January 10, 2017

Lost in the discussion of “lost diagnosis”

Posted in Uncategorized tagged , , at 5:34 pm by chavisory

“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.

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10 Comments »

  1. Reblogged this on bunnyhopscotch and commented:
    Sharp and to the point. From Chavisory.
    I’ve often been referred to as an “optimal outcome” case. Many “NT-acting” autists are. This is, to me, not a compliment at all – it merely reveals the dominating rigid NT-biased frameworks that autistics have had to labour under. We need a better way forward than this.

  2. Kelly Johnson said,

    So glad to see someone addressing the many issues here. Great article. I was so disgusted to read that after all that (crappy) research the only conclusion they came to was that more mental health services would be needed. Ugh.

  3. Laura Cooper said,

    A Good article, also relevant to this issue is the idea of autistic burnout. Both over a life span and day to day, autism rarely follows a trajectory from “severe” to practically NT, things can change and shift all the time due to the environments people are in. If a kid who loses a diagnosis before puberty but then burns out in university, they’ve lost ten years of support in dealing with being autistic in an NT world, to say nothing of the shame they may feel in having “regressed”.

  4. I’m currently under social services for fabricated illness. The social worker stated my son was too articulate so was going to have his diagnosis undone. She said “if a child can hop skip and jump they are not unhealthy”. She gave me a letter to sign to say I would not make a thing out of my son’s hypermobility. This article is basically my four children and the hell we are being put through.

    • chavisory said,

      Oh my god…that’s terrible. I’m so sorry that’s happening. Can you possibly get the clinician who diagnosed your son to write a statement to the social worker explaining what his diagnosis means?

  5. danjodea said,

    Reblogged this on The Dragon Core and commented:
    Think about this carefully as you read it; know anyone fitting these descriptions? Maybe not – we get better at hiding it over time.

  6. Christiaan Killingbeck said,

    It seems to me, that it would be better to let us be autistic than to see the consequences of the damage that is done in making us into something we are not.

  7. […] nonsense of the “lost diagnosis”. By chance, while I was working on this post, I came across this post on Chavisory’s Notebook, which talks about that very thing. I recommend that you read it for […]

  8. Isabelle Faguy said,

    The simple answer to all this would be so easy, cost-effective and can be instant, it’s : acceptance. Acceptance is the answer of many of human problems and could be the end of a lot of silent, underground suffering. A best-at-masking autistic person (“fixed” from an NT point of view) is a maximum-suffering autistic person. I know first hand. If only the “majority” (which is in fact a minority if you make some calculations), so let’s say they are “the ruling people”, would accept that difference doesn’t equal danger, everyone would be much more healthy and happy.

  9. […] people change or grow as people, or pick up skills we weren’t expected to, it must be because we overcame or outgrew autism, or “must be very high-functioning” in the first place…and not because we are capable of […]


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