Tag Archives: Amy Harmon

SciWriteLabs 7.3: Long-form narratives, crappy first drafts, and the importance of wasting time

Posted on by
Reply

Seth Mnookin is a Lecturer in MIT’s Graduate Program in Science Writing. His most recent book, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy, was called a “tour de force” by The New York Times and “a book that should be required reading at every medical school in the world…a brilliant piece of reportage and science writing” by The Wall Street Journal.

He is also the author of the 2006 bestseller Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top, which chronicles the challenges and triumphs of the John Henry-Tom Werner ownership group of the Boston Red Sox, and 2004′s Hard News: The Scandals atThe New York Times and Their Meaning for American Media, which was a Washington Post Best Book of the Year.

Since 2005, he has been a contributing editor at Vanity Fair, and he blogs regularly at The Public Library of Science. For more information, visit his website or follow him on Twitter, Google+, or Facebook.

It’s been two weeks since the previous installment of my three-part conversation with Pulitzer Prize-winning New York Times reporter Amy Harmon; today, finally, I’m posting the concluding chapter in what has been a fascinating discourse (for me, anyway). These discussions have focused loosely on “Navigating Love and Autism,” Harmon’s latest story in an ongoing series she’s working on titled “Autism, Grown Up.”

Today’s entry focuses on the peculiar challenges of writing long-form journalistic narratives.

Note: The first part of Harmon and my Q&A, which looked at neurodiversity and some of the issues that arise when writing about autism, is here; the second part, which examined what it means to be a science writer, is here. These interviews are part of an ongoing project called #SciWriteLabs, which examines topics related to science writing and journalism. Of related interest is a recent roundtable I conducted about autism with a group of self-advocates, parents, and writers; the first part of that discussion is here, and the second part, which ran on The Huffington Post, is here. Finally, an obligatory mention: The Panic Virus, my book about the controversies over autism and vaccines, is out now in paperback.

SM: Over the past several weeks, one theme we’ve kept coming back to is the amount of work that’s required for long-form narrative projects. People who don’t work in the industry might not realize just how laborious it is to produce a 5,000 or 6,000 word story – and in an era of shrinking news budgets, just how at-risk these types of projects are. Can you talk a bit about what happens before your stories end up in print?

AH: There are different types of long-form narratives, so maybe it’s worth explaining first that I tend to do what are sometimes called “story narratives.’’ They have a plot and they are told through scenes and dialogue. They also have an argument, or at least a point, embedded in them, but it is often not explicitly stated, or perhaps only stated briefly in two or three “nut graphs” near the top. Like in a novel or a movie, the payoff comes at the end, so you need to make readers care about what happens to these characters, and if you can’t, you’re kind of screwed, because you then you have nothing.

These are different from explanatory narratives, which weave a story together with direct commentary by the reporter and/or experts the reporter has talked to; or essays, where you strive for a provocative argument; or profiles, where the point is to provide insight into an individual at a particular moment; or investigations. (Nieman Storyboard had a great interview recently with Jack Hart, a former narrative editor at The Oregonian, in which he distinguished between these genres.)

SM: That reminds of a presentation I saw last week by Deborah Blum. She and David Dobbs were speaking about story structure, and Deborah had a series of examples of ways writers can structure a story: By building a pyramid, or an inverse pyramid, or a diamond, or a circle; by weaving a braid, or creating a rainbow, or fashioning a wave. All of those can work – but the key, in every case, is to have the material that makes a reader want to find out more.

AH: Wow, I need a re-do of that presentation. I think that’s true, and the challenge for a story narrative, regardless of the structure, is that you’re relying exclusively on the scenes and characters to build that suspense.Jonah Lehrer’s essay in The New Yorker last week about how to foster group creativity, for instance, made me keep reading because the point he was making was intriguing and the way he argued it was engaging. With my stories, though, if I stepped out of the narrative to directly explain things, it would sound preachy and annoying. So even though I have an implicit argument  –“with the right kind of support, it’s possible for autistic youth to achieve a level of independence that previous generations have not,” say,  — I’m trying to always “show” not tell. I don’t think this type of narrative is any better or worse than the other kinds – I mostly do them because I’m not that good at the otherkinds. But they do require a different kind of reporting.

