The Autism ‘Recovery’ Study That Wasn’t?

Different Assumptions Can Yield A Very Different Conclusion

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.

Sorry, Hannah Gadsby, But It Fucking Well Is The Autism

Exploding The Other Myth Of Being Autistic

#ACTUALLYAUTISTIC 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.

Continue reading Sorry, Hannah Gadsby, But It Fucking Well Is The Autism

The Devastation Of ‘Eighth Grade’

Notes On A Dirty Little Secret

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.

Continue reading The Devastation Of ‘Eighth Grade’

Someones Are Actually Looking At Autism And PTSD

Could My Notion About How Trauma Gets Laid Down In Autistic Brains Be Right?

THIS MORNING, Spectrum announced that a piece by Lauren Gravitz from last September had won second place in the Awards for Excellence in Health Care Journalism. That piece? “At the Intersection of Autism and Trauma”, a look at the links between autism spectrum disorder and post-traumatic stress disorder.

For almost two months, I have been looking for a way to follow up a post I wrote about the “mini-traumas” of the monotropic brain. My reaction to the Gravitz piece was so intensely visceral, I gave myself a stomach ache.

Continue reading Someones Are Actually Looking At Autism And PTSD

The Choice Between Social Work And Social Control

Continuing The Search For Help For The Late-Diagnosed #ActuallyAutistic

ONE OF MY BIG ISSUES these days is whether or not forms of psychotherapy designed for the typical necessarily work for the atypical. It popped up again this week in a Spectrum piece on OCD and autism.

Three of the callers mention CBT, which can help people understand and manage their obsessions and compulsions. As with other talk therapies, though, CBT isn’t always effective for people with autism. The therapy did not help Slavin, for example.

He suspects that he was unable to follow his therapist’s approach due to his auditory-processing difficulties and cognitive inflexibility, which he attributes to his autism. “Many people on the spectrum have a problem picturing a situation and picturing how it could have a different outcome, so traditional CBT doesn’t always work,” he says.

A couple of things to mention here.

Continue reading The Choice Between Social Work And Social Control