Let’s continue the discussion, shall we?
’round about 2008, I re-embarked on my quest to …
wait, let me roll up my sleeves – they’re chafing my wrists, and it’s driving me crazy… okay, that’s better
… where was I? Oh yes – my quest to make some sense of my personal experiences in the context of the everyday world where I operated in on a daily basis. It was certainly not easy going. After all, I’d spent the last number of years alternating between living as a man and a woman, and in the years leading up to my 2008 foray, I’d been living actively (and against my will) as a woman for about six years. It was confusing. And frustrating.
On top of that, I had become increasingly stressed over my work and my marriage — both of which were supposedly fantastic and enviable. And they were. But I was wound tight, so tight, each and every day, and I was melting down on a regular basis for who-knew-what reason. My whole life felt like a sour washcloth wrung up tight and left to molder in a warm corner of an abandoned house, and I had no idea why.
Enter the emerging information about Asperger’s Syndrome, or high-functioning autism, if you will. Back in the late 1990s when the AQ test showed up online, I gained access to information I’d been missing for so long. I dove in and learned what I could. Unfortunately, the info in the 1990s was skewed towards boys and men — especially young boys and men. For women like myself… well, I felt like a footnote. A brief sidebar with a big old “TBD” scrawled across my monograph.
It would be years, before more came to light that I applied directly to myself in a consistent and enduring way. But when I turned the corner on 2008 and started coming across the evolving understandings about folks on the autistic spectrum — especially women — the world re-opened for me in a way it never had before.
Suddenly, so much became clear. Sensory issues — touch feeling like pain, being intensely sensitive to dampness or scratchy fabrics on my wrists, my lifelong aversion to getting my face wet, the once-inexplicable dread of getting my hair cut and going to the hair-products-polluted hairdresser, the overwrought emotionality over relatively “little”, my periodic meltdowns, the head-banging I’d done since I was a little kid, not to mention my difficulties making eye contact, socializing and following along with conversations.
In the space of a few months, 43 years of confusion and frustration were explained by information I uncovered online and at the library. I dove in with even more fervor than I’d mustered in the late 1990s, and I was rewarded richly for it. And yet, my flushed and excited announcements to others were met with hesitation, trepidation, and skepticism… all of which served to shut down that second attempt to make sense of things. I was in a bad way, health-wise, back in 2008, with too much else on my plate to really take up the quest again with the fervor it required. And still, there was not nearly enough written about women, not enough research, not enough professionals on our side, collectively, for me to feel like I could make a go of integrating that aspect of my character.
So, once again, I gave up the quest. And I went back to just living my life and dealing with my aspie issues in particular, each in their own special way, rather than part of an overall pattern or recognizable identity.
I dealt with my communication issues separately.
I dealt with my sensory issues separately.
I dealt with my fatigue issues separately.
I dealt with my disorientation issues separately.
I dealt with my executive function issues separately.
I dealt with my balance issues separately.
I dealt with my physical fitness issues separately.
I dealt with my relationship issues separately.
It was a fragmented, dithered approach to what could have been a comprehensive program of adaptation and adjustment within a unified context. I could find people to talk about each of these items as elements of my life, separate and apart from everything else. But nobody I knew or had access to, was prepared to address them all at once as part of a constellation of issues that occurred for an actual reason.
It’s been time-consuming.
It’s been exhausting.
But I’s all I could do with what help I could find.
Now I’m turning the corner on this approach, and I’m dealing with them all as an interconnected mix of issues that all tie in with each other… and for a very good reason. It’s a reason that most of my friends and acquaintances refuse to so much as consider, and a few will grudgingly approach with the greatest of trepidation. Regardless of what they have to say, think, or feel about it, I’m dealing with this. As what it is. As what I am. As how things are with me.
I’ve written before about the responses of others to my realization/revelation that I (and probably a lot of family members) can be found squarely in the Autistic range of the spectrum. I don’t want to rehash their reactions here, or my disappointment to them. What I do what to discuss, is the impact that this research and many discoveries had on me, personally, and what it’s meant to me.
Along the way, I’ve been asked, “Why do you want to be autistic?” … as though I were just “making myself” a certain way, in order to get attention or create a sensation.
That’s a loaded question. First, I can’t exactly say, “I don’t want to be autistic,” because that would be denying the value and validity of my personality, character and identity. Then again, it seems that life would be so much simpler, if I weren’t on the spectrum.
