{"id":280,"date":"2012-01-16T17:10:46","date_gmt":"2012-01-16T17:10:46","guid":{"rendered":"https:\/\/blogs.nature.com\/soapboxscience\/?p=280"},"modified":"2012-03-13T14:38:08","modified_gmt":"2012-03-13T14:38:08","slug":"sciwritelabs-7-1-the-new-york-times%e2%80%99s-amy-harmon-on-neurodiversity-and-writing-about-autism","status":"publish","type":"post","link":"https:\/\/blogs.nature.com\/soapboxscience\/2012\/01\/16\/sciwritelabs-7-1-the-new-york-times%e2%80%99s-amy-harmon-on-neurodiversity-and-writing-about-autism","title":{"rendered":"SciWriteLabs 7.1: The New York Times\u2019s Amy Harmon on neurodiversity and writing about autism"},"content":{"rendered":"

\"\"<\/a>Seth Mnookin<\/a>\u00a0is a Lecturer in\u00a0MIT\u2019s Graduate Program in Science Writing<\/a>. His most recent book,\u00a0The Panic Virus: The True Story Behind the Vaccine-Autism Controversy<\/a>, was called\u00a0a “tour de force” by\u00a0The New York Times<\/a>\u00a0and “a book that should be required reading at every medical school in the world…a brilliant piece of reportage and science writing”\u00a0by\u00a0The Wall Street Journal<\/a>.<\/em><\/p>\n

He is also the author of the 2006\u00a0bestseller\u00a0Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top<\/a>, which chronicles the challenges and triumphs of the John Henry-Tom Werner ownership group of the Boston Red Sox, and 2004\u2032s\u00a0Hard News: The Scandals at<\/a>The New York Times\u00a0and Their Meaning for American Media<\/a>,\u00a0which\u00a0was a\u00a0Washington Post\u00a0Best Book of the Year.<\/em><\/p>\n

Since 2005, he has been a contributing editor at\u00a0Vanity Fair<\/a>, and he\u00a0blogs regularly at The Public Library of Science<\/a>. For more information, visit\u00a0his website<\/a>\u00a0or follow him on\u00a0Twitter<\/a>,\u00a0Google+<\/a>, or\u00a0Facebook<\/a>.<\/em><\/p>\n

On December 26,\u00a0The New York Times<\/em>\u00a0featured the second installment in \u201cAutism, Grown Up,\u201d an ongoing series by Pulitzer Prize-winning science writer\u00a0Amy Harmon<\/a>. The\u00a05,113-word, front-page story, titled \u201cNavigating Love and Autism,\u201d<\/a>\u00a0chronicled the courtship and romance of 21-year-old Jack Robison and 20-year-old Kirsten Lindsmith, both of whom have been diagnosed (and self-identify) as having Asperger syndrome.<\/p>\n

Similar to Harmon\u2019s first piece in this series,\u00a0\u201cAutistic and Seeking a Place in the World,\u201d<\/a>\u00a0\u201cNavigating Love and Autism\u201d is an incredibly intimiate piece of journalism. It\u2019s freckled with vignettes that\u00a0wouldn\u2019t feel out of place in short stories by Raymond Carver or Andre Dubus. But the intimacy and narrative flow shouldn\u2019t obscure readers from the incredible effort that went into writing this piece \u2013 or the incredible amount of science reporting and research that allowed Harmon to be confident making the statements she made.<\/p>\n

Over the last few weeks, I\u2019ve been running lightly edited transcripts of e-mail interviews between Harmon and me about her work, science writing and reporting, and the evolving media landscape on my blog at the Public Library of Science;<\/a> because of the wide interest expressed by readers, they’re going to be reprinted here. (The first entry is below, the second piece will be posted on Friday, and the final installment will run next week.) Nature.com readers interested in further exploring the issues raised in these conversations can also check out SciWriteLabs,<\/a> an ongoing feature I curate that addresses issues relevant to science journalism. Finally, David Dobbs interviewed Harmon a few months ago for a great piece in The Open Notebook<\/a>, a site dedicated to \u201cthe story behind the best science stories.\u201d<\/p>\n

\u00a0\"\"<\/a><\/p>\n

New York Times science reporter Amy Harmon<\/p>\n

 <\/p>\n

SM<\/strong>: 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?<\/p>\n

AH:<\/strong>\u00a0<\/strong>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.<\/p>\n

