Monthly Archives: June 2018

Autism, Mainstream Media

“Functioning” labels don’t work

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tl;dr: The utility of “high functioning” and “low functioning” as labels is outweighed by the harm they cause, and are inadequate descriptors at best.

Decoding the High-functioning Label. A good breakdown of why functioning labels don’t work.

ASAN (Autistic Self-advocacy Network) has a position statement.

Why “high functioning” can be code for “passing”, and what this can mean in context.

Another “high functioning” as “passing” post.

TW: suicide mention, some jerk in the comments trying to pull the “you’re all snowflakes” routine.

Recent research on why camouflaging may be harmful.

From 2012/2014. The celebrities, they are not like you and I, this is why they serve as social placeholders for all. Everybody and nobody is autistic! /sarcasm #allisticlogic

Autism, Film, Interests, Music, Perseverating, Pop music

Persevering in the Arts, Perseverating with the Arts, Ah Yes, The Persevering-Perseverating Arts

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I’m trained in writing and music, both via self-motivation and formally, but I have an active interest in film as well. I grew up watching classic comedies, Neil Simon and Costa-Gravas. I may not have got all the political references in the latter (I was in grade school, and they don’t teach about Greek politics or US counter-insurgencies in South America in the ever-conservative US school system, for some reason /sarcasm), but the feel of his films stuck with me. I’ve thought about becoming a filmmaker at various points in my life, have made short films, and at one point, had a screenplay in the beginnings of an option process; I know the industry moderately well. The times I’ve thought about designing games, one of my inspirations has been Peter Watkins. I have a whole list of Fassbinder films to go through. Film is not one of my primary disciplines (that would be writing and music), but it’s an active part of my creative process.

Even with all that, and professional training in two directly related disciplines, separating out “film theory” from “I just want to watch the first Avengers movie over and over, leave me alone”, or distinguishing my classical music and composition training from “I want to listen to the same Tune-Yards album over and over. Stop bugging me” can be hard at times. It’s a challenge to allow time and room for all of the above, rather than turning my perseverating over a given work into a negative, in artistic terms. “I’m not being disciplined, I need to stop.”

Usually what happens if I try this punitive approach, is that I’ll keep thinking about the work I’m perseverating over until I give in. Once I do so, I can feel the stress drop off of me. It can be frustrating to go through a creative process around what looks like a block, but in fact, is just “I just want to watch or listen to <thing> over and over again”. If that’s part of the artistic process (which it can be), I’ve learned (after many years) to let that be what it is. If not, not.

Alexithymia and catastrophizing can make this even more complicated. Like a lot of artists, my work is part of, and reflective of, my emotional process, and that can spill over into practical decision-making. “Do I want to start a band that has some elements in common with Tune-Yards because that’s where the songs are leading me to, is that because I’m perseverating, or is it because I have a fascination with drum machines and hand percussion, both? Do I need to drum more? Do I need to get better at programming drum machines? If I’m going to do this, how am I going to find musicians again? How are we going to organize ourselves? I hope it’s not like the other times where I tried to “lead” and wound up just making a mess of things. OK, I’m starting to feel like a huge ball of emotional twine here. I need to rest.”

So which is it? The answer is: yes. *All* of these things, they’re all valid, I’m just struggling with unentangling them. Meanwhile, the “arts professional” part of me is thinking: “Avengers, pop songs, whatever gets me through. Fuck, though, I’m not writing songs. I’m not practicing. I’m writing this blog, and I’m reading fiction, even though it’s a struggle at times, but that’s about it.” This may sound like i’m unfocused, but it’s more the opposite: I’m *very* focused, in multiple directions, constantly. From all of that, one primary focus emerges, most times, and that becomes the all-consuming focus, with all the rest of it being a sort of constellation surrounding it.

Or I just watch “Winter Soldier” again.

Further, something I’m working on will end on its own, and leave me creatively empty. A piece is completed and released, or I reach a creative plateau in my process. when that happens, sometimes i go on to the next piece after a break – but sometimes, an entire discipline or sub-discipline is dead to me. I’m grateful for it having gotten me to where I am, but done is done. Months or years later: it all comes flooding back, and that’s where I am at for a while.

Avengers. Pop songs. Even though I think Marvel’s storylines are jingoistic and simplistic, and I can’t stand how Disney is jamming viewer’s psyches into the equivalent of a press mould, young and old alike. Just like I’ve been playing “Nikki Nack” for weeks now, even though I think Merrill Garbus’ race politics are self-serving and very “White lady gets religion about racism 101, after years of living in Oakland, imagine that”. On a loop, over and over again. “I’m the real thing, real thing, real thing. *be boop, be boop* There will be always something you can lean your weight into. I will be always something you can rely on.”

I’m crying now. (No, you’re crying.)

It’s a complicated process. Not just complicated like “being a working artist can be complicated”, not just complicated like “being an adult autistic can be complicated”, it’s both of those things, and they’re in a sort of dance with each other. It requires a gentle hand – forcing things one way or the other, won’t work. (I’ve tried; I’ve gone through and applied several artistic self-books, from the most “baby steps” to the most “your creative discipline is all that matters, push everything out of your mind and body”, and come up with my own processes, over years. No matter what I do, both remain.) I’m autistic, I’m a working artist, I’m autistic and a working artist. Period.

