Self-portrait, in words
26 Nov 2021
I wrote the following essay to provide enhanced information to the adult autism assessment I have been working through with Dr. Philomena McCarthy. I present it as another picture of my autistic brain running with the brakes (mostly) off.
“I hope this clarifies things, but please email me if you wish to discuss further.”
yes, I guess it does. I’m not sure that further discussion is necessary, but I *definitely* need to communicate more. maybe a lot more. but i’m not even sure how to approach it all. i suppose that if we talked f2f/by video proxy that i would end up rambling into various distracted stories that are connected to the things i really want to say: and remembering Kieron’s point about efficiency w/rt a particular process and goal ... well it probably wouldn’t be that.
maybe this will help. i can’t sleep anyway because my brain stumbled over our last meeting *again* tonight, and rather than write 17 paragraphs in my head until *MAYBE* i manage to detach from the thoughts enough to get into the place where random sensory data permeates my awareness and the brain starts to reprocess input creating the feedback loop of fragmentary sensations that provoke me into a startled reaction coming back into wakefulness from increased/uneven heart beat and wake up *AGAIN* to thinking about what I should say or do within this microcosmic nightmare scenario i have created by reaching out to someone else about whether or not i correctly understand how this embodiment is actually working as intended when it was formed out of the celestial No-Thing(s) of Being/Shakti and Shiva/Awareness to actually *COMMUNICATE* to the wider manifest body that is Our Selves that i’m OK, but not really, and would someone please care to help? that i would actually sit down and PHYSICALLY write them down. (read that last sentence in one breath as a prose poem poem titled: this is how my brain works, but I’m not going to reformat it because the sound of the words in motion through the air communicates the rhythm and the melody and the desparate need to breathe that comes from trying (and failing) to read it in one breath will give you all the feeling with perfect fidelity).
Note that I used nested parenthetical comments just now. that was part of the poem too. but its a framing device and not to be ensonified. That may have actually been the first poem i ever wrote - no I lie that would be the second - using a keyboard. the first was a not-entirely-dissimilar stream of consciousness that came from interacting with a too-large piece of paper and an old IBM selectric typewriter when I tried to write out my thoughts in a specifically non-linear format so that it could be read in any direction: up/down/left-right/right-left and without sequence so that the layout on the page would cause the eye to group and grasp the word/thought clusters and somehow cohere into a moment of captured time. Given that I still have this poem in my archive more than 40 years later means it worked, I guess, although I can’t imagine anyone thinking it to have any significance beyond an adolescent’s play. still i think it was - and is beautiful. nobody really liked that kid, but i do. we share memories of some good and bad times together. fuck, that poem *might* have been one of the last things they did before their parents got divorced and everything was broken forever.
look, i’m just letting everything - all the artifice i use to make sense of the world into linear time and euclidean space - and writing my undedited broken glass brain into this format so maybe you will understand: I TRUST NOBODY BECAUSE NOBODY CARES. this means you. “mental health” was supposed to be on the agenda last time, and i would really much rather Not. Go. There. because IT CAN’T BE FIXED WITHOUT BREAKING ME and i’ve spent far too long putting this Self together to run that risk. I think its kind of beautiful WHILE AT THE SAME TIME kind of hate it but I wouldn’t trade it for anything - except when i would, and that’s when i fervently hope that reincarnation works and that i might somehow return with some knowledge of this life retained within my brain so that maybe i could do it better and harder, but maybe a little slower and not be alone through all of it. many decades ago i read a man who said that "God split herself into pieces so that she might have friends" was no sillier a theology than any other, and while I changed the gender to suit my own feelings on *THAT* matter, the rest of his words ring true.
