On Misunderstanding Autism

Its a beast that a limited group makes the effort to fully know

“Sometimes people reenact the traumatic moment with a fantasy of changing the outcome…they speculate that the repetitive reliving of the traumatic experience must represent a spontaneous, unsuccessful attempt at healing…the trauma is resolved only when the survivor develops a new mental “schema” for understanding what happened.”

-Trauma and Recovery, Judith Herman M.D

I cant help but look back at all the people I crumbled with. They were the ones who knew me best. The ones I spent the most time with. The ones who went out of their way to have me in their life. Those are the ones who always go and I have a theory as to why.

Because they get to know me-really-which eventually becomes too much.

Nearly 40, it is not worth it to me to procure those types of relationships anymore. I can’t take the pressure, the misunderstanding, the inevitable tagline:

“We don’t communicate”

Telling people I’m Autistic is not going to matter. As much as I know it changed my own perception, no one outside my door has an even shallow understanding of Autism, let alone its complexities and far-reaching effects woven into the fabric of my life.

It is easier to tell ghosts of people I once knew, strangers, and acquaintances that I have Autism. When I ran into a past friend last year I told them what happened to me since we had a falling out during the height of my first (of a series…) mental health crises, thinking—naively—that they would understand what happened and care. Then they spoke:

“I’m not sure of labels, but lots of friends I know deal with mental illness”

I physically write out arguments and hypothetical conversations on the off chance they happen. I rehearse them to the letter, pacing in my room. But time and again I never account for the variable of the other human. They never say their lines.

I would rather of them bike away, spit at me, double leg me, yell at me—some other spiteful, aggressive act that I could feel being vulnerable was worth it rather than this tepid, uneducated, disappointing response.

Autism is not mental illness

My Definition:

Autism is a neurodevelopmental disability present since infant/childhood. It is marked by social deficits that infringe on quality of life that presents significant impairments in relationships, occupation and activities of daily living. In addition, there are repetitive and restrictive behaviours that interfere with daily living and quality of life. The forms these take are tremendous in variety and can vary in presentation due to many factors including culture and environment. Many people present compensating strategies such as camouflage (masking) but in the end it will always surface and any clinician worth their salt will be able to parse it out over the course of assessment.

Mental Illness itself is different, although both can be present—I have both. Trying to wade through not only an MI definition but having it live contextually against Autism is an undertaking and honestly, I don’t want to do it for others, especially on the spot. It is not simple but the distinction is clear through a 5 minute Google search.

So if you don’t know the difference, just shut your mouth.

An Official Definition: The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.¹ 

The Privilege of Being Selective

Im only starting now, at 39 (with help), to understand me and my Autism. Truly, anyone outside of expertise I respect has nothing to add to my life regarding my processing of my Diagnosis. I find myself burdened to explain things I have never been able to verbalize in my life. I cant even recognize it in myself without professional help.

I have tested the waters with some people and unfortunately preconceived notions and ableism is just embedded within the topic at a cursory glance. One person I didn’t know too well when we were in a casual chat, told me in a hushed whisper that they worked with

*kids w i t h A u t i s m*

It took all my strength not to counter with something logical like, why are you whispering Autism? But I know why and to feign like I am confused is disingenuous. But I’m not serving my medical diagnosis up on a platter to tell them Autism isn’t a shameful word. There’s ripple effects to this on many counts. I am still living in fear this will end up costing me my job. And until it's really on the line, I have no interest in divulging this to people who control my money because in this scenario I have no protection and with my traumatic work history, I just have to be prepared and in a state of vigilance and constant self-preservation.

A (current) friend of mine who I did confide in (during a meltdown) told me that the people who love me will be accepting; their ideas of me won’t change about who I am. Although I appreciated their attempts to soothe, I simply do not have that kind of faith in love. Because I have seen and felt it disappear based on much less. I find it a naive way to think about the deep undercurrents of peoples judgments. Love, in fact, does not conquer all.

I have learned to protect myself. Not every thing that comes across my path is someone else’s teachable moment. I used to hold very altruistic, strong ideals on this when I was younger. I used to want to be a tool for change, to help, to guide in the way I thought best. Now I don’t give a fuck. If people want to change then they can damn well do so on their own accord. I just try not to ruminate afterward on wether they do or not.

