Category Archives: Autvoid

Autistic self-affirmation superstars vs. busy body identity policing bullies

TW: venting, community dynamics/conflicts, bullying, identity policing, gaslighting, curebies, counter-aggression, racism, ableism, police shootings, violent assault and murder of autistic people, “bad autie” stereotype

Fair warning: this is a much harsher tone than what I usually post here.

Every community has their self-appointed identity police, that constantly ride people for not being <thing> enough. I’ve been carefully considering the situation around this, at times in detriment to my own health and well-being. Given that I appear to be far from alone in this unfortunate outcome, here’s my carefully considered summation:

Fuck off, you abusive curebie dungnuggets. I don’t care what you think.

I know that there’s people who think the opposite: that there should be far more gatekeeping of who is and isn’t Autistic, not less, but frankly, again: I don’t care. You don’t get to control the rest of us like that, it’s cruel, if not sadistic. I refuse to even entertain this sort of assimilationist, supremacist, gaslighting as fuck garbage thoughts past that. If every once in a blue moon, someone sincerely questions if they’re autistic, then finds out that they’re something else, that’s *COMPLETELY FINE AND HAPPENS IN ALL COMMUNITIES*. A few very annoying VOCAL members of our community act as if there’s never been a single straight person who was “lesbian in college”, and *SOMEHOW*, the LGBTQIA+ community is doing just fine, despite this. (Don’t assume that coming out as LGBTQIA+ is less life-changing and critical than “coming out” as Autistic, either. They’re both significant life decisions, with their own benefits and costs.) Autistic-questioning people aren’t flooding the gates, that’s some terf-like nonsense, settle the hell down, please.

I’ve seen this happen in the LGBTQIA+ community as well. “Who gets to belong? Who is really trans? Do you have to have surgery to *really* be trans? Are enbies valid? Is “autism is a gender” valid?” Sometimes, it can feel as if Tumblr has taken over the whole damn planet.

That said, I got this sort of thing cleared up for myself years ago, when I read this article. (Fair warning: it’s long. 6,000 words long.) We may or may not be past the point of having to guardedly form ourselves as a (figurative) nation, but I’m very certain that policing who gets to be Autistic is toxic, and benefits nobody, including the people insisting on trying to do so. (If this is you: think of all the times you could’ve been stimming or happily enjoying interests instead of obsessing over who does or doesn’t belong.) I much prefer Amy Sequenzia’s approach, which is also the position that ASAN takes, and that many members of our community (and researchers) share as well. *This* is how we learn how to share and grow together as a community – and in turn, increase the probability of being able to shift public opinion of us in our favor, by fostering a mutually supportive and beneficial community for *all* of us. What policing who is or isn’t autistic does is reinforce the idea that being Autistic is something undesirable, because <sarcasm>after all, we’re made up of sufferers and Potentially Dangerous Visual Clickbait, erm, Persons™</sarcasm>,  not a vibrant community of individuals, each with our own unique life experiences.

“But really, what if someone’s just faking because they think autism is a fad?” Are you kidding me? Autism has never been a fad. (I swear, if you compare this to white people appropriating Black or brown experiences, my mixed-race ass is personally going to stuff a smelly tube sock in your “stfu, racist” mouth.) Every group of marginalized and oppressed people has their “what if we’re all like you, a little?” moment in the media spotlight, and that moment has mostly passed for us (and was barely a moment – a mostly shitty moment – to begin with). I’m a *lot* more concerned over the tendency to frame us all as dangerous or even murderous (cliff’s notes version: we’re not only not dangerous, we’re far more likely to be violently assaulted or murdered than the other way around). This is patently obvious to anybody who uses their preferred search engine to find out.

