Ten steps to the side, then a line drawing.
Or: a mostly personal history of neurodivergence.
Dear subscriber,
This is a long form read on the second-to-last day of Autism awareness/acceptance month. Less poetry, more essay. Less play, more factual information. I wrote this on and off for the past weeks here during my artist residency in Tennessee, tried to shorten it, could not.
Depending on how your brain and body function, this might resonate with you on different levels, or none. My proof reader (thank you) said, it “makes a very compelling case for how people should expect interactions with you to go (a whole spectrum of expectations really) and why those expectations are necessary and good.”
Enjoy this guided tour (?)
This is a personal history of neurodivergence.
Ten steps to the side, then a line drawing.
Despite never not having existed in an emotional state of un-belonging, there exist categories, they overlap, I fall into them:
human, person perceived as woman, nonbinary child of the mid-eighties (long before that kind of vocabulary was available), ambiamorous (enjoying both monogamous and non-monogamous romantic relationships), somebody with allergies, recovering „gifted child“, neurodivergent person, late realized autistic adult. The names of categories change over time as conversations and research evolve, as they always have, but this head does not. I am, I am, I am.
I slept badly the other night, was up way too late hyperfixating on finishing a small soft sculpture of two celestial bodies having a convoluted conversation. I woke up feeling particularly brittle, noticing autistic traits more than on most other days. Lack of sleep turns the volume up on everything, catastrophically so. Sound, color, brightness, everything is too much and perceived as a persistent kind of pain, like walking in new shoes with blistered feet. Underneath overhead lights, I feel anxiety spike in the middle of a friendly chat, lose perception of how I am connected to the ground, or the body. Overhead lights are the enemy. I must place a small indirect light source in every corner of the room instead.
Identity is a flimsy construct in this state, and if I don’t make something with my hands or voice, I forget who or what I am. My breathing becomes shallow. Certain colors or stripes are nauseating. Every conversation I have feels clumsy and awkward, misunderstandings are plenty, and I sit dangerously close to a bottomless hole of rumination and spiraling; two old friends that make sleep impossible, and the circle starts over again. Lack of sleep means I don’t have the energy to mimic other people sufficiently, not that it would be necessary to mirror others, but this is how I taught myself social interaction as a teenager, and now this mechanism cannot be reverted. My proprioception (awareness of the body’s relation to space) is off, so I narrowly miss my mouth while drinking water four times in a row and then bump into the doorframe twice on my way to get a towel. My interoception (awareness of what is happening inside one’s own body) is off, so it takes me a while to figure out that an intense feeling of unease is caused by needing to eat something. I don’t have the bandwidth to decode undertones when people speak, so I have to play by my own rules and assume that everybody means exactly what they say, because why wouldn’t they? I am very capable of understanding nuance, sarcasm, and irony, but damn, is it exhausting and silly, so I do not want to play that game. It feels like a trap, like somebody wants to play a trick on me, and I refuse. Legend says, my first word was „no“. Legend says, I would not look my mother in the eyes when nursing. This could mean something, or nothing. Legend says I was a weird little baby with a death stare reserved for anybody who would cross my personal boundaries, sitting in a corner preferring to play by myself, stacking buildings blocks up high, sorting them by color, and carefully taking the whole thing apart, a kid who sang whole songs before she spoke, and taught herself to read at a very young age, but I was also simply a lot like my father and grandmother. Science says, neurodivergence runs in families.
There have been occasions when people I don’t know very well have asked me to look them in the eyes during a conversation. If I am not extremely well rested and having a very good day, it feels like a violation, like somebody touching you when you have not consented to being touched. I like the bridge of the nose or the mouth as a workaround. I look at those. I know people’s noses very well. If I love them, I occasionally pick the eyes to look at. It feels like touching somebody’s hand, and not in a professional handshake kind of way.
Things build up over time. I feel quite haunted by events that happened years ago, often to a ridiculous degree, and past injuries still carry severe pain. The past is the present is the future is the past. Time does not seem to move forward the way you’d expect it to, so „progress“ must be redefined. Memories are now. Time heals next to nothing if a brief moment five years ago is as present as a moment ten minutes ago. I don’t know if this is part of the reason autistic people are more prone to developing PTSD and CPTSD, but it sure feels like it. I have had my brush with trauma, and now it lives in my bones and doesn’t get processed, along with five hundred other emotional impacts of the past four decades.
