harder to see. Many “low-functioning” kids will eventually learn self-care skills and be able to communicate with some form of assistive technology. Once they can make their thoughts visible to others, you find out that they have very rich inner lives, and were always listening to what was being said around them. We need to find out what has worked in the lives of people like Robison, Grandin, and Stephen Shore—a guy who was considered low-functioning when he was young, and whose parents were told to put him in an institution. He’s now a professor at Adelphi University, and a delightful person. Once we find out what has worked for them, we can apply those lessons to the next generation of autistic people. That’s why Jenny McCarthy’s claim that “there were no autistic adults, it’s all now” is not just wacky and incorrect, it’s dangerous, because it deprives the huge population of autistic kids of visible mentors and role models whom they can learn from.

Lee: Do you have any sort of vision for what a more “neurodiverse” world might look like, how it would differ from our own?

Steve: I can’t imagine a more neurodiverse world than the one we’re living in. Many innovations that we take for granted every day were created by people who “think differently.” Look at two of the big ideas that have decisively shaped the modern world: peer-to-peer file sharing and online classified ads. Both BitTorrent and Craigslist were created by folks on the autism spectrum, Bram Cohen and Craig Newmark. As a reporter for Wired, I met a number of people over the years in the Valley, including young techies at some very hot startups like Quora, who are clearly living in Dr. Asperger’s domain somewhere, even if they would never want or need an official diagnosis. I’m not speaking loosely. I’m cautious about that, because it’s become a sort of parlor game to retro-diagnose people like Isaac Newton and Albert Einstein, and it’s easy to go overboard. I think remotely diagnosing Bill Gates, for example, is a bit of a reach, even if he seems to display some classic autistic traits.  But Bill Dreyer, who invented the first protein sequencer, and Carver Mead, the father of very large scale integrated circuits, were both dyslexic. Neurodiversity is all around us already, and we all reap the benefits.

But the question is: Do we honor the human fact of neurodiversity, and learn from it, and support people who think differently with societal accommodations and mentoring programs that will enable them to live happier, healthier, and more productive lives—or do we stigmatize these people by talking about cognitive variations only in terms of epidemics, deficits, impairments, and potential cures?  How we approach that complex social question has ramifications for the kinds of science we will invest in, the approaches we take to educating our children, and the kinds of programs we will make available (or not) for families of people with these conditions across their entire lifespan. The stories we tell about these conditions also influence how parents feel about their own kids, and how young people who think differently will feel about themselves as they come of age.

That’s why I think it’s important to talk about the strengths and special gifts conveyed by neurodiversity, as well as the fact that conditions like autism can also be very disabling in ways that deserve support and a new wave of innovation in assistive technology. Everyone’s lives are made richer by treating disabled people with respect and by offering them the chance to live as independently as possible and fully participate in the making of culture. That’s one of the important lessons that the disability-rights movement has taught us in the last century, and it’s a lesson that the neurodiversity movement, which is still in its infancy, is trying to extend to people with autism, ADHD, dyslexia, and other conditions. We’ve made tremendous strides in race relations, women’s rights, and the treatment of gay people in recent decades. Honoring neurodiversity is the next frontier of society’s evolution toward universal compassion and respect.

 

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