But I think the question itself is flawed. It seems to assume that you can wish or will yourself into being something that you weren’t before. I don’t think that’s possible. In fact, I think for me (and countless women on the spectrum) that belief that you can wish or will yourself to be what you’re not, is exactly what we’re seeking to get free from. That wish/will is what we’ve been chasing, lo these many years, and it’s made us miserable and sometimes mentally ill.
Claiming our autism isn’t pretending to be something we’re not. It’s accepting — once and for all — who we truly are… that we’re actually autistic, actually aspie, actually smack-dab in the middle of the spectrum that has such a bad rep. It’s stopping the depleting, exhausting, mind-bending, soul-sucking game that we’re expected to play to make others feel better about themselves. It’s like dropping a sodden woolen cloak that’s three sizes too long, but two sizes too narrow around our shoulders, that we’ve been forced to drag around with us for all these years because “it looks so pretty” from the outside… while inside, it scratches and burns and drags us down with its incessant, relentless weight.
Accepting that I’m aspergian — self-diagnosed many times over, thanks to taking and re-taking tests till I’ve gathered a reliable range of sample data — has been a huge step for me that’s finally hitting home, almost 10 years after my second foray into the diagnostic jungle. It’s not a question of wanting “to be” something or not. It’s a matter of stopping wanting to remake myself into what I’m NOT. It’s wanting to understand who and what I am, so that I can make the most of all that. It’s not like I’m “making” myself anything I’m not already.
See, here’s the thing — I’m a pattern thinker. I look for patterns, I look for connections, I seek out the ways in which complex things can be understood, relative to each other. And seeing my sensory, social, communication, and perceptual issues as part of a larger pattern is tremendously freeing. It gives meaning to my experience. It gives a name to what I have, what I am, what I both contend with and benefit from, each and every waking day of my life. All my issues are still my issues, call them what you will — but when I see them within and overall context and observe how they feed into each other, either relieving or exacerbating the challenges of my day-to-day, it gives me the needed information to approach, deal with, and manage them.
I’ve read some folks who say that those of us in the spectrum need to control their environment and a diagnosis gives us a greater sense of control. I conceptualize it differently. I don’t so much want to control my environment, as I want to successfully interact with it. I think those who talk about control are over-estimating the sense of facility that those of us on the spectrum have. I personally don’t need to control everything in my world — but I do need to feel as though I’m involved, that I have a clue about what’s going on, and that I’ll be able to successfully interact with my surroundings… come what may.
Having a diagnosis of Aspergers/Autism provides me with the kind of context I need to facilitate my activity in the world. Knowing what things I can do easily, and what take more effort and concentration, is part and parcel of just being alive and being an adult. It’s like someone finding out finally that they’re color-blind. Ah, ha! So that explains why they get funny looks when they dress themselves in “matching” patterns. It’s not horrible that I’ve got uneven deficits and strengths. It is horrible not knowing what those deficits and strengths are, and never being able to adjust responsibly to them, to live effectively in the world.
It makes it possible for me to be an adult. A responsible adult, who knows where she stands in the world — relative to herself and everyone around her. I have no idea why people are so opposed to us finding out what the deal is, and taking steps to address it all. Maybe people don’t think we can do it. Maybe they have no idea about the depths to which it affects us, and how much it shades and taints our intersections with the rest of the world. I’m not sure any neurotypical individual could wrap their head around it, unless they’ve been dealing with an incurable chronic illness their entire life — but that’s a bad analogy, because autism isn’t the same as an illness.
Not unless it’s never addressed.
But when you address it… see it for what it is… come to terms with it… and then learn to work with it, like a wonky car door that won’t open unless you crank the handle and kick at the side panel… well, then everything changes.
And that’s where I’m at right now. Really, really looking at it and accepting it and being incredibly happy that I’m in the space where I’m at, capable of perceiving “the deal” and working with it.
Hell, I’ve been working with “the deal” for decades now. It’s just become a ton more manageable. Because I’m approaching it as a coherent, comprehensive whole that’s neither bad or good — it simply is.
So, there we are. And here I am. This is no the last I’ll be writing about the importance of diagnosis, especially to adult women who have been denied DX their entire lives.
It’s really just the start.