SM: What goes into the decision to do this specific kind of narrative?

AH: I think a lot ahead of time about whether I have the right character through which to illuminate whatever the broader cultural trend is that I’m trying to get at.  What is the key conflict, how is it most likely to be resolved? How much of it has already happened and how much of it will play out as I watch?

SM: Can you describe what that was like for these stories about autism?

AH: In the first one, “Autistic and Seeking a Place In An Adult World,” I wanted to show what I knew was a growing tension for many families and communities as more young adults like Justin seek jobs and a foothold in their communities. When I started following him, he had 18 months to find a job, and I thought it was a good bet that he would land one. “Navigating Love and Autism,” the story about Jack and Kirsten, took about two months to do, and I was very nervous about finding a good ending. I got lucky when they decided to get a cat.

SM: Jack’s father, John Elder Robison, noted in a comment how much commitment the “Navigating Love” piece took. What, exactly, was involved in that story?

AH: That was so nice of John to say. I did spend a lot of time with them. Between mid-October, when I first spoke to Jack and Kirsten on the phone, and mid-December, when I last saw them, I visited five times for two or three days each time — and when I wasn’t there, I talked to them on the phone pretty much daily. We also emailed and IM’d. (At one point I even invented a character in Eve Online, the Internet game Jack is semi-obsessed with, so that I could talk to him in the game, but it crashed my computer so I had to give up on that.)

There was one Saturday near the end of my reporting that I spent in Philadelphia, where John and Jack and Kirsten were giving a day-long workshop to a group of autistic teenagers and their parents. They drove down from Amherst the day before in John’s car—about a six-hour drive—and when I called ahead of time to ask if I could ride back with them, John said, “I don’t see why you would want to do that.” But to me, those six hours were a gift: I used every minute of that car ride to construct the detailed chronology I needed before I could start writing.

SM: When you’re interviewing someone, are there times when you know you’ve just found a perfect scene for some part of your story?

AH: One of my two favorite narrative journalism quotes is from Gay Talese: “I waste a lot of time. It’s part of my occupation.’’ He was being facetious, but he was also making the point that if you are trying to capture some truth about people’s lives, you have to be there for long stretches where not a lot happens. I pretty much take notes on everything, just in case, and when something really perfect happens, even if I’m not consciously thinking “I’m going to use this,’’ I know it because my note-taking suddenly becomes frenzied.

It wasn’t until the very end of that day in Philadelphia, for instance, that an anxious mother whose teenager has autism asked Kirsten and Jack if they were going to stay together and get married. That question, and Kirsten’s answer, turned into a crucial scene in the story:

A mother who had slipped into the room put up her hand.

“Where do you guys see your relationship going in the future?” she asked. “No pressure.”

Kirsten looked at Jack. “You go first,” she said.

“I see it going along the way it is for the foreseeable future,” Jack said.

One of the teenagers hummed the Wedding March.

“So I guess you’re saying, there is hope in the future for longer relationships,” the mother pressed.

Kirsten gazed around the room. A few other adults had crowded in.

“Parents always ask, ‘Who would like to marry my kid? They’re so weird,’ ” she said. “But, like, another weird person, that’s who.”

It shows how Kirsten and Jack’s struggles are relevant to other young adults with autism, and also, I thought, how universal those struggles are. It also speaks to why Kirsten and Jack persevere with each other despite their difficulties. So that was one of those times when I’m just typing furiously, as fast as I can, because I’m worried about missing one crucial word and I’m cursing the fact that I don’t have a recorder on, which I never seem to at the most important moments.

