Kudos and cred go to Sonia Boué for this great articulation of what an autism/Asperger’s diagnosis means to many of us – especially women, I think.
Autism diagnosis is an “authentication of selfhood”
Receiving an autism / Aspergers diagnosis from your doctor / GP / PCP / therapist, or independently arriving at the conclusion after taking the yea-many online tests that are out there, can be incredibly freeing, especially for women on the spectrum. I know it gave me wings on several different occasions, over the past 20 years. And now it’s doing it again. It’s literally like someone threw open a door to the musty wardrobe full of other people’s clothes that I’ve been wearing for lo these many years, and I’m bathed in the light of a newly technicolor world.
Hello Narnia! And it’s the version of that wonderland after the Snow Queen had been vanquished. Of course, the light is a bit bright, and I have to put on my sunglasses and watch my step, so I don’t run into sharp objects along my path, but still – it’s way better than that old musty wardrobe where
Don’t get me wrong – I think that plenty of men may find relief and validation in an autism diagnosis, but they are generally diagnosed so much sooner than women, and the classic traits of autism are typically aligned with observations of their behaviors and issues, so autistic / Aspie men are (generally) passed over far less often than women.
I know that men are under tremendous pressure to fit in, themselves, and when they don’t conform, they’re rejected and/or attacked, where women tend to be ignored and isolated. It’s a problem for both genders. But since I’m female, living in a female body and a female existence (altho’ my social expression of gender is fluid), I can only speak as a woman. With Aspergers. On the autistic spectrum.
Years ago, some of my co-workers strongly encouraged me to take the Wired AQ Test. It was in the late 1990s, when the test just became available. I brushed them off a bunch of times (I was busy working, and I was focused on that), but they kept pestering me. Then they said some of them had taken it, and they scored pretty high.
Okay fine! I assented, and the results came back pretty definitive. I was well within the parameters for being on the autistic spectrum. I think I scored 36 or something like that. Here, let me take it again – I just scored 40. That’s above the 32 that puts me probably on the spectrum, no surprises there.
Anyway, when my co-workers heard my score, they nodded knowingly and said, “See?” See what? Please, I need to go back to work coding. Leave me alone. I’m fine just as I am. I don’t need a diagnosis to make my life complete. And what am I supposed to do with that information, anyway?
But it kind of got under my skin. And I did some reading. And I did some looking around. And I found some books. It “clicked” for me. I saw something in it all that struck a nerve. And I thought, Maybe this is a key to unlock WTF is up with me.
Cue the focused interest.
I signed up on Wrong Planet and posted a bunch of things. I got drawn into the debate about self-diagnosis vs. self-identification. I got all worked up over our rights. I read what books I could find. I tried my new Aspie identity on for size, but there was no way for me to really live it in the real world, where there was still so much prejudice, and frankly it was tiring to keep both identities going.
Over time there seemed less and less in the ASD community that actually applied to me (it seemed like mostly guys – very opinionated guys), so I dropped that route of exploration after about a year and went back to my solitary life.
It was disappointing, because I felt like I might have a chance at better understanding myself, and I did feel a deep kinship with an aspie perspective. But I just didn’t seem autistic enough to be in the midst of all the folks I encountered.
What I didn’t realize at the time, which I realize now, is that all the years of blending, masking, fitting in, had really skewed my perception of myself and who exactly I was. I’d sunk so many, many years into conforming my behaviors and expressions to match what was comfortable for others, that I’d lost touch with who and what was authentically ME. Much as I detest the word “authentic” (it feels wrong in my head when I say it and think it — it’s a sensory thing), I’ve got to use it here. I’d been rewarded so much for being someone other than who I really was — and how I really was — that I’d gotten out of practice of just letting myself BE.
And I couldn’t seem to bring that person out — for real — without plunging into an existential crisis. People looked at me strangely, when I went ahead just acted how I felt I needed to be… including my wife. So, I dropped the active expression of my newly discovered Aspie identity.
I was underground for a number of years. From about 2000-2007, I went about my life with this aspie identity tucked under my cap, like I had pulled on a fedora over a multicolored mohawk, and I just went about my life like a “normal” person.
But in the years from 2002-2007, I felt the socio-cultural vice tighten on me… and I felt like I was drifting farther and farther away from myself. My wife and I had moved to a beautiful house in a beautiful town — far from the diverse environments where we’d lived for many years. As a committed lesbian couple in a world that wasn’t quite ready to deal with us, we’d always kept the margins of society, sticking with the artistic and theatrical counter-culture crowd. But when we bought our house, we were plunged into the midst of the mainstream in a very big way.
Holy crap. I’ll write more about that later, but the end result was that I felt farther from myself than ever before. And it wasn’t good. I blended in successfully, but at a cost. At a very steep cost.
