April 2019

Last month, a study dropped (Google cache because U.K. Ed Chat has since deleted their article) in Journal of Child Neurology brazenly entitled, “When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?”

“It’s certainly encouraging to confirm that a subset of children with early ASD diagnosis accompanied by developmental delays can in essence recover from the disorder and go on to have typical social and cognitive functioning,” said lead author Lisa Shulman, M.D., professor of pediatrics at Einstein and interim director of the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center (CERC) at Montefiore. “But by and large, these children continue to struggle with daily life. Almost all of them still have to contend with language and learning disabilities and a variety of emotional and behavioral problems.”

The short version: the records of 569 autistic kids were studied, from diagnosis around two years old to followup around six years old. The “vast majorty” of them had received some form of early intervention, such as Applied Behavior Analysis. At study’s end, only 7% (38 children) were deemed to have “recovered” while nonetheless having to “contend with language and learning disabilities and a variety of emotional and behavioral problems”; only 3 kids (about 0.5% of the original 569) were deemed to have “recovered” without having to contend with other problems.

According to the study’s lead author, Lisa Sherman, this shows that it is possible to cover from autism.

What I don’t get is how that’s the inevitable conclusion, rather than the conclusion to be drawn only if you first make some initial–and very circular–assumptions. To wit: you first have to assume that recovery is possible in order for these results to tell you that recovery is possible.

There’s another way to read these results: early intervention treatments, such as ABA, don’t work. For one thing, more than 90% of the kids apparently continued to be diagnosed as autistic at the end of the study period, calling into qustion the effectiveness of ABA-style interventions.

More interestingly, perhaps: the fact that 7% of the kids “recovered” but nonetheless had to contend with myriad other problems doesn’t immediately mean that recovery is possible. Those numbers instead also could be looked at to mean, worst case scenario, that early intervention treatments such as ABA actually damage autistic kids. (There’s only correlation here, but it’s at least as valid an explanation based upon these results as is “recovery”.)

There are some revealing bits in the Wall Street Journal article published shortly after the study was released.

She says it’s hard to determine if these children who outgrow their diagnoses do so because of their own natural progression or in response to early intervention. The children who do usually have the mildest cases. Another possible explanation: Some children were misdiagnosed.

Children who are no longer diagnosed with ASD show improvements with communicating and interacting with other people, which can include more eye contact and an easier time with back-and-forth conversations.

Unpack this and you see the problem making some initial assumptions can cause.

Let’s take the last part first, which assumes that children who become capable of mimicking neurotypical communication behavior must necesssarily have “recovered” from autism rather than, perhaps, merely been forced to suppress the ways in which their atypical neurology normally and naturally would be expressed.

Then let’s back up to the previous paragraph. Shulman assumes that “outgrowing” the diagnosis only can be a result of “natural progression” or “early intervention” or an original “misdiagnosis”. It can’t possibly, to her mind, be the result of the forceful suppresion of the kids’ natural neurological differences while those differences themselves still remain.

It’s an echo of how Shulman restricts the potential options to be considered in the study paper itself.

Though it has been reported in multiple studies that a small subset of children with early ASD improve in terms of their social functioning and no longer warrant a diagnosis of autism, this persistent finding continues to beg several questions: Was autism overcalled in these children to begin with? Are some children better able to respond to intervention? Does the specific intervention the child receives contribute to outcome? All are possible. Based on our experience, our sense is that the symptoms evolve—in some children in response to intervention, in others due to their individual developmental trajectories.

Rather, if what’s happening through some form of early interventions is that we are forcing a person with one neurology to outwardly behave as if they have a different neurology, Shulman’s results very easily can be used to draw the conclusion not that recovery is possible but that this sort of forced artificial, superficial recovery is itself contributing to leaving some kids with “language or learning disabilities”, “externalizing behaviour problems”, “internalising behaviour problems”, or “a significant mental health diagnosis”.

The missing data here, of course, is the early intervention treatment breakdown across those 569 kids, including the 7% of kids who “recovered” with problems, and the 3 kids who “recovered” without problems. We don’t know, specifically, what sorts of treatment each segment received. That data isn’t just missing here, it’s missing in the published paper itself.