Labels are not bad

This asinine thinking that all labels are bad and restricting is so devoid of complexity and nuance I don’t know why people cling to the concept. It’s like they can’t separate labels used in bad faith versus how they can liberate. Probably because whatever it is makes them uncomfortable.

For decades of my life, everyone else was very fucking comfortable plastering ARTIST over me to explain everything about me while I was drowning. And I’ll tell you something.

“Artist” was the label that destroyed my life, keeping me in this false cycle believing what other people told me and not listening to the depth of my deep knowing that something was not right as I struggled and suffered intensely everyday, especially through phases where I chose not to drink. Artist was the label that held me in contempt for my ‘forgetfulness’, ‘intensity’, ‘selfishness’, ‘argumentative nature’, ‘immaturity’, ‘obsessive nature’. Artist was the thing that put me on the shelf, attributing every minor success or massive mistake to being this concept; over time I was made to feel like I was constantly observed and not engaged with; admired but not touched. On one level, I resent it deeply.

And overall, I just cannot bear having these conversations with people who may even argue my lived reality. An Artist yeah of course, but Autistic? No, I don’t think so.

It’s so fucking insulting.

The End of It

At one time, I was very sad about this friendship ending. So after I told them my diagnosis, I apologized for our falling out. They said it wasn’t necessary.

I spent a few hours mulling over what that phrase meant. Why didn’t you just accept my apology? I had to Google it. Apparently it means the apology isn’t needed-in other words, you I did nothing wrong.

For so many years I really believed my persistent Googling of what people said to me was about over thinking and complicating a clear interaction that I never understood. This time it was like I could see outside of myself: I literally didn’t know what they meant by that.

Have all these instances of “over analyzing ” just been me not being able to put social cues, turns of phrase together? I have so much more compassion for the nights I drained myself with stress, pacing, crying trying to figure out my social relationships. Uncomfortable with labels? How about the use of “overthinking” in place of autistic perseverance? Two, wholly, different things with distinct origins. The inner critic, the ableist in me lashing out to myself sometimes physically, for not being able to stop “overthinking” like everyone tells me to is now silenced by the label of Autism. It’s a place I bathe in because, I guess for me, that is something I can more readily accept because I know it deeply. It fits.

But that’s not why I apologized.

I was sorry I couldn’t have done better, been less intense, or mad at all. I was sorry we talked too much for my boundaries. I was sorry I never understood my feelings. I was sorry they lent me their jacket when the wind picked up. I was sorry that I let myself get close to someone only to realize the threshold of “close” to me is VASTLY different than other people, since I never let anyone in. I’m sorry I didn’t know sending memes didn’t mean someone liked you. I’m sorry they were thinking of me so early in the morning and texted me so. I’m sorry they ever went so far as to call me a friend when I was just a person they worked with. I felt toyed with and I couldn’t take it anymore.

I’ve lived without support my entire life. I never learned how to share my inner thoughts or talk about feelings because they just presented as anxiety and any inquiry—even something like “how are you doing?”—into me seemed like an invasion. Some people, I learned, just blab to anyone and everyone and I’m not special for being on the receiving end of it. Which I really thought I was.

I always loved the idea of the multiverse, where a thousand possibilities are playing out as we live. One of my favourite Star Treks is on this theme and it just enchanted me to think there are hundreds of me’s living out all the ways things could be going.

Once when a friend was really distressed, I gave them advice based on this multiverse idea. One that provides me comfort in situations I cant understand or come to grips with:

What if this timeline is the best possible outcome?

The only way I can possibly extend relative gratitude for the garbage of reality is warping it to its max. In this way, I feel both distant from it but also totally accept it? And if I run all the alternate realities with this taciturn ex-friend that I could dream up and follow it through to the very ends of my imagination—would I really prefer any of those to this? Actually?

I struggle deeply with control which shows up in my suffering personally and as an external cog in my relational duties at work, in friendships, family. This imagining of the multiverse is really the only way I can work in abstract thinking to free myself from the burden of control and the pressure of the need for sameness and consistency, of which life offers little of to comfort me.

It is just so wild that a person who once made me cry from laughing, spitting our drinks all over the place, buying me dinner, waking me with a joke, never really knew me. Seems the strongest of strangers are those that used to know one another. And I’m aware—I’m trying to control the sadness of yet another broken friendship through fabricating these parallel worlds that are far worse, where this dissolution is the best result I could have hoped for after all…

but I think Judith Herman has good rationale for that.

1. https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences