neurology

Prose of Pagnosia

  • Reading time:4 mins read

My face-blindness is a fucking cartoon. Even if i know to watch for someone, I don’t recognize them if they change their hair, their dress, their posture, their accent. If I see someone who looks vaguely similar, I’m like, am I going mad? Did they always look like that?

It’s bad enough with, say, actors in a TV show. Where things really get strange is with people I know in real life—even people I really should be able to recognize, like my parents or my (now ex-)spouse, right. But, welp! Brain has other ideas.

Say I’ve known you for thirty years; see you on the regular. Then you show up where I don’t expect you—maybe wearing a new hat? My brain: who the everlasting fuck is this, and why are they talking to me like they know me Though I should add, if you talk in your normal voice, I’m likely to figure it out in a minute. Voices, I’m okay with.

With my ex-spouse, they’d do their hair differently and I had to just stare. Was that really them, I wondered. It had to be, right? Was this some sort of a trick? I felt like I was talking to a completely different person; like someone else had been swapped in. It freaked me out, put me on edge. Anyone could claim to be them.

Once at—when I was a teenager there were these strange, depressing parties held for dial-up BBS meet-ups. There was a girl; we were in this weird nebulous relationship, and I think she eventually lost patience with me and my aroace dithering. (Not for the last time!) Once as I arrived at one of these shindigs, a person who looked not at all like her, but had kind of similar hair, ran up to me and hugged me for some reason—and I was freaking out. It’s not just the unwanted contact. It was my brain, going, fuck fuck is this actually her? Did she always look like this? Why do I not remember?

The scene was weirder still in that I don’t think I knew that person at the time. so I don’t know what she thought she was doing. Maybe she had the same problem as I?

Probably not.

But, like. You can see how I always have felt like reality is shifting under my feet, like I’m living in some kind of a dream. Nothing feels nailed down to me, or to act along any kind of consistent rational logic. And here we’re just talking faces.

Holy shit, reality is hard. I can tell you, this is part of why I have never felt motivated to do recreational drugs. The effect I am promised there, that’s the opposite of what my head needs. I don’t need perception to get blown open, man. I need to be able to consistently wake up and expect that I’m living in the same universe as yesterday, which it almost never does. Everything is new to me all the time. There’s no history and reasoning to any of it, and it’s so fucking hard.

That is to say, historically speaking. From recent experience, I feel like Azure has an easier time of it than her predecessor. It’s still hard for me at times, but by God I’ve never felt this rooted. They sure never did.

Between the above and my inability to remember names, you can see the how social situations might threaten to wash over me, carry my sanity away with a hiccup and a gurgle—even before we get into, like, social mores and performance and expectations, and having no idea what anyone means or what they think I do.

It’s scary, man. I don’t know how people do it. I guess their brains just work right, huh?

Me? Why, I get violent anxiety attacks. It’s rad.

Then people scream at me for embarrassing them by having an anxiety attack. Which helps a lot. Remember what to do if anyone you love happens to be in distress.

Ha ha.

Anyway, that’s why I never talk to anybody ever. The end.

Orientation

  • Reading time:5 mins read

A thing I didn’t account for about transition is, okay, it’s one thing to have myself figured out more or less. But one forgets, so easily and so quickly—especially with this addled neurology I’m rocking here. Old habits are hard to break, even when they’re clearly wrong. One begins to doubt one’s self, often one’s basic sanity.

Having physical reminders? It’s amazing. It’s so helpful. It takes away such a cognitive, emotional burden to be able to look down and see, oh, right: boobs. Or feel them brush against my arm when I reach across. To mutter to myself, and for my voice to come back… well, closer anyway to how I want, without my thinking or trying. Having a daily routine, maintaining myself, doing my hair and makeup. Getting dressed properly.

All this grounding, it’s like writing a list and realizing, oh, I don’t have to carry all that in my head anymore and work myself up out of fear I’ll drop one of the balls. All this tangible aspect, it offloads so much burden, and at the same time confirms it’s not just imagination. I can relax.

I am so unused to anything in my head mapping to the world around me that I didn’t know what it was like or how much of a fucking relief it is to be able to just have reality taken care of, so I don’t have to hold it every moment of every day, afraid that it may shatter. I am so used to living exclusively in my head because there has been no interface. Now it’s like reality is spilling out of my skull into my waking, sensory world, and it’s so weird and trippy and makes me feel drunk. If this is reality, and it makes sense to me, what was that world I was living in before? This is why I say it’s like I’ve woken up. It really is. It’s everything before that’s now in question, fading into the cobwebs of a decaying dream.

It’s so strange to rewire my sense of being in the world on such a basic level. Like, this is what it feels like to be alert and aware and to feel things and know things and for all this to be confirmed instantly, viscerally. Is this what it’s like for everyone else, always?

