The Parents Who Beat Up “The Kids Who Beat Autism”

A few weeks ago, Ruth Padawer’s cover story in The New York Times Magazine was “The Kids Who Beat Autism.” I had a feeling this one would rock the autism community as hard as anything since Ron Suskind’s book, and I was right. I didn’t post anything about it here because I wanted to wait to see how much outrage I could collect. The answer: plenty.

I wonder, when writers submit/plan a feature for the NYT, do they have any say over whether or not their article will be comments-enabled? Or is that an editorial decision? I’ve noticed that the more radioactive the topic, the less likely is the Times to invite reply. To me that’s rather short-sighted, because I don’t know any 20-year-old who trusts any site that doesn’t enable a comment-versation. But hey, I’m sure that’ll become obvious to them in the next ten years or so.

Meanwhile, here’s their half-measure. It says that they received “more than 450 responses” and breaks them down thusly:

I think I can summarize my reaction to this pie chart in three letters: WTF? How many is “more than 450” anyway, because – I realize this is anecdotal – it would not surprise me to hear that 1000+ people shot off emails to editor@nytimes.com. And then, how do you take those complex letters and turn them into this chart? Wouldn’t some people’s sentiments fall into more than one of these slices? (The numbers do add up to 100.) It almost seems designed to keep sowing confusion.

Having said all that, perhaps a little bit of confusion is actually appropriate in this case, because writing any big splashy article about autism is like throwing antelopes into a racquetball court of tigers. There was blood on the floor before the hooves were.

This and especially the comments are fairly representative. If you hang out enough in the autism community, you see a lot of blogs trying to be Emma’s Hope Book, which claims to have over 12,000 followers (probably true, but I don’t know how to verify it). In other words, people want to vent and have everyone come around and agree and maybe have blogger-reader back-and-forths. This space isn’t set up that way – at least not yet – because like the NYT, I don’t have comments enabled. For me, the pain is still too raw. I’m not ready to hear from everyone on the internet about Dar. Private emails are enough. Oh, by the way, here’s a post-“Kids Who Beat Autism” round of outrage on Emma’s Hope Book.

I don’t mean to write about blogs…I mean to tell you about all the parents who are furious about the notion of “recovery” or saying “there’s something wrong” with their child diagnosed with autism. Allow me to quote Steven Kapp, who lectures on autism at UCLA, and ain’t too happy with the NYT:

The New York Times Magazine article abandons pretenses of objective journalism in its headlining confidence that some autistic children “beat” autism…The publicity from this article puts further pressure on youth to keep up an act that may drain energy and cognitive resources that could go toward better use as coping skills, and as Lord notes, autistics may be particularly susceptible to the pressure of “getting to perfect.”…Individuals paraded as “optimal outcomes” demonstrate the dangers of pursuing normalization even within an article that spins and sensationalizes “beating” autism…Autistic people, and our families, deserve better than this irresponsible, appalling article.

More of the same sentiment can be found here, at wrongplanet.net, “the online resource and community for Autism and Asperger’s,” claiming more than 80,000 members. Though at least there’s a semblance of an argument there, as represented by one mom of two autistic boys who would love to hear them communicate. I’m impressed with that woman’s bravery. Most of the time, people like her get shut down.

I don’t know if the anti-recovery crowd is more numerous or just more vocal – kinda like all those internet-vocal fanboy lovers of a film like Sin City who couldn’t get the sequel to earn $7 million on its opening weekend. But I have to say that as the parent of a kid who I feel needs help, who I feel needs some kind of change, I feel like an “uncool kid” compared to the “cool kids” in the autism community being so shrill about “optimal outcomes” and the like. It really makes me want to unplug; my perspective doesn’t feel welcome to them, so why should I offer it?

I mean, I get it, it’s their truth, and they probably have a lot of reasons to be defensive against some snake-oil salesmen who judge their kids in terms of better and worse. But…the irony for me is that they’re yelling REMEMBER NUANCE and they’re so doctrinaire! We all have friends who, when the NYT does 3000 words on Israel that include criticism of Netanyahu’s policies, they have this “they’re anti-Semitic” rant all ready to go. Likewise if the subject of pornography comes up, there’s this Catherine MacKinnon-inspired “all porn is basically rape” rant ready to happen. But at least in those cases, the absolutist position has a certain logical consistency – they see the defense of Jews/women in Manichean terms. Here, they have this pedantic rant all set to go that’s like “look, the language of therapy doesn’t cover my child” – just seems strange to be so dogmatic when you’re saying people shouldn’t be so dogmatic.

