—Content warning for mention of Suicidality and some abuse—
Looking back on my life, I (and my psychologist) contend my Autism was actually quite obvious. I am trying to mentally steer the car of my words for this post so it doesn’t veer off the cliff into the rabid anger roiling deep within me from all this not chalked up to the developmental disability that informs my life.
There’s so many intersections at play as to how I was missed that it deserves its own investigation, but for now I have a list that is a little different than hitting the criteria points.
I see a lot online about how late diagnosed people say they always felt “different”-but I never did. I was told I was different—but no one could ever follow up on WHY or what this difference was. I was just constantly confused at everything and perplexed at how existing was so difficult, not just emotionally but pragmatically.
It wasn’t until my early 30s I began to see a pattern, asking my past therapist why the same things kept happening. I was utterly convinced by them and the self-help horseshit of Instagram, that I was just a suffering, avoidant-attachment person who at the very least had narcissistic tendencies. In fact, 6 months before I came across ASD I took a screener and thought Narcissism may be worth looking into, so I could fix myself for other people.
Figure 1: A common complaint was that I never talked or communicated. Why would I when I was just ‘selfish, self-absorbed, conceited, narcissistic, unempathetic, difficult and stubborn?’ Yeah. That makes me really want to open up.
The truth is as the years went on I lost the drive to figure myself out. Therapists telling me to ‘write letters to the people’ whose relationships inevitably dissolved like snow in water—as if I had not scripted it 200 times before on paper, in my head quietly, out loud alone. Like I said, I didn’t think I was different but something was pulsating in me. A voice that kept saying “this isn’t all of it, this isn’t all of you…” I felt so bad all the time. I didn’t know what was wrong.
In high school I would drive out (when I did drive) to libraries outside my town so no one would recognize me, hunkering down in the empty basement stacks as I sifted through the self-help, depression, gifted sections meant for teachers and parents on why their kid is the way they are. I was looking for answers. I was looking for myself.
Without the clinical language of Autism, I languished for over 3 decades inching closer as I aged to the orbiting despair that eventually only has one end. I sometimes wonder why I am allowed to be mad at everyone who missed me when I couldn’t even see myself clearly. But as previously mentioned, it was not my job.
Here are 3 things in hindsight I cannot believe didn’t trigger in me a curiosity as to what may have been going on.
Headphone Use
Headphones are everywhere in our times. It is not unusual. However, like most things regarding Autism it is the frequency, intensity and duration of said traits/symptoms/characteristics that define the disorder—not simply these traits existing on a continuum in the general population.
There has never been a day in my life my headphones were not with me. They are an extension of myself to the point I would never lend them, leave them at home, travel without them either one block or a days worth of travel. Getting back ups when that particular squelch starts to occur in one side indicating faulty or old wiring is priority.
As much as I cannot live (figuratively) without listening to music everyday, ensconced in sounds of my choosing on repeat, it was only at the beginning of my ASD investigation where I started to question the purpose of my headphones. Yes, I love music but did that fact overshadow the more pertinent, invisible reason of keeping noise out?
Visiting Reddits where people just discover headphones blows my mind because I cant envision a life where they were not, I suppose, an accommodation I didn’t realize I was making. I never wanted to engage, be talked to, bothered, harassed (obviously) or annoyed by the outside. Even arriving home now, headphones give me a sense of comfort, security, a sensation of being cuddled without having to be touched.
Figure 2: A comic I abandoned years ago. My past therapist said my art is my unconscious speaking. I can kinda relate because people asked me all the time what my shit meant. I couldn’t tell them, the art was supposed to speak for itself. Why would I talk when my art can do it for me?
In high school not only did I wear my headphones at ever chance I was allowed, I’d find empty classrooms on break and lay on the floor. Sometimes a friend and I would go to find staircase to escape to, far from the cacophony of the cafeteria to bathe in quiet air, sealing us from outside traffic.
Students are free to roam but when given a chance to do so it was like I would retract. I had no inclination to mingle and I didn’t even actively think “I want to hide”, it was instinctive. Getting away to me means either expanding so far I am lost to others or tucking away so discreetly I am visually missed. It folds right into the next aspect because I’m starting to gather my “traits” are not solid things but rather like a living organism with many parts playing off and with each other so that I can find peace here and there.
Desiring Dark
This “behaviour” of literally going too far (eloping) or hiding was exhibited early in school with many instances but also took forms at home. As an adolescent I moved from sleeping in my bed to in my closet on the floor. My parents just let me “do my thing”. I loved the feeling of being in enclosed, tight spaces that I was in control of. Having a canopy surrounding my bed also helped in making me feel secure, I guess. I really cant explain why I love it.
It does not translate to being ok in elevators, let’s say. I sweat in distress every time I have to enter one. I have recently started to ask my therapists to come and greet me so we can ride up together—I realized that having this support dissolves my anxiety for the 15 second ride up. It may sound small but I am trying to actively address the “fixable” phobias to cut down my anxiety by even marginal degrees in the long term.
Figure 3: I never wanted to be found when I got a good spot. I also exhibited hand posturing from a young age which I will address in another post.