Trusting the process can definitely help, but that’s not going to be of much assistance when the deadline looms or the dress rehearsal is about to happen, so to speak. I find that the demands of the creative workplace – which can be as much about labor as any other form of work, and work’s demands as well, from an editor’s or conductor’s perspective – sometimes are just on two different paths. nobody cares that I want to watch everything Fassbinder ever made. A deadline’s a deadline.

Aside: I shudder to think what it’s like for an autistic child or teen who doesn’t get the kinds of flexible support that I did, because without it, I would’ve been lost. I lucked into good teachers, who encouraged me to write, and supported me in that, as well as not being on me to “toughen up”. I also had several truly awful teachers, who did things like trying to force eye contact, or who literally assaulted me for not following some minor rule. It happens.

I hope the programs that are out there which provide a means to channel interests into a creative discipline (or any other discipline) are accounting for this, because there’s nothing more distracting than not knowing how to live with both impulses, creative and perseverating, when they sometimes compete with each other. (I also think that forcing 40 hours a week of aversion therapy on autistic youth is a form of torture, but that’s its own topic.)

I suspect the impulse here from allistic teachers and support staff will be to suppress one or the other, or just give up – don’t do either of those things! Allow space for both. Even as an adult, I’m pretty antsy, if not fighting being mildly combative, if I don’t allow space for both. Not having a proper outlet in both cases to just be myself would’ve wrecked me, I’m convinced.

Autism, Autvoid, Performance, Poetry

Poetry, performance and an epistemology of one autistic closet, used

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I suspect among the small scattering of people who know that I write experimental poetry, many people do not understand it, let alone are able to make sense of it. I also don’t care, my work is my work, but I am aware that, if anything, the work itself has always run the risk of me being labeled as other – as I quickly figured out when I would mix my own type of angry, liminal, non-structured rhetoric with slam poetry in performance, full of hyperbolics, violent epiphanies and thrashing about with my hands and arms, early on in my “career” as a poet.

Sometime in the early 2000s, after I had performed an especially difficult-to-digest, very “high affect” piece, I said to the audience, “You may think that this piece means that I’m schizophrenic…”

Then I looked out at them.

*Nervous silence*

*Nodding*

*Nervous silence*

“…but trust me, I’m not.”

*Nervous silence*

So I quickly figured out that just unmasking and letting everything hang out might freak people out. I’m good with that as well, but in the interest of being able to reach audiences (as well as not torching the chances of my getting work), I undertook a sort of performative camouflaging process. Especially when reading/performing publicly, I look at providing a narrative anchor to the audience as critical, if not a responsibility, so I’m not just casting people adrift in a barrage of words and stream-of-consciousness imagery. As such, I figured out how to channel experimentalism into more acceptable, less risky modalities: I’d mix in pop culture and commonly known historical references, and have pieces that were more like traditional slam poems, and fold in experimentalism and more difficult-to-digest pieces on the sly a bit, or selectively.

That was then. I’ve been trying to figure out for a few years now why my entire style of writing poetry – page-focused (as opposed to performance-focused) poetry in particular – non-linear, highly experimental, symbolically-driven, textually dissociative, but also, a reflection of how I process information on a daily basis – had turned into a process where I’d write very terse, very minimalist poems, less than daily, from 2009 until this year. In addition, I stopped writing for the stage, and gradually, stopped songwriting as well.

Figuring out ways to address this as a “writer’s block” sort of problem was completely intractable, which is also not standard for me. My usual approach to writer’s block is “If life gives you a writerly lemon, make a different kind of lemonade and move on.” If I’m not writing poems, I’m writing songs. If I’m not writing songs, I’m writing essays. If I’m not writing essays, I’m trying to write a concept for a TV series. No luck, nothing. While I kept doing other (mostly underpaid or unpaid, thanks for nothing, gig economy) work, and was moderately productive, if not as publicly visible – the poetry had just vanished. Simply put: my usual toolkit didn’t work.

I’d try to push the work out of its seeming rut – to “trust the process”, and write to it – nothing. The dense, fragmented rhetorics and poetics I would engage in my work, thanks to good mentorship in my MFA program, and a lot of personal experimentation afterwards? Gone. “I’m specifically trained not to fall prey to this sort of thing, ever. If the work isn’t coming, you step it up or change the approach. This though feels like an alien took over my head, and is running a lab up there. So what’s wrong?”

