Category Archives: autistic burnout

At the zoo, autistic burnout, intermittently non-speaking, Liberation, non-speaking (at times), Passing/Masking, Self-regulation

Wherein I think too much (but not too too much) about (not) speaking

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Henceforth and hereto, let it be known that this post, written between last night, then rest, then again at 3:30 AM, on this day of the year of the corn, 2019, shall be referred to as “being back on my bullshit”. Let it be known that I, queen of the internets, may venture into the dark realm of zoo exhibits, in order to gather our tally-hos as a community subgrouping of wretches, each in our own unique ways, as it so befits us, amen.

Enough with the puns, here comes the sex pistols.

Someone mapped out their speech levels, from fluid speech to non-speaking. This is so great and happy-making. I got to thinking: what if all of us who have varying kinds of speaking challenges did this? Here’s mine:

~~~ You have now entered the inharmonic passing realm ~~~

1) Speaking-as-masking. This is limited for me, and burns me out, but it happens. Sometimes, scripting works, but I try to limit it. Also, there’s this point I get to sometimes as I’m starting to enter social burnout where I can speak defensively to try to get someone to shut up, but that doesn’t last for long, usually. If I switch between levels, as described below, sometimes it can get drawn out, which…sighs, that usually makes (masks?) things worse (walrus?). This, along with alternating 2, 3, and 6a, is how I was able to be onsite as a tech writer, even if it meant falling apart when I got home (or on the job). sings We bring more than a paycheck.

2) Info dumping. I can speak fluidly, but about interests. Anything else, not so much. Which is great – if someone wants to listen to me info dump. (Yes, I need more friends with shared interests.)

3) Reading things off a page. I can usually do this, especially if it’s about interests, but also, if I have the energy, in general as well. Same goes for memorizing, although that’s tiring to rehearse, says the time I started to slide into autistic burnout because I was performing out too much.

4) Faking non-fluid speech. This requires some explanation. I’m close to non-speaking at this point, but I can rest on words, or utterances, to fill the gaps between not being able to speak.

Me: “Hunh. (pause) Let me see. (…) (…) (…)”.

Someone: “You ok there?”

Me: “Yes, give -” (…) “OK.” <mirrors “thinking something through”> “Wow, OK!”

Eventually, I can brokenly get the thought out, or sometimes, info dump a few paragraphs all at once.

~~~ Unmasked demarcation line, here be dragons and cephalopods ~~~

5) Blurting, echolalia, exclamations. (Hi, I can’t converse via speech for shit! :D) But also: “Shit!” “Mierda!” “What am I doing?” “uggggghhhhHHHHHHH” “ok, ok, ok, ok, ok.” Ok.

6a) Not speaking, because burned out. You couldn’t pry it out of me. I can type and form sentences, and write, just fine, although grammar may start slipping a bit. Maybe wait a couple of hours, or a couple of days, or a couple of weeks if you need me to talk. ASL is good btw, AAC is quite nice.

6b) Not speaking, because not burned out (or recovering from burning out). I’m happily ping-ponging across all the other levels, including the ones below, while working to be aware that 1-4 can use up all my spoons, then I’ll start burning out — so careful now, autienaut.

7) Not grammatical. Definitely not speaking. I’m still thinking, but ✨ it might ✨ shut off at times, or be more emotional, visual or auditory in nature. This is about as close as I get to being so-called pre-verbal, but wait!

8) “Post-verbal“. Aw, the poor middle-aged puzzle piece! Such fortress, much walls, wow. Earth-2047 Autism $peaks is quite worried about fluid adaptation. “Your parent isn’t like my child!” I’m in my own space, whether or not you decide to join me there, that’s your business. This usually happens if I’m really burned out, but it’s fluid (yes, there’s such a thing as being fluidly non-speaking) in motion between 6-7 as well. Come sit, we won’t walk.

So, there’s my levels. They tend to be somewhat discrete, but they can vary somewhat quickly, and can mix together at times.

The thing that gets me (and makes me sad and angry, tbh) is that people, NTs especially, don’t see how amazing this is – how there’s such a range of variations in human experience, around something that’s assumed to be completely binary in nature. “You either can speak, or you can’t.”

Also, all of our experiences across the speaking continuum, vary so incredibly between each one of us!

Ignoring this is another way that NT society misses out on the depth and range of our lived experiences. It’s both a shame, and their loss.

Another thing I’m (thinkthinging about) in relation to being intermittently non-speaking (or as Paula Durbin-Westby calls it, “non speaking (at times)“) is “what happens when I’m not in social or autistic burnout”? Especially since if I’m not in burnout, I’m still intermittently non-speaking, it’s just not as likely to be ✨ (Nope, not happening) for hours to weeks at a time. There’s been times where I knew that I wasn’t in burnout, such as when I had several days somewhere quiet, and was rested and relaxed — and I mostly couldn’t speak then, either.

