SciWriteLabs 7.1: The New York Times’s Amy Harmon on neurodiversity and writing about autism

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Over the holidays, The New York Times gave those of us who love good science writing and value in-depth reportage a fantastic present in the form of “Navigating Love and Autism,” Amy Harmon‘s front-page dispatch about a young couple with Asperger syndrome.  I’ve been effusive in my praise of Harmon’s piece, as have been many, many others, including John Elder Robison, the father of one of Harmon’s subjects and the author of the memoir Look Me In The Eye.

New York Times science reporter Amy Harmon

One of the things that struck me when reading Harmon’s piece is the depth of her knowledge and her commitment to the story. My own work on The Panic Virus (and for those of you who haven’t had a chance to check it out, it’s out this week in paperback) made me well aware of the unique challenges in writing about autism, a topic that is messy and complicated and rejects easy answers or straight-forward characterizations. Harmon graciously agreed to speak with me about her  work. What appears below is part one of a three-part interview; the second two installments will run next week.

(For new visitors to the site, #SciWriteLabs is an ongoing series that examines topics related to science writing and journalism. An introduction to the series can be found here; the rest of the entries are here.)

SM: I want to start by going back to some articles you wrote back in 2004 that touched, either directly or indirectly, on the neurodiversity movement. That was a fairly bold topic for the newspaper of record to be tackling. What made you write about it at that time?

AH: I was interested in Asperger syndrome in 2004 because I had an adult family member who I thought fit the description. That person was not interested in being diagnosed, but I figured others must be. The diagnosis itself had only entered the Diagnostic and Statistical Manual a decade earlier, and was just beginning to be widely known.

At the time I was part of a new group of reporters assigned to write what we called “How We Live” stories, about trends in American life, so the idea fit my beat. And when I called around, and visited some support groups, I found that this was in fact happening on a fairly large scale: adults who had previously thought of themselves as fundamentally flawed because of their social oddness were finding some relief in tracing it to a neurological condition.

I never met the librarian I used in my lede to that first piece (“Finding Out: Adults and Autism; An Answer, but Not a Cure, for a Social Disorder,” 4/29/04), I only spoke to him on the phone, but I will never forget how visceral his story felt, just listening to it – he wept, he told me, when he came across an article in an academic journal describing Asperger’s. Because he recognized himself.

There was a huge outpouring of response to that article, from people who saw themselves in it and people who thought they saw friends or family members. I heard from lot of people wondering “hey, am *I* on the spectrum? Is my spouse? My relative?’’ etc.  One of those people was the then-editor of the Week in Review, who urged me to do a follow-up piece. And I had wanted to address the eye-rolling that goes on about the Asperger’s diagnosis, which some people see as basically a medical excuse for bad behavior.

So I did a follow-up piece for the Review about a new term that I had not managed to work into the first story — “neurodiversity’’ – and the nascent movement calling for acceptance of all flavors of human oddity, which were increasingly being linked to variations in brain wiring.

That led to one more piece, about what was then a small but vocal group of people on the autism spectrum who were saying they did not want to be cured, that autism was part of who they were. I was fascinated by this polarization of the spectrum, with parents of the more severely affected and typically non-verbal doing everything they could to find a cure, and others, who could express themselves, saying they were part of a civil rights movement for tolerance of neurological differences.

Others have since written more about the neurodiversity movement – including David Wolman, in a memorable 2008 Wired piece, and more recently Steve Silberman, whose tweets and blog posts on the subject are thoughtful and unbelievably comprehensive (he is working on a book about it).

I might have written more then, but I had my daughter that year, and soon after I got back from maternity leave I started writing about new genetic technologies, which led to a series on a cancer clinical trial. When I finished that, at the end of 2010, I pretty much immediately returned to autism, and it was interesting to see how the landscape had changed.

SM: You noted that you were “fascinated by this polarization of the spectrum.” I’ve never covered a story that’s engendered as strong reactions as writing about autism. Did you hear from people who were upset by your stories — and if so, what types of reader responses did you get?

AH: After the 2004 story about people with autism saying “don’t cure us” ran, I got mail from parents whose children are more severely impaired who were really upset. And of course I could see that – what did these so-called autistic people mean, what did I mean, they shouldn’t try to cure their children? Children who were completely uncommunicative, who hurt themselves, whose lives seemed so horribly limited by this condition?

To have only a single term to refer to people with the vast range of autism’s manifestations strikes me as problematic. I see the importance of recognizing what are believed to be the common neurological roots of the different forms of impairment. I also see why “Asperger syndrome” has come to be considered by many experts too ill-defined to be meaningful. But there has got to be some more accurate and evocative way to describe the differences. It’s something I really struggled with in these recent stories. I don’t like “mild autism” because that seems to downplay the considerable challenges faced by people like Jack or Kirsten. And I tried to avoid the terms “high-functioning” and “low-functioning” because they are so vague–does verbal ability equate to function? Not necessarily. Are we just talking about IQ? But IQ is so hard to measure in individuals with autism. What about people who are hyper-articulate and score high on IQ tests but can’t hold a reciprocal conversation?

I heard from parents of more severely affected children after the “Navigating Love” story ran too, but these letters were a bit different. It’s not that they didn’t like the story. It was more that they feel the kind of autism they deal with every day has been marginalized. Because the vast majority of the growth in diagnosis comes from including people like Jack and Kirsten, they’ve kind of come to dominate in the popular image of what autism is. (I do hope to address that segment of the spectrum in a future story.)

I also heard from people on the spectrum who disliked various elements of the story, like the part where Jack and Kirsten contemplate treatments that might make it easier for them to gain insight into other people, including each other, because it implied that there was something wrong with them. (And, in the judgment of these readers, that is not the case.) Another person said the story implied that autistic people could only have romantic relationships with other autistic people. Of course it’s always difficult to try to illuminate the condition of a group of people by writing in-depth about one or two individuals, so I can see where all these complaints are coming from. But I did also hear from a lot of people on the spectrum who said the story gave them insight and a sense of hope. And maybe my favorite emails came from so-called “neurotypicals” — i.e., people who are NOT on the spectrum — who said they saw shades of their own relationship challenges in Jack and Kirsten’s. The main difference, one person said, is that “they are much more honest.”

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