Give me a healthy, supportive environment, and I’ll *never* stop writing, as long as writing is my primary focus. My rep is for having deep pockets – ask me to read somewhere, I’ll be on point. Always. For example: I finished a full poetry manuscript, while unemployed, recovering from housing instability, trying (and failing) to get into Ph.D. in Literature programs, and the late stages of grief over my father’s passing. I finished part of that manuscript, right after finishing an MFA, in a small midwest town I’d never been in before, as part of a five week residency. Why did this work for me? It was a midwest winter, in a quiet town, where for the most part, everybody left me to my own devices. If anything, the residency staff gave me a polite side-eye and gently told me to stop talking about my entire life with them when I tried to so do (happy-yet-slightly-anxious info dumping!), and get back to work. So I’d wander on the good weather days, talk with locals when it felt safe (which it frequently did, even if I side-stepped certain things, like the actual damn noose in the case in the back of a cowboy store – I’ll just not be asking about this and go, thanks), and write. Productive as an upstanding member of society? No thanks. Productive as a poetic anarchist firebrand in a room of my own? Gimme.

Then that whole approach to being a poet/performer/writer just…stopped. It had been coming for a while, but not in a way that looked like the well running dry. Everything was good, or at least, ok – but this was different.

By way of (imagined) example, this was a good day’s poetic output, for about 2-3 years:

A tree.

In a forest.

Send ready help.

“OK, done for the day.”

So then, I’d spend rest of the allotted writing time trying to figure out what the hell was up, before I moved onto something else (much of which I couldn’t get off the ground, either) – but it still bothered me. Something felt off.

In contrast, here’s a description of a given day for me, when things are well and I’m happily productive as a poet:

*Writes one to three poems*

*Moves onto refining the lyrics for the next EP, possibly writes part of a new song, or edits a poetry manuscript*

*Breaks for lunch*

In economically stable times, this can even look like having a part-time editing and production job! (Hire this neurodivergent anarchist troublemaker! I’m available most afternoons.) If I wasn’t working at a day job, I’d use the afternoons to rehearse, and the evenings to produce and record. All of that seemed on long-term hiatus, though, and shifting what I was writing around until something clicked wasn’t working as well. Why?

I went through a list of obvious culprits – needing to creatively recharge, life transitions, grief, stress, burnout, limited (and freelance) employment – and none of it mapped to anything that made sense, especially in an “ok, there it is” sort of way. All of those things were present, but addressing them, which I did, successfully – made no difference. I’m no stranger to any of those things, including experiencing all of them at once. Grief hits me hard, but it’s not like I can’t handle it, either. Burnout sucks, but I’ve been through that as well, and know how to bounce back from it. “Something is “wrong” with me, it seems. But what?”

What I now know: I’ve been cycling between interests for decades that include the following: poetry, prose, performance, anarchist/leftist political organizing and direct action, reading, watching TV and film, biking, hiking, traveling, wandering (and wandering and wandering…), graphic design and book layout, game design and interactive multimedia, audio coding, mixing and producing (which is different than writing or playing music), and last but not least, human systems and critical theory. While I’m a professional writer, and have been since my mid-20s, I’m still autistic, I have varied and deep interests, and it shows. Cycling out of writing performance pieces and poems is just part of the process. Eventually, things come back around, but I need to be patient with myself, and let things wax and wane as they do. If this means changing course and leaving people wondering where I got off to, so be it.

Back then, though? It was a serious head-scratcher. (CW/TW: mainstream stereotypes about autism/Asperger’s.) My usual response for several years to reading a fragmented, partial description of autistic traits in the mainstream press, or elsewhere: “That’s definitely me, alright, but…hunh. Isn’t Asperger’s about being some sort of male-identified super-nerd, though? I’m trying to get away from the (sexist, racist, misogynistic, sensory-hostile) office-based computer industry. Hunh. Still, though…hunh. What if terfs start doubling down on harassing me online as a result of me starting to ask questions about Aspergers? ‘SEE? You really are a man, a man, a man, a man… (echoes across a wide canyon).'”

So then I’d think “You know what…fuck it. Fuck the computer industry, fuck codifying someone into a box, fuck the psychiatric industrial complex, fuck the mainstream media, and above all: fuck men. I’m a self-empowered trans/intersexed/queer woman, I don’t need this shit in my life”, close the browser tab and try not to think about it. There was effectively nothing out there about autistic women (trans and cis alike), autistic POCs, autistic queers.

Also, a lot of the Asperger’s media coverage didn’t even mention the arts, they provided a “good at math, good at computers, silicon valley is interested in you and your math whiz brain!” white male aspie stereotypic profile instead, at best. Which is fine of course if that fits how someone’s autism presents, but otherwise? Like the saying goes: not helping. (It’s also true that I love trains, and have programmed since I was 19, for what it’s worth.)

Further, I was surrounded by neurotypical people, in a noisy, polluted (and sometimes, socially conflict-laden) environment – for over 10 years. In other words, everyday urban life in many an urban city, as well as everyday life in grad school and activist collective houses. Many of the performance gigs I was getting were tied to white-dominated and/or middle class, college-educated POC writer/performers and audiences, which I was working to expand beyond, and frankly, felt sort of ridiculous engaging with via experimental work that they both got and did not get, utilizing rhetorics that they both did and did not get, as part of a radicalized politics that they sometimes got, but also: smile for the camera and “can you tone it down a bit”? Nevertheless, I was starting to learn the queer performance industry in its then-present manifestation. I was optimistic, roadblocks notwithstanding.