I had no idea how much burden I was holding at all times, and how much space and power and resources that ate up. How it left no room for me to just exist, and breathe, and feel, and want, and be an actual human being. I didn’t know what it meant to be alive.

There’s so much overlap among PTSD, ADHD, autism, gender and sexual dysphoria. It’s common for them all to be… I don’t love the term comorbid, but you know. You’re toting around one of these disorientations, the chance you’ve got another one is that much higher than if you didn’t have any. And each one just adds another layer to the yergh.

There’s this sense of carrying around one’s own reality all the time that doesn’t match the models provided, which one has to learn to entertain and navigate while translating all the way. And until the disjunct becomes clear, there’s just this continual knowledge that something, everything is wrong, nothing is working, your ideas never seem to match the physical world, and you don’t know how or why. And it’s such a fuckery. It’s so isolating. Nothing makes sense.

For decades I’ve made the analogy that my waking life, it’s like watching a TV screen. If I fell hard into identifying with videogames as a medium, that’s because that’s basically what life was like. Sitting apart, pushing few limited buttons, hoping they do what’s intended. You want to take these other actions that aren’t pre-programmed in? Step over that police tape, see what’s up that hill, talk to the creature instead of stabbing it? Tough. Those aren’t the rules of this world. Learn to play the game right if you want to get anywhere.

It’s no accident that my reckoning with all of the above pretty much has happened in one rolling wave. It’s all tangled up, intertwined. And letting it out…

There’s also this anger, that I’ve never been allowed to feel. Like, anger is one of the Bad Feelings, right. Except it’s not, of course. Emotions are neutral. They just are what they are. They’re signals. What isn’t neutral is one’s behaviors; how one acts on them. Denying the feelings, that’s basically the first step to major dysfunction.

There’s a lot to be angry about. And it’s fine.

One of the overwhelming narratives of the last month or two is, how dare they keep me from myself? All of them. How dare they. And that’s really what it comes down to. This is what I could have been this whole time. It didn’t have to be the way that it was. I lived through that for no reason.

I barely can wrap my head around what I dealt with, for so long. It’s a lot. There’s so much that I’ve accepted as normal, that’s just… clearly not something a person should have to put up with. But it’s getting better. I’m finally putting together this world that I guess comes pre-assembled for others. Becoming human.

It turns out, reality is intoxicating. And I want to feel it, encourage it, declare and define it as an ongoing work. I need to keep this moving.

Stonewall

  • Reading time:3 mins read

For allistics, every interaction is on some level a power struggle. It’s not about understanding; it’s about asserting. You can see this in politics as well; the more explanation a candidate gives for a position, the less people seem to respect that candidate. If they just assert, â€œthis is how it is,” no matter how irrational or unreasonable it is, then people back away and go, okay, clearly they know what they’re talking about. 

I don’t like to fight, I have no interest in controlling anyone, and I want to know the reasons for things so that I understand how stuff works. But the more that I try to earnestly engage with allistics on my level, giving them all the tools I need to deal with a situation, the more aggressive they become. Because they see it as a fight they can win.

So the more quickly and bluntly you can shut them down, give them no leverage to even question your decisions, the smoother things will tend to go—as unintuitive as that feels.

“No.”

“I’d rather not.”

“I can’t do that.”

“I just can’t.”

I can’t stress this enough: allistics don’t want to know things. They don’t want to understand reasons or methods or meaning. They think they have it all under control, and that you’re undermining them, insulting them, if you give them anything to work with that interferes with the conclusions that they will form on their own. 

You’re controlling the story, they think, with all these facts and details, and not letting them write it themselves. How dare you. Well, they will show you who’s in control of the story. 

The only solution is not to engage. Don’t give them anything. Then they can’t throw it back at you. 

“This isn’t a negotiation. This is me telling you no.”

I think this is why consent is such a big issue for me. I don’t do power struggles. I don’t do negotiation. For me to say something, I’ve already worked out all of the angles I can and proposed the most generous possible solution, reserving as little as I can manage for myself. For someone to question that and say, no, you’re being a dick; I need more than the 95% you’re giving me, it’s just…

No.

I said no.

Fuck you, I said no. I won’t let you kill me.

I am so vulnerable to manipulation and guilt, to give up what autonomy I have over my own mind and body and emotions and needs and desires. I’m so prone to giving more than I can spare, even after I’ve drawn the final line, just to keep the peace.

No more explanations.

Just, no.

Setting boundaries is hard as hell. But if you don’t, it’s an invitation for abuse.

The Understory

  • Reading time:6 mins read

Autism is such a trip. It’s something of a revelation to notice how much, actually, everyone you get close to really fucking hates you, deep down in their bones—and to realize in the same breath that, actually, this has nothing to do with you. When that bolt hits, it just kind of makes you scratch your head at the world and say, “Oh.”

