Something occurred to me this morning, while I was working out. Something about women and culture and autism diagnosis. And the intense isolation / loneliness that so often accompanies autism throughout our lives.
Maybe I’ve thought of this before, and I’ve just lost sight of it. If I’ve blogged about this before, I apologize for repeating myself. Anyway, I was pondering why there seems to be so much resistance to women being diagnosed as autistic — both in the healthcare
community industry, as well as in our social milieu. The standard tests don’t include us. Doctors and therapists have a thousand reasons to tell us we’re not autistic. And even if we do get an official diagnosis, it can be pretty dicey with our friends and family and everyone else either telling “You’re not autistic!” or just plain ignoring us whenever we try to discuss it.
It’s just a little infuriating. Off-putting. Dismissive. And also detrimental to our health.
So, why? Why is it like this? I need to understand for myself, and maybe it can help someone else, too. Dunno.
I’m traveling down to see my family tomorrow. My Aunt MG’s funeral is Tuesday, and I’ll be traveling deep into proto-Aspie territory there. It’s a tough environment, to be honest, because it’s very rigid, very black-and-white-thinking, very challenging in every sensory way. The hyposensitive autistic folks tend to dominate every aspect of life – and you know how persistent we can get, when we need something like our lives depend on it. That part of the world is very proscribed and circumscribed by a dizzying array of rules and unspoken expectations. For those who think “Planet Autistica” would be a wonderful place to be, lemme tell ya — it’s not. I grew up there, and it was tough. Very, very tough.
When I was a kid, my grandfather came to Sunday dinner. This was while he was still windowed, before he married his last wife (he outlived two wives before he married a woman much younger than himself — which, since he was such an Aspie, really worked for him). He was holding forth with one of his uber-autistic monologues about how women are different from men. “Women have to be better,” he said. “Because they carry the culture from one generation to the next. They have to make sure we stay civilized, and hold the men to higher standards. Men — ” he shook his head regretfully, “are not as good as women.”
I didn’t quite know what to make of that, quite frankly. I mean, there he sat, announcing that he and all his gender were basically exempt from holding themselves to higher standards. And women were supposed to step up and keep them in line. Like we had nothing better to do with ourselves. I believe I was 15 or 16 at the time, and although I was inclined to respect his opinion, it still didn’t seem fair. Or honest. But that was his belief, and out of respect I said nothing.
A good 35 years later, I still think back on that conversation. And I wonder if maybe that underlying bias isn’t one of the culprits behind women not being diagnosed — that there’s this expectation that we’re going to somehow turn out “better” than men/boys, that we’re going to be tasked with perpetuating the culture we live in (neurotypical culture, that is). And so it’s incumbent that we be normalized as much as possible in the course of our childhood, youth, and adulthood.
I know, for me, the pressure to conform has always been intense. And it’s always come from other girls, other women around me, who have always seemed to take it upon themselves to “police” me. My tone, my behavior, my clothing, interests, my… everything. I would imagine the same holds true of boys, to some extent. But growing up around girls, under that constant pressure… it shapes you in specific ways, which you never quite escape. It’s burned into your experience, embedded in your mind.
And if you’re not “normal”, it’s a problem. If you’re not neurotypical, people freak out — I should know, they did it a lot with me. If you don’t fit in, you’re a liability, and you’re made to feel that way. As a girl, I made peace with that, because frankly it was way too much work to try to fit in, and every time I tried, I … failed.
So, I went for the “quirky” effect and I carved out my own niche being myself… and making room for everyone else who wanted to just be themself around me. It really did wonders for my ability to peacefully co-exist around others, because all the other girls (and boys) and – later – women and men who were overtaxed and exhausted from trying to keep up with everyone else… well, they always had a place with me, where they could just be themselves. And it was magical for them, as well as me.
In adulthood, things have actually been more challenging — especially now that I’m active in mainstream life, with a “career path” (LOL), a mortgage, an SUV and a minivan in the garage, a long-term marriage, local government responsibilities, and so forth. I blend much better now, in part because I don’t really try, in part because people just assume that I’m just like they are.