SM: I find the writing process to be much more painful and difficult than reporting, which is the part I actually enjoy. Is that also true for you?

AH: I like the very beginning of writing, when you have the illusion that it’s going to go really fast, and it’s been awhile since you last wrote, and you’re kind of remembering that you enjoy playing with words. And I like the very end, when you’re not really writing, you’re polishing, and it feels like it’s getting better with not much effort.  In between, it’s torture. I mentioned my first favorite narrative journalism quote already – my second is from John McPhee. In an interview in The Paris Review, he talks about how he gets in at nine, and basically procrastinates until five – not by surfing the Web, or anything, just sitting there and TRYING to write.  And then at five, he starts to write, and then at seven, he goes home. “So why don’t I work at a bank and then come in at five and start writing?’’ he says. “Because I need those seven hours of gonging around.’’

I think of that pretty much every day at 5:00 p.m. when I am writing, to try to make myself feel better. When I was stuck and totally miserable on the “Navigating Love’’ story, Dean Baquet, the Times’s managing editor, instructed me write what Anne Lamott calls a “shitty first draft.’’ I hated that idea — but he’s the managing editor, and I felt like I better do what he said.

So I wrote this awful first draft — and it was kind of a revelation. Making the shitty first draft better was much more fun than trying to write a perfect first draft. Also, on that story, I started writing it on Dec. 5, the day after they got the cat, and I basically did not look up until it ran on Dec. 27. For me, that was very fast, and I think just working straight through the weekends helped, because it’s always hard for me to start writing again after I stop for a while. But I probably can’t do that too often and maintain cordial relations with my family.

SM: I had a similar experience once, but the editor telling me to stop being so precious was my mother. I was complaining about having writers block, and she made the point that I didn’t actually have writer’s block — I hadn’t forgotten how to write. I was just obsessing about every word I wrote being perfect. Ever since then, I’ve been aware of how much more comfortable I am revising something that’s already on the page than I am starting something new — even if revising really means taking something I was working on and completely rewriting it.

Switching gears: The Times has had a great website for a longtime — but this story really seemed to highlight some of what the paper is trying to do in terms of adding value to stories online. What was involved in putting together the video clips and images that accompanied the piece?

AH: What I loved about the pop-up video clips and images that we used in these stories is that the technology really grew out of the needs of the story. No matter how I tried, I could not convey in mere words how Justin sounded, how he moved, all the subtle—often totally endearing, sometimes off-putting—mannerisms that make people think “he is different.’’  And we didn’t HAVE to rely on my words, because we had this great video footage that had been taken to accompany the story. It was when we were viewing the video for that first story, which was going to run as a mini-documentary alongside the piece, that the idea emerged to make the video and pictures PART of the story, rather than just running in parallel.

To go back to your first question, all of that requires a lot of work by a lot of great and talented people. I’ll just list some so you get the idea: Kassie Bracken shot the video, Patrick Farrell edited the video, Fred Conrad shot the pictures, Josh Williams created the technology behind the “quick links,’’ Anne Leigh did the layout. I’m not even mentioning the editors in video, photo and multimedia. Then there were also MY editors: Barbara Graustark and Glenn Kramon, who spent many hours shaping the stories and making them much better, and Kayne Rogers, the copy editor, who polished them. It really is a big production, and I feel very fortunate to work at a place where I can do this kind of story and also have so many people make it better than I could ever hope to on my own.

SM: I think that about does it — at least until March, when you and Kurt Andersen will be up in Cambridge for the 10th Anniversary Celebration of MIT’s Graduate Program in Science Writing. Any last words?

AH: I’m now in the phase of looking for my next stories, and I’m remembering how important it is to find the right way to do it t at the outset.  Chris Jones, who has won a bunch of awards writing this type of story for Esquire, tweeted something the other day that made me feel justified in spending the time up front. “Idea, reporting, writing, editing. Each as important as the other, but harder to rescue the earlier you lose the string.” Scary and true. Wish me luck.

