Seth Mnookin's Blog, page 6

Autism roundtable, part 2

Just a head's up to anyone who gets The Panic Virus via an RSS feed: part 2 of my roundtable with Ari Ne'eman, Shannon Des Roches Rosa, John Elder Robison, Todd Drezner, and Steve Silberman is now up on The Huffington Post.

sciseekclaimtoken-4f231515a11f5

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

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.

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.

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 will appear tomorrow on The Huffington Post; I'll update this with links when that goes live. (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.

Greetings from SciO12…

Mid-January is among my favorite times of the year because it's when the annual ScienceOnline conference is held in Research Triangle, NC. For those of you who don't know about the conference, "ScienceOnline2012: The Unconference, the Community" is an great primer by the irrepressible Bora Zivkovic.

Unfortunately, the conference isn't being livestreamed, but by following the #scio12 hashtag on Twitter, you can get a pretty good handle on what's going on.

Tomorrow, I'll be taking part in the closing plenary panel, "Check, check, 1, 2…The sticky wicket of the scientist-journalist relationship" — here's Bora's very worthwhile breakdown of some of what will come up during that session, which will address a lot of the issues that have been discussed in the SciWriteLabs series. In addition to me, it includes some kickass panelists: Bora, fellow PLoS blogger/NC Museum of Natural Sciences communications guru David Kroll, and Boing Boing's Maggie Koerth-Baker. If you're at the conference, make sure you say hi.

“Vigilante for truth”: An accurate headline…or shameless Twitter bait?

Earlier today, New York Times public editor Arthur Brisbane caused a bit of a kerfuffle when he posted an (online only) piece titled “Should The Times Be a Truth Vigilante?” “I’m looking,” Brisbane wrote, “for reader input on whether and when New York Times news reporters should challenge ‘facts’ that are asserted by newsmakers they write about.”

Judging from my Twitter feed, the response among my peers to Brisbane’s question has been fairly unanimous: Are you f-ing kidding me?

On the one hand, I agree with this sentiment: If reporters’ jobs isn’t to ferret out the truth, what, exactly, are they doing? In fact, I think the willingness to regurgitate outrageous (and false) claims using a pretense of journalistic objectivity is a huge problem in reporting about politics, science, and medicine. One of the things I rail against in The Panic Virus is the reporters who justified publicizing unfounded (and in many cases disproven) claims by saying they were just being fair to “both sides” of an issue.

However, this isn’t that easy a discussion — as evidenced by the first example Brisbane gives in his piece:

One example mentioned recently by a reader: As cited in an Adam Liptak article on the Supreme Court, a court spokeswoman said Clarence Thomas had “misunderstood” a financial disclosure form when he failed to report his wife’s earnings from the Heritage Foundation. The reader thought it not likely that Mr. Thomas “misunderstood,” and instead that he simply chose not to report the information.

In this situation, I don’t think it’s so easy to simply say, “Thomas was lying.” The most obvious reason for this is we don’t know that’s true. The question then becomes how does one best convey the reality of the situation? Maybe I’m an outlier here, but to my eyes, it seems fairly clear that Liptak wanted his readers to understand that he was dubious of Thomas’s claim — hence the scare quotes.

In fact, considering he’s writing about the implications of misrepresenting facts, I think Brisbane’s biggest problem is the use of a Twitter-bait headline that doesn’t really reflect the question at hand. Of course the Times should be a vigilante for the truth. The question is what, exactly, that entails.

"Vigilante for truth": An accurate headline…or shameless Twitter bait?

Earlier today, New York Times public editor Arthur Brisbane caused a bit of a kerfuffle when he posted an (online only) piece titled "Should The Times Be a Truth Vigilante?" "I'm looking," Brisbane wrote, "for reader input on whether and when New York Times news reporters should challenge 'facts' that are asserted by newsmakers they write about."

Judging from my Twitter feed, the response among my peers to Brisbane's question has been fairly unanimous: Are you f-ing kidding me?

On the one hand, I agree with this sentiment: If reporters' jobs isn't to ferret out the truth, what, exactly, are they doing? In fact, I think the willingness to regurgitate outrageous (and false) claims using a pretense of journalistic objectivity is a huge problem in reporting about politics, science, and medicine. One of the things I rail against in The Panic Virus is the reporters who justified publicizing unfounded (and in many cases disproven) claims by saying they were just being fair to "both sides" of an issue.

