Protecting us from the hazards of #autism diagnosis

woman looking into the distance, in front of a brick wall
Getting answers sometimes is like talking to a brick wall

For the record, if you ever want to ignite a Twitterstorm, tweet something to the late-diagnosed Autism Spectrum world about how women (and others) need to be sheltered from the hazards that come with an autism diagnosis.

That’s what I did earlier today, and lemme tell you, we Aspies and Auties are not shy at all, when it comes to making our sentiments known about being denied an Autism Spectrum diagnosis “for our own good”.

It was actually quite fun. Many, many of us are on the same page (though it’s not clear if the researchers who think we need to tread carefully with regard to autism diagnosis got the memo we’re all writing our lives as examples).

The story that kicked it all off is a piece in Spectrum News – The Lost Girls. I was reading through it and came across a couple of choice tidbits:

Early studies estimated that at the high-IQ end, the male-to-female ratio is as high as 10-to-1. The picture emerging from studies looking at girls with autism over the past few years suggests this ratio is artificially inflated, either because girls at this end of the spectrum hide their symptoms better, or because the male-biased diagnostic tests aren’t asking the questions that might pick up on autism in these girls — or both.
Our intelligence can work against women on the autism spectrum

That was a “no kidding…” moment, if ever there was one. People on the autism spectrum are by nature excellent mimics, and we can be extremely smart. Who wouldn’t learn quickly from countless experiences of failed social interaction, what to do and what not to do? Seriously, people, who wouldn’t? (Maybe people who don’t have to…)

And this little gem:

experts don't think women who cope need an autism diagnosis

The second one really jumped out at me, partly because Simon Baron-Cohen was referenced (and I have serious logic-based and personal differences with much, if not most, of what he’s produced over the years – and what he’s done hasn’t helped a whole lot of us), partly because every . single . word . stood out as emblematic of the alarming biases still held (apparently) by so many researchers and recognized autism experts.

I’ve written a number of times before about how diagnosis actually helps women (and men and non-binary folks) better understand their lives and their place in the world. It’s not a black mark on our character. It’s a vital piece of information that allows Aspies and Auties to actually make sense of a life that makes no sense, whatsoever in the context of a neurotypically structured world. Understanding who we are and why we are the way we are may be uncomfortable, but living your life without any understanding of the over-arching meta-patterns of your life — or that you’re not the only one — comes with a very steep cost.

If anything, denying anyone who’s on the spectrum a right and proper and accurate autism diagnosis is cruel. It’s not protecting us from something undesirable. It’s not sheltering us from the slings and arrows of the world. It’s keeping from us the most core, most essential, most foundational aspect of our Selves. And it’s denying us our community.

That, my friends, is cruel, in the same way that intense, PTSD-producing ABA and “behavior modifying” shocks are cruel. It’s “for our own good”, apparently. It’s “keeping us safe”, according to some many clinicians I’ve encountered and heard about. It might not seem like a horrible thing to do, to an intellectually distanced, objectivity-aspiring researcher, but to those living with the practical, logistical issues of the autism spectrum each and every moment of our waking (and sleeping) lives, refusing us an autism diagnosis is just cold.

And yet, the neuro / psychological / clinical world persists in the practice of either mis-diagnosing us, or refusing to diagnose us, period. Weirdly, just this past week, I was talking with a clinician who is familiar with my neuropsychological profile. Back in 2008, when I was seeking an Aspergers diagnosis, and also dealing with a number of other “confounding” issues in my life, I underwent a series of neuropsychological tests. They took a few days and they measured things like my short-term working memory, how susceptible I am to distraction, my thought process, my self-perception, how well I fit stuff together, my processing speed, etc. From what I’ve heard about others’ AS assessments, my scores were consistent with impairments very common in Aspergers/Autism. But the clinician I was working with then wasn’t looking for AS. He was looking for something else. And you generally find what you’re looking for — especially if you’ve been plying your trade for close to 40 years.

Anyway, the clinician I was talking to this past week is familiar with my profile. She’s read my fairly hefty file. She’s talked with me a bunch of times. And I’ve been considering asking her to assess me, although she apparently has only ever assessed young children (major red flags fly high on that fact).

And we got to talking about insurance, and she told me she’s reluctant to assign diagnoses to people who don’t “need” them, because it gets you “slotted” into a certain insurance profile that then sets you up to be “managed” by the insurance companies in all their (complete dearth of) infinite wisdom. I can totally see that. Insurance perils are a big reason I have not more actively pursued a formal diagnosis, and I am almost OCD-level meticulous about keeping my personal details out of the clutches of insurance carriers.

The thing is, though, as we were talking, I got the impression that she thought I would internalize a diagnosis in unhealthy ways. She talked like I would turn a DX into a defining feature of my personality and let it limit me… rather than using it as basic information as a springboard to greater self-knowledge and more effective self-management. She seemed to think that diagnosing me with anything more than “adjustment issues” was going to set me down a path of limitation and disability.

