Shinylander: only the most high functioning shall survive

wtf, Temple Grandin. *anxiety intensifies*

I don’t buy this assimilationist, anti-worker, anti-poor nonsense. Full stop.

I’ve worked way too many jobs where i was miserable, my coworkers were miserable, the department heads were miserable — and those were the sort of “not just a job, a career” sorts of positions she’s talking about.

It’s not just her, unfortunately. Some corners of the Autistic community, especially among people who tout being high functioning (or being “cured”) as a panacea, have a ways to go in terms of:

– not playing high/low, aspie/autie games, especially “high-functioning” punching down towards “low-functioning”
– active inclusion and acceptance of POC
– active acceptance of people who self-dx
– acceptance of neurodiversity, neurodivergence and neuroqueerness in general

We’re a community, not a horse race. Asserting that we’re not dealing with the same core issues is bunk, even if they manifest to varying levels from person to person, and within a given person.

When people try to draw a hard distinction between auties and aspies, or the employed (and careered, no less) vs. the unemployed, what they are doing is attempting to reify passing, including passing as allistic and/or NT, as well as “I never would’ve guessed that you’re autistic” sorts of mind games. It may work for them to do that, and that’s fine, but insisting that everybody be like them is both cruel and divisive.

Counter-propoganda for your informational needs:

We Are All Part of One Spectrum

Functioning Labels, Again

Decoding the High Functioning Label

Queer/Trans Autisinal Intersect: an Autistic Neuroqueer Personifesto

The thing about the intersect of autism and queer/transness for me is that it’s all a blur, and has been since childhood, on a personal level. It’s *all* part of the same fabric of oppression, teasing it out in terms of what happened diagnostically is murky at best.

In childhood and through to my teens, I was weepy, angry, avoidant, aggressive, bookish, stimmy, social (but with the “wrong” gender), reclusive, and basically a queer happy mess, as long as people left me alone, which they most definitely did not. So then, i was a miserable queer mess, and they still didn’t leave me alone.

Both at school and in my sort-of-home, everything was an intervention, constantly, from the moment I showed up the first day of school to the moment I left the school system when i was 15. Autism, queerness, transness, problem behavior, asocial behavior, all the same tapestry of “stop doing that”.

That said, they did all sorts of soft and hard intervention-like things to me, back when ABA was just starting to get off the ground. “Stop being queer/trans” things. “We’re testing your ability to match faces to emotions” things. Rorschach things. EEG things. “The tests are to screen for your mother’s neurological condition, but only you get tested repeatedly” things. “Look me in the eye, no, *look* me in the eye” things. “Staggering from the EEG drugs” things. “Stop toe walking, people will think you’re gay” things. “Stop looking at shiny and stacked things” things.

I tried to self-advocate to get my school records, but my mom bullied me out of it.

It took me over 40 years to talk about this publicly, and the only reason I am now is because I lucked my way into support materials for autistic women, or as seems to still be an ok thing to say, autistic females. (Yes, females in that sort of way, ladies.)

So I hate to break it to folks, but clinical diagnosis or no clinical diagnosis, school records or no school records, you’re never going to get rid of me.

I am well the damn hell right here, I will remain here until we all are free, and you can’t stop me. To paraphrase Rodrigo De Souza, “My paperwork is in the blood”. (Cancelled? Boo.)

The Allistic Gaze

TW: allistic violence, conformity, ABA, murder

I don’t know if anybody has written about this in these exact terms, but it’s fairly unmistakable — it happens when you don’t adhere to allistic social norms, in terms of eye contact, speech or social interaction. It’s the “wtf is wrong with you” look.

The worst version of it is someone institutionalizing an autistic person, committing acts of violence (including ABA) against them, or murdering them outright.

The more common versions are looking at you sideways, verbally questioning, correcting, or patronizing you, or jaw-dropping silence followed by deflecting/changing the topic/making a “joke” out of things.

It’s a form of compliance insistence. It’s triggering. It leads to us being rejected from work positions (or fired from them), failed relationships (with allistics), or in some cases, arrested, assaulted or worse.

I wish I could just say “come on, try harder” and have that be enough, but I see the same thing happen from white people towards people of color, men towards women, and against disabled people in general.

As always, we need to create our own media, and act collectively in our own self-interest. It’s up to us, not them. It should be better, but as with so many movement-level shifts in society (let alone liberatory and transformational ones) it’s not going to come through mere awareness. It’s up to us to make it happen.

Autistic Burnout

“Too Nice”: Avoiding the Traps of Exploitation and Manipulation

Whew, this. I have been led astray and manipulated a *LOT* in my now-middle-aged life. It can lead to all sorts of problems, including autistic burnout, it seems.

A thing that I think needs teasing out a bit — where he says “We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards”? That isn’t necessarily negative; if anything, that list of things can be a positive part of an autistic person’s life (stimming, hyperfocus, roleplay), or a form of self-defense or release (hiding, exploding), depending. I think I’m finding myself through an *unmasked* acceptance of these things, not being thrown further afield. I’m not advocating for decking someone or disappearing to the point of forgetting to eat though, just so that’s clear. (What that can mean rhetorically, as a form of communication or being, is another question.)

Why Do So Many Autistic People Flap Our Hands?

The High Cost of Self-Censoring (or why stimming is a good thing)

The Angry Aspie Explains It All

I’m not saying this to negate what he’s talking about, which is about coping mechanisms (including masking), though. This is probably why he immediately continues the above quote with “we Mask — all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are — to make Non-Autistic people accept us, because we don’t find acceptance as ourselves. This is why we burn out.”