Then the global economy melted down in 2008-09. No new work, both in terms of performance and high tech, which meant declining performance gigs, while looking for onsite tech work to make up for the loss in income, which I mostly detest. I was coming up with nothing on that front, either. Brokeish, saddish, sickish. An affrontive front of fronting, with no open front door, email only, please and a pile of “at this time…” replies. So then, I started a blog about the crash, and what I was going through. Somewhere between being flat broke, in debt, getting sick all the time (I get really bad hay fever) and not knowing when all of that was going to end, the blog dried up as well.

I’ve come to the conclusion, years later, that relative poverty, illness, socioeconomic instability and the autistic closet were all at the core of an extended-yet-unfamiliar writer’s block. At the time, I was perplexed: it’s not like I haven’t been a broke-ass, sick, deeply frustrated, multiply-hyphenated poet before, or for that matter, a frustrated, multiply-closeted tech worker. For example, take your typical bro-dominated tech department, where I labored for years as a tech writer. This one place I worked for couldn’t handle my inability to context-shift and read tech guy’s social cues, and they were definitely higher on the pecking order, even if professionally, we were supposedly peers. My boss: “It’s amazing how impossible it is to fire someone here”, within clear earshot after weeks of arguing over things. Dealing with adversity in relation to work is just one of those things that comes up.

The difference with those jobs is that if I had the energy at the end of the day, which is definitely not a given, but has happened occasionally – I’d work on what I am actually passionate about on evenings and weekends. It’s sort of exhausting, but I can handle it, and the work itself recharges me, even if dragging myself to work is still…dragging myself to work. Frequently in an agitated, weepy, and angry, likely bordering on melting down state? Yes. “No there there, you are officially a non-poet poet”? No.

The happy ending: I’m back on track. I need to find work (or more likely, create an economic framework for myself on my own terms), but I’m not going to tank tomorrow. My mom passed, which hit me very hard, but I recovered. I had an eighteen month stretch where I taught myself game design, but that passed when I hit a major learning milestone, so I was clear headed enough again to go back to being hyperfocused on writing and music instead. (During that time, I’d keep trying to write, and would start thinking about coding and level design instead. Music was somewhat better – I released a new EP, and worked on my piano chops.)

What have I learned from all this?

1) Thank god I’m writing again! I’ll ride this particular wave for however long it lasts, and when I’m onto something different, I’ll ride that as well.

2) Given that I hadn’t self-dxed yet, I had no idea what interests were, and how they can play themselves out. I’d call all of them “projects”, even though my sense was that they weren’t *just* projects, either. I also had no idea that interests can consume all of an autistic’s person’s energy for a period of time – then one day, just sink like a rock to the bottom of some very deep ocean. When it returns – if it returns, which for me, it tends to, eventually – it returns. If not, not.

3) Living in close proximity to neurotypical people – large numbers of roommates, or a small, closely quartered apartment – is *not* healthy for me. It’s like having a dissociative meltdown in slow motion, directly proportional to how “normal” I try to act. While my current place is a lot better than my previous one, it still has its problems – street noise, loud neighbors, way too much sunlight, pollution, bad ventilation, no AC. I need to fix this – I’m not sure how or where yet, but I will.

My best estimation now is that because a) it’s unclear to me if I was diagnosed as autistic in grade school or not, b) I was lacking any neurodiversity support, save for a friend or two, for years, and c) I was surrounded by people who were either neurotypical, or unsupportive if not hostile to people whose form of neurodivergence differed from theirs for years as well, my creative work was starting to suffer. To some degree, this includes graduate school as well, which both helped my creative work, and hindered it, due to it being a frequently toxic, heavily overworked environment.

Further, earlier in the decade, I was starting to have meltdowns again on a regular basis, to the level of causing conflicts and concern among roommates, but didn’t have the words to describe why they were happening. These four aspects probably resulted in the work reflecting my newfound, relatively more “normal”, yet very terse, minimalist, experimentalist, almost dissociative, style, eventually. On the days that I’d write poetry at all. I was basically experiencing an extended shutdown, that built up over time, that was reflecting itself in the work.

4) Masking, even among like-minded social outcasts, torches my creative output and messes me up emotionally, as well as making it a lot harder to maintain a health regimen around even fairly basic things, like hay fever. “Ask me about the number of times I’ve had an ear-nose-throat infection!” Where I am right now has similar problems, but it’s also three stories up, which filters out some of the street noise, in a large enough apartment complex that everything pretty much runs on its own (sadly, corporate-owned) motion. It’s not cheap, and it’s definitely not perfect, and I need to find something better and/or cheaper – but it’s not a catastrophe, either. That said, I could do without wincing or my nerves getting slightly jumbled every time someone lets their front door slam shut – but that’s what moving is for, with time and enough planning.

Leave me alone, somewhere quiet where I can write and compose and produce? Without a truckload of ambient and street noise, florescent lights, noisy neighbors and allergens? Watch me thrive.