By the way, much to the anti-recovery crowd’s chagrin, I’m not alone. Temple Grandin has said she wouldn’t want to be “cured” of autism, but she makes allowances for “severe cases” – she and I agree something needs to be done for them. I guess you could say Ruth Padawer is kinda with us – though trust me, she looked balanced to me, just like us two-state-solution-types don’t see criticism of Netanyahu as some kind of narrow-minded jeremiad. And then there’s this guy, writing in motherlode, who feels that there was a little too much outrage over Padawer’s article. Finally I’d like to offer this person, who did what I’d like to do, offer a balanced take. It’s not one or the other, as he says with several great examples. Love this sentiment of his:

From my experience, the message I’d have for my son is a little bit more nuanced than either “act normal” or “let your freak flag fly.” Something like “you can do and be what you want, with our unconditional support, but go into it with eyes open about how people will react” — and also “sometimes these strange socially-oriented people have a point, some of the stuff they do is fun in moderation, so don’t be afraid to go with the flow and try it sometimes.”

And then, he wrote this:

Kudos and criticisms for the NY Times article

Here are some things I’d change about this article.

The headline is terrible (autism as thing-to-be-combated).

It is from a privileged perspective — several families who could afford, or at least manage to somehow pay for, intensive therapies out-of-pocket.

It does not adequately explain the limitations of the “optimal outcome” studies.

It does not adequately question the “single unified disease” account of autism (even though these optimal outcome studies are one bit of evidence against that account).

It uses the language of disease, such as “recovery.”

It could have more subjective reaction from the “optimal outcome” people who were interviewed; what are their struggles and successes? What advice do they have for others?

I’d love to hear from a parent who didn’t go through a “warrior phase.” I’d identify with them more.

Here are some things I liked:

It is appropriately dismissive of nonsense “biomed” “cures.”

Autistic adults at least exist in the article (though they are not the focus).

It presents the science that a kid can meet the diagnostic criteria at one point, even very clearly so, but not at another point. It is helpful to state that autism follows many different trajectories and we do not know how to put people in two crisp, clean buckets (or any number of crisp, clean buckets). There’s a very harmful popular view —usually accompanied by a belief in “misdiagnosis” —that autism can and should be only “low functioning” while “high functioning” should be separated or not diagnosed. This popular view results in “not like my child” opinions and “autism is just an exaggerated excuse” opinions and “high-functioning kids don’t need services” opinions and “the world is full of moochers taking our tax dollars” opinions, and other such junk opinions. The article pushes back more than average on this kind of thinking.

It does present the neurodiversity perspective; though it’s presented in he-said she-said format without taking a strong stand, it is in there, and in most articles it is not there at all.

It includes Catherine Lord’s caution against “getting to perfect” and advice not to “concentrate so much on that hope that you don’t see the child in front of you.”

The closing realization from a parent that “He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him.”

Overall, I felt that the average person would come away with a more accurate view of autism after reading this than they had before. They would start to ask some of the harder questions. They would be exposed to ideas such as neurodiversity. It’s a lot better than the average newspaper article about autism, low as that bar is.

I believe our understanding of autism needs to become significantly more complicated (see this post about Lynn Waterhouse’s book. and some thoughts on “misdiagnosis”). This article felt like it went in that direction.

It’s a lot better for a parent to believe that “some kids struggle a lot less than others, for unknown reasons which may include lots of practicing skills” than to believe “I need to cure my kid using chelation and bleach.” Yes this article says “beat” and “recover,” but the closing paragraph is a mom saying that warrior attitude was a mistake.

As I read it, the article does not advocate the warrior approach; it is quite clear that 90% of kids will not “recover”, and that these “optimal outcomes” are largely unexplained (rather than because a parent did such-and-such).

I thought Ruth Padawer tried harder than most reporters do. I appreciated the effort.