Between the official diagnosis and documentation and the “I am totally an ally because I know how awful it is to have to make allowances for somebody like you and I truly hope for the day when we can cure people like you of being like you” crowd, there’s a lot to recompile about the world one lives in, and one’s set of assumptions about how one fits into it all.

You kinda go through life, nodding, thinking, “okay, whatever you say;” just trusting and accepting what you’re told about yourself, even when it clearly isn’t working. You’re used to the world being this big place, full of things you don’t understand, and you’re grateful for any pointers you get along the way, to make sense of it all. It’s this minor brain explosion to realize, maybe they’re all wrong. And that they’re wrong for, frankly, the most obvious set of reasons: they’re just talking about themselves. As people do.

All this difficulty we face, it’s not some big system that we’re oblivious to, so we just have to trust that other people know what they’re doing when they tell us how awful and broken we are. It’s that they’re the ones who are blinkered.

There’s this full reversal. Everything they project, it’s… them. It’s themselves they’re describing with such contempt, for the most part. It’s their own perspective, their own assumptions that they read into this thing that they aren’t equipped to understand—because it’s not for them. The difficulty we face, it’s entirely about perspective. And they’re the ones used to everything being tailored to them, so they have no idea how to react when something isn’t. We’re the ones who have to mode-shift, interpret, translate, every single day just to get by. We’re the ones who got this.

All of this sense of Wrongness that one lives with—to be able to hold up a mirror, and understand the actual dynamics of this hostility and stress? To be able to recognize it as hostility at all, and not the faux concern that it’s presented as? That changes everything, completely. There’s this baffling clarity, literally like a window shade snapping up. And everything looks very different: “Becky, you know, I’m suddenly compelled to ask, are you okay? ‘Cuz that ain’t a good look for you.”

Dimensions of Mind

I don’t wanna water things down by cross-comparison, but there’s a huge overlap between neurodiverse and queer circles (for instance: me!), and there seem to be a bunch of arguments how they’re all kinda dimensions the same thing that needs more study.

By extension, so much of the way people respond to autism (or other diverse neurologies), especially by “long-suffering caregivers” or others who try to present themselves as allies, comes off as a whole lotta TERFy garbage. Take your Graham Linehan, or any other garbo “gender-critical” figure, and swap out the nouns in what they say, and it’s basically what you get directed toward autistics and other diverse neurologies on a daily basis. Same basic kind of grossness, except it’s less obvious without the signifiers—because we aren’t often acknowledged as valid people. The culture still insists there’s something wrong with us, that should be fixed—for our own good, yes, but certainly for the good of those who would rather not learn to deal with us.

Though I hesitate to muddy the waters, I feel I need to make this comparison to emphasize the universal patterns of toxic responses to atypical neurological states, to which, yeah, the various LGBTQIA+ spectra seem to be close kin. As all that alphabet soup should attest internally, a certain solidarity helps in identifying and working against this external garbage. We all know what it means to be treated as subhuman because of literally the way our brains are wired—sometimes on multiple axes at once. But a few of us, we’ve gained enough legitimacy to be able to reach down the pit and form a ladder.

It’s amazing to take the anxi-vax crowd and clarify the self-centered eugenic bigotry driving their crusade against science by, again, shifting the specific nouns: “Vaccinations caused our child to be gay!” Which, to be clear, is actually what we get from InfoWars. They’re just more open about their hatred. But outsize of that bubble, in 2019 that sentiment is likely to make most people shift from foot to foot, uncomfortably.

If you broaden your selection of shifted nouns to other marginalized groups, it gets even more dicey. Like, whoa, you can’t say that at all, ever, material. But in the case of autism, it’s okay. We don’t know what’s good for us, because long-suffering experts who have watched us closely through tempered windows say that we don’t.

To flip that table, and lay bare the dynamics one has been living under for decades on end—it unleashes so many emotions, on so many levels, it’s hard to know what to grab onto. For me, though, after a brief spike I was surprised to see that this kind of dissipated the low-level anger and resentment that I have so long internalized and redirected at myself. Now what I get from all this, it’s more a sense of pity. I think of the people around me, those who have shown my such scorn just for existing, “Oh. I see you now. Gee. I mean, of course you’d respond that way. You don’t know any different, do you. How can you.”

It’s like I’m seeing a feral animal. I don’t blame it. I don’t hate it. I don’t want to get close either, but I think, you poor thing. You really have no idea what’s happening around you. It must be hard, huh.

It’s also theoretical at the moment, like all other aspects of my life. There’s all this trauma for me to work through, and I can’t actually deal with people In Real Life without reacting like a startled raccoon myself. I’m a total mess, all things considered! But, that compass is no longer spinning wildly. I see a bearing now.