Alexithymia, Autism, autistic burnout, Autvoid, Emotions, Long Reads, Politics

Nautilus – autism, psychic pain, and the Pulse massacre

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TW: mass murder, islamophobia, domestic abuse, authoritarian statism, national security state, extreme alexithymia/hyper-empathy, bogus autism “cures”

TW: bright, strobing colors, intense, dissonant music, images of jaws (in the video link)

Nautilusing – n.

(See Anna Meredith’s piece, “Nautilus”. https://www.youtube.com/watch?v=Vajhs2wBeCU)

1. A dark month of the soul.

2. A personal apocalypse, where everything shall be cleansed.

3. That thing you do that might be because you’re empathic, but you’re not quite sure.

You wake up one day, open a browser, and read the news. You see a headline, you open the story, because it’s about your people and death. Murder. Lots of murder. Of people just like you: trans, queer, black, brown. Family.

You’re devastated.

Imagine the worst physical pain you’ve ever experienced – a broken leg, an abscessed tooth, childbirth – then make it emotional.

Your nerves are at 400 percent, the sky is crimson and the ground vibrates in a way that clashes with the frequency of the air.

You fall into a gaping fissure. All is dark now. You’re alone.

It’s as if you’re in an alternate reality, where the shooter is a guard, and the guard is allegedly a muslim, and then, everything branches off. You’re sort of a mixed race punk rock muslim-ish somebody. You’re not out to your family about being queer or being trans or being sort of muslim (you’re a revert, if a very taqwacore one). (Back in non-alternate reality, this isn’t that far off the mark — you’re old enough to have pre-dated taqwacore, but you spent your teens and early 20s around muslims and western sufis.) But you manage, and you have friends, chosen family, a lover or three.

You hook up with the shooter at the club one night, without you knowing much about him. He’s guilty about having sex, a sexuality, a body. (Which is strange, because he’s always around the club, and he never goes to mosque. Does he even have a Qur’an? Who knows.) He leaves you, then beats his wife instead. He feels guilty about it, so he ups his devotional meds, and goes to mosque more often. (The fact that he never was much of a muslim, and if anything, the feds dropped him off of the watch list because of not fitting the profile they were going for, seems ill-relevant now. The “husband with a history of abuse who works around a shit-ton of weapons and has a security clearance” profile seems to go without consideration.) Then he’s in the news, for weeks.

None of this happened, it just feels like it could’ve happened – one minute, you’re on the floor, dancing – then: a flood of adrenaline, of dopamine, running as the sound of airplanes rang in your ears as people fell around you, and you managed to escape out the back.

Ka-thump, ka-thump, ka-thump, ka-thump.

The next day, it’s even worse, because the political machines kick in. “This is why we need more security, and more contractors, who will employ more people like the shooter.” People object to their pain and grief being used this way, and so much blood and murder and oh god, try to focus, oh god to, to, to, look, it’s not ok to do this in our name, ok?

It’s not like wanting to die, it’s like being in so much pain that your body wants to extinguish itself. You keep it together, and fight mightily against the urge to do anything rash to calm your nerves. It doesn’t work, which is to say: there was no problem, you’re not suicidal, this is just how you’re wired. You feel things. Which is to say: Everything. (You figure out months later that there’s a reason for this, and that it’s normal – for you – to feel everything at once, independent of rational thought. Why nobody bothered to mention this to you for decades – friends, parents, teachers, gurus – is a mystery.)

You also don’t necessarily want it to stop – the passion that gives birth to this is also what fuels your creative work, you presume. Either way, it’s not without its merits – you can feel everything, smell everything, touch everything. Sometimes, it’s as if you can hear people’s thoughts, but you don’t, you just have a keen sense of things, or at least, that’s what you tell yourself to not remember the time someone affirmed that you did read their thoughts, or that you appeared in their room one day even though you were miles away at the time, or felt the rather horny ghost in your apartment one night when the candles flickered, up the hill from the Castro.

A week passes. You’re out of the hole, but you’re still on fire. Everything is a huge, raw nerve. You talk with a friend, they love you, they try to understand, but it’s hard for them to make sense of what you’re talking about, or even if it’s real. (They’re Canadian.)

The news is total shit – it’s like it all never happened. Nobody talks about the FBI, or private security, or anything of much relevance. (Yesterday’s news.) Days pass, then weeks. You’re still on fire, but you learn to not take the political gesturing seriously.

Then, the murderer’s wife is arrested. This pisses you off – don’t they know she was abused?

The story vanishes, and you go on with your life. You learn to be even more circumspect about the news. Sunlight still blinds you, the smallest of noises make you jump, vacuum cleaners sound like they’re sweeping up sonic debris off a tarmac. The worst part is that it doesn’t seem to trace back to a particular trauma. Your mother died years ago, but your vigilance across a variety of topics provided an outlet for your grief, although there were a couple of potholes along the way – the bank messing with your account again (and again, and finally, getting it all resolved), the occasional person who tried to take advantage of you, someone who sneered at you in a wait line (you think – you couldn’t make it out), so you said “What the hell is with boomers” to the clerk, and they said “Customers in this town”, so you know that at least maybe you read the situation somewhat right this time.