AND YET the evidence for the continuity of awareness between individual instances of the Being of Humanity is sketchy at best, and there’s no guarantee that i would remember me after passing through the one-way door so i must live until this whole body/mind completes its run. when i am done i will find out - will know and be known by the things that i have occasionally sensed and hope might become part of my own experience.
can you see that i keep running back to the art of words as both my refuge from and means of expression? I just don’t know how to tell anyone, anything. If autism is a communication disorder that grows out of a developmental problem, well that sure as fuck feels like me. maybe i can slip into a more didactic mode now? maybe?
I got stuck on sensory issues in the last call because I don’t even know what that phrase means. I know what the world looks and feels like from within this embodiment. I know that it has similarities to reports from persistent, yet apparently independent, phenomena within my sensorium - and no I’m not putting you on, this is really the way i think, or at least the way i did think for several years in my youth. I eventually decided that even though solipsism was probably true, it DIDN’T HELP at all so I might as well pretend that the illusion of the world was real. It was my grandfather’s death which prompted this change of attitude. I really liked Muzio even though I didn’t really know him well. He treated me like a real person rather than like a dumb kid (pause for weeping) and let me crawl around in his basement recording studio/wet bar/listening room and play his pianos and organs and records. It was on his stereo that I first heard Pink Floyd’s Dark Side of the Moon and when I asked him why he would have something so modern and strange in the middle of his extensive collection of jazz and symphonic music, he told me that it was simply one of the best-produced records he had ever heard. Most of that story is true, but it’s a little hard to tell with memories that are more than 40 years old. I reached the limits of my ability to store memory a long time ago, and I definitely don’t trust my brain’s ability to preserve that which i consider important.
And now there’s a whole story I want to tell about the adults who treated me like a Real Person over the years and how when I read Ender’s Game by Orson Scott Card (this story about how adults damaged a group of gifted kids to win a war should be required reading for *everyone* who has to deal with children. the parallel book Ender’s Shadow is also necessary to truly understand the darkness of it) I felt he was telling the story of my life. but this email isn’t really supposed to be filled up with stories, it’s meant to tell you about my own mental health issues and why this matters. But the only way I can access those important ideas is with stories - they unfolded in time and the context is important because the context is always changing.
SO maybe this is where we can talk about dealing with change? we’re both good and bad at it. mostly bad if the testimony of the years is to be believed, but then again maybe good, too. we have certainly lived through a lot of changes. what i want to say is that i hate it when the world pulls the rug out from under me and i end up free-falling through not-knowing until i figure out how to cope and catch my breath while waiting for the other shoe to drop. this happens with alarming frequency. the most recent example being how we (my partner and i) lost our house because our landlord had his idiot brother in law do *all* the maintenance and said bro-in-law neglected to properly fix the wiring in our house and it was condemned by the ESB. that was the first week of JULY. It’s now FOUR months later, and I still haven’t managed to finish packing and getting my stuff into storage for *SO MANY* reasons that boil down to me having a melt-down with tears and rage and screaming at the top of my lungs if I spend more than four (hah usually TWO) hours working on it. we lived there for 20 years and its like I’m being flayed alive. we fashioned that house into an extension of our bodies that sheltered us and nurtured our children. and now because some damned rent-seeking landlord can’t be bothered to spend a tiny fraction of the rent we have paid him over the last 20+ years we can’t live there any more. I’m not even going to start on the litany of smaller issues I have with that landlord asshole, but i will say that talking to him is a *classic* example of why I Don’t Understand People At All. He was directly lying to me the last time we spoke: there is no other way to reconcile his self-contradictory statements and actions. Why do Normal People do this when it is so much easier on everyone just to tell the truth? But my partner seems to be able to deal with Landlord reasonably well. She told me “of course he’s lying to us. I’m lying to him, too. I just want him to treat us well in the meantime”. Well IF HE’D FUCKING TELL US THE TRUTH, I’D feel like he was treating us well because then maybe we could form a plan based on facts rather than who-knows-what-nonsense-speculation.
