The incalculable cost of denying #autisticwomen an #autism #diagnosis

Image showing six pictures of women who are blurred out and not clearly visible
Image showing six pictures of women who are blurred out and not clearly visible

I’m sorting through my autism materials collection I gathered back in 2008, when I was re-commencing my quest for autistic understanding. I’ve got a bunch of PDFs from people who were at the vanguard, back then. And I’ve got a bunch of information from now-infamous pioneers whose work has been used to hold us back and justify all sorts of things, including beatings and electric shocks.

I’m glad I’ve got a wider perspective, now. Frankly, not being able to find reliable sources of info on autism, eight years ago, was one of the things that drove me back underground, to sort things out myself.

And I’ve done pretty well. I’ve actually done really well, as I got help from someone with deep expertise in executive functioning issues, who worked with me on a weekly basis to talk through my life and figure out how to A) not beat myself up over every little thing I thought I did “wrong”, and B) think through my choices and actions, so I didn’t get myself in trouble quite as much.

It was hugely helpful to me. Of course, the professional I worked with flat-out denied that I might be on the autistic spectrum. He trotted out that Simon Baron-Cohen story about theory of mind, and he state in no uncertain terms that if I could imagine what it’s like to be someone else, in their shoes, and have empathy for them, it was impossible for me to be autistic. Or even aspergian.

The net result was this:

  1. I felt let down, betrayed, dismissed, diminished.  I had worked so hard to understand myself and my situation and actually be honest about my experience, and here was someone who wouldn’t even hear me out, because he wasn’t current on his research. It put a damper on our working relationship for a bit, and it made me feel crazy. I also was more emotionally raw, and as I recall, I had some meltdown instances.
  2. That blind spot actually set me back, in some ways.  In terms of self-confidence, it pulled the rug out from under me. The meltdowns undermined my sense of self, too, and I started to think maybe I was crazy… again. Here, I’d had such a rush of excitement over finding a massive missing piece to my life, and it turned out, the doc thought I was wrong. He was the doctor, I was the patient. Who was I to question him? Maybe I was just another crazy middle-aged woman who read too much online, had too much time on her hands, was lonely, and was looking for attention from a professional. My blind trust was shown – yet again – as the shortcoming it’s always been. I felt like such an idiot, for a while.
  3. I eventually came around and realized that he didn’t know what the %#&!@  he was talking about. I mean, really. How could he sit across from me, hearing about all the challenges I was having, which were clearly — clearly — part and parcel of the autism spectrum for women, and tell me I had no basis for believing I was autistic? Logic ultimately won out. He wasn’t current on the research, and the “facts” he’d cited to shoot me down were exactly the ones I knew were wrong, so very wrong. I realized — logically, methodically — that he was the problem, not me.
  4. I worked on my autism issues with him, anyway. I never came right out and discussed my challenges as part of a larger context, a larger pattern, but I focused on them individually. Distractions. Temper outbursts. Poor decision-making. Impulse control. Getting overwhelmed. My sh*tty self-image. Basically, all the autistic issues I was dealing with, I brought to our sessions, and we worked on them, without ever addressing them in terms of autism. And I made good progress. However…
  5. There was a huge missed opportunity to improve even further. I had a lot of sensory issues that I needed advice for, but never got. I had a lot of internal experiences I could not adequately describe or articulate, and someone with deep knowledge of autistic women would have understood — and not told me that I was being unreasonable, and that I was doing much better than I felt I was. It helped me when he challenged my assumptions and rigid black-and-white / binary thinking, but there was a big piece of knowledge missing from our discussions — the knowledge of my autisticality and understanding how that affected my experiences and shaped my mind, heart, and soul.

I’ve since moved on to another executive function coach, and she’s a sweet woman, who is apparently as oblivious to women on the autistic spectrum as my old coach was. In fact, they still consult with each other. That’s an issue I’ll discuss later.

The point of this post is really to call out the ways that denying an autism diagnosis to women actually hurts us — and everyone around us. Why we should be refused diagnosis, is beyond me. I think it may have to do with the Freudian roots of psychoanalysis being tied up with women being “hysterical” and sexually needy, and not really having problems that weren’t in their own heads… since “the talking cure” seemed to help them so much.