The sound of birds helps, even if the smell of everything doesn’t. The laundromat across the four lane highway and half a block down smells like a detergent factory, someone’s fireplace smells like their house is burning down.

Everything is an epic struggle, a reckoning. Spilled grain in the supermarket is a crisis. There are no minor disagreements. You manage, and persevere.

Nevertheless, you recover, and pray it doesn’t happen all over again. Which it will, but you know now. (You don’t actually know, you’ve just experienced a variation on the same thing that happens periodically. You hope it will pass with time. It doesn’t.)

It took you 55 years, 6 months, and however many days for it all to drop in your lap one day, while you were looking for information on being highly sensitive. (Highly Sensitive seems more like Highly Euphemistic to you, but you roll with it.) Figuring out that you’re autistic is both a relief, and a sort of unwanted cleansing fire of its own, especially when you run across people online who think that neurodiversity and autistic self-determination is the same as fascism for some obvious agenda/reason that seems to be about ignoring the spectrum and going for that old timey autism, the kind that can be reduced to nothing but brain chemistry, or psychology, or demons, or vaccines, or vitamins, and fixed with a pill or an exorcism (or with selective abortion), which somehow does not qualify as being eugenicist or fascist or anything other than good and just and pure and by the way, did you know that all self-diagnosing parents of autistic children have Munchausen’s? If only you had bought my book and listened to my coterie of ill-wishers and taken whatever supplements I happen to be promoting this year, maybe you would have known.

But you staple your head back together, and a couple of days later, it’s an amusing anecdote. (You do remember the neurologist’s name, with a strong “AVOID AT ALL COSTS” note next to the link.)

You read and read and read and drink water and drink water and eat and exercise and read and read and rest.

It all starts to make sense. “Oh, ok.”

The songs dance in and out of your head, several of them a day, but you’re learning to listen. Soft means “I’m good”, loud means “OK, this is too much”. Sometimes the songs are more like metaphors for what you’re going through, sometimes they’re just a song.

You almost fall into a ditch again. You throw a ladder across the sink hole, and smoothly, if somewhat awkwardly, climb across.

Then? You watch the news.

You laugh at the devil, even if he is in the white house now. (Which is to say: again.) Just like you did when you were eight, and somehow understood multiple theological interpretations of what the supposedly infinite manifestation of evil was supposed to look like, and told your mom, as if it was a standard grade school sort of passing thought.

You pace, talk to yourself and flap your hands. It feels like flying, sometimes. Soothing.

You sleep with earplugs and with a night mask, even though there’s almost no traffic at night. You think about getting a white noise machine, then remember that even that is possibly too much. You need a room that is pitch black and still, an eight hour mausoleum of sorts, but the rents keep holding you in place.

You wear sunglasses on cloudy days. The auditory slurry of sounds that even three stories and double-paned glass can’t keep out, seems more manageable, sometimes.

At least you know your emotions and your thoughts are in separate rooms much of the time.

Ain’t gonna let no gunman, turn me around. Turn me around. Turn me around.

Two ravens land on the balcony. They remind you of your parents, so you say hi. They fly away.

Autism, Liberation, Passing/Masking, self-care

Introduction, Part Two

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I keep reminding myself that I embraced my being autistic only three months ago. While I’m doing fairly OK, I’m still going through a lot.

I used to mask a lot, and still do, although I’m working on it. Much of the masking I’ve done is/was entwined with coping and self-care strategies. I have a standing set of tools in this regard (most of which were beneficial, but not all of them were necessarily palliative as much as improvised). For example, I’d have (and still have) very strong alexithymic and hyper-empathic responses to something as seemingly innocuous as an emotionally challenging article online, or a friend of a friend who I barely knew passing. 9/11 was pure hell. In order to cope with feeling lucid, but also completely overwhelmed, I’d start improvising self-help strategies that I’d learned over the years from spiritual, human potential and self-work techniques I’ve picked up over the years, so that things wouldn’t possibly lead to anxiety, depression or if things are really tough, disassociation as a result. I definitely catastrophize things, though, and have coping/counter-inner-monologue approaches for that as well.

That all said, I mostly seem ok mental health-wise, relatively speaking. I’ve become really good over the years at flipping “fuck everything” around to “No, things are going to be ok, and even if they’re not, I’m not going to start thinking like that”. I gradually figured out that “I shouldn’t be living with 12 other people in a collective house, or doing street activism and all the stress and sensory overload that comes with it” was a wise call, even if it took having several shutdowns and meltdowns to finally get it. (“I’m just passionate. It’s not OK that I’m like this at times, but who even knows why. Maybe I’m just not cut out for all this.”) My coping mechanisms have coping mechanisms, my techniques have composites. I’m positive that years of spiritual work, human potential work, personal self-help work and therapy have all played a positive role in this.

