I’ve been debating writing this article for about 8 months. Not even my own dad knows this about me. But I’ve decided it is helpful for me to write about it, and may also be helpful for others.
“All you have to do is look at each face and determine if the facial expression is surprised, angry, or frightened.” The corduroy-clad grad student, a few years younger than me at the time, closed the door to the tiny psyc department office behind him, and left me alone with the computer.
It seemed simple enough. I clicked start. The first face appeared before me – a black and white disc – hair and shoulders cropped away. Hmmmm. The eyes were wide and the face looked somewhat horrified. “Frightened,” I clicked. Another disc-face appeared, with garishly bared teeth. I pondered. Maybe this wasn’t so simple? “Angry,” I guessed. More faces popped up, all seemingly frightened or angry. Guess after guess: nothing was clear. Towards the end, I decided to randomly throw in a few “surprised” because obviously there had to be some surprised faces. How strange.
The grad student reappeared with a bespectacled assistant.
“So, let’s debrief the experiment. What did you think?”
I explained it was more difficult than I had expected.
“How many faces looked surprised?” he queried.
“Honestly? None of them,” I answered, somewhat confidently. Perhaps this was the trick – none of them were! The grad student exchanged a nervous glance with his assistant.
“Every face was surprised. This study is targeted at understanding facial expression comprehension in young autistic people. Ummm... Have you ever been assessed for autism spectrum disorder?”
“No, no, of course not.” It didn’t really make sense. I was 31 and back at university studying psychology (and special interest philosophy) to become a therapist, simply participating in an experiment for extra credit. I had worked in education during my twenties and I certainly didn’t resemble any autistic students I had worked with: typically boys who, on the surface at least, seemed emotionally flat. Many were very gifted, with traits I didn’t exactly associate with myself.
There was no follow-up. I forgot about it for a while. Meanwhile, the pit of despair and loneliness that had haunted me since I was a little girl ached in my chest and stomach. It was always there. I had tremendous mood swings, mostly throttling towards blackness. I had tried different therapists: “you have anxiety, you have depression, you have some traits of BPD but we don’t want to diagnose you with that because it is so badly stigmatized and it just... isn’t actually the right fit for a diagnosis.” I had tried CBT, DBT, distraction, and medications that made my weight swell to over 200 pounds. Family, friends, and strangers alike would accuse me of being “attention seeking” or “faking” or being “lazy” or “too weird” and to “grow up.”
The odd person would casually bring up autism to me: a hairdresser I had known for years often ‘joked’ I had Aspberger’s, and a metalhead bodybuilder guy I used to chat with said he fancied me because he liked “aspien women.” I never thought too seriously about these comments. It wasn’t, however, until I complained on Twitter about noisy upstairs neighbours, that someone pointed out in a non-joking way, that autism might be something to look into.
“The noise is like pain, like knives stabbing me. I feel it through my whole body.”
“Have you ever looked into autism?”
“I don’t think I have that,” I replied, imagining the boys I taught, or Sheldon Cooper (Big Bang Theory) types.
“It presents differently often in women.”
I looked it up.
And so it began.
About 7 or 8 years had passed since the university study. A lot of new information had emerged, particularly about higher-functioning autism in women and people of colour, or those who received late diagnosis. The noise sensitivity was only one trait in a mountain of characteristics. My mood swings were likely due to autistic meltdowns, my alien-like isolation deriving from a learned fear of people, who I had always misunderstood. Most jobs or education I had struggled with not because of the tasks or lack of ability, but because of social awkwardness, avoidance, or fear. I did not know how to behave and I did not understand the complexities of social cues and codes. People often thought I was ditzy, so I would play that up: easy as a tall, busty blonde, but inside my thoughts remained abstract, painful, stormy. At least ditzy was more ‘normal.’ I could only express myself properly through writing blogs or articles, and for me that became one of my only ways to connect with people. So, I would write and use Twitter as a kind of personal diary.
I learned that only online was I truly able to “unmask.” Masking is where an autistic person tries to hide traits to appear more neurotypical and “fit in.” It was mostly learned behaviour for me: as a child I realized being myself was not wise and led to me being disliked. I was told to “act normal” yet when I did, I was accused of copying others. Human interaction was like a puzzle, or a game for which I had never learned the rules. So, out of exhaustion, I often gave up trying: people were far too confusing and I was terrified of them and of myself, a common experience for autists. “Nearly all of them... were depressed, haunted by a profound sense of emptiness. Their entire lives had been shaped by mistrust in themselves, hatred of their bodies, and fear of their desires” (Price, 6).