Having been through this sort of burnout multiple times in my life, I can confirm that it is not a picnic, at all, and whatever we can do to make space to unmask, to lessen the likelihood of not burning out, and for generalized self-care and self-love, is a good thing. (I recovered one time by sleeping for four days; I was barely able to talk, even with people I was close to. It was different than being just selectively mute, it was like “OK, all systems and communication protocols are glitching or failing.”)

That all said, I’m working on putting what he talks about to practice, because I’m getting close to it happening again, and wow, does it suck. Sheer mortal fear, do not want.

Autism, ABA and The Arts — Childhood Memories

A mind-bendingly difficult thing from my past that i’m coming to terms with:

I might have been screened for and possibly diagnosed with autism back in grade school, or some sort of gifted + autistic, although that was before “doubly exceptional aspie” was a thing (early 1970s).

I went through the Very-Concerned-Teacher-to-shrink-to-non-staff-specialist gauntlet for a while. I definitely was being assessed for cross-gender behavior; pattern matching games and a “mind in the eyes” test was part of that.

That’s mostly sorted for me now, or sorted enough that I’m slowly moving from being floored by it to acceptance and integration of what happened.

What’s still too raw to talk about in much detail: realizing that writing and music was the communication vector that might have kept me from getting aggressively ABA’d or institutionalized in some way or another, right at the moment when modern “child autism” was starting to be acted upon (as in, ABAing autistic children). So, it’s a toss-up as to what would’ve happened, had I not lucked into writing and music as “ok, well, you’re ‘creative and sensitive'” as a result. Things went from “You’re a problem. *sounds alarm*” to “You’re innately talented, so of course you’re that way”, quickly, come fifth grade (homeroom teacher) and seventh grade, partially. I never was labeled as “gifted” within the school system, but writing and later, music was how I found my way to forms of support that were actually supportive, rather than more aggressive interventions, both informally and formally.

It also was a way to express myself creatively in a classroom setting, rather than *stacks small stones away from the other kids* or *runs into the closet, overwhelmed*. In other words, I was “learning how to behave”, so the early negative reinforcement machinations of ABA-like things wound themselves down. This unfortunately did *nothing* to stop students themselves from aggressing against me, but it did change the classroom dynamics, including the times where I was flunking out, in a class where I had tested beyond grade level or otherwise was capable of doing the work. The right-wing “take” on this is to attribute this to laziness, but…well, no, actually.

Same goes for my family — if my parents were presented with a diagnosis of autism, or as was starting to get phased out, schizophrenia as a clinical “who even knows” place-holder for autism (this all happened in the early 1970s), it’s very possible that my parents took one look at the school system and attempted to intervene on their own instead, because that was my family, back then. (This was before my father’s drinking, and the subsequent bullying and aggression kicked in.)

So when my active interest in spinning and stacking games shifted to reading the dictionary and their encyclopedia set, then once encouraged, to writing and music, it was tolerated, and accepted, both in my family and at school. “Narrowly escaping a worse fate” is my best guess and operative assumption, for now.

#actuallyautistic: origins and the AQ test

(Caveat: diagnostic tests are an indicator, but not the “final word”, including for self-dx. (Is there a final word? What are words?) I’m working on a list of autism-themed books and blogs, which provide a lot more context.)

I found these posts the other day, thought I’d share.

Why actually autistic tag

https://www.tumblr.com/thelamedame/26098953978/the-actuallyautistic-tag-since-there-seems-to-be

(Possibly) controversial opinion:

I think taking the AQ test more than once might be necessary in some cases.

The first time I took it, I “passed”, but after I thought about it for a couple of days, I realized that I might’ve taken the test incorrectly.

The test is designed 1-4, not 1-10 (and scored 1-2), from definitely agree to definitely disagree. Which for a “spectrum” test, is an…interesting choice for testing format, but whichever.

I kept thinking “Why does this feel like it should be numbered 1-10? There’s things that feel like I should’ve answered 7/10, in terms of per-question autistic assessment, that were…somewhere else. It’s as if I was denying what the autistic inference is (“Do you like trains?”) for some of the questions, or perhaps the mapping of the options itself threw me.” (This is a common thing for me with multiple choice questions. “Well…maybe? It really depends on this, and this, and this, and this, and. Also, “this question is offensive, so *answers question sarcastically*, or feels an impulse to. Or the “boxes” in the test format contradict each other, or don’t represent an accurate answer — what does “slightly” mean? Slightly relative to what?”) I’m not sure if this is denial, or some other thing, but something’s off.”

So I took it again, and my score went up. o.O

Also, if you’re not aware of the issues surrounding how autistic women have been misdiagnosed or ignored, including on the basis of now-outmoded criteria, it’s good to know about:

Understanding the Gender Gap: Autistic Women and Girls

This includes questions in the AQ, which is why I’m mentioning it. The classic example is “trainspotting and math” sorts of questions/assertions.

In case anybody is curious, my (self-administered) AQ scores after repeated testing are, in order by date: 33, 41, 42, 48. The last one was done after having two meltdowns in a week, while recovering from one burnout cycle, and working to not wind up in another one. My guess is that my mask fell completely off. “The Mask coming off is exactly what happens during the Autistic Burnout period.

Also, I’m going through a process of letting go of being closeted (and the masking and denial that comes with that). So it’s possible — and most probably, likely — that I was in partial denial the first time I took the test. I think it’s possible that the first score, the second two, and the last one are clustering relative to my levels of self-acceptance as autistic. That said, it’s just one test. It’s a process.

“Functioning” labels don’t work

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

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

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.

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

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.

Nautilus – autism, psychic pain, and the Pulse massacre

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.

A personal blog about autism, neuroqueerness and transformational liberation