Other things: I particularly have had difficulties with Tricia’s work schedule and habits during the Great Unpleasantness while I have been working from home. Her child-minding schedule seems almost but not quite random. This is not helped by the fact that she regularly brings the children back to the house while I am trying to work. I really hate that because they’re worse than all the animals she keeps around. They talk and want attention, and not only am I meant to be focussing elsewhere, but I have no idea when they’re going to show up. This is fairly upsetting and I generally swear under my breath the whole time, but is this an inability to deal with change? Or just being selfish about sharing the space in which I live? I suppose it could be both, but I definitely do everything in my power to avoid the children when they are here. I’m pretty sure that I’ve stayed in my current job for the last 10 years in large part because I hate the idea of finding a new one: dealing with interviews and new people seems like a very high bar just to get the chance to work on something I will find less tedious and stressful.
SO you see, I’ve organized my life in a way that changes are relatively manageable and I can’t tell if I’m good at dealing with change because I’ve mostly limited its scope. When change breaks in on me it is almost catastrophic. And then there are the little routines I have where I tell myself a story of "optimizing my experience" but that could just as easily be interpreted as "leave me alone while I perform my brain-care ritual". I had a Japanese colleague while I was at AOL who understood this instinctively in terms of the Tea Ceremony, and I thank her memory for sharing that understanding with me. TO be honest, I can’t really tell the difference. Some of that is down to well ... sensory issues, i think.
I’m pretty sure that I don’t feel pain the way that most people do. But paradoxically, I do feel like i have extreme sensitivity to physical sensation. there’s just a point where it stops. like walking outside barefoot in the cold is no problem, right up until my core temperature starts to drop and then it’s an emergency. maybe its more like purpose overrides sensation until sensation sets off an alarm. but there are times when the whole sensory apparatus of the body is available. Often it is a constant background noise - until it becomes an overwhelming roar (fortunately, not very often). Fidgeting (i was constantly told to "sit still" as a child) just flows out of that for me, but there is also the "thinking with the body" aspect that I have mentioned previously. Maybe my opening stream of consciousness gives a better sense of this than anything more rationally contained. I forget to eat when I’m working - also using the bathroom. I feel like those body functions are irrelevant and can wait and wait and wait and wait. And then when it’s dinner time I am paralyzed by feeling put off at the thought of eating until i stumble upon the sensory memory of the right combination of foods for how I feel in that moment. This happens a lot and it’s one of the reasons I like to do my own cooking.
To the degree that emotions are an extension of the body’s perception of it’s own inner states, i think I experience emotions differently than most people. This is *exceptionally* hard to discuss because the words themselves become inaccurate when the experienced qualia are divergent. I definitely don’t feel fear or shame in the way that most people seem to experience it. Happiness and "fun", although noticeably different, seem closer to the norm. Joy and anger and sadness (even grief) seem to be pretty much what anyone else would say they are.
Somewhere in here is where I tell you about completing the ADHD assessment document provided with the intake forms. Do you need me to send it to you separately? I genuinely had no plan to do this until I listened to someone talking about why ADHD drugs work and parts of that story resonated with parts of my experience. that said, while i guess i can see elements of ADHD rattling around in my psychological back seat (if you’ll allow the metaphor), it rarely gets to drive the car. I am super-responsive to sensory stimuli, but i prefer to be in low-stimulus environments because it is just easier to be. That said, i become sensory-seeky when under stress (or boredom) because it is a relief from the burden in my brain. Change fucks up the low-stimulus part of any environment because then I *HAVE* to pay attention to everything again.