Just like they are… that’s a good thing to them, because it means that I’m adhering to their values, I’m supporting their choices, I’m continuing their culture. I’m a woman, and I’m playing along… As far as they can tell, anyway. I can hold a conversation (though it’s hit-or-miss, in terms of whether I know what it’s about or remember what we discussed, just a few minutes after). I can hold down a job (though my weekends are spent in major Recovery Mode, which leaves almost no time for anything else). I integrate really well with my surroundings, and I don’t stand out as a “weirdo” (thanks to, oh, 45+ years of practice — yeah, you learn a thing or two, over that amount of time). I’m a fine example for young(er) women around me, to show them what’s possible in life. I’m a walking, talking exemplar of “normalcy”, as far as anyone who’s not autistic can tell.
Those are the facts.
But the truth is something very, very different. I go along with everything, because I don’t feel like dealing with the fallout. I’m not sure I’d last, if I didn’t have these bogus structures in place. There are countless benefits to “passing”, and I’m frankly not self-sufficient enough to make a go of it without those benefits. Call me a coward. Call me a fake. In fact, I’m actually quite impaired, outside the “institution” of my artificially constructed everyday life. I have no confidence that I can put food on the table and keep a roof over my head, and once a year spend a few days by the ocean, without my voluntary institutionalization. And anybody who begrudges me my “passing” has no idea how hard it is for me to function just on my own, outside those parameters.
As long as I’m toeing the proverbial line of social acceptability, upholding the values of the dominant culture around me — woo hoo! I’m set. But the minute I start pushing the limits and stepping outside the bounds that are set for me — as a woman, as a culture-bearer — I find out about it. Those awkward silences. Those criticisms. Those comments. Those sidelong looks. Autistic people can in fact be excruciatingly sensitive to our environments, and I get a full “dose” of corrective reactions from other women, when I stray outside the bounds of their expectations.
We have a job to do — and that’s to continue the culture we live in. Women bear the children. Women do the majority of child-rearing and caretaking in the world. The world sorta kinda hinges on our willingness to play along, in order to perpetuate the culture — whatever culture we’re in.
So, if you turn up autistic, which in itself is poorly understood by … pretty much everybody who hasn’t made a concerted effort to study and understand it … that’s a violation of your contract as a woman in the world. Turning up at the doctor’s (or therapist’s) office, announcing you think you may be autistic is a violation of social / cultural trust. Because:
A) You’re in touch with your own individual experience enough to know there’s something different about you (which should have been trained out of you, years ago),
B) You’ve spoken up to call attention to the fact (which everyone knows is a no-no for women, who are expected to sit quietly while other people – men – make all the noise and draw attention to themselves),
C) You’re saying you know as much as — if not more than — the healthcare provider sitting across from you (which is the ultimate affront to socially/culturally approved authority structures) , and
D) You’re expressly saying that your own interests are every bit as significant (even moreso) as the dominant culture’s (which flies in the face of everything you’ve been taught as a self-effacing woman).
When you show up as a woman, saying “I’m autistic”, you’re stepping out of the role you’ve been trained for — a role which the world depends on you to uphold. You’re saying out loud that you’re not … adhering… and that people need to make some adjustments to make room for you in their lives. A lot of people can’t. A lot of people won’t. On a deep (and usually well-hidden) level, it strikes at the very heart of what they believe a woman should be / do, and how they should relate to you.
So, yeah – color me radical. Autistic women pose a significant “threat” to the status quo on so many levels, not least of which because we’re the ones who are expected to carry on the norms of our host society.
Some of us can’t. Some of us have no interest in doing so. And some of us may seem to on the surface, whilst behind the scenes — and beneath the surface, where no one ever bothers to look — it ain’t necessarily so.
On that note, I leave you to go off to my non-compliant, self-serving day, where I can remember — once again — who I truly am… versus what the rest of the world thinks I should be.