SM: Luck…

SciWriteLabs 7.2: The New York Times’s Amy Harmon on what it means to be a science writer

Posted on by
Reply

Seth Mnookin is a Lecturer in MIT’s Graduate Program in Science Writing. His most recent book, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy, was called a “tour de force” by The New York Times and “a book that should be required reading at every medical school in the world…a brilliant piece of reportage and science writing” by The Wall Street Journal.

He is also the author of the 2006 bestseller Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top, which chronicles the challenges and triumphs of the John Henry-Tom Werner ownership group of the Boston Red Sox, and 2004′s Hard News: The Scandals atThe New York Times and Their Meaning for American Media, which was a Washington Post Best Book of the Year.

Since 2005, he has been a contributing editor at Vanity Fair, and he blogs regularly at The Public Library of Science. For more information, visit his website or follow him on Twitter, Google+, or Facebook.

On Tuesday, I published the first of a three-part Q&A with Pulitzer Prize winning science reporter Amy Harmon of The New York Times’s. That conversation focused on “Navigating Love and Autism,” Harmon’s latest story from an ongoing series titled “Autism, Grown Up.”

Today’s entry looks at Harmon’s writing about autism as a way to address questions about what it means to be a science writer — and the amount of work that’s required behind the scenes to make sure that what ends up in print is responsible and reliable.

Background: Yesterday’s post on why Harmon’s story is so remarkable is here. These interviews are part of an ongoing project called #SciWriteLabs, which examines topics related to science writing and journalism. An introduction to the series can be found here; the rest of the entries are here. Amy’s mention of  The Panic Virus is a reference to my book about the controversies over autism and vaccines (out now in paperback), not this blog.

SM: Looking back at your career, it looks like your shift to focusing on science and technology occurred around the same time you began writing about autism (in 2004). Is that correct??

AH: I started writing about technology in the early-1990′s, in my first job out of college at the Los Angeles Times. I pretty much got the beat because I was using email to stay in touch with my college friends, and my editors, who were not familiar with this new “Internet” thing, thought that was super-cool. I was technically a business reporter, but I always felt like a bit of a fraud passing around my cards with that title because I wrote almost exclusively about the sociology of technology rather than the financial stuff.

My interest in autism/Asperger syndrome paralleled my entry to tech-writing in the sense that I had a personal interest in it, and you are right that my other science reporting spun off of that. (I got interested in all the implications of new consumer DNA tests after returning from maternity leave because I had been offered them when pregnant). But just like I felt I was masquerading as a business reporter I often feel like I don’t really have the right to call myself a science reporter, because I’m just writing about people through the prism of science.

SM: I find that fascinating: that you feel like you shouldn’t call yourself a science reporter because you’re writing about people through the prism of science (as opposed, I guess, to writing about neural pathways or synaptic misfires). I actually think that one of the things that makes your work so valuable is that it is so infused with science. Your work highlights how much background knowledge is needed to write about these issues responsibly.

Recently I was talking with some of my colleagues about the difference between a science writer and someone writing about a topic that happens to be related to science. I made the comparison to music writing: I started out my career as a rock critic. At the outset, I’d write features or do interviews with musicians, but I wasn’t really doing music writing because I didn’t have the experience or expertise to be able to talk intelligently and knowledgeably about the actual music. That took much more time and effort and work. (Another example: I recently wrote a piece for Vanity Fair about theGardnerMuseum inBoston; that doesn’t make me an art critic.) But you had to bring an enormous amount of scientific knowledge to these stories.

AH: Well, thanks – and you’re right, I shouldn’t underplay the amount of science reporting that goes into my stories, since it takes up an inordinate amount of my employer’s time. (Ed: Your time, too!) I also spend a fair amount of time feeling guilty for not giving credit in print to the scientists and other experts who help me ensure that the stories you so kindly termed “intimate” are also scientifically accurate. When you’re constructing a story using only scenes and dialogue, you can’t really quote experts: It breaks the flow.  I used to send apologetic emails before the story ran that made it sound like it had just not worked out for me to use their quote. Now I’ve taken to telling expert-y people up front, “Look, I’m not going to quote you. But I hope this will help average readers understand this topic you care about and would really appreciate your help.”