That attitude is still so prevalent in the therapeutic context, and it has real consequences. I can always detect it in the ways that mental health professionals (even my friends who are in the field) interact with me.  It’s almost as though women aren’t seen as viable entities outside the context of their sexuality and physiology. Like we’re secondary vessels and vehicles whose sole purposes is to let the rest of the world get what it needs, while our own identities and ambitions are shoved aside.

It’s like we’re not real people. With real roles to play in the world. Why would we need an autism diagnosis? Especially if nobody else can tell we have problems? If our quality of life and personal happiness is supposed to be derived from what the rest of the world gets from us, then as long as we’re functioning “normally” in the eyes of everyone else, and we’re giving the world what it wants, there’s no problem.

No problem at all.

Except there is.

There are huge problems. For us. And by extension for everyone else. Because although women do NOT necessarily rely on the rest of the world to prove our worth, the rest of the world DOES depend on us to keep spinning as it does. The rest of world draws from our strengths, our support, our involvement, our care, our commitment, and so much more. The rest of the world needs us to be as strong as we can be, just as much as we need it, ourselves.

And if we’re being undermined by a condition which we cannot fully recognize or understand, that can suck the life out of you. Being blocked from simply stating out loud I am an autistic woman, and these are the issues I need to manage… being cut off from resources and support by supposedly well-meaning skeptics who are invested in us being neurotypical… being denigrated and diminished with the implication that we’re over-reacting and/or just looking for attention… It’s a killer. And it’s been killing us ever since we were little autie girls, doing our best to stay upright in a world that was usually too fast, too loud, too bright, too much of everything that hurt us, and not nearly enough like what we needed.

By extension, that suffering also sucks the life out of everyone around you. I should know. I grew up around plenty of women with very clear autism-related issues, who never, ever got the extra assistance they needed outside the close confines of their tight-knit community. It took a toll on the children they raised, the spouses they married, the employers who put them to work. I could tell stories for days about what I saw my aunt, my mother, and all the other women around me go through… simply because they weren’t neurotypical. It affected us all. It still does.

I’m drifting into territory I wanted to avoid — making autistic women’s well-being and access to diagnosis into primarily a community affair. To my mind, it should be enough that we need help for ourselves. But we are so interconnected, indivisible from the world around us, and invariably, I feel compelled to point out how others will benefit from it… to make a case to sway people (mainly men) on the fence, who have to see how something benefits them, in order to put support behind it.

I’m sure that many neurotypical mental health providers in a position to diagnose autism actually believe that they are doing us a favor by steering us away from an autism diagnosis. But that’s just prolonging the agony. If we don’t have a conceptual framework within which to place our issues, it’s difficult to even think about them. If we don’t have a pattern to orient ourselves to, it’s a challenge to even start thinking about things.  Autistic people are pattern thinkers. So, if you deny us access to a pattern, you deny us access to something that can help us actually think logically through our situation and take appropriate steps.

And that’s simply not fair. It’s borderline cruel. It’s ignorant, and it’s costing everyone else as much as it’s costing us.

So, why persist with this neglect? Loosen up, people. Let us have the reins of our lives, already. At the very least, stop trying to prevent us from being everything that we can be.

 

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4 thoughts on “The incalculable cost of denying #autisticwomen an #autism #diagnosis

    1. VisualVox

      Thanks – yes, I agree. There is literally no downside that I can see. Those of us who have been muddling along without a DX — or a clue — can generally stand on our own, with relatively basic supports. And once we’re clued into what’s what, we can often create our own solutions where the standard-issue ones fail. So… what’s the issue? Access. All across the board. And providers not having a clue about how autism and Asperger’s impacts our lives — which means they don’t have access to good information, themselves.

      Like

  1. Pingback: Protecting us from the hazards of #autism diagnosis – Under Your Radar

  2. VisualVox

    Reblogged this on Aspie Under Your Radar and commented:

    I’m really feeling this, today. Not having access to a diagnosis, or other information about autism (for women and men and non-binary folks who do not fit the “classic” criteria) is a huge handicap in life. And it’s 100% unnecessary. 100% preventable. Why prolong our suffering? Why?

    Like

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