Lost in the discussion of “lost diagnosis”

January 10, 2017

Lost in the discussion of “lost diagnosis”

“The past is never dead. It’s not even past,” wrote William Faulkner, and I couldn’t help being reminded of that line as I read the recent article “Compulsions, anxiety replace autism in some children,” from Spectrum magazine.

An estimated 9 percent of children with autism achieve a so-called ‘optimal outcome.’ But nearly all of these children years later develop related conditions such as obsessive-compulsive disorder, attention deficit hyperactivity disorder, anxiety and depression, the new study suggests.

“The majority of the group with a past history of autism are vulnerable to developing other psychiatric disorders,” says lead investigator Nahit Motavalli Mukaddes, professor of child and adolescent psychiatry at the Istanbul Institute of Child Psychiatry in Turkey.

So let’s get something straight right off the bat.

There is—so far as has ever been revealed—no such thing as a “past history of autism.”

If children who lose a diagnosis are socially compensating to such an extent that screening tests can no longer detect their autism, that probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.

Autistic children don’t grow up into non-autistic adults. These children are likely suffering the utterly predictable effects of being forced to hide their autism or having their natural modes of functioning fractured. They’ve had their labels replaced, not their autism.

You can’t make an assertion like “Our results indicate that the improved status with regard to autism symptomatology is maintained over time” when you aren’t talking about a significant amount of time.  People compensate differently at different times of life, autistic people can experience markedly atypical developmental trajectories, and autistic adults often suffer burnout in middle age or later from decades of the strain of pretending not to be autistic.

(The study participants had “lost” their autism diagnosis at least two years before the study commenced.  That means some of them were as young as four years old when they lost their diagnosis.  For girls especially, who are increasingly having it recognized by professionals that the true extent of their social communication challenges may not be apparent until adolescence, it should go without saying that this is…insufficient.)

An autism diagnosis isn’t just “lost” by a child by happenstance, like a disregarded toy or a mismatched sock; someone has to take it away. And non-autistic parents and professionals have a long history of mistaking the label for a thing with the thing itself (as does the title of this article, conflating loss of diagnosis with loss of autism) when it comes to states of being they don’t understand well. But no loss of underlying condition, when it comes to a condition that most people with it experience as a basic neurological configuration, should be considered conclusive until follow-up at 20-30 years later, at minimum—given the now-common phenomenon of autistic people first recognized and finally able to acknowledge their lifetime of effort at “pretending to be normal” in their 40’s, 50’s, or later—finds someone no longer exhibiting the core processing differences of autism. Not just compensating for, concealing, or having learned to override by brute force the core differences in information, language, and sensory processing widely reported by autistic people as central to their experience.

“You’re never more disabled,” autistic author Rachel Cohen-Rottenberg once wrote, “than when you’re over-compensating.” And the presupposition at play in this research design that, if symptoms are failing to appear on screening tests, it’s because the autism has disappeared, not that an autistic person has either learned a specific skill set or is exerting a continual effort to perform according to expectations, is one of the most basic manifestations of neurobigotry.

It must be that we are no longer autistic, because autistic people aren’t capable of learning or trying.

And it certainly can’t be that those efforts at fakery and concealment have meaningful costs to our well-being, because autistic people are not presumed to have well-being worth preserving.

 

Also notably, the oldest of the test subjects here were 16—still minors, still most likely living under the control of their parents. The same parents with a substantial investment in believing that their children’s autism has been successfully suppressed.

Those aren’t fair circumstances under which to expect a teenager (let alone a 6-year-old), who may have been substantially deprived of bodily and cognitive autonomy (and in all likelihood, access to competing information about neurodiversity and the narratives of other autistic people) to give an accurate self-report about whether their experiences of themselves in the world are still, in fact, autistic.

Think about what revealing that would expose a kid to, in terms of parental disappointment and potential for resumed scrutiny, mistreatment, or return to invasive and demeaning therapy.

 

There’s something incredibly ironic and cruel about considering an “optimal outcome” for autistic children a future in which we suffer from anxiety, depression, and a host of other psychiatric illnesses “instead” of being allowed to grow up to be healthy, happy autistic people.

I can only hope that this research helps in alerting clinicians, researchers, and parents to the central fault in “loss of diagnosis” as a desirable goal in the first place, but I’m not made optimistic by the conclusion of the lead researcher here: “Even when we stop their special education programs, we need to continue their psychiatric and mental health follow up for a long time.”

No, you need to stop trying to turn autistic kids non-autistic.  It doesn’t work for gay kids.  It doesn’t work for trans kids.  It doesn’t work for autistic kids.

It doesn’t work.

Permalink