With this latest series of stories on autism, I was hugely fortunate that people like Dr. Catherine Lord, the director of the Institute for Brain Development at New York-Presbyterian Hospital and one of the true authorities in the field, continued taking my calls through the whole process. Cathy and I spoke on the phone on at least five separate occasions and exchanged a dozen emails. She also read drafts of paragraphs that I was concerned about. (I checked with her, for example, about whether Jack and Kirsten’s sensory issues reflected what is typical among people on the autism spectrum; about what is known of the biological basis for autism among people who have normal intelligence and language development like they do; and about whether she thinks it is true, as suggested in the story, that girls are under-diagnosed.)

What I meant about not being a “real” science reporter is that, unlike others I admire, I do not have a particular talent for translating the news scientists report in journals or at conferences into terms that make sense to the general public. So instead I try to discern the impact of science on people’s lives, and write about THAT. It doesn’t mean I don’t have to understand the science – I do – but at least I don’t have to explain it in so many words.

SM: Just yesterday, I was teaching a seminar to scientists here at M.I.T.about how to write for a popular audience. I was trying to lay out the differences between writing for a newspaper/magazine and writing for an academic journal. In an average paragraph in an academic journal, there might be five or six footnoted references indicating why the author(s) feels confident making those statements. I explained that in a more journalistic account, those footnotes aren’t there — but that the writer still needs to have that information at his or her fingertips.

AH: Yes, exactly. I often wish for footnotes. And not only for the science. I think the question “how does she know that?’’ can arise in the reader’s mind when I report on a scene where I obviously wasn’t present. I wish there was another layer of the story, somehow, where I could say, “Conducted separate interviews with everyone in the room to corroborate what was said and done in this graf,’’ or “I have the text of an email so-and-so sent spelling out the thoughts I am ascribing to him here,’’ etc.

SM: Moving on to a subject near and dear to my heart: You mentioned that at various points while you were working on this series, editors/colleagues asked about including a section on the vaccine controversy. Your reply (and I’m obviously paraphrasing here) was, ‘No, that’s been covered and it’s time to move on.’

AH: I cannot tell you how many times I silently thanked you for The Panic Virus and its definitive rebuttal of the idea that vaccines cause autism. And I mean that in a purely journalistic sense, aside from being a mother of a seven-year-old who and a member of society who wants kids to get vaccinated to avoid preventable illness and death.

By the time I began work on this, I felt like the science of the vaccine controversy had been so thoroughly put to rest by you and other great reporters (including Amy Wallace in Wired and Michael Specter in The New Yorker), that I could focus on what I was most interested in — the challenges autism poses for this generation of young adults (and for the rest of us) — rather than on its causes.

That said, I was making the case that this group is newsworthy in part because of its size, so I could not sidestep the question of why the diagnosis of autism has climbed so sharply since the 1980’s. This is where the reporting you’re talking about comes in – for what ended up as three sentences in the first story, I read at least a dozen journal articles, talked to the Centers for Disease control, the director of the National Institute of Mental Health, and several other epidemiologists, sociologists, psychiatrists and educators, including Dr. Eric Fombonne, a professor at McGill University who is one of the pre-eminent autism epidemiologists in the world, and Dr. Fred Volkmar, the chair of the Yale School of Medicine’s Child Study Center. I didn’t exactly mean for that research to be limited to three sentences. I wrote many long paragraphs, and edited them five different ways. But they all ended up bogging down the narrative, and at some point, after many hours of tinkering, I realized that I just didn’t need to spell it all out. I was confident enough – because of all that reporting – to condense it. And I added what might seem like an excessive number of  hyperlinks to the online version of the story so that readers who wanted to could see that evidence for themselves:

And Justin’s parents were not alone. As the condition’s hallmark behaviors became better recognized, many children who were previously designated as mentally retarded or just dismissed as strange were being given an autism diagnosis, a trend that has continued. Some experts also believe that the actual number of people with autism has been climbing.