Which means Shulman’s assumptions have blocked even the rest of us from examining how those different early interventions could feed into the results.

You can’t engage in a study like this assuming that recovery is possible. You can accept that many parents and caregivers believe it is, and then study what’s happening when they try, but you can’t begin with the assumption that recovery is possible and then only look at the results through that lens. You have to examine all the possible reasons for the results you get.

One last point, also from the WSJ piece.

Children who are later diagnosed with disorders like psychosis or anxiety may have had them all along. But such conditions are hard to diagnose before children can speak well, Dr. >Shulman notes.

This is one of the glaring deficiencies of studies like these: the subjects can’t speak for themselves, to speak to what these early intervention treatments have or have not done for them or to them. It’s almost always based on the external evaluations not just of doctors but or caregivers–which is one of the reasons “behaves like a typical kid” is deemed to be a success for early interventions.

I hope other researchers are looking skeptically at studies like this, whose results do not inherently yield what their authors claim.

Suddenly folks are steaming over a newly-posted synopsis of the live-action adaptation of Akira, with Screen Rant, ComicBook, CBR, Heroic Hollywood, and Bleeding Cool all stoking the fires of fandom ire over a description published in Production Weekly.

When a young man’s telekinesis is discovered by the military, he is taken in to be turned into a super weapon and his brother nuts [sic] race to save him before Manhattan is destroyed by his powers. Kaneda is a bar owner in Neo-Manhattan who is stunned when his brother Tetsuo is abducted by Government agents lead by the Colonel. Desperate to get his brother back, Kaneda agrees to join Ky Reed and her underground movement who are intent on revealing to the world what truly happened to New York City 30 years ago when it was destroyed. Kaneda believes their theories to be ludicrous, but after facing his brother again is shocked when he displays telekinetic powers. Ky believes Tetsuo is headed to release a young boy. Akira, who has taken control of Tetsuo’s mind, Kaneda clashes with the Colonel’s troops on his way to stop Tetsuo from releasing Akira, but arrives too late. Akira soon emerges from his prison courtesy of Tetsuo as Kaneda races to save his brother before Akira once again destroys Manhattan island as he did thirty years ago.

Had even just one of these pop culture writers taken sixty seconds on Google, they’d have learned that this synopsis dates back to August 2011 during an earlier phase of Hollywood trying to make the Akira production happen. It resurfaced that November with purported casting information.

Instead, pop culture sites and Twitter are awash in claims not only that this is a new synopsis but that it’s specifically Taika Waititi’s synopsis–one claim being false and one claim having no evidence.

While the worldly impact of cable news obviously can be worse than that of any constellation of pop cuture websites, this is a perfect example of what used to drive me crazy when I blogged regularly about pop culture: the jouralistic practices of pop culture websites are absolutely, resolutely terrible.

I don’t even care about Akira, especially. But I am–and this annoys me as much as it probably does you–like a dog with a bone when it comes to garbage pop culture reporting.

This is what happens when pop cuture websites and their writers behave as little more than third-party publicists: it’s about making sure you’re sharing whatever’s out there about this or that product as quickly as you hear something, and almost never about making sure what that you’re telling people is true.

Actually-autistic folks on Twitter love to “explode myths” about autism, and they’re pretty good at it. They explode myths about communication, about empathy, about romance. If there’s a myth out there about autistic people, it’s regularly and routinely exploded.

There’s one myth, though, that they rarely seem interested in exploding, because I guess doing so wouldn’t fit the preferred narrative.

Autism is overwhelming. So people see the distress of it. But often in a lot of those distresses we’ve been dragged out of our little thought orgies, having a great time in our heads. Nobody sees that, and I don’t see that celebrated. It is different and it is not all sad. [People think] it’s a devastating existence. And it doesn’t have to be: It’s not autism that makes it difficult to live with autism. It’s the world we’ve created that is not geared in our favor.

That would be Hannah Gadbsy, the latest celebrated celebrity autistic person, in a piece for The New York Times, repeating this myth. It’s there right at the end.

Sometimes, it is autism that makes it difficult to live with autism. Or, to use my preferred language: sometimes it is being autistic that makes it difficult to live with being autistic.