Even worse, in 2007, my wife was hospitalized with diabetes-related complications, and I was launched head-first into navigating a world where I couldn’t understand, couldn’t make myself understood, and I had NO comfort level around dealing with any of the healthcare providers we interacted with. I pissed off a lot of them, and I got things turned around, which is not good when you’re trying to keep the love of your life alive.
Ultimately, we came through it — and my Aspergian focus and intensity actually helped get her diabetes and glucose levels under control in record time. But the stress really did me in, and I ended up with a slew of my own health problems, which I’ve had to devote the past 8 years to fixing. Pretty much myself. Because nobody else “gets” my situation and just how much of an Aspie I really am.
One thing that came out of my health repair and maintenance path, was a fresh look at my Aspergian self. I did a ton of research online about the symptoms and issues I was having, and sure enough, sensory issues were front-and-center. Holy smokes! That was it! And look – there’s more! I came across additional information about high-functioning autism and Aspergers, and I was even approached by some strangers, who encouraged me to read Temple Grandin’s books. I’d just about forgotten about “the whole autism thing”, in the past years, but when people started nudging me (again) to look into high-functioning autism and Asperger’s, a lot of what I’d learned before suddenly came rushing back.
And I Was So Excited!
Because now so much made sense. Now I could understand why I got so stressed over things. Now I could grasp why I frazzled, when everyone else seemed so calm. Now I could explain why I sucked at social interactions. Now I could see myself as part of a larger community, not a single, solitary freak in a land filled with Normal People.
I did a ton of research from 2007-2009, working my way through books and research papers and websites, taking numerous tests and annotating them. I analyzed my family members, and I could clearly see how my mother’s side was anything but neurotypical. And my father’s side, too. I did analyses on them, myself, and I dug up every test I could find — that didn’t seem like a thinly veiled bias-confirming waste of time.
I wrote it all up, and marched off to see neurologists. I even looked up a neuropsychologist — no, two. I went into therapy with a woman whose husband’s behavior looked autistic from a mile away — through a dense fog. I shared my notes, my research, my findings, hoping to find someone who could take that as a starting point and help me work through an official diagnosis… just so I could be sure I wasn’t kidding myself.
But nobody was buying it. I was either laughed at, or they gave me elaborate explanations of why I couldn’t possibly be right. The therapist with a proto-Autie husband said her sister-in-law was autistic, and I wasn’t anything like her, so I couldn’t be. One neuropsychologist told me that since I could understand other people’s feelings, I couldn’t possibly be anywhere on the spectrum. One neurologist flipped through my ream of papers and asked about my relationship with my father. The other didn’t even look at the papers, but asked me when I’d last taken drugs.
Oh. My. God.
So, I tried talking to a friend who was a psychotherapist and who worked part-time at a big engineering school, thinking she would have more familiarity. She just laughed at me, shook her head, and said, “Well, dear, maybe you’re a little autistic”, holding her thumb and forefinger a quarter inch apart.
I went out and got the DVD for Mozart and the Whale, and my wife and I watched it together. Lights and bells and whistles started going on in her head, but the idea that I was on the autistic spectrum frankly scared the shit out of her, and anyway, she was still in fragile shape, having had a close call in an extended hospital stay within recent memory. So, she wasn’t up to dealing with it.
So… fine. Again.
I went to my PCP, the only healthcare provider I’d ever had who could communicate effectively with me, and who genuinely seemed to care. I told her about my suspicions, trying to be both confident and diffident (so I didn’t accidentally insult her or compromise the clinician-patient dynamic). She just looked at me strangely and nodded. Humoring me. She didn’t really want to discuss it, and when I saw her reaction, neither did I. She was clearly skeptical, and I couldn’t bear the idea of being judged and dismissed by her — the only doctor who’d ever been worth two cents in my life. I let it go after that, and it never came up again.
The net result of all of that was… disappointment. Because at last – AT LAST – I had a way to conceptualize my “quirks” and see them within a larger pattern that made sense. It didn’t matter that the pattern was autistic. It didn’t matter that it might qualify me as “disabled” (sigh), or that it pitted me against an uncaring, cruel neurotypical world. I just didn’t care. At last, I had a pattern to interpret myself and my identity by, and that was gold. Pure gold.
I hoped, also, that a diagnosis would help providers work better with me, or at the very least not treat me like crap when I ran afoul of the social rules. I needed help with communication, and I wasn’t getting it. I didn’t need a ton of accommodation, just a shift in their perception of me that would give me just a smidge more leeway.
That never happened, and it hasn’t made my life easier, these past 8+ years. Or these past 50+ years.
Well… This post has really gotten long, so I’ll leave it for now — and pick up later. Ultimately, after my failed quests for diagnosis, I went back underground and just focused on my most pressing health issues. And the whole Aspie thing got swept under the rug.
For some reason, now seems like the time to start really committing to it and talking about it.
So here I am — over the top, in both respects.
More to come.
Of course. 🙂