At the time I was part of a new group of reporters assigned to write what we called \u201cHow We Live\u201d stories, about trends in American life, so the idea fit my beat. And when I called around, and visited some support groups,\u00a0I found that this was in fact happening on a fairly large scale<\/a>: 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.<\/p>\n

I never met the librarian I used in my lede to that first piece (\u201cFinding Out: Adults and Autism; An Answer, but Not a Cure, for a Social Disorder,\u201d<\/a>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 \u2013 he wept, he told me, when he came across an article in an academic journal describing Asperger\u2019s. Because he recognized himself.<\/p>\n

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 \u201chey, am *I* on the spectrum? Is my spouse? My relative?\u2019\u2019 etc. \u00a0One 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\u2019s diagnosis, which some people see as basically a medical excuse for bad behavior.<\/p>\n

So I did\u00a0a follow-up piece for the Review<\/a>\u00a0about a new term that I had not managed to work into the first story \u2014 \u201cneurodiversity\u2019\u2019 \u2013 and the nascent movement calling for acceptance of all flavors of human oddity, which were increasingly being linked to variations in brain wiring.<\/p>\n

That led to\u00a0one more piece<\/a>, 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.<\/p>\n

Others have since written more about the neurodiversity movement \u2013 including\u00a0David Wolman, in a memorable 2008\u00a0Wired<\/em>\u00a0piece<\/a>, and more recently Steve Silberman, whose\u00a0tweets<\/a>\u00a0and\u00a0blog posts<\/a>\u00a0on the subject are thoughtful and unbelievably comprehensive (he is working on a book about it).<\/p>\n

I might have written more then, but I had my daughter that year, and soon after I got back from maternity leave\u00a0I started writing about new genetic technologies<\/a>, which led to\u00a0a series on a cancer clinical trial<\/a>. 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.<\/p>\n

SM<\/strong>: You noted that you were \u201cfascinated by this polarization of the spectrum.\u201d I\u2019ve never covered a story\u00a0that\u2019s engendered as strong reactions as writing about autism<\/a>. Did you hear from people who were upset by your stories \u2014 and if so, what types of reader responses did you get?<\/p>\n

AH<\/strong>: After the 2004 story about people with autism saying \u201cdon\u2019t cure us\u201d ran, I got mail from parents whose children are more severely impaired who were really upset. And of course I could see that \u2013 what did these so-called autistic people mean, what did I mean, they shouldn\u2019t try to cure their children? Children who were completely uncommunicative, who hurt themselves, whose lives seemed so horribly limited by this condition?<\/p>\n

To have only a single term to refer to people with the vast range of autism\u2019s 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 \u201cAsperger syndrome\u201d 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\u2019s something I really struggled with in these recent stories. I don\u2019t like \u201cmild autism\u201d because that seems to downplay the considerable challenges faced by people like Jack or Kirsten. And I tried to avoid the terms \u201chigh-functioning\u201d and \u201clow-functioning\u201d because they are so vague\u2013does 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\u2019t hold a reciprocal conversation?<\/p>\n

I heard from parents of more severely affected children after the \u201cNavigating Love\u201d story ran too, but these letters were a bit different. It\u2019s not that they didn\u2019t 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\u2019ve 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.)<\/p>\n

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\u2019s 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 \u201cneurotypicals\u201d \u2014 i.e., people who are NOT on the spectrum \u2014 who said they saw shades of their own relationship challenges in Jack and Kirsten\u2019s. The main difference, one person said, is that \u201cthey are much more honest.\u201d<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Seth Mnookin\u00a0is a Lecturer in\u00a0MIT\u2019s Graduate Program in Science Writing. His most recent book,\u00a0The Panic Virus: The True Story Behind the Vaccine-Autism Controversy, was called\u00a0a \u201ctour de force\u201d by\u00a0The New York Times\u00a0and \u201ca book that should be required reading at every medical school in the world\u2026a brilliant piece of reportage and science writing\u201d\u00a0by\u00a0The Wall Street Journal.  Read more<\/a> Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":186,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[12],"tags":[36,129,37,32,38],"class_list":["post-280","post","type-post","status-publish","format-standard","hentry","category-science-communication-and-outreach","tag-amy-harmon","tag-autism","tag-nyt","tag-science-writing","tag-seth-mnookin"],"_links":{"self":[{"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/posts\/280","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/users\/186"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/comments?post=280"}],"version-history":[{"count":0,"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/posts\/280\/revisions"}],"wp:attachment":[{"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/media?parent=280"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/categories?post=280"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.nature.com\/soapboxscience\/wp-json\/wp\/v2\/tags?post=280"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}