I am a parent to a teenager with Asperger's. Er, wait, excuse me -- thanks to the recent DSM revisions, I'm not supposed to say that anymore (even though my son strongly self-identifies as an "Aspie"). I am a parent to a teenager with high-functioning autism. As you might expect, I read a lot of articles about Autism Spectrum Disorders (ASDs), the various quackery that runs amok in the autism world, etc.
So it was with great interest (though perhaps greater trepidation) that I saw this article in the Journal of Child Psychology and Psychiatry titled, "Optimal Outcome in Individuals with a History of Autism". The title itself is benign enough, but the article is being circulated through social media channels with attached comments like "Autism is curable!" and "See, some kids do outgrow autism!" And then my interest quickly turned into a great big, "Oy!"
Before we look at the article, let's all be clear on what autism is. The new criteria for an Autism Spectrum diagnosis in the DSM-V was a matter of hot debate (for a quick overview of the differences between the DSM-IV and DSM-V differences, here's a good comparison), but the two main areas of impact are Social Communication (which includes things like language delays/disorders and broader issues like social difficulties) and Repetitive Patterns (of interests, movements, habits, etc). In the old DSM, there were three areas, and in the new one, there are these two (the Social area having enveloped the language piece which was formerly separate). In order to meet the criteria for an ASD, currently, a diagnostician has to assess a patient as having significant impairment in both areas. But within the umbrella of ASDs, of course, there is a wide spectrum of abilities and levels of impairment.
My son, for example, is often termed as having high-functioning autism because his level of day-to-day impairment is relatively minor. (The opposite of this, by the way, is often called low-functioning autism, which is a term I really dislike. I've taken a cue from fellow BlogHer Editor Shannon Rosa and prefer her term of "high-octane" autism, instead.) There's no question that he meets diagnostic criteria for an ASD diagnosis; he experiences social difficulties, pragmatic speech impairment, and has repetitive and intense interests and all of the "quirky" behaviors that my fellow ASD parents know and love. But on a good day, my son can "pass." That is, he can appear, to the untrained eye, to be completely neurotypical. If he's happy and nothing unexpected has happened and he's in a situation where he's comfortable, for an hour or two or maybe even a whole chunk of a day, his behavior could appear indistinguishable from that of his "normal" peers.
Now let's get back to this article that has everyone wondering if you can "outgrow" autism. My knee-jerk response to that question is not just, "No," but more like, "Hell, no!" Although research is ongoing, autism is largely understood at this point to have underlying genetic and neurological differences. Studies like this one on gene expression differences in autism continue to support the understanding that autism starts with biological, unchangeable differences.
But is this what the study in question is asserting, that autism can be outgrown? To the researchers' credit, they are very careful never to say it quite that way. And their question for exploration seems reasonable enough:
Although autism spectrum disorders (ASDs) are generally considered lifelong disabilities, literature suggests that a minority of individuals with an ASD will lose the diagnosis. However, the existence of this phenomenon, as well as its frequency and interpretation, is still controversial: were they misdiagnosed initially, is this a rare event, did they lose the full diagnosis, but still suffer significant social and communication impairments or did they lose all symptoms of ASD and function socially within the normal range?
Later, they conclude, "Although possible deficits in more subtle aspects of social interaction or cognition are not ruled out, the results substantiate the possibility of OO [optimal outcome] from autism spectrum disorders and demonstrate an overall level of functioning within normal limits for this group."
Let's start with the study methodology. In this experiment, the researchers used 34 participants who appeared to fall into the Optimal Outcome (OO) group (that is, they had previously been diagnosed with an ASD but appear to no longer meet diagnostic criteria), 44 participants with high-functioning ASDs (HFA), and 34 participants determined to be Typically Developing (TD). All participants ranged in age from 8 to 21. On the face of it, this sounds like a reasonable sample size. Not huge, but not terrible. On the other hand, when you consider the span of development that happens between the ages of 8 and 21, it suddenly feels a lot smaller if you're a little skeptical of lumping together all of those age ranges (which, in case it's not abundantly clear, I am).