For healing’s sake, I desperately need the feeling of being in good company, but I am relieved when a social gathering gets postponed, because I am sure that I wouldn’t be able to sleep again after an evening of conversation with more than three people, or hearing four conversations happen in the same room at the same time. I love socializing if it is with certain folks. It brings me so much deep, meaningful, lasting joy that I am happy to endure the following social hangover. Human connection informs my work, it makes my art better, deeper, adds layers and ties loose ends into tight knots. I think about my friendships, the few where I am happy to look people in the eye because it is not too much, and it makes me cry. It is such an enormous thing to be seen.
It tickles me how we, with these kinds of brains, often recognize each other across a room, even if we haven’t been officially labeled or diagnosed as autistic or otherwise neurodivergent, how we sometimes become confidants naturally, how we collaborate on art and stay up late speaking through anecdotes and exchange of factual information. I have missed many, many opportunities for meaningful connection or career related networking because they were happening at bars that are too loud for me, in crowds that are too big, galleries with unfortunate lighting, drunk in the early hours of the morning, or on days I needed deep rest to recover from another social interaction. Often, I have to make a decision between socializing the „correct“ amount to feel like I am forming lasting connections, and getting anything else done for the rest of the week. The intensity which I want to bring to a social interaction to feel good about it, combined with my quickly drained social battery allows for fewer social outings than society asks from me, and fewer than I wish I could be part of. As a result, they become highly curated. When I am here, I hope to be the most present I can be.
I had to say „I am sorry, I can’t“ to social events many times in my life, often leading to not being asked or invited anymore. People I cared about assumed I didn’t care, or was always too busy. I believe I lost blossoming friendships over this, I know this is true for many autistics.
I keep saying „Keep asking, please“. Sometimes, it works. Often, it does not.
Autism comes with an excruciating amount of loneliness, unless we collectively make the effort of communicating the ways in which we can show up for each other that are not tied to places or situations that overstimulate us. We overstimulate easily.
I once went into a meltdown because I dropped a box of cutlery into the kitchen sink, and the noise felt like a saw scraping the insides of my skull. An autistic meltdown (an intense response, often physical, to an overwhelming situation) can look differently for different people, and is deeply stigmatized. Meltdowns require a period of recovery, and often, the recovery must happen in isolation. Even in autistic communities we often do not go into detail about what a meltdown looks like, in fear that it will be so off-putting nobody will want to talk to us anymore. Meltdowns can be containers for rage, self-harm, dissociation, destructive chaos. Meltdowns happen, meltdowns end, meltdowns require recovery time.
Long before my therapist said „If we assume you are autistic, everything you have been struggling with since childhood makes sense. It is the thread that connects everything.“ she looked at me in my second session after I had given her a summary of my life, and simply stated, „This sounds incredibly lonely.“
It hit me like a ton of bricks. I have still not recovered from a life of thinking that the isolation is purely my fault.
I was a child who would come home from school and have a „tantrum“. Everything pushed me over the edge - questions of any kind, demands for social interactions, being asked to set the table, having too many people present, homework, the noise of forks against plates at lunch. I was repeatedly told I was being „hysterical“ and that I was „overreacting“, that my emotional outbursts were too much.
Nobody told me that, as a school kid, I was spending five to six days a week in a room with thirty other children, so it only made sense that I was constantly on the edge of a meltdown or in the middle of one. My brain simply hit its limit and I needed to sit in my room by myself and read in silence for the next five hours. It was not personal failure. It was brain function. No filter.
Science says that in most humans’ brain development, neurological connections that are deemed unnecessary are cut periodically, allowing the brain to take in and process certain pieces of information while disregarding others. Autism means less pruning of those connections, and a much higher rate of information intake and processing. This requires a ton of energy. I was a child in a loud, high-stress environment, and everything was perceived as equally important: social interaction, math, construction noise, history, the side-eye a bully gave me in the hallway, physics, the anxiety about an upcoming test, the thought of gym class, the itch of an ill-fitting pair of pants, the loud breathing of a classmate.
In my memory, I spent most of my childhood just screaming at the world, and this includes the moments I was perceived as so very pleasant and quiet.
Behind the house there were dumpsters, and there I hid and watched the neighborhood kids as if I was an alien who had just landed and needed to gather information about humankind. I excluded myself, but I also often felt excluded by my peers, haunted by the persistent feeling of entering a room full of people and knowing that you are not part of the conversation or invited into the group.
In my twenties, a boyfriend told me that I needed to ask questions in conversations, otherwise people wouldn’t want to talk to me. In the moment, it upset and angered me, but in hindsight I am glad he told me. I just had no idea. In my constant suspicion of missing the manual for human life, this was just one of many pieces of information I had simply not come across.