There is a standing bias against people self-dxing. This shows up in subtle ways as well as obnxiously obvious ones (as noted above). “Really, being clinically diagnosed was the best thing that ever happened to me. It’s the way forward.” No, *informed self-awareness and acceptance* is the way forward, how that happens depends on someone’s life situation. Not everybody gets “caught” (word choice deliberate) by the school system, not everybody can afford diagnosis, not everybody sees a reason to “confirm” what they’ve come to on their own, and who knows how many of us are in some sort of liminally autistic void between the societal goalposts. It shouldn’t be anybody’s job to decide that someone isn’t Autistic, “officially” or not. That ultimately is a personal choice, even if there are differences of opinion, clinically or on a community level. Go live your own life, we already have way too many people trying to control (or end) ours. Priorities.

What if we talked about being Autistic as a self-affirmation process, rather than diagnosis? By which I mean, whatever community-based tools and *actually supportive* community processes we have in place to figure out if you’re autistic, that’s fine, as is encouraging autistic-questioning people to take their time and do their research, and from that, choose whatever diagnostic pathway is best for them, including not getting clinically diagnosed (or even, depending on the person’s situation, even letting other people know that they’re Autistic, on the basis of *their* needs, not someone else’s). (BTW, this is no different than the process for people who come out as trans. Again: life-altering choice.)

Self-acceptance is where the actual healing happens, regardless of age or background. Whether that’s by doing a well-researched self-diagnosis, via a clinician, or both — no matter if you’re six, or 16, or 36, or 60, or 100, your life is yours, you Know Why, that’s enough. Welcome to our community.

life in the autvoid

TW: institutionalization, false imprisonment, pathologizing, school system, ableism, oppression olympics, “shiny” aspies

autvoid, n. the place in society where an autistic person, especially someone who has been marginalized or oppressed out of support and resources, lives. think “unmasking” (or not being able to mask) while living out in the world, but without a tangible diagnosis (of whichever sort), or the words to describe what you’re going through. can also refer to people who were assessed but not diagnosed, diagnosed but not told the results, or otherwise lacking in agency as an autistic person.

i’ve lived in the autvoid a lot. a vaguely-shaped form, buying groceries and getting “inexplicably” overwhelmed. melting down. stopped by a cop, and not able to say a single word. assessed in childhood, not told the results. a lot of experiences, not much in the way of answers. that was me for a long time.

a lot of us live there. 50-60%, by one account.

some of us live out in NT society, and suffer as a result.

many of us are undiagnosed, or misdiagnosed.

some of us are assessed and/or diagnosed, but were locked out of the details. or were assessed, told, and nothing else happened. “You’re autistic, I think, or whatever. Get back to class.”

some of us live at home, sometimes, or all the time. including in adulthood.

some of us are institutionalized, or in prison.

the autvoid is a place where the very large subaltern that makes up *most* of our community lives. this doesn’t discount or erase the lived experiences of those of us who are diagnosed! people seem to struggle with this, and to be honest, i’m not sure why. it seems disingenous. perhaps they’re used to getting what they want, or are insecure in themselves? (see this post from silent wave blog for a critique of this “anti-self-dx” nonsense.) using one experience to try to cancel out another smells to me of oppression olympics. as i keep saying, and will keep on saying: “we are all part of one spectrum“.

in my view, if you’re autistic, you’re autistic. if you don’t know, you’re still autistic. if you’re being oppressed as a result, you’re *definitely* autistic. “Autistic” with a capital “A”, even. you need — and deserve — support! we just haven’t found each other yet, due to a lack of accessible, useful resources.

here’s to being found. ✊🏽

“i’ll do anything once”

when i was younger, there was this habit i got into in my 20s, which gradually waned over time. it’s a variation on “learning social situations” — my rationale was that if i make a mistake, i’ll make it once, then learn from the situation.

the only problem with this thinking is that in a lot of situations, i’m an associative learner, not a crystalized one, and some of the situations i was in cascaded over months or years. there are a potentially infinite number of situations i can find myself in by definition, and that for a variety of reasons, may or may not easy to extricate myself out of. this is further compounded by my being both too trusting and too nice. as a result, i’d get used, get fed up, get out of the bad situation, find another one, then do it all over again. not so much because of thinking “maybe it’ll be different this time” as “hey, look at this entirely different situation, i wonder what that’s about”. eventually, i started kicking myself over it, then i realized that wasn’t working, either – so i just pulled back from socializing, first in terms of intimate relationships, then friendship.