And in here somewhere is also where I mention how much of a struggle it is to deal with people and professionals in the helping and service professions. I’ve not been to the dentist in 10 years because my old dentist screwed up a filling, the tooth subsequently broke, and I just don’t want to deal with finding someone new - and my relative insensitivity to pain means that I hardly notice the problem - at least once I’ve felt and understood it. OR how I’ve still not been able to find a new masseuse after my last one quit doing that to work in her partner’s business: there’s a combination of not wanting to be disappointed and having to enter into all these temporary relationships with someone who will have access to my body and sensorium that I find totally intimidating. Or how I’m putting off proper HRT for my gender issues because I don’t want to deal with the doctor that I hardly know because his only purpose in my past was to oversee the care I needed after I was electrocuted. Or how I’ve been putting off sorting out my Irish driver’s license because it means finding and dealing with someone to officially give me the mandatory lessons. Or why I haven’t gotten an accountant to help with my taxes. Or a lawyer to help with my landlord.cetcet ad nauseum. I feel like most of these people are not trustworthy because i will not be able to communicate my needs to them. Which is of course utter nonsense when you think of paying someone to do your taxes, but the emotional reaction is still underlying all of it. Is this what one would call social anxiety? I don’t feel any fear, but it’s more like I have just cut off the emotion. I’m not going to do those things because I don’t need to until it hurts.
And i guess that maybe comes to the *emotional* truth of why I am seeking an adult autism assessment: after 57 years, *EVERYTHING* hurts, at least a little bit. Note that this does *not* invalidate any of the other reason about which I have spoken (e.g. teaching in ND spaces, my kids’ future with their own children,cet), but if i let everything that hurt move me, my life would be utter chaos - at least as much as if i let my pleasures run rampant. Do I have mental health problems? I don’t know. I seem to function. But not very well. And I’m finally starting to feel like there aren’t enough years left to live learn and experience all that i’ve come here for. I figure I need another hundred years *AT LEAST*, but failing that I’m going to have to get better at human-ing.
In closing, I feel like I need to talk a little bit about masking, but I also feel like I may have talked about it before this moment. Perhaps you have perceived it through this extended email, but my awareness operates in different modes. In explaining this to people it has become convenient to treat them as personas, but I feel like the descriptions i have heard autistic people give of the experience they call "masking" is far more accurate. This came to the forefront most obviously when I got married and Tricia and I left missions work in Japan while I worked in the software industry in America. She commented to me that sometimes I was a completely different person from the one that she knew in Japan, and often told me to stop talking like a machine. Over the decades I have discovered that there’s more than two different ways I have of being present to the world, at that their usage is very situationally dependent. some of these ways of being have names for convenience in talking to people who are able to perceive the differences. computer me is probably the easiest of the lot, but it is a very small version of my Intention. Musician/Poet me is maybe the one I like the best, but nobody seems to care about that one besides me (at least not enough to pay me or make me think i can get paid). Yoga teacher me probably includes the most of my Intention to Be, but even she is incomplete, although she looks to have potential to include everything. Mathematician me tends to hang out with computer me, but the computer industry doesn’t really have a use for artistic math. There’s a couple of child me versions who basically got discarded because nobody cared, so i had to build a new me. There’s a Warrior me who is frighteningly efficient at Getting Things Done and is also Not Very Nice. In the low-energy limit I am able to use whichever mask is appropriate to the situation, but when the emotions (and other stimuli) rise pretty much anything can happen. To me, these are not separate personalities, although I am told that they can seem that way to other people. We are one person who is very fluid with their self-concept for the purposes of camouflage and communication. And all of us want to leave you with this poem we wrote a few years ago
Disposable Poem #169
that a line in the dust should dance
or that we should care for their romance
and discover a voice in the churning of choice
Here we are
teacher and student, seeker and guide
improbable partners on an unlikely ride
while dancing out trust. still we remain lines
in the dust
I’ve been writing for three hours now, and I might be able to sleep. I definitely need a bit of brain down-time before computer me has to go back to work. I have no idea which way the wind will blow you in your evaluation. But this matters to me. A lot more than I thought it did. I’m going to hit the send button before I think too hard about it. Actually it’s too late for that, but I’m sending it anyway, or else all the work will have been for nothing.
This document was translated from LATEX by HEVEA.