However, this isn't that easy a discussion — as evidenced by the first example Brisbane gives in his piece:

One example mentioned recently by a reader: As cited in an Adam Liptak article on the Supreme Court, a court spokeswoman said Clarence Thomas had "misunderstood" a financial disclosure form when he failed to report his wife's earnings from the Heritage Foundation. The reader thought it not likely that Mr. Thomas "misunderstood," and instead that he simply chose not to report the information.

In this situation, I don't think it's so easy to simply say, "Thomas was lying." The most obvious reason for this is we don't know that's true. The question then becomes how does one best convey the reality of the situation? Maybe I'm an outlier here, but to my eyes, it seems fairly clear that Liptak wanted his readers to understand that he was dubious of Thomas's claim — hence the scare quotes.

In fact, considering he's writing about the implications of misrepresenting facts, I think Brisbane's biggest problem is the use of a Twitter-bait headline that doesn't really reflect the question at hand. Of course the Times should be a vigilante for the truth. The question is what, exactly, that entails.

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

Last 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 about in an ongoing series titled “Autism, Grown Up.”

Today’s entry focuses 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: My December 28 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 the Gardner Museum in Boston; 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 Times for 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 7.2: The New York Times's Amy Harmon on what it means to be a science writer

Last 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 about in an ongoing series titled "Autism, Grown Up."

Today's entry focuses 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: My December 28 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 the Gardner Museum in Boston; 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 Times for 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

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."

It really is bizarro day: Andrew Wakefield sues Brian Deer, BMJ

Late yesterday, I got word that Andrew Wakefield — the the anti-vaccine leader who has lost his medical license, drew blood from his child's friends at a birthday party, headlined a rally with 9/11 Truthers, and had his signature paper retracted — sued investigative journalist Brian Deer and British Medical Journal editor Fiona Godlee. For defamation. In Texas.

That's not a joke (and, as Amy Wallace can tell you, no matter how ridiculous a lawsuit might seem, it can still be incredibly painful and time consuming to deal with). The PDF of Wakefield's complaint is online; this section actually made me laugh out loud:

The Defamatory Statements were and are false and written and published with actual malice and intended to cause damage to Dr. Wakefield's reputation and work as a researcher, academic, and physician and to permanently impair his reputation and his livelihood.

I haven't had a chance to dive into this yet, but Orac at Respectful Insolence and Sullivan at Left Brain/Right Brain have the goods.

Has the Huffington Post embraced science & closed the door on anti-vaccine quackery?

When I launched my Panic Virus blog on my own site back in December 2010, the second piece I posted was titled "The Huffington Post: Featuring bad science, facile reasoning since 2005." The takeaway of that piece could be summed up with this sentence: "The site arguably features more scientific quackery than any other mainstream media outlet."

For whatever reason, HuffPo seemed to have a particular bee in its bonnet about vaccines and autism: If you made a list of the most irresponsible, misinformed people on the topic, it was a safe bet the majority of them had been given space for their rantings on the site. David Kirby? Check. Robert F. Kennedy, Jr.? Check. Jim Carrey, Jenny McCarthy, Jay Gordon, and Kim Stagliano? Check, check, check, and check. There were days when the site's main prerequisites for getting published seemed to be either a hatred of Republicans or a love of pseudoscientific quackery.

This is a theme I've returned to again and again (and it's something Orac has been detailing for almost half a decade. To wit:

* Feb. 07, 2012 (sethmnookin.com): "Let me state very simply: HuffPo publishes dangerously ignorant dreck"

* Feb. 11, 2012 (sethmnookin.com): "The Huffington Post's medical review board signs off on vaccine fear mongering"

* Feb. 11, 2012 (Scientific American): "The Huffington Post and the ongoing fear that vaccines might cause autism"

* May 5, 2012 (PLoS Blogs): "Pre-mature optimism about a Huffington Post shift away from anti-vaccine rhetoric"

So I was somewhat surprised when a new HuffPo editor approached me about contributing to their about-to-be launched science section. It would be, he promised, a marked departure from what the site had featured in the past. Ultimately, I decided it was worth a shot…and so today, I have a new piece titled, "The Autism-Vaccine Controversy and the Need for Responsible Science Journalism." In it, I talk about "the legacy of years of dispatches that created a false equivalency between verifiable facts and…outlandish allegations," and I implicitly (and in one instance explicitly), point to HuffPo's own past.

It'll be interesting to see how this all plays out. The piece has only been up for a few hours and already the comments section is swarming with anti-vaccine misinformation and fear-mongering. I figure a worst-case scenario is the site uses the fig leaf of "balance" and posts another anti-vac screed in the next day or so…in which case, lesson learned. But I'm hopeful this really does signal a new direction from an indisputably major player in the new media world.