Autistic people thrive by diving into special interests, and those can be any topic or activity worth sinking our teeth into. Masters of rabbit holes. Human magnifying lenses. Many of us see details before we see the bigger picture, often called „bottom up processing“. This makes us experts in many very specific fields. I wanted to become an expert at human interaction. I studied it like i was being paid for it - how we talk to one another, the kind of language we use, how to communicate clearly. I love listening to folks talk about interpersonal dynamics and I cannot get enough of people telling me stories about their relationships, their families. There is no such thing as too much information - I need to gather it all, I need to know, for personal, internal science, and I need the backbone of theory to put it into practice.
Neurodivergence carries a lot of shame, even if some claim it is a superpower (and sometimes it is).
Autism is a disability by definition. Most days, I do not feel disabled. I have built myself an environment that I thrive in, that makes sense. It is the world and the systems designed by others that I am supposed to exist in that disable me, the environments built by and for non-autistic people.
My five-year-old self knew exactly who I was, and what I needed: music, drawing, making, storytelling, everything in my own time, friendships that were few but full of depth and imagination, bottomless wells of expanding reality through fiction. An endless flow state of wonder. Feeling all the enormous, catastrophically intense emotions in all their might. Screaming them out into the world without anybody telling me that I was overreacting, that things weren’t as big, or as loud, or as tragic, or as difficult as I claimed they were, but also without anybody telling me that things weren’t this stunningly beautiful, this heartbreakingly amazing, this bright, this touching. I distinctly remember that feeling of KNOWING what I was and what I needed without having the words for it, and I also remember the following decades of school that tried to beat this gut feeling out of me.
Like many late realized autistic adults, I quickly made learning everything about autism my new special interest. A staggering number of autism researchers are autistic, experts of our own brains.
Suddenly having a word for having lived a life with an odd brain is like this: Imagine looking at your experiences all these years and seeing something that doesn’t make sense, an arrangement of tiny little scribbles floating in mid air, until somebody tells you that actually, your required viewpoint is ten steps to the left. You walk over there, see a mark on the floor with your name on it, look at the scribbles, and suddenly all the bits join up to form a perfectly clear line drawing. Or, imagine feeling like a failed horse for decades until somebody comes along and goes „hey, zebra“. Huh.
There are studies that show that autistic people experience a wider range of life events as traumatic due to our particular information processing styles. There are people in the field of autism research that say living as an autistic person in an ableist society is a source of trauma in itself. I do think that anyone with a heart cannot live in a capitalist society without deep scarring, but I suppose some of us just scar more easily, simply because our skin is built differently.
We also know that if you know one autistic person…you know one autistic person. We come in a myriad of shapes, sizes, flavors, whatever you want to call it. The percentage of queer people is many times higher in autistics than it is in non autistic people, something that has only been researched in recent years. Maybe it is biological. Maybe it is because we are familiar with the endless possibilities of having a brain on the non-linear autism spectrum, and are therefore less prone to thinking that sexuality and gender identity are clear-cut binary affairs. If one thing comes in so many colors, why would something else be so black and white?
In the 1980s, studies said that out of 10,000 people, six were autistic. In 2024, the number is one in 100, some studies even think it is higher than that. There probably aren’t more autistic people now than there were in the eighties, but so many of us were overlooked due to diagnostic criteria that so long assumed autism primarily occurred in young boys, not acknowledging the many autistic adults (and specifically autistic girls and women) who had spent a lifetime perfecting their masking skills to seemingly fit in perfectly - which is hard, draining, crushing work - if they had even made it to adulthood.
Over 55 percent of autistic adults have thought about suicide many times in their lives.
It is difficult work to live in this world as is. It is even harder work when you have a certain kind of brain.
As I finish writing this piece, I remember that some people read this and think, „This is intensely personal, I wouldn’t be so open about this“ or, „This is brave“, or „This is very dramatic“. Do you know what autistic people also don’t really give a shit about? Social norms. We don’t understand half of them, and think the other half is mostly silly stuff people made up for bad reasons (with some exceptions). If rules do not serve us, or the community, why bother?
I don’t think any of this is particularly personal, or brave, or dramatic. It is simply a collection of facts about being alive in the world, for the purpose of connecting to those of you who might be in need of connection.
I know it helped me, back when I first had an inkling about the makeup of my brain, to know that I am, despite my constant emotional state of un-belonging, in fact, not alone.
Until next time,
Anna / Squalloscope
i felt so so deeply your description of childhood and adolescence, especially as a little alien creature trying to learn everything you possibly can about the world but always getting it a little bit wrong…