The issue I’m having now is that the coping strategies I developed were based on a generalized concern on my and other people’s part regarding my emotional well-being, not on my or our informed knowledge around my being autistic. Many of those strategies were in response to catastrophizing, over-analyzing why something went wrong (including things from 25-30 years ago or more), or all my nerves being on fire from having an alexithymic/highly sensitive/hyper-empathic response, but it was just “that strange thing I do sometimes. Maybe it’s intuition or empathy. No idea” to me. Everybody else was either like “I’m concerned about you” or “knock it off”. So I’d do my best to try. My hope was that I’d develop better coping strategies to “fit in”, even if fitting in was more like “fitting into NT or non-autistic neurodiverse subcultures that I’m a part of”. (Yes, there are NT anarcho punks, and yes, they can be as much of a pain in the ass as NTs in general.) Eventually, I realized that my attempts weren’t working, and I moved on.

Now though, it’s like “I’m autistic! I know what’s wrong with me – nothing!” Which is great, but it also means that my coping and self-help strategies (which I had developed over decades), which were rooted in my hopes of fitting into NT society, in one way or another – are destabilized. They still work, they just “work as well as can be expected, given who I am.” It’s not just intellectual, it’s an actual shift in the way I perceive the “problem”. It’s like I’m recovering from a very gentle (and sometimes, not so gentle) form of ABAing myself, my best attempts to be good to myself along the way notwithstanding. Stimming helps, letting myself be autistic without condition or compromise helps.

I’m also struggling around what to do in terms of trying to fit into allistic society (or not). Even before I started this process, I was not looking forward to forcing myself back into the corporate software industry pressure cooker again for the bazillionth time, academia seems like a dead end, and just…wandering would be really nice, but has its risks and limitations. Where I really want to be (and already am) is in the arts, but they’re are in crisis, in terms of their economic viability as a paid, professional career.

So I’m in this in-between place where I know the things I love to do, and have for many years (thank fucking god that I didn’t get conned into giving up on my interests), but the ways to make a go of them were a struggle even before I realized that I’m autistic. Now it just seems like – *deep breath* – a lot of professional circles in the arts weren’t designed for people like me, either, even though a lot of the reason I started pursuing those things is because I’m gifted and autistic. Being autistic is intrinsic to the ways I approach making art (and technology, for that matter), and the work itself. Knowing that the tech industry has become so overrun by NT (or in some cases, autistic) dudebros who seem to think that the industry is a giant male fraternity is hard, but it’s also clear to me that I’ll never fit in with a lot of that. Seeing the same sorts of problems in the arts, where I’m freely expressing myself as an autistic person, creatively, when its the sort of life-long passion that I’d gladly do, regardless of if I’m getting paid or not, if it wasn’t only for frequent expectations to conform to unwritten rules and expectations there as well? That’s especially hard.

Even when the arts, academia or tech are potentially more accommodating to autistics (not unlike how artists, academics and sometimes, developers and designers in general are given more slack sometimes because of being “eccentric”, especially if they’re white, cis and male), the social and professional rules and practices in the arts are still largely designed and controlled by, and for, allistic society. I’ve run into this in one way or another all my life, and it seems mostly unavoidable, unless there’s a fair amount of disclosure and accommodation. Which frankly, makes me sad and angry, especially since (as I now know) “faking it until I make it” as a way to try to fit in, not only doesn’t work, it’s actually self-destructive if you’re autistic, because it’s based on fitting into allistic rules and norms.

I think (as do other autistics) that we need to create our own spaces, otherwise, these sorts of problems will keep coming up for us, and for myself. So, I’m working on making that a reality, but it’s still like…”Wait, I’m a self-actualizing version of someone whose kid got diagnosed with autism, so then the shrinks do a family evaluation, and the parent got ‘hey, you’re autistic as well’ dropped into their lap”. Except I’m both the parent and the child, so to speak. All of which came to a head three months ago. There’s only so much that “hyperfocusing to the rescue, let’s learn everything about autism!” can “fix”, in terms of my coming to terms with all this. Please note that this isn’t a form of internalized self-hatred, though! I love my autistic self. I mean fix in the sense of “ok, how do I change my life, now that I know I’m autistic.”

So, I’ve been taking things slow. If it gets too intense, I slow down, and above all, I’m working hard to keep being good to myself, while I’m also plowing through a large stack of books and films. I’m finding self-advocacy resources, including ones focused on women and people of color. I’m starting to come up with an emotional framework to compliment an intellectual one, and as Mary Catherine Bateson says, “compose my life” once again.

Autism, Music, Poetry, Writing

Introduction, Part One

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Hey. I’m a blogger and I’m autistic. I self-dxed three months ago. (Fuck off if you don’t like it.) This is my personal blog around my coming out process as autistic, and what I’m discovering along the way.

Some things about me:

Writer, musician, performer, poet.

Trans, intersexed, woman-identified, demisexual, pansexual, queer, mixed race. (yay, comma salad!)

Anarchist, post-marxist, anti-imperialist, genius, billionaire, playgirl, philanthropist. (OK, I’m making some of that up. 😛 Lucy Parsons is my imaginary dream lover, though.)