Next, participants were assessed via "two or three sessions" and self-reporting (or parent reporting). Full details of the assessments used can be found within the article itself. While there's nothing wrong with these tests -- indeed, they can lend valuable insight -- when you're talking about things like social difficulties, even the best test is no substitute for field observation. There's a reason that an individual cannot be diagnosed as having an ASD through testing alone -- interaction and observation are a crucial part of the process.
Let's look at some of the conclusions drawn in this study.
Thirty-four OO participants had a clear documented history of ASD, yet no longer met criteria for an ASD as per the ADOS and clinical judgment. Sex, age, nonverbal IQ, and handedness did not differ among the three groups. VIQ was 7 points lower in the HFA group than in the TD and OO groups, which were virtually identical and in the high average range. OO Communication and Socialization ADOS scores did not differ from the TD scores, although seven OO participants were judged to have social functioning mildly affected by nonautism conditions, such as anxiety, depression, or impulsivity [emphasis mine]. The number of OO and TD subjects who showed total social and communication ADOS algorithm scores above zero were not significantly different.
The first place I take issue here is with the assertion that anxiety/depression/impulsivity are somehow completely unrelated to ASDs. I mean, yes, those are not part of the autism diagnostic criteria. But all of those conditions are considered associated symptom domains, meaning that you are highly likely to find them along for the ride with ASDs. So noting that "Hey, this group that is supposedly no longer autistic does still show social impairment due to these things we know to often occur in conjunction with autism, but it probably doesn't mean anything" feels a bit disingenuous to me.
Let's go back to my own HFA-labeled son for a moment. I wouldn't bet you a huge sum of money, but I'd probably bet you $10 or so that he could've gotten through this testing and been assessed as having only mild social impairment. I would make that bet because 1) he often experiences little or no social impairment under optimal circumstances (such as knowing exactly what to expect and what is expected of him) and 2) this is a child who has had years of targeted therapies to help him manage his emotions and behavior in socially acceptable ways. See, that's what happens when you get an ASD diagnosis, if you're lucky -- you commence appropriate treatment, and things get better. That doesn't mean my son no longer has autism or that he's never going to experience difficulty because of it, it just means that he is less severely impacted than he was before he began working on his toolbox of coping skills. Time, maturity, therapies, and a careful curation of what circumstances he's forced to navigate, all combine to make for a life more manageable. That's not magic or outgrowing, that's just... progress.
So even though this particular study concludes:
The purpose of the current study was primarily to demonstrate the existence of a cohort who had clear autism at a young age and no longer demonstrated any significant autistic impairments. The data clearly support the existence of this group. The possible presence of subtle limitations or differences in social behavior, social cognition, communication, or executive functions remain to be elucidated in further analyses, as do many other crucial questions, such as the biology of remediable autism, the course of improvement, and the necessary and sufficient conditions, including treatment, for such improvement.
... I feel like saying "the data clearly support the existence of [a group once diagnosed ASD but no longer clinically autistic]" is a stretch. Maybe some of the subjects in that group were incorrectly diagnosed in the first place. (There's certainly a number of other conditions which can mimic autism's symptoms, and some -- like certain food sensitivities -- can indeed be outgrown.) Undoubtedly some of those subjects have improved via any number of channels -- maturity, therapies, medications -- and may now be "flying under the radar" in limited situations. And quite probably a conclusion this broad-sweeping is a bit premature when the methodology utilizes a relatively small sample size, no field observation, and nothing even remotely longitudinal to back it up.
I worry that studies like this change the focus from helping our kids live full and happy lives in a world that values their neurodiversity back to the old "Cure Autism Now!" battle-cry, one that doesn't make any sense if you embrace the current research showing autism to be biologically-based.
What do you think of this study? Interesting, foolhardy, incomplete? Did it make you bristle the way it did me?
BlogHer Contributing Editor Mir Kamin thinks her kids are awesome just the way they are. She blogs near-daily about issues parental and otherwise at Woulda Coulda Shoulda, and all day long about the joys of mindful retail therapy at Want Not.
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