We never talked specifically about Aspergers, although the times that I have interacted with her, I have masked a lot less than usual, just to see if she would pick up on anything and mention it to me. I regularly have people who are “hip” to Aspergers chatting with me about it, like I’m supposed to know a thing or two. They never come right out and ask me — it’s always oblique, always cautious. But they broach the subject with me.

Of course, we never get right into the nitty-gritty of my experiences, because they never come right out and ask me, and I’m too literal to read into their inferences in the moment. But they do mention it. And if this clinician hasn’t mentioned it by now, after seeing me in action a number of times, then I’m probably not going to push the issue with her.

Perhaps.

Anyway, all this talk about diagnosis and the perils and limits thereof, has me baffled about the clinical attitude towards diagnosis. Why wouldn’t someone want to DX a person with Autism or Aspergers? Why would they choose just about anything else — OCD, bipolar, borderline personality, oppositional-defiant, eating disorder, depression, and so forth — rather than cutting to the chase? Why? What’s so god-awful about Aspergers / Autism, that clinicians feel such a pressing need to shield us from that “label”?

I honestly can’t figure it out. It could be that:

  1. Clinicians truly believe that Autism Spectrum Conditions are a disorder and a sign of developmental delay, which puts us at a disadvantage in the world, when it comes to self-advocacy and self-determination.
  2. Clinicians genuinely think that AS is an epidemic pox upon the human race, which should be eradicated through genetic selection and treatments.
  3. Being DXed as Autistic is a raging black mark against us in clinical and social terms, effectively stripping us of our rights and autonomy in medical care, social standing, and perceived ability to participate as fully functioning adults.
  4. Insurance companies will flag us as “high maintenance” and force us (via their defined standards of care) to go on heavy-duty meds to manage our condition.
  5. Clinicians have no idea just how much it means to us to have the right objective information about our makeup, and they judge our ability to deal with it according to neurotypical lines — the very lines that consign us to marginalized prejudice and dismissal (which isn’t at all how we think about ourselves and others like us).
  6. Nobody realizes the essential nature of our pattern-driven thinking, and they have no clue just how critical it is for us to have that most intimate key to understanding our true natures.

There are more reasons, I would imagine, but these are the main six I can think of, right now. It’s been a long day, and my head is spinning from all the activity.

It’s been very good activity. These are things we need to think and talk about — if not with the clinical / medical community, than at the very least amongst ourselves.

And so we shall. Just try to stop us…

 

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9 thoughts on “Protecting us from the hazards of #autism diagnosis

  1. Oscii

    Number five hit me between the eyes, for it’s irony – neurotypical health workers don’t want to diagnose us as autistic, because THEY wouldn’t want to know. They live in this neurotypical world of limited logic, and fudged reality, and cannot conceive that a major clue that someone is probably autistic might well be that they are seeking diagnosis. Diagnosis helps the world to make sense, it helps us to organise and understand the facts in a useful way – it helps with the sorts of things that seem to matter so much more to autistic people, than to everyone else. We’d rather know than not know. But that passes them by, because when they try to imagine themselves in our position, they would DEFINITELY rather not know.

    Liked by 4 people

    1. That is exactly right. It’s a stigmatic realization for someone like Happé which does nothing to help create an environment of acceptance with so much underlying shame about it. Visualvox does an eloquent job of pointing this out.

      Liked by 1 person

      1. VisualVox

        Thank you very much! The incredibly worrying part about this is that Happé (and many like her) don’t actually seem to realize that they hold a negative view of autism — and just how problematic their position is, especially for someone in research. I simply can’t understand the lack of empathy on their side, or the lack of willingness to admit, accept, and amend their behavior and beliefs which have such a deleterious effect on us. Or perhaps it’s that they really truly believe that we’re too developmentally delayed to actually understand the issues in the first place.

        Liked by 1 person

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  3. The trouble is that the diagnostic criteria specify impairment. DSM 5: Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. The ICD 10 is pretty similar. So they tend not to diagnose if you’re “functioning”. Just like someone with a painful condition loses their diagnosis the moment they push themselves to do things despite the pain. Oh wait.

    The criteria don’t specify that the person can have no observable impairment because they work SUPER SUPER HARD to appear normal.

    Liked by 3 people

    1. VisualVox

      One of my issues with the diagnostic criteria, is that there’s often a clause that the issues can’t be explained by another underlying condition. So little is understood about how the intersection of autism and the stresses and strains of neurotypical requirements actually give rise to other mental health conditions, that those “effect” conditions can be seen as “causative” conditions — so, we get passed over because the results of our autistic issues are seen as the root cause of our (visible) difficulties.

      There’s huge opportunity for change there. And the sooner we get a collective clue about how autism and the interplay with an intransigent and often narcissistic world result in mental health (and other) issues, the closer we’ll get to some truly useful diagnostic and treatment approaches.

      Still so far to go, unfortunately. But change is happening.

      Liked by 3 people

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