Not being able to speak for me is a way of recovering from masking — just as masking in general can lead to burnout, and require a period where our defenses against NT society are stripped bare, so too does “speak-masking” require the same. (Amen.) As well as it being something that I just do. It happens, or doesn’t happen, or whatever.

I do wonder about what speaking would look like on a more regular basis, as letting go of cycles of burnout and recovery become (hopefully) more common, post-self-affirmation. Is it echolalic? That’s pretty well a given, but what if I have echolalic metaphors that point to echolalic speech and thought? I’ve had that happen. “The NTs, they are quite alarmed.”

Would I have my own dialect? Would I make up my own words? (I’m very certain of this. I love neologisms.) Make up my own frigging language? Would I sing things? (That’s probably a given as well — stimming! Interests! Stimming and interests! Yayayay! Joy++++!) Or some mix of AAC, ASL and all of this?

I haven’t *even* gotten into typing/writing, and how that interacts with (not) speaking. What if this entire post is translated into neurotypical rhetoric? (It is, btw. Paging Melanie Yergeau and Julia Miele-Rojas, intracommunity dialogue courtesy telephone.) My assumption is that at least someone who isn’t autistic is going to read this. Maybe. Who knows? Why even translate into NT-speak, though? What if my language was mine, and mine alone, and that’s OK? What if meeting us where we are was the norm, rather than NTs demanding that we do all the work?

So many questions!

AAC, autistic burnout, Communication, Police, Violence against us

“you’re not disabled enough to use AAC”

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TW: forced commitment, prisons

i used to buy into this. i don’t anymore.

as mel baggs explains, “don’t use AAC, you’re not disabled enough, not non-speaking enough” is the wrong way to approach things.

i’ve wanted to use AAC for years, and hid out a lot when i can’t speak, in part because of my assumption that i might offend someone if i used AAC, or learned how to fluently sign. it held me back, both personally and in terms of interacting in society.

the more people use AAC, the more common it becomes, which makes it better for *everybody* who can or might benefit from its use.

i’ve spent a lot of my life hiding being non-speaking, but i’m working on that being no longer the case. it messes with my communicating with other people (imagine having to rehearse most of your conversations, and what might happen as a result), and burns me out (imagine feeling like you’re trying to shift a large truck out of a stuck gear).

yes, i can script, and mask speech, at times. it doesn’t always work. i’ll be speaking, masking away, then…i can’t. so then i start trying to cover that up. until that doesn’t work either. so then, i’ll shrug, smile and silently hope for the best. then i’ll burn out, hide out or both.

go to the store? prepare in advance. go to a meeting? prepare in advance. meet a friend? prepare in advance. if i can’t script, mask. if i can’t mask, fake non-fluid speech. if everything shuts off, shrug and smile. pray not to get detained, arrested or 5150ed.

here’s to no longer hiding. 💃🏽

#actuallyautistic, autistic burnout, Autistic community, Autistic People of Color, Autvoid, Self-advocacy, self-dx

life in the autvoid

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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. ✊🏽

autistic burnout, Autistic community, Long Reads, Neuroqueer, Self-advocacy

Down the rabbit hole with WorryFree, as sung by the Crystal Gems

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Detroit, in Sorry to Bother You, wearing a pair of earrings that say "MURDER MURDER MURDER" and "KILL KILL KILL"
Detroit, in Sorry to Bother You, wearing a pair of earrings that say “MURDER MURDER MURDER” and “KILL KILL KILL”

CW: cartoon violence, graphic imagery, #metoo, Pulse massacre, Copious Steven Universe spoilers, copious Sorry to Bother You spoilers, copious interest stanning for Boots Riley, functioning labels, passing as neurotypical, whiteness, cishetness

“Look at this place, look at your faces.
They’re shining like a thousand shining stars
Isn’t it nice to find yourself somewhere different,
Why don’t you let yourself just be wherever you are.
Why don’t you let yourself just be somewhere different.
Why don’t you let yourself just be wherever you are.”

“Be Wherever You Are” — Steven Universe (SU)

Allow me, oh Rose muse, to quote freely and under the doctrine of fair use, from The Crystal Gems and Sir Boots of Riley and The Coup of Oakland Fuck Yeah.

I’ve had two different coming out processes around being Autistic.

In the same year.

I’d been struggling to find a way to disclose as Autistic for a while. Getting close to finding support materials, then delaying it. Starting to come out, getting scared off (or talked out of it by some allistic friend). Trying again, melting down, waiting. It took two years of sustained burnout, very detailed visual thinking (note to self: don’t read graphic #metoo depictions, don’t read any accounts of the Pulse massacre either), sensory overload and hyperfocusing to decide to take matters into my own hands. Which I did: I took the tests, read the DSM autism criteria, watched videos from Autistic YouTubers, found basic support materials for autistic women, put it all together, done.