I used to work in the computer industry as a tech writer, and I have the scars to prove it. Now, I’m semi-retired (I’m in my 50s), have worked in the arts and publishing full time since 2005, and have an MFA in writing. I’ve read and performed at spots throughout the country, have work published, have albums out, and so on. That’s not the focus of the blog (go here, here, or here for that), but it’s an integral part of who I am.

I’m also writing from the U.S. a year and a half into the Trump administration, so I’m watching my barely established rights as a trans woman getting taken away from us by some “legal coup” Handmaid’s Tale shitheads. El Hefe seems to thinks its hilarious to mock people with disabilities, specifically for lacking of normative physical traits. I mean, he got “elected” on this as a platform. Always festive, always a joy. I don’t feel personally attacked by all this, at all. Sarcasm! Take that, shrinks.

So, why autism? What gives you the right? Why self-dx? “Vere are your papers. Ve need your papers.” Give me a minute here, imaginary interlocutor, and I’ll explain.

I had a hunch that I was on the spectrum for a long time. I was up on the stories that were going around about autism being an “epidemic”, the profile pieces on aspies in the software industry, and sometimes, the arts as well. The software industry aspie stories in particular seemed sort of…male to me, but it all rang a bell, too. (I also had written off my childhood experiences that map to autism to “Well, I’m weird. Thankfully, I escaped mostly intact”. The parts that map to autism to this day were attributed to “Well, I’m weird and I’m still trying to escape, to be honest.”)

When coverage about autistic women started becoming more common, that was when I really started to wonder. I also had a sequence of very alexithymic and sensory overloaded experiences that got my attention. I started reading about highly sensitive people, which then led me to more in-depth reading about autism, and starting to watch videos about autism on YouTube. When I found the work of people such as Rudy Simone, Cynthia Kim and Steve Silberman (as well as the film Autism in Love), completed online tests, read the diagnostic criteria for autism (DSM IV and V), as well as lists of autistic traits that focused on women, I realized that this was where I fit.

It still blows me away that I made it to my mid-50s without putting two and two together, but there’s reasons for that. Nobody who would otherwise have been read as “high functioning” was getting diagnosed until the 1990s, women are still undiagnosed or misdiagnosed in high numbers, and there’s hardly any information for autistic POCs at all, save for some possible indicators that autistic POCs are being misdiagnosed as schizophrenic or bipolar. It’s also possible that I was diagnosed and not told about it – I definitely was evaluated as being a possible “feminine boy” in grade school (because trans girl, as I later figured out – this was in the early 1970s), and much of that process could map to a pre-diagnostic process for autism as well. For example, I did the pattern-matching test, and the “map faces to emotions” ones as well.

There’s a lot about my childhood that fits the diagnostic narrative. I started reading one day, when I was three. By kindergarten or first grade, I was reading at sixth grade level, because nothing beyond that was available in the library. My parents’ books mostly bored the crap out of me, save for the encyclopedia and dictionary, which I read all the time. I toe walked, until my mom hissed at me “do you want people to think you’re gay”. I stimmed, but was getting watched like a hawk, so (my guess) it went into finger tapping, toe tapping, leg shaking and pacing instead of those stims and hand flapping. I did love to spin, though. I’d get bored with a group sport, so I’d make up a new game on the spot, and start playing to the new rules, somewhere between second and third base. (Note to self: this upsets male children.) My emotions would flip on a switch. Kids would tease me, I’d cry and yell, then run off to hide in the closet. I had no idea how gender worked, on a social level. I did feel social affinity with other girls, but teachers would shut that down. (At one point, I was lab partners with another girl, and the teacher separated us, to both our objections.) I’d chase off a boy who was interested in a girl I liked, and barely knew. (“Can’t they see how I feel?”) The grade school bully used to hit me in the arm regularly, so one day I’d had enough, so I stood up and clocked him. I’d find biographies of Mao and Einstein tucked away in a corner of the school library stacks, and not understand why kids would try to drag them away from me. (Especially the Mao biography. Nixon was president.) I played alone. I made small walls out of pebbles. I loved spinning things. I’d hide in the drapes, at a wedding. My dad would try to teach me basic electronics (and was probably evaluating my intellectual response along the way – he wasn’t very hands-on with this sort of thing, typically), and it took me 45 minutes to figure out how to connect the switch to turn on the light, because I focused on the cardboard that he used as a makeshift breadboard and the components instead. (Probably as a result, I had an interest in cardboard for a while – “There’s entire stories on the back! The address points somewhere, and there’s people at those addresses. Who are they?” My parents talked me out of that as well.) Nobody was sure if I was very smart, intellectually challenged or both. I was flunking out of math. I tested several grade levels ahead – for math. My abacus was my best friend for a while.

This all was in the early to mid 1970s – there was no public discussion about autism, save for the occasional “how tragic” story. Asperger’s wasn’t part of the diagnostic criteria, and the assumption was that if weren’t completely mute and, at least in society’s eyes, had limited to effectively no executive function, you were just “eccentric” or “weird” or “savant-like” or in my case, “smart, or dumb, or who cares, let’s just say very, very weird.”

So, that’s a bit about my background and what led me to this point in my journey. Where I’m at, three months into my process, in the next post.