in my late 40s, the way i started to deal with this was to simply avoid people. which is fine and all, but i do actually like interacting with people, i just don’t like having my senses overwhelmed by speaking (or being spoken to), having my visual and auditory thinking being disrupted by verbal rhetoric, and being so overloaded as a result that i couldn’t catch my over-trusting, oversensitive, hyperempathic nature being messed with.

now that i’ve learned better well enough to just not get myself into shitty situations to begin with (of whichever nature), i think there’s a solution for this sort of pattern that goes deeper than the also-important “learn social situations” one.

for me, i need two things in place for this to get better:

– i need to accept and embrace being non-speaking (at times);
– i need to trust my visual, auditory and associative learning processes.

one of the ways i reflexively learn things is by what my senses tell me, and by visual memory. example: if i read something visually descriptive, my mind turns it into a visual representation of the text. (i can also speak text if its written down, even if i’m otherwise non-speaking, sometimes.) where my senses come into play is that my mind will use my sense of recall and visual learning to draw a symbolic map of a potential danger, or need. if i trust both of those things, then i can learn how to avoid situations based on non-verbal communication and thought. otherwise, i’ll start convincing myself that the “word things” (words that i’m thinking or saying, but that don’t match what I’m trying to communicate) i’m saying to myself in order to translate and verbally communicate in the situation are actually real. it’s a form of masking, that thankfully i learned well enough to avoid becoming too invested in, but it’s still a risk for me. this mixed with being too trusting and too nice is a recipe for disaster.

these two things play off of each other. it’s a LOT easier to “parse” my visual thought processes (and my auditory ones) if i don’t have to translate into text. this is where AAC can come in very handy; my mind likes to shut itself my speaking ability temporarily if it can’t keep up with the translation into words and speech. so then, i can’t speak, possibly for a sentence, possibly for hours. if i really get overwhelmed, my speech will stop working altogether for days at a time (or become much more limited). the same thing goes for grammar – i’ve had occasions where everything seemed to be going fine with my creative writing process, then i just stopped altogether and couldn’t do so for years. it’s a type of autistic burnout when things get to that point.

until i finally let go of masking my frequent inability to speak, and embraced myself as a non-speaking (at times) person, I wasn’t able to accept and connect with tools such as AAC. my hope is that using AAC in a fluid way that maps to my neurology means that I can communicate without being overwhelmed – in other words, i’ll use a combination of AAC and speaking to whatever degree is possible in the situation. if something is too difficult to speak or type in the moment, i can write it in advance. if neither of those are possible, i can take my time. if all of that not permitted, that is when I plan to raise holy hell about it, in the finest crip liberation, “no spoons, only knives” direct action sense. hell hath no fury like an infinitely minded woman who has been indefinitely fucked with. onward.

Erasure

Trigger warning: long read, anger, suicidality, ABA, trauma, functioning labels

This pattern: adaptive skill -> “intelligent” -> high-functioning. wtf.

Further, this pattern: need for support -> “lack” -> low-functioning. Again: wtf.

First off: it’s ableist. That’s a given. Functioning labels, intelligence and correlating adaptability to both (and its respective presumed opposites) are *all* flawed concepts.

That said, I’d like to talk about how this makes no sense. Not just because functioning labels are ableist, but how the entire pattern doesn’t make any sense.

A *lot* of being viewed as high-functioning is about masking, and possibly having some particular set of skills or talents that are viewed as “humanizing” (and under capitalism, valuable). I can do both (even if it’s sending me careening towards a meltdown while I do it), up to a point — then things fall apart. So, rhetorically speaking: what does that make me? It is virtually impossible to memorize every possible social interaction; even if some hypothetical person did so, new ones emerge regularly, if not constantly. No amount of scanning a database of situations and scripted responses, and affective empathy (if needed) can fix that. It’s as if those of us who get viewed as “high functioning” (or in some mixed state of high and low functioning, if someone is bothering to pay attention) are the opposite of the “puzzle piece” metaphor; instead of being a neurotypical person trapped inside an autistic shell, we’re autistic people trapped in a learned/assimilated neurotypical one, to varying degrees.

