Sunday, October 19, 2014

Newsweek misrepresents autism and misrepresented me

Update, 10/23/2014: The article now features an updated headline that is an improvement on the initial choice, although the URL still contains the original wording. In addition, they've corrected some language around the paragraphs involving an article of mine, and they no longer read as though I accused a fellow scientist of "cashing in" on her work. It has been brought to my attention that in that context, my self-perception was of a scientist being viewed as unjustly accusing another scientist of "cashing in" and being accused of not having read a research article sufficiently, both greater professional offenses than being an op-ed writer--which is also a reasonable interpretation--saying the same or being accused of the same. So while the factual correction was needed, a request to me for comment would have been more of courtesy than a professional necessity. Such was the nature of carrying on dual careers.

I'm hoping now that some autistic bloggers or engaged parents will address in greater detail than I the article's shortcomings in the context of broader media influence and perceptions of autistic people.
Newsweek's featuring a new article about autism. When you finish girding your loins or gathering your spoons, take a look at it. OK. Forget the horrible outline. No, wait. Don't forget it. Substitute in "Did a son's paraplegia drive a woman to murder?" or "Did a son's deafness drive a woman to murder?" How does it feel at your moral center, that offhand reference to a child's disability driving a parent to murder? Seem ethical, right, OK, defensible to you? Keep in mind that the son in question was an 8-year-old boy. What feature, what characteristic, of any child would justify a headline claiming that it could "drive" a woman to murder?

No need to turn to disability for blame, of course. The person who drove that woman to murder is the woman herself. At least in this case of a woman who was fabulously wealthy and very unwell who murdered her autistic son, no one could argue that a lack of resources was an issue, as others so often try to do. I imagine that plenty of people will address in necessary detail the rest of the problems with the article, including the egregious language regarding autistic people and presumptuous determinations about what qualifies as a worthwhile life. The discerning reader will be able to do that, as well, thanks to terms like "ravages" and "illness" and the tiresome and easily disproved assertion that only "high-functioning" autistic people have an interest in or benefit from the neurodiversity movement. It's the usual dimissive writing about real people, written by a person who appears intent on interpreting and writing about autism in the most retrograde, willfully misapprehending way possible. Let's just say that the article is written as though 10, 20 years of autism research, understanding, and activism never even happened.

The writer of the article, Alexander Nazaryan, however, is proud of it. Naturally. It's a "longread," which is the new black of online writing. He's talked to autistic kids, my friends, autistic kids who, by golly, can discourse on the Mezozoic or can only moan. This is rich, layered stuff here, folks, with that awesome human interest angle of how that mystery of mysteries, that fascinating puzzle piece snuggled into a baffling blanket of engima can so understandably drive a wealthy, entitled, mentally ill mother to murder her eight-year-old child. Right?

He's tweeted out a link with the assertion that "The murder of an 8-year-old by his mother lays bare the ravages of an autism diagnosis." He seems unable to grasp the fact that the real, fundamental reason an autism diagnosis is "ravaging" isn't the autism itself, which by the time a child is diagnosed will typically have been around for years, but the way the news media--precisely the way he himself and his magazine--present it as "ravaging," devastating, mysterious, impossible to understand, and as justification for murder. Ignorant members of the news media have long perpetuated the 'autism as ravager, monster, thief of your child's true self' narrative, and what parent wouldn't, in the absence of any other exposure, not find that terrifying? In fact, what Nazaryan's article lays bare is the ravages of the news media against autistic people, a violation that some seem bent on committing over and over and over again. So much harm done.

All of that is personal to me and personally offensive and also, as time has made abundantly clear, generally dangerous to autistic people and their families. But there's a little more, something much more limited but still important to me. For reasons that are a smidge unclear, Nazaryan inserted my name into his longread like some randomly gathered and pasted bit of paper from a paper shredder, right in the middle, along with the name of a fellow contributor of mine at Forbes. He namechecks the two of us while writing about an autism researcher, Judy van de Water, who like all researchers has her own ideas that she fosters in her own corner of the research world where she produces work that supports those ideas. Some of her results aren't terribly compelling to me, and they weren't to my fellow contributor, Steven Salzberg, either.

A little over a year ago, each of us wrote a piece addressing some published work from van de Water's team. My article is here, and Steven's is here. In my article, I take a close look at the research paper in question and analyze the data, tables, and findings and comment on how poorly the news media interpreted it. In addition, for this article, I consulted with a couple of other autism researchers, one of whom I cite, and reference the work of another science writer. My analysis is sincere and serious, and I end it with some questions that I think must be answered before findings related to maternal antibodies and autism can be considered compelling. Here's how Nazaryan characterizes what I wrote:
“They didn’t really read the paper carefully,” (van de Water) says of her critics, including two science journalists for Forbes, Steven Salzberg and Emily Willingham, who seemed to take particular relish in dismantling the maternal antibody findings while accusing van de Water of “cashing in” on her work. They are as vehement in their convictions as van de Water is in hers.
See that part where she's quoted as saying, "They didn't really read the paper"? I cite data from the paper in my article. I analyze several elements of the paper in detail. I link to the open access version of the paper. It is clear that I read the paper and that I read it carefully. And I don't rely only on what I intepret but include an interpretation from another autism researcher. And here is this accusation, in Newsweek, that I didn't read a paper that I then wrote about, which is a pretty serious accusation to make against a science journalist--and did Nazaryan contact me to ask about how I might respond to this published accusation? No. He did not.

Of course I read the paper. And so did Salzberg, a computational biologist and professor at Johns Hopkins and someone who, yanno, might be expected to both know how to read a research paper and evaluate the math. 

And then there's that other assertion, the one where Nazaryan avers that Salzberg and I took "particular relish" in dismantling the findings while "accusing van de Water of 'cashing in' on her work." Salzberg used the phrase "cashing in" in his headline, but I did not use it anywhere, and I make no allusions to anything of the kind. In addition, I can't speak to Salzberg's personal relish, but nothing in what I wrote implies "relish" at dismantling, and while I understand that vehemence is in the eye of the beholder, I don't detect vehemence in my post. It's an analysis of the work, a serious one about a serious subject that can have serious consequences, and one that I didn't leave in my own hands but also double checked with another scientist.

I take issue with being misrepresented in this way in a reported article in Newsweek, without a request for response to an accusation from a quoted source, without confirmation of the "relish" in what I wrote, and with an outright misstatement that I accused another scientist of "cashing in" in this instance on some aspect of her research. I believe that Newsweek owes me a correction on that score. But that's nothing compared to what Newsweek owes the autistic community, part of a debt that the news media have been accumulating for years.