I’m supposed to get together with some Aspie friends tomorrow to hang out in one of the cool spots in a nearby city. I would love to go. I love the idea. But I’m done. Just done. I’ve got a lot of stuff rattlin’ ’round in my head, that needs to be seen to. I’ve been so caught up in bureaucratic red tape, along with the moral outrage that any of this is happening, as well as a sudden upsurge in busy-ness at work, that it’s drained a lot of life out of me.
The thing I have going for me, is these ideas that are cookin’ in the background. There’s some really interesting stuff brewing, and that gives me hope, even as I wrangle the real-world non-sensicality I seem to be marinating in, right now.
In the clarity of my own mind and my own logical ways, I find tremendous relief. When dealing with non-autistic people who have wrong information (together with no apparent wish to get the right information), it feels like I’m literally losing my mind. That’s probably the worst thing… The willful perpetuation of rank incompetence, completely unencumbered by awareness, regret, or the desire to remedy the situation.
I’m also working at getting my bearings after my autism assessment. I hadn’t realized just how hermetically sealed I’ve been in the offline world – how much I work at keeping things “under wraps” — especially with healthcare folks. That includes doctors, specialists, as well as therapy folks. And it extends from my providers to my partner’s, as well. Pretty much any and all healthcare professionals of any ilk, who are in a position to seriously mess me up with medications, bad advice, misdiagnosis, etc.
It’s pretty difficult to communicate and work effectively with people you fear and mistrust, and with whom you feel very little connection, because they are either unable or unwilling to see you for who you are and treat / interact with you accordingly.
Same goes for bosses. Work situations. Coworkers. I’m fortunate to work in a place that’s chock full of Aspie types, so I’m not out of place. But there’s still a whole lot they don’t get about my situation, and I’m not about to tell them. Like that business trip back in May, when I had to “work” the convention, standing for hours each day in a massive expo hall, suffused in blinking lights, loud noises, milling crowds, and a steady stream of passers-by whom I was supposed to engage and bring into the booth to discuss at length with them. Oh. My. God. It was awful. But everybody acted like it was no big deal. I did it, but Lord, how I suffered in the meantime.
And nobody but my partner actually understood just how grueling it was for me. Not my doctors, not my therapist, not my coworkers, and certainly not my boss, who thought it was all tons of fun.
I made it through in one piece, but I paid in a very big way. And the whole time I was there, I was on extreme high alert. I may have to go back and do it again next year, too. Because I was so successful at it. Great for them. Terrible for me.
Well, at least I didn’t melt down around any of them. That’s a huge plus. And I managed to remove myself at semi-regular intervals to recover in the quiet of my room, so that mitigated the sheer hell of it all.
I just wish I’d had a better grasp on how much my autism factors into those kinds of situations, so I could have been more confident about the strategies I was using. Part of the problem of being un-diagnosed, for me, is that it makes it easier for me to dismiss my issues and not even acknowledge them, not factor them in. I always have this “out” in the back of my brain saying, “Well, nobody official has actually said you’re on the spectrum, so let’s disregard the Klaxon alarms going off with you right now.”
That remaining 2.275% doubt in my mind allowed me just enough room to Ha-Ha! go on my merry way, dancing along the edge of the cliff. Fortunately, I didn’t fall over the edge.
Now, though, that’s not conveniently available to my little brain anymore. So, I have to pay attention. It’s non-negotiable. And I have to come to grips with the actually disabling aspects of my Royal Aspie-ness. It’s a stretch for me to actually consider myself disabled, and maybe it’s something I need to work towards. But truth be told, there are really significant traits that are disabling to certain aspects of my life. I hate asking for accommodations, and I hate having to navigate the social minefield of explaining my limitations to others. It’s one thing, if I’m working things out in my head. It’s another, if I have to explain things to others.
Fortunately, even if I can’t really explain to others what the deal is with me — and they might not believe me, anyway — I can work things out in the clarity and logic of my own head and figure out ways around situations on my own. Rather than battling against the incessant lights and noise of an expo hall, I can build in time away from it all, ducking out to sequester myself in a closed bathroom stall… getting something to eat or drink off the expo floor… making sure I have enough alone time to recharge and get my head back on straight.
See, as debilitating as my Royal Aspie-ness may be in the context of the outside world, in my interior world, it’s a joy like no other. It’s a constant wellspring of delight and elation, an oasis of fascination and curiosity and order and logic in the midst of a severely disordered, disconnected, ugly, and unspeakably ugly world. It’s my refuge, it’s my domain. And I always have it there to draw upon, when things around me are closing in and feel like they’re crushing me flat.
During that gauntlet of an expo, I had many hours of silent contemplation of the mountains to the east of the city, sitting in a darkened room with only my own thoughts for company. I had times of blissful solitude in the early morning light, as I went for a walk before anyone but the sun was up and about. I had some really great interactions with individuals who were eager to chat about their favorite things and gave me some welcome insight into what their own worlds were like. I got nearly enough sleep. And when I returned, I had no trouble sleeping at all — because I was home again, safe and sound.
And despite all the difficulties it causes me (or rather, the world causes me because it doesn’t “get” me), I wouldn’t trade my autism for the world.
The source of some of my greatest vulnerabilities is also the source of my greatest strengths. And on the balance, it’s worth all the trouble.
It is so worth it.