A huge part of this is due to viewing typed or spoken communication as a key marker of ability and intelligence, if not proof of intelligence itself. When I’m non-speaking, does my ability shift? When I melt down? When I’m non-compliant? Is an IQ test an indicator of anything at all? (If you answer is “yes”, consider: even the official WAIS site encourages people to study in advance for testing. So then, what is being tested? If your answer is speed of response as an indicator of intelligence, perhaps consider that this concept is also flawed and ableist.) Also, the lived experience of having a skill or talent in society is predicated on a complex set of social skills, and it’s rare for accommodations to be made based entirely on that skill or talent, especially if you’re marginalized or oppressed. <sarcasm> So much for talent being mapped to functionality with the inference of social acceptance and inclusion! </sarcasm>

That said, there’s also the problem of viewing “low functioning” as lack rather than difference, of equating challenges and the need for support through the lens of intelligence, if not correlating lack of speech to lack of intelligence to lack of capability. Everything from the rather condescending ways people approach facilitated communication on an individual basis, without allowing for context, training or the person’s ability to type independently, to the ways that exhibiting high-functioning traits is equated with being high functioning at all times (or for that matter, with “not really being autistic”) are rooted in biased assumptions about functionality, both “high” and “low”.

Here’s a deeper problem that I see, especially for autistic youth: either through adversives or positive reinforcement, ABA presumes making an allistic child out of an autistic one. This alone is abuse, but on top of it, there’s a presumption that you’ll ditch that “fake child” (the autistic one) and become the real one (the made-up allistic one) that was buried under a pile of broken puzzle pieces. It’s very abuser-as-false-savior-like, as a “therapeutic” approach.

The problem with this is that it’s a lie. The real child is the autistic one, (TW: ABA, coercion, violence) the rest is forced and/or bribed compliance. Further, if you remember who you actually are in adolescence and adulthood, this creates a tension between your real self and the fake allistic one — which is masking at its most harmful. It can lead to forgetting who you are altogether, so you know that your mask isn’t real, but you can’t get back to who you are before you masked, either. This was coming up a lot on the #takethemaskoff campaign: autistic people kept saying “I’ve been masking for so long, I don’t even know who am anymore.” I know what it feels like to start to forget. It’s like someone is murdering you, and you get to watch. There’s masking out of necessity and survival, as well as masking to get your wants and needs met — then there’s masking that can be overcome, safely, or that could if someone hadn’t been subjected to years of forced compliance. (These categories aren’t necessarily mutually exclusive, either.) In my opinion this is part of why there’s a link between suicidality and masking.

There’s a variety of ways that ABA and directly ABA-like things are foisted upon autistics. I know that ABA as a practice has been around since the mid-1960s, and the first assessment questionnaires have been around since then as well; my parents used behavioralist techniques that map to ABA more than closely enough to parallel ABA itself. Why that is, I don’t know (although I have my guesses), all I know is that it was traumatizing as fuck, and once the “compliance protocol” was established, it *never* went way. Not just in childhood, period. I have had to unlearn “people tell you what to do, you do it”. It’s a life skills anti-pattern.

What helped me find modes of expression and learning in the school system was *NOT* being assessed, and the more negative aspects of what my parents did at home. What did were teachers that encouraged students to find their own ways of learning and communicating, instead of trying to force us into a box. I thrived under these teachers, and didn’t otherwise. (It’s probably important to point out here that I was frequently what now gets labeled as combative, non-compliant or passive otherwise.) By high school, I learned how to coast, until I was forced out for other reasons. This wasn’t just educational, it was inter-personal as well. I was literally rescued from some personal hell, assessment included, twice — only to fall back into hell until I left the school system altogether, and I have no intentions of forgetting that.

