Autism discovery

For a video art project in my first semester of undergrad, my class was divided into groups and told to make candid footage. We - myself, and three other freshies - trekked to the campus dining hall with heavy cameras and tripods. We claimed a table, set up the equipment, sat down, and talked. I can't remember what we discussed; probably how bad the food was, whatever clubs we were thinking of joining, or anything else on a bright-eyed freshman's mind after the excitement of the first week wore off.

What I do remember was looking at the footage afterward. I was in my best blouse, skirt, and makeup. I was gregariously waving my hands, smiling, and laughing. I was surrounded by smiling people, too. I looked normal - so natural and energetic and ordinary that I teared up.

Before then, I had always felt vaguely abnormal. In casual conversations with no clear structure, and especially in group conversations, I felt lost. Detached from my own voice and body. I'd try to smile at the right times, laugh when I recognized a joke, and nod my head to show I was paying attention. But it was like I was watching the social interaction on a distant TV while I was trapped inside my own head with no way to change the channel. (This was before I knew what autism was, or suspected I may be autistic.)

What made me excited was the idea that I could be - and feel - normal. When people told me in middle school that I was melodramatic, and not as different, unique, and troubled as I felt I was, maybe they were right. I internalized a strong desire to strive for normalcy, affability, likeability. Not because it would be an advantage in life. Just because normal equalled good.

The five years between then and my "autism discovery", as I called it, and my later diagnosis weren't irrelevant; but they were more of the same - desperately trying to do normal things at the normal times. It felt like I was trying to find the beat of a song I couldn't hear. I kept adjusting, arbitrarily, my social actions and affect as positive and negative feedback came in. Social successes, as I interpreted them, reinforced the good feelings that pretending to be "normal" gave me. I even took pride in my good social rhythm. Through trial and error, I had become a "conversationalist".

At the same time, I noticed concerning patterns. People would leave my life quickly, quietly, with no good explanation. Many interactions I classified as "good" didn't lead to becoming friends, or even acquaintances. I noticed I was being ostracised again, just like in grade school, when I was sharply aware that something set me apart in a bad way. But I was no closer to knowing what that was. And unlike in grade school, my peers were far less willing to explain to me what, if anything, I was doing wrong.

The transition from school to work was especially hard. My breakdowns, already frequent, started occurring daily. I tried medication, which helped with the mood swings, but didn't help me navigate workplace social culture. I started hurting myself again - a habit I thought I had kicked in middle school - and my behaviour was so reckless, and mood swings uncontrollable, that I didn't feel safe driving, since several times I had let go of the wheel.

My therapist mentioned Asperger's (the name for high-functioning autism that is no longer in clinical use). I remembered my partner's roommate asking if I had looked into autism. I had a tentative lead.

Then I started reading.

First, it was Fern Brady's memoir Strong Female Character. Reading it felt like nothing I had felt before. I had found it. Not normalcy, of course. But a reason for why I have never, and would never, feel normal. Autism. The word reverberated in me, and I was a little afraid. It's a permanent state of being - a real disability. One that makes life incredibly difficult. One that could explain why people kept looking at me, confused, or telling me I'm not a good person, or simply leaving. It may mean that I'd need support beyond what I thought I'd need for the rest of my life. But I was still happy to have found it, because the power of the word "autistic" to me was that it justified my very existence.

14 July 2023. Messages to my partner. Transcript:
"I finished the autism book
I don't think I've had a theory of life that makes this much sense
Like, multiple times per chapter I hit a sentence that sent me into a tailspin
and subsequently multiple examples, like I do that! or I did that as a kid; or I wonder the same thing
I'm so excited (?) I can't breathe
Also like immediately I don't feel suicidal
well, I know not to trust that
But it's so amazing that things make sense, and that there are some people willing to understand and help"

I kept reading. Next came The Unwritten Rules of Social Relationships by Dr. Temple Grandin, a well-known advocate for both autistic people and animal rights; and Sean Barron. This was the textbook on social rules that I desperately needed when I first started struggling in childhood. It laid out for me what I was missing, what I had wrongly assumed, and even what I had somehow gotten right, just by guessing based on people's reactions to what I'd say and do.

I kept reading. More about social rules. More about how autistic people were treated in the past (alarmingly poorly). And more about masking. Autistic masking, loosely defined, is the ways that autistic people pretend not to be autistic for our safety and social success. I'm not elaborating more on masking yet, because I don't even know what it is - I just know that I'm not as good at maintaining a mask as I thought I was.

Now comes the question that plagues everyone in their twenties, but especially masking autistic people: who am I? Am I the person I feel I am? If I were to write down the essence of who I think I am, is that me?

Or am I the mask? Am I the person I'm presenting to the world? Does anything about us matter except how we are observed?

Who was that girl in the video project, then? The one in the nice clothes, with the pleasant smile, surrounded by happy peers. The person who looks non-autistic. The person I can hardly identify with.

As of writing this (28 June 2024), I'm in the process of retreating from everyone but the people I hold very close - the friends and family who do something beyond tolerating me. I'm actively trying to be more autistic, too, to see how I settle into this aspect of my identity. I already feel far more relaxed and comfortable than I was when I was obsessed with simultaneously being all the ways I could be "normal". Of course it was impossible. I'm not normal.

I'm autistic. And I'm myself.

AWARENESS, ACCEPTANCE, ADVOCACY

AUTISTIC RIGHTS ARE HUMAN RIGHTS

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Do not use content without my consent. Support new and local artists! Last updated 28 June 2024