And flipping the narrative leads to some pretty amazing dimensions to reality, that I’m surprised to feel excited to actually explore—surprised, given how severely my excitement has been tamped down by life, so far.

I don’t know how to get there, I don’t know what kind of a plan to make, but I’m beginning to see a way forward. Which is more than I’ve ever had.

Service Games

  • Reading time:5 mins read
Jeremy Parish muses over the NES ports of SNK’s Athena and Taito’s Arkanoid

Watching Jeremy Parish doing his best to defend a game he clearly does not enjoy, a bunch of things are clicking into place for me, suddenly, about the role of performance and execution in the allistic mind, compared to theory and intent.

For most people, what you mean to do, have to say, is all well and good—but even at their most generous they have trouble caring all that much unless it’s presented to them on their own terms. They almost seem to take personal offense when someone doesn’t bend over backwards to predict what they want and have it all ready and waiting, fixed exactly the way they know they like it best, before they arrive.

Whereas to my mind at least, polish is… fine? Like, it can be a nice last thing to help with clarity of vision. But what I’m most interested in is what the message is, what someone has to say. I don’t tend to assume that things are about me, for me, because nothing ever is.

The things that give me life are the most developed, interesting, original visions—which often are difficult to communicate and need some level of intent engagement. If that’s not there, and all I see is polish, it’s, there’s nothing to engage with. I don’t see the point at all.

Athena I find an endlessly fascinating game, in part because it’s so impenetrable. There’s so much going on here, so much I’ll maybe never fully understand, and that’s amazing to me. Arkanoid is also-good, but that’s almost entirely because of its vision. The clarity of its execution does little to improve communication of its vision, so it doesn’t really fuss me one way or another—except to make me nod and say, oh, yeah, I get it; interesting. I find myself thinking about it far less, ergo it occupies less space in my mind. With the game taking up less space, inspiring fewer synapses to take root, it gives me less fuel for general Understanding of Stuff. Less of a sense of wonder. Less of a sense of something bigger, even than the game’s own ideas. (Again, though, Arkanoid is pretty wonderful itself.)

And, you know. In the exceedingly rare instance when something does appear to cater to me, it rankles the heck out of my suspicions. And often with good reason. It’s almost always toying with me, and I almost always feel used at the end of the exchange.

The works that are all head-down and almost totally unconcerned with how they come off to other people because they’re so focused on exploring a notion that they’ve hit on, those are the most absolutely exciting things, and I just wanna be friends with them.

Granted, Micronics (the one-bedroom company that handled the notorious NES ports of several early Capcom and SNK titles) is awful. No way I’m gonna defend their coding. But I don’t see what that has to do with the ideas at play; it’s just another systemic barrier. Like, to me there’s a big difference between dismissing Athena, the game, and dismissing Micronics’ coding on Athena. Yeah, it’s an absolutely barfy port—but enough about that; what’s going on with the game is…

Anyway. This mode of engagement here, this allistic impatience with the strange and expectation for service, it ties into issues of abuse in past relationships, and into observations about privilege and expectations about media and shaping of information—like how white cishet men go apeshit when things aren’t specifically made for them. This all also further ties queerness to neurodivergence…

There are degrees to everything, of course. Parish is behaving entirely reasonable in this video, and makes some sincere effort to engage with the merits and ways-of-thought of even the more inscrutable of the two games. But I think in the clear effort that he shows to be fair, he kinda illustrates the issue.

Like, the dynamics become very clear: Athena is a strange game that doesn’t make much of an effort to explain itself, and it takes a supreme amount of patience for him to cut through that and engage with its perspective as well as he can. And he’s clearly not thrilled with the task.

To put maybe too fine a point on it, the attitude that Athena receives in this video, it’s sorta, well, it’s the best I feel I usually can hope for in treatment myself, from most people. And this level of patience is pretty uncommon, because of the effort it takes. Most people aren’t used to having to do this all the time.

Being autistic, of course, I am! It’s the only way I understand anyfuckingthing. And so if I’m gonna put the same effort into just comprehending-at-all a glossy surface with limbo behind it as I do a rusty shell filled with wonder and mystery, I’m gonna invest my energy where it’ll do me the most good.

(I’ve always been drawn to archaeology and lost information that has to be puzzled together. The thing that really got me into Doctor Who, after multiple efforts to engage me, was the return of “The Lion” in 1999 and stumbling into the whole missing episode situation.)

There’s a certain magic to puzzles. If by the act of engaging with a thing I understand it into existence, and am able to help communicate its ideas more widely, I feel like I’ve made the world a little better. Like all of the supreme effort it takes just to live has a purpose.

Which I guess also explains the kinds of writing I’ve done over the years…