I started telling friends online, and discussing things with other Autistic people. Nobody objected, everybody was supportive. Which was a huge relief! “I’m Autistic! Yay.”

I also had a lingering doubt that there was more to this for me than what I kept reading about in the books I picked up, all of which were geared toward Aspies, because that’s what I could find in terms of Autistic 101 self-help books. Once I got past the diagnostic criteria (which was a fit), much of what was being presented as “life solutions” seemed too “shiny“, white, frequently cishet, and written for someone who is closer to “almost neurotypical” (or who views themselves as such). A notable exception to this: Cynthia Kim’s excellent “I Think I Might Be Autistic“, which I found to be much more accessable, informative and not overwhelming in tone or scope.

Further, I deliberately rejected being part of mainstream society as much as possible in my teens (both by choice and out of survival), and shifted my focused to activism, the arts and spirituality. (I also worked full time in the computer industry for years, which felt like living a “dual life”, and frequently resulted in my being notebook-throwing level miserable. I left that behind in 2001.) In terms of useful life wisdom, these books weren’t providing me with much. I was more interested in making informed decisions about if I should try to integrate into society as an Autistic person from a more well-informed place — or more likely, have better tools to inform people with in the creative and activist circles I’ve been part of most my life — but I tried to keep an open mind. “Can’t I just live in a van?”

“All I want to do is see you turn into a giant woman.” – SU

“This is where we get our grub on!” – Sorry to Bother You (STBY)

“Use your white voice.” – STBY

As I said earlier, while I fit the criteria for autism (readily) and “passed” all the self-assessment tests, I didn’t really fit the “Aspie” social profile, at least as it gets typically presented, either. I’ve also been part of crip liberation movement work, and there’s overlap between the disability community and the trans and intersexed communities I’m a part of. I’m also an anarchist and communist. The idea of looking at “Autistic success” in terms of work and monogamy is discomforting, if not offensive.

Nevertheless, my lack of finding a place that fit made me nervous. If I’m not “high functioning”, and I’m not in need of extensive daily support, then who am I? The best solution I could find to “work doesn’t work for me” is “start a business”, which doesn’t work for me either; even if I wanted to do that, I’d need to spend money to handle things that I don’t have the ability to juggle, or become a boss. Allow me to quote from the IWW Preamble here: “The working class and the employing class have nothing in common. There can be no peace so long as hunger and want are found among millions of the working people and the few, who make up the employing class, have all the good things of life.”

It started to sink in that I was a lot more autistic than I had presumed at first. I figured out that I mapped to “low functioning” every bit as much as “high”. Possibly more.

The last “high functioning” book I read was full of dire predictions about the risks of being unassessed later in life, and rather unpleasant (and paradoxical) attempts to unmask whoever was reading it as well. The cognitive dissonance of it was too much to bear, and I started to come unglued.

I am very good at patching my head together on my own. (I’ve got lots of practice.) Life throws something at me, I learn from the experience and adapt. When “something” is more like seeing movies in your head for a month because you read some horrible story, or a series of them, or something affecting you so deeply that it feels like your skull is being split open — that’s OK. I’d learned to take this sort of thing in stride. Pulls out industrial grade self-care kit, gets to work.

So, I know how to fix things, even if i’m the thing being fixed, and I’m the one doing it. Yay! Problem solved, right?

No. I was a mess.

Cassius Green squares off with Steve Lift in Sorry to Bother You
Cassius Green squares off with Steve Lift in Sorry to Bother You

“This is when I started to panic. A little bit.” – me, mimicking Garnet

“Sit. Down.” – STBY

I was in freefall. I pieced my head together well enough, but everything was setting me on edge. It was as if I was living in an meltdown tunnel.

I started reviewing my past in more depth, my childhood in particular. My childhood had no filter. I stacked rocks. I stared at shiny things. I’d read the encyclopedia, or go through the same book for hours. I’d stim in whatever way I’d please, or get stopped from doing so. While a lot of things were rather intense (I remember throwing up in the green stamp store as a toddler because everything was way too green), the most overwhelming thing in my environment were authority figures and other kids. I’d run into closets at the school, chase my crush’s boyfriend when my neurology spiked, reinvent the rules of a game on the fly while we were playing it together, fight back. When I got sufficient support from teachers (which did happen twice), I’d focus on school work, and start to relax. In those cases, the teacher served as a sort of stand-in for friends. The moment I’d move to the next grade, the support was gone, and everything would fall apart again. I decided to bail on society when I was 14, left high school when I was 16, and save for a few rather miserable years where I half-assedly and very angrily tried to assimilate in my 30s, that’s where I’ve lived since. This is not an “Aspie success story”. I’m not even sure it’s an Aspie failure story. The “fitting in, eventually, but still being sort of quirky” narrative wasn’t me. (I also think that narrative is assmiliationist, but it seems like some people are able to sustain that better than I can — frequently at a cost.) I’m not sure that I’m that different from when I was younger, I’m just an older, more experienced, less traumatized version of myself.

