the autism post-postmortem (Patreon)

audio for this post is available here.

hello! I write to you from the bar on the first floor of genesis, the best cinema in the big smoke (edit: i saw killers of the flower moon and ate a hot dog)!! I’m so happy to be back in london…..rain-slick watercolor in neon…me and friends prowling up and down peckham high street like if the clockwork orange droogs were just guys out to have a pleasant evening and slam back some brewskis….

I want to write a bit more about autism, this year’s hottest diagnosis. my thoughts have evolved even since the video and so here they are.

someone asked via google form for specificity about the actual events that led to my seeking a diagnosis. seeds were planted by the sincere assessment of a trusted and knowledgeable friend four-ish years ago followed by my own..extensive..research. then in january this year I felt faint during an argument with my boyfriend and screamed, once, very loudly…then cried for hours, clenching and unclenching my fists, unable to speak. (sexily.) this, as you can imagine, was unpleasant for both of us. really scary for him, humiliating for me, and although I’ve gotten overwhelmed to the point of mutism in past confrontations the scream was unusual. I emailed a therapist as the sun rose the next morning.

(relationships man..they find the open cuts and jam them full of paperclips…(in a lot of ways the autism video and the love video are a dual narrative because I was addressing these movements in myself in tandem! funny))

my new therapist listened to my suspicions, that the event that led me to her was likely not a passionate release of feminine rage but was actually a meltdown, for autists, and that the events of my life and the contents of my mind supported this assessment, and please could she help me not feel so helpless any more, or at least bonk me on the head. parallel to this I booked a diagnostic appointment; they could see me in four months. and see me they did! when the answer was given I cried a little, relieved, then lived the rest of my day, not thinking too hard about anything in particular. but later in the shower without warning I buckled, just cried and cried and cried on the floor of the tub…without any self-consciousness, roared with these rolling child’s sobs. I couldn’t stop thinking about my parents.

from the beginning my parents and I were atoms bashing into one another, too much heat in a small space. my mom was very particular; I wasn’t to hang anything on the walls of my bedroom, or color my hair, or dress in a way she disliked. her particularity extended even to events outside of her control. once she asked me to water the flowers and so I filled up this enormous watering can the size of my torso in the kitchen sink – but I didn’t expect its weight and the can slipped from my hands, gallons and gallons of water percolating into the hardwood floor. mom yelled, and cried, and we didn’t speak for days. meanwhile, my dad to this day is revolted by visible weakness. a memory that frankly still irritates me if I think about it for too long: during an argument with him I tried to explain sincerely why I was upset, but couldn’t stop myself from crying, and so instead of listening he did an impression of my crying in response, these really pathetic babyish boohoo whines, until I gave up and walked away. the unspoken rules of the house were to avoid mom’s displeasure and dad’s ridicule. but I was emotional, and clumsy, and desperate to express myself, and so it seemed the only way to avoid their judgment was to avoid them.

there was a period as a teenager where it seemed we genuinely couldn’t say a word to each other without conflict. mainly my parents took issue with my tone. and often I was short, unempathetic, blunt, quick to irritate. wiped out from playing the part of ‘normal girl’ at school, at home additional conversation made me feel like my head was being clapped with cymbals. but indeed, other times, I would respond to them totally in earnest – but I sounded sarcastic, or unfriendly, and would get punished for it all the same. that was the worst of it, the most hopeless and broken feeling, to genuinely try to be a daughter but ruin the day instead.

I lived in a perpetual state of groundedness for my inability to be pleasant. because I didn’t leave the house or care about anything my parents understood, the grounding involved only revoking my access to the internet, my single source of social fulfillment. I resented them totally for this. on and on this went and nothing changed. the problem of course with their relentless parade of behavior correction was that they were trying to correct behavior brought about by mental exhaustion, an errand as useful as punching a starving man in the face as punishment for his grumbling stomach. I left for london the same month I turned eighteen. I had no fear at all, just volition; I was a rat mercifully released by circumstance from its trap. into uncharted territory, yes. but no longer the trap.

this was a difficult part of my life that I’d not consciously scrutinized even once since it happened, until right after the diagnosis, when it all seemed to make sense, and I sought to make peace with it. I’ve run the gamut from anger to sadness and back again. and after I was finished feeling sorry for myself, I was able to understand what it would have been like to be my parents: my dad, an unusually sensitive guy when you get down to it, was clearly also ridiculed as a boy for emotional displays; my mom was riddled with anxiety to do with perfection and order; and to them, it would have seemed that their eldest daughter was cruel, and friendless, and did god-knows-what on the internet all day, and nothing they tried to do to help her made a lick of difference.

I understand now the tragedy of these conflicts of mind with more clarity than I ever could have without this experience. all of us ‘wrong’. all of us ‘right’. no truth. just survival.

when I told my mom the news following my appointment, the first thing she did was apologize. my mom is not usually an apologizer. it makes me tear up just at the thought of it, her mercy, her willingness to give it without being asked.

this was certainly the most affecting development after my diagnosis. I wasn’t comfortable including it in the video.