My meltdowns are not the world we’ve created not being geared in our favor. My forgetting to eat or shit because hyperfocus is not the world we’ve created not being geared in our favor. My sensitivity to the bright, hot summer sun is not the world we’ve created not being geared in our favor. These things are being autistic making it difficult to live with being autistic.

That’s fine, of course. Everyone, neurotypical and atypical alike, has their problems to deal with. I just can’t stand that so many actually autistic people let stand this one particular myth.

There’s a lot to be said for the social model of disability, but it simply does not account for the entirety of the autistic experience. Meltdowns are disabling. Hyperfocus, to an extent, is disabling. Sensory sensitivities (which, no, are not all about human-caused stimuli) of course can be disabling.

Absolutely none of that is social.

I’ve talked before about how as much as recognizing my experiences in those of others online has been something of a godsend since my midlife diagnosis, I also often feel like an outsider even among the autistic. This is one of the reasons why.

Being autistic in and of itself can be disabling. Being autistic in and of itself can be difficult. I will never understand the compulsion to pretend otherwise, nor the willingness to overlook the harm that compulsion can bring to other autistic people seeking understanding, acceptance, and support.

Sometimes it is autism that makes it difficult to live with autism. Sometimes it’s the world autistic people have created that is not geared in some of our favor.

Last week, someone on Twitter asked their followers what lines have stuck with them or even become part of their personal philosophies.

I came up with two right off the top of my head: “There’s only one rule that I know of, babies—God damn it, you’ve got to be kind.” (Kurt Vonnegut, God Bless You, Mr. Rosewater) and “This is an awful place to be dropped down halfway.” (Richard Powers, Galatea 2.2).

The former can be too broadly read and misapplied to, say, defend tone policing, but really, for me, it simply speaks to a good place from which to start, and then let the reality of events dictate straying from the premise.

The latter I think can speak to or for anyone who feels as if they have been brought into a world that didn’t bother preparing a proper space for them.

There’s another line that’s stuck with me, a new one, that I didn’t bring up on Twitter because it’s been waiting for me to write about it at a bit more length. Several weeks ago I finally watched Eighth Grade, and it’s near the end, asked by Kayla of her father.

“Do I make you sad.”

It’s easily the single most devastating line I have ever heard uttered in a movie.

The dirty little secret of my midlife autism diagnosis is buried in the way I talk about how prior to that diagnosis, I’d spent the last decades feeling like a failure and a fuckup, as most everyone around me was navigating life in ways I repeatedly could not, with no one understanding that there were reasons and explanations, and potential routes of accommodation and mitigation had we only known.

Here’s the dirty little secret, to which I can almost guarantee they would not confess: my family thought I was a failure and a fuckup, too.

Every time, for instance, someone would bring up a skill or talent I’d been able to display in one, discrete (and usually self-directed) circumstance and ask why I can’t apply it to something else, or for someone else, or all the time, the subtext was, “What’s wrong with him?”

I don’t talk about this now, here, as a judgment or to levy guilt. I’ve written here before about guilt over the lack of diagnosis is useless.

Instead, it’s just that I need it to be clear: I felt like a failure and a fuckup, and the people around me thought that about me, too. Pretending otherwise also is useless.

Kayla in Eighth Grade clearly has something happening with her. The film’s text does not talk about whether it’s autism, or “just” social anxiety, or some other issue. I can’t believe it’s simply the process of growing up. There’s a disconnect between how she functions and how the world around her functions that just doesn’t seem to me to be a slice-of-life “coming of age” story.

It never addresses at all the idea that she might need help.

I had a nightmare the other night about my father, who died over a decade ago. I’ve had a few, now and then, since my diagnosis, because I’ve no way of knowing what he would have thought, or to what degree in the decades prior to his death he was thinking, “What’s wrong with him?”

What sticks with me about Kayla asking her father if she makes him sad is that I don’t believe his answer, but I also don’t know if it was possible for him to tell the truth.

Or, maybe she doesn’t make him sad today, but if she’s having the same struggles in five years, ten years, twenty years?

I dont think there’d be any truthful answer other than, “Yes.”