I knew most readers would not actually be clicking through to these and some other links to sources I put in, to show the effectiveness of therapies like applied behavior analysis, for instance. And when the story went up on-line, an editor who way outranks me wanted to remove them, because he worried they would distract from the new  “quick” links we were introducing in the article, which popped up with video clips of Justin and photos of his artwork. But I kind of put my foot down, because I thought they were important. And when I came across this blog entry by science writer Marianne English after the story ran, I felt vindicated that least ONE reader had noticed (watch for your shoutout):

When talking about therapies and options for the condition, [Harmon] hyperlinks to peer-reviewed research to back her claims. I imagine she went to these lengths to battle misinformation that vaccines cause autism or that special diets can help people living with it. Writer Seth Mnookin also puts many of these claims to rest in a recent book with similar evidence…

SM: I don’t think it’s accidental that it’s another reporter who noticed that; the amount of background reporting and research effort that’s needed to do a good job is something casual news consumers often don’t realize.

AH: True. And not only news consumers! I am hugely grateful to the Timesfor letting me spend months on a story, but I know my editors sometimes wonder what, exactly, is taking so long. Because ironically, if you do the background reporting well in stories like this – whether it’s science reporting or other types of material that enables you to get inside the heads of your characters – you can’t SEE it in the story. The background reporting is what gives you the authority to write it – you have to do it, but then you have to hide it, too. As I was thinking about how to answer your original question, I started re-reading the stories, remembering the interviews I did to back up each line. There are so many people whose profoundly influenced the story but don’t show up in the actual text, people like Dr. Gerald Fishbach of the Simons Foundation; Kevin Pelphrey at Yale’s Neuroscience Laboratory; Eric Courchesne, the director of the University of California, San Diego Autism Center of Excellence; and literally dozens more. I’m grateful to be able to give them some small acknowledgement here.

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

Posted on by
Reply

Seth Mnookin is a Lecturer in MIT’s Graduate Program in Science Writing. His most recent book, The Panic Virus: The True Story Behind the Vaccine-Autism Controversy, was called a “tour de force” by The New York Times and “a book that should be required reading at every medical school in the world…a brilliant piece of reportage and science writing” by The Wall Street Journal.

He is also the author of the 2006 bestseller Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top, which chronicles the challenges and triumphs of the John Henry-Tom Werner ownership group of the Boston Red Sox, and 2004′s Hard News: The Scandals atThe New York Times and Their Meaning for American Media, which was a Washington Post Best Book of the Year.

Since 2005, he has been a contributing editor at Vanity Fair, and he blogs regularly at The Public Library of Science. For more information, visit his website or follow him on Twitter, Google+, or Facebook.

On December 26, The New York Times featured the second installment in “Autism, Grown Up,” an ongoing series by Pulitzer Prize-winning science writer Amy Harmon. The 5,113-word, front-page story, titled “Navigating Love and Autism,” chronicled 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.

Similar to Harmon’s first piece in this series, “Autistic and Seeking a Place in the World,” “Navigating Love and Autism” is an incredibly intimiate piece of journalism. It’s freckled with vignettes that wouldn’t feel out of place in short stories by Raymond Carver or Andre Dubus. But the intimacy and narrative flow shouldn’t obscure readers from the incredible effort that went into writing this piece – or the incredible amount of science reporting and research that allowed Harmon to be confident making the statements she made.

Over the last few weeks, I’ve 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; 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, 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 site dedicated to “the story behind the best science stories.”

 

New York Times science reporter Amy Harmon

 

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.”