Another example was ‘hiding’ under the piano of my grandmere’s house or when I was a teen hiding inside of this dark, cramped cabinet in art class to do work where I was missing until the teacher found me. If I was reading, my mom would ask how I can see in the dark but in truth I didn’t even notice I wasn’t using a light. This was as recent as my job in the warehouse, not turning on the overhead lighting at first by accident. Everything was bright enough until my co workers came by and asked me how I could work in the dark. I surprised myself. I thought the lights were on. It is little things like this where my experience only made sense when contrasted against the outside world, perceived by others.
Being diagnosed late is a constant re-frame of everything you took to be something else. It makes no practical sense that I never bought new lightbulbs when my apartment light burned out 9 years ago. Or how in middle and high school I had filtered, non-prescription glasses-yellow, orange and pink tints- because I like how it rested my eyes. Yes, that’s what I personally thought when I put them on. Did I share that with anyone? No. Why would I? I was just the weirdo who dressed up like a freak.
Figure 4: A visual slay that I took torrid, unrepeatable verbal abuse over daily, yet I’m the one with mental illness [OCD, Depression]. Interesting.
I would never consciously think “Oh, I hate lights”. I said enough times that “the sun hurt” and always sought shade. No one took it as anything. Like, to me, being able to postulate my pain and aggravation is on such a ludicrous level of self-awareness that someone has to teach you. This weaves easily into my next point of consciously, but unknowingly, seeking pressure.
Requiring Compression
Near the last year of my 7 year university degree that was supposed to be 4, I was drifting around the school’s site on subjects I should have taken instead because I was miserable and unfulfilled.
Outside of “fine art” were so many interesting topics that were never presented to me and-especially in hindsight-could have been much better suited for my brain like Industrial Design.
One particular design by a student was currently being lauded. Lisa Fraser and Lucia Hsieh created a prototype of the Snug Vest. This jacket was designed to put pressure on the body without weight. Considered a medical device for children, its aim was to help those in need of Deep Pressure Therapy on an everyday basis.
Scrolling, I scoffed:
Looking back I have no idea how the wires in my brain didn’t cross to make a connection. Ok, maybe a huge leap from liking compression to Autism (as DPT is not just about developmental disabilities) but, nothing? No lightbulb? No extended curiosity about why I may have intrinsically thought that way or just knew I would like that? In so many aspects of life, I am missing that connector chip. I’ve likened it to trying to plug in a cord to an outlet that is half an inch short. It just doesn’t reach.
How I knew I liked pressure was semi-conscious in the sense I did seek it out but it would never occur to me to verbalize that need. Like pressing the top of my head, squeezing my hand between the wall and the mattress as I fell asleep; pushing on my teeth; liking to play with my Dad when he would squeeze me between his back and the sofa cushions. Biting or clamping down on my thumb, lips or hands, trying my best to swim as deep as possible in pools not on dares or being the best, but that crush of the water was actually really relaxing. Not being able to breath down there was always a disappointing reality.
There’s also a related topic and that is to do with knowing how to use pressure, which has to do with Proprioception. The death grip I have had on pens/pencils ever since I can remember is so steep I achieve indentations on paper 4 sheets below. My hand cramps constantly. I have really tried to teach myself out of this because it actually can hurt, stiffen, cramp and exhaust my hand and wrist. Before I knew any of this I would notice, dropping my pen to chastise myself:
Jesus Christ will you fucking r e l a x ?!
I’ve hated myself so deeply for so long, it is very hard to recover from that.
Ease of Communication
When I was a blue belt, I was an assistant coach for several kids classes. People above me quickly noticed my level of patience for nearly everything and would delegate me to the criers, the overwhelmed or ones needing more time to process technique. It is here where I met several kids who I saw were getting lost in the chaotic sea of teammates, compliant based instruction and unhelpful behaviour expectations.
My immediate sense was to work with them, not against. The more you push—wether getting into the Gi, on the mat or forcing interpersonal interaction—the more intense the reaction. I don’t like being told what to do, why would they? Obviously, I thought, they need to acclimatize to the environment. How do people not get this? You just don’t do something automatically…it takes time.
With several non-verbal kids, it didn’t make sense to me to treat them in an exclusionary way during class. They communicated-it was everyone outside of them that didn’t want to listen the way they need to be heard, through gesture, movement, sound. It made sense to me to follow their lead. It was only practical.
My boss at the time commended me for my patience, noting with a kind of bewilderment at how I communicated with kids without verbal language. It didn’t seem like a big deal to me. I also didn’t know how peoples levels of patience was so incredibly short. When one kid kept laying on the floor dazing at the ceiling, I laid beside them, keeping company, momentarily happy someone else appreciated the floor like I always have.
Despite people from the outside being able to tell I coalesced with teaching kids in different learning styles, it never occurred to me I knew how to do it because I had to create these templates for myself. I understood why they rocked—sometimes when I can’t sleep I pretend I’m on a train, swaying back and forth. It’s really soothing. Its not a mystery or odd behaviour to me.
I’m capping the post here. I have many more examples that continue to delineate this bizarre experience of being missed which I will further address. I can’t take time back and wishing someone knew something years ago doesn’t do anything. And actually in an ironic way, how I didn’t see the big picture is actually quite autistic.