Perhaps what is flawed here is both the entire concept of intelligence in the first place, as a presumed indicator of cognition as well as ability, if not sentience — as well as the idea of “functioning” being a fixed state, that can only be deviated from by regression or “cure”. Both of these assumptions are dangerously ableist, if not eugenicist in their world-views. This is the sort of never-ending array of conundrums that Melanie Yergeau talks about — the frequent assumption is that someone is either too autistic or not autistic enough to self-advocate. This basically is a toxic worldview, and deserves to be challenged as a pernicious threat to our well-being and survival. Self-advocacy is communication, and non-compliance is a social skill, regardless of how we have been labeled, how we communicate and express ourselves, and what levels of support we need.

Community Organizing Beyond “Officially Diagnosed”

There needs to be a “misdiagnosed, undiagnosed and suppressed diagnosis” caucus of sorts. This is important at face value, but also because it dovetails into:

– Under-representation of women and trans people

– Under-representation of people of color

– Under-representation of working class and working poor people (because of cost + misdiagnosis)

– Under-representation (and contested representation) of adult autistics in general

This also impacts on the quality of (beneficial) research, as well as the tendency for research to focus on “cures” rather than social accommodation and support across the spectrum.

The lack of beneficial research + scare tactics = the dominant paradigm around autism, especially in the U.S. and parts of Europe (but not the UK, it seems). (Don’t @ me about Brexit, I know.)

This also requires having an org(s) or movement(s) to have a caucus in to begin with, though. There’s community-based orgs — https://www.aane.org/ comes to mind — but they’re few in number.

ASAN is focused on policy and lobbying, AWNBN is focused on support and resources. All of which are incredibly important, but there needs to be more.

As per usual, the “autism advocacy” groups are actively hostile to self-advocates in a lot of cases. There’s people working to rectify that – but they’re few (if not singular) in number.

Meanwhile, “zomg the vaccines!!!” seems to have gotten supplanted with “zomg, school shooters!!!!” and “zomg, neurodiversity is a cult!!!” <- actual things that actual people say, loudly and repeatedly

Our neurodivergent selves are right here. Feel free to talk with us anytime. Meanwhile, there’s a lot of work to do, and this should be part of it, I think. 💪🏽 ✊🏽 ❤️ Onward.

That Time I Got Jumped

TW: extreme violence, attempted murder, transphobia

I got jumped in high school. I could have died.

Me, once I broke free of the stranglehold: “Why did you do that?”

Him: “Because you’re different.”

Me: “Different? What kind of different?”

His friend, who watched the whole thing and did nothing: “Come on, let’s go. No, let’s *go*.”

They ran off.

Going back through it, “you’re different” wasn’t just over being trans (and starting to wear more femme clothing to school, and growing my hair out, in order to start trying to come out), or being mixed (although i got attacked for that as well, all the time), but because I didn’t pick up on the “…what are you doing” socially layered cues that were a sort of “danger: cease autism” warning against defying the norms, as well.

I now strongly suspect that not reading the warning cues (someone asked me “what’s this about”, and i didn’t get the “concerned, but oh well” tone and expression they had, at all), was what pushed things over the edge into my being attacked. Teenagers talk. What about? They didn’t tell me — I’m sure they assumed I’d figure it out on my own, or if not, that it was on me.

If I had known how to read the body language and facial expression of the person who tried to warn me, I’d have been like “oh shit, this is high school, and I’m…something they don’t like, obviously, they keep assaulting me, got it” and either closeted myself until I could get free, or figured out a means of resistance with my high school “beyond the outcasts” social cluster. ✊🏽 (Note: if I grew up when teaching “life skills” was more common, I doubt it would’ve helped much. My assumption is that doesn’t work for the same reasons that sex ed in the U.S. frequently doesn’t work, either. Labeling a curriculum a particular way doesn’t mean that it’s addressing the needs that the label infers.)

As it was, I was perplexed. I thought to myself, “Are you unhappy about the way i’m presenting? You don’t seem angry, so…well hunh, no idea. I guess you were just curious. Oh well.”

Shortly after that, I got jumped. I took the proficiency exam, split that gd place and never looked back. 💃🏽

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.