Eventually, I started finding more cogent answers on the basis of lived experience, not just diagnostic criteria. I pieced together that “Asperger’s” no longer exists, “functioning labels” are flawed and offensive, and that there’s community to be found across the entire spectrum — but that it’s less likely to be found in a book from a mainstreaming-focused publisher. I was wounded, but I was magical as well.

“You might not believe it
You might not believe it
But you got a lot in common, you really do
You both love me and I love both of you”

“You Both Love Me And I Love Both Of You“- SU

“We are all part of one spectrum.” – Amy Sequenzia

What saved me was reading people who have a strong self-advocacy narrative around being disabled. I can’t integrate into society, I’ve tried. Perhaps in the future, I will, but I’m not going to risk setting myself up for more failure. It looks way too much like “I didn’t even know that you’re autistic!”, which is both offensive and not who I am. People know that I’m different well enough to comment on it, resist it, give me grief over it all my life. I don’t hold any resentment over that (now, at least), but I get the message. It hurts to say that I’m “too weird” for even “weird subcultural spaces”, let alone mainstream ones, but I am in a lot of cases. I discovered support materials that were more of a fit – “Loud Hands“, “All The Weight of Our Dreams“, autistic bloggers who write about being Autistic as a disability (including bloggers with multiple disabilities), all from a self-advocacy and crip liberation perspective.

I also started to realize – admit to myself, really – that I’m not always capable of speech. Definitely not fluent speech. When I started writing this, I was coming off of two days where I could barely speak. This is probably tied to burnout in part, but I’ve always preferred not speaking. When I speak, I’m not speaking as much as translating (writing is the same way for me, it’s just easier), and unless I’m scripting, I’ll have to pause at times (or go mute for a bit) to “catch up”. When I am speaking, I do love to talk about interests with friends that I trust, one-on-one.

Having challenges speaking was the last piece in the puzzle (cue Autism $peaks détournement) — accepting this was what allow me to feel whole again. I let go of “Autistic as in different” and grew into “Autistic as in disabled”. This also maps to a growing body of information that women and non-binary people (and I’m presuming, trans people as well) have “more pronounced symptoms”, or as I prefer to look at it, “That’s right, we’re even more fucking awesome, even as many of us have more challenges living in a society that was never designed for us in the first place“. I gave myself permission to say goodbye to the high-functioning (?) person I thought/hoped that I might be, but that also left me with a strong “wait…oh, shit, this is deeper than I thought” feeling when I considered that as a possibility, so I could be who I really am, without reservations.

“It’s over, isn’t it? Isn’t it?
Isn’t it over?
It’s over isn’t it? Isn’t it?
Isn’t it over?
You won and she chose you
And she loved you and she’s gone
It’s over, isn’t it?
Why can’t I move on?
It’s over, isn’t it?
Why can’t I move on?”

“It’s over isn’t it” – SU

“A cop lives inside of all our heads
We’re gonna kill him dead, we’re gonna finish what we started
A boss lives inside of all our heads
We’re gonna kill him dead, we’re gonna finish what we started”

“Finish What We Started“- Anti-flag

“This is Cassius Green. Sorry to bother you,” – STBY

So…what’s next?

Running after some “You’re almost neurotypical but not quite, back to work” unachievable goal that recedes off into the horizon endlessly (until it all falls apart and I’m left exhausted and unfiltered), will simply never work for me. In a lot of ways, being someone who integrates into the frequently ableist (and racist, and sexist, and…) activist spaces I was part of doesn’t really work, either.

If the theme of my childhood was being who I truly am without reservations (and paying the price for that), this is the recapitulation.

Sing it loud and proud: I’m a disabled, brown, gendervague, neuroqueer Autie.

I wanna know you, know I know you know me
I want a fire that can extinguish the sea
I wanna crush my loneliness into dust
Please ride with me until this whole thing busts

Anitra’s Basement Tapes – The Coup

Here’s to the new life, friends. Forward.

Autism, autistic burnout, Gender, Liberation, Neuroqueer, Passing/Masking, POC, Race, Self-advocacy, self-care

The Allistic Gaze

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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.

Autism, autistic burnout, Passing/Masking, self-care

Autistic Burnout

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“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.

#actuallyautistic, Autism, autistic burnout, Clinical things - meh, self-dx tools

#actuallyautistic: origins and the AQ test

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(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.

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

Nautilus – autism, psychic pain, and the Pulse massacre

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

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

Nautilusing – n.

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

1. A dark month of the soul.

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

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

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

You’re devastated.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then? You watch the news.

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

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

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

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

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

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

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