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on the whole the diagnosis was significant as an impetus for self-compassion but also a tool for understanding myself as a social being and therefore how I’m seen. I say things that are rude without intending to. I forget to return questions. my tone’s deadpan and difficult to read and if something’s important to me I need to be explicit to make it known. these are hardware snags I keep an eye out for and mention to people I intend to know well. so, rather than freeing me from my own self-analysis, could the diagnosis have made me more aware of my shortcomings, or my masking more elaborate?? and does that mean I’m submissive to a dissident socioreality or am I simply building a bridge towards social harmony, the way everyone, including ‘neurotypicals’, also must in their interactions??

look: autism is having a moment. we’re out in spades. what causes it? who knows. rogue genetics. plastic exposure. the wind. and with anything that seems to have come from nowhere and requires more than five seconds of thought to understand, there’s pushback. surely you can’t all have it. it’s another big pharma plot. or it’s simply a fashionable diagnosis, driven by social contagion. in hindsight I’m a little embarrassed to have come out with my news at the peak of all this, that a personal development that’s healed so much in so many realms of my life and opened the door to profound self-knowledge could be reduced in someone’s mind to a misled person’s trend-chasing nonthink.

indeed diagnoses have gone up significantly, in part because of the light shone on how autism manifests in women and girls. there’s been a 700% rise of diagnoses in the past twenty years; the previous figure of one in 100 eight-years-old being autistic has been amended to one in 36. and if it seems like it’s hyperconcentrated on the internet: well, yes, that’s where we all are. go to a normal relative’s baby shower let me know if there are autists there. the big pharma insinuation also misses the point. it’s probably true that too many soccer moms are prescribed klonopin, and there’s something to be said about a society’s prevalent mental illnesses reflecting the problems of a society first, not its people – but autism isn’t a mental illness. it isn’t medicated. it’s not a curable, or indeed even treatable ‘condition’. in fact it’s such a non-medical issue that one wonders what place it even has in sterile bunkers. perhaps we’ll move away from this and autism’s sequestering within the medical profession will be seen as sort of uncomfortable, comparable to how homosexuality used to be included in the DSM, a once-called ‘sexual orientation disturbance’.

so is autism a disability? your average person might insist it is. asperger’s no longer exists as a diagnosis (just an awful word to say..I would have supported its extinction on that basis alone); instead you’re diagnosed with autism spectrum disorder level one (one wonders what challenges await at the bossfight). what this means of course is that the most ‘mild’ and ‘severe’ versions of autism are conflated, the same word used to describe a quirky tiktok girl and someone with extensive support needs. I can see completely how the quiet melding of these presentations would be confusing to someone who’s not paying attention when the public perception was that autism is synonymous with intellectual disability (which, we now know, is actually comorbid in just one in four people). it’s what your maybe well-meaning relative or friend is suggesting when they say ‘you don’t look like you have autism’. be compassionate towards them as the world changes.

what’s to be said, then, for level one? is this a disability? if you’re asking the government for money or your boss to wear headphones at work – hell yeah, baby. but seriously: some will have been dealt a hand of circumstance that means their autism appears as near exclusively a hindrance. from youth they’ll have been misunderstood, and ostracized, have had weaknesses exacerbated and strengths debilitated by the structure of society, of manmade institutions, normie ways of being. I feel especially for those forced to undergo workplace social conditioning. some will need help and deserve every possible avenue to access that help, yes. personally, after my months of soul-searching, and reflecting on my past, it’s become clear to me: even given what I’ve been through, this shit rocks. my own sensitivity is thrilling. what I do means having a unique perspective is a competitive advantage, if not an absolute necessity. people find my social quirks attractive (which, admittedly, helps…still working on unlinking my value from how attractive other people find me..we’ll get there..). indeed I have meltdowns, and often I come across wrong, and I simply cannot pick up the phone – but of course ‘neurotypicals’ will have a swath of comparable struggles, just wearing slightly different clothes. as it manifests in my life, autism maybe is a gift, yes. but a gift completely indistinguishable from my own identity, my experience of myself, and trying to map the breadth of its reach in me has proven useless, sugar melted into water. things are sometimes difficult. but my soul does not disable me, no.

judy singer, the 'mother of neurodiversity', laments the term as used hierarchically. ‘it is being used to mean “neurodisability” when my idea was precisely to avoid dividing humanity into “us” and “them”.’ neurodivergence, she says, simply refers to the limitless variability of human minds, these matrices of being we’re only in the infancy of truly understanding. and this is why calls that autists are actually the normal ones and it’s normies who are weird don’t resonate with me, nor the magical claims that autists are a new evolutionary form, occupying a higher plane of consciousness (you wouldn’t believe how many comments like that I’ve gotten). these sentiments are still hierarchical, still combative, still placing these infinitely complex degrees of variation in a ring with one another, as if that’s what any of this is about. and in this neurosegregation human traits are appointed as experiences had only by the autist, leading to further atomization. even obvious ‘autistic’ traits are still seen in the ‘normie’, who experience sensory discomfort, or mask, or feel left out, or have intense interests. we musn’t get lost in the sauce.

I do get it. a late diagnosis provides a clear answer to many people's suffering, and so of course one wants to hide away inside it. like I said I spent a lot of time after the diagnosis feeling sorry for myself. and I so easily could have stopped at that feeling. I wanted to be upset forever with my parents, and with my teachers, and with the world, and with my life, which seemed at that very vulnerable moment nothing more than a series of mistreatments. but you must go further. the greatest consequence of self-knowledge is our ability, then, to understand others – but when self-knowledge is tainted by the blackness of past hurts, you drift only further from peace that could be afforded now, and the reality that we are all here, on a planet we’ve named earth, further reaching, knowing nothing. and of course in a hundred years this will all be different, all of it.

sav