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| Human interactions and skills such as facial expression recognition can be challenging for autistic people. |
In elementary school, I was sent for ‘testing’ in dungeonesque basement offices where I completed puzzles and other tasks to perplexed and frustrated counsellors: I wasn’t a candidate for the special ed class, yet I certainly didn’t fit in with the ‘normies.’ I underwent speech therapy, and nearly failed kindergarten because I couldn’t tie my shoelaces (difficulties I now realize were probably related to dyspraxia). In fact, I scream-cried every time I put my substitute velcro shoes on because the ripping sound violently tore into my over-sensitive ears. Clothing textures and certain foods touching could be perilous. I talked to myself, had odd mannerisms, was clumsy, and terribly inept spatially. I ripped all the fur out of my favourite teddy bear to stim. Everything felt difficult.
As I aged, I learned masking was one way to be semi-accepted. Luckily for me, in some ways this wasn’t difficult: some of my special interests were considered “girly”: fashion and makeup. Historically, “girly” and autistic weren’t associated. I tried to paste a smile on my face and style my hair and makeup and incorporated the ditz-act which was in itself draining. I felt entirely exhausted by spending barely a couple hours with most people. And I knew people didn’t really like me. And possibly less so if I was myself. I never figured out how to converse normally: people, especially in the suburbs, would talk about mortgages and kids and things I couldn’t relate to. I felt like life was presented as just a checklist of boxes to be filled, mostly boxes I had no interest in. People occasionally mistook me for having a superiority complex, but I was terrified and actually felt inferior. “Around people, I felt I had to censor every natural reaction, and pretend to have interests and feelings that were normal... People were so overwhelming... loud and erratic, their eyes like painful laser beams boring into me” (Price, 2). So, I avoided, which was far less tiring than masking.
When I couldn’t avoid, I lived in a shell. I felt like life was happening to me and there was no way to reach through the shell, and in turn, that no one could really reach me. I could not interpret others’ intentions, social nuances, or body language, and interactions, sometimes even simple, direct ones, haunted me with endless confusion and stress. Often, I could not even interpret my own feelings or place in the world, or act. I spent a lot of time hiding in my own head. I have been writing in past tense but most of what I’m saying in this piece still applies... it’s just that now I can put it somewhat into words. Nothing is intuitive for me: from socializing to opening packaging. The world just isn’t built for neurodivergents. I haven’t exactly enjoyed my life, which I know is something you aren’t really supposed to say: bluntness is another uncomfortable autistic trait.
What is the point of all this? For me, the more I have learned about autism, the more I have been able to find explanations for much of my past, as well as how I interact with the world in the present. For example, realizing I have prosopagnosia (face blindness) and a big deficit in interpreting social interactions has led to me trying to help myself by better learning how to understand body language: something that ideally should be innate or at least acquired naturally, and is vital in interpersonal communication. The strange thing is, I never knew I had this deficit, and I simply felt lost, achingly alone, and quite frankly, a bit stupid. Now I may still feel that way, but at least I have some idea why. And with some of my behaviour, especially meltdowns, I have an explanation. I like thinking of it as an explanation, but not an excuse; I can try to work with explanations.
Discovering as an adult that you have been living with an invisible disability for your entire life is undoubtedly a bizarre experience, and I’m sure others who have come to this conclusion either through self or professional diagnosis will agree that one goes through a number of “aha moments” upon such a realization: some troubling, some comforting. Suddenly, a lot of things make sense that never did. I know not everyone seeks out or wants diagnoses or labels, but for me, I can at least now partially understand this alien-feeling burrowed within me, and can also try to learn how to make things more comfortable for myself, or possibly see things, at least upon reflection, with more clarity. I also realize why at times I am far moodier, clumsier, pickier, or more sensitive: with stress, symptoms, or as I’d prefer to call them: traits, can become more intense. I can’t say it’s easy, but it gives me a greater sense of self-awareness.
For anyone interested, for themselves or anyone they know, one of the most useful books I have read is Unmasking Autism (2022) by Devon Price, which focuses a lot on unmasking and authenticity, especially for autists who are women, people of colour, non-binary, or from working or class or impoverished backgrounds.
There are also some fabulous Instagram accounts (I will try to add to this list):
Toren Wolf and Serenity Christine: https://www.instagram.com/toren.wolf/
Neurodivergent Lou: https://www.instagram.com/neurodivergent_lou/?hl=en
I relate to a lot of what you've written about here. I didn't know there's a word for the face blindness thing and just last week l was at a party and had to walk slowly around the block to avoid the inability to deal with so many people.
ReplyDeleteSo, l get it. It's hard. You can kind of function, bit it's a struggle. I've had lots of pills for the anxiety and depression that help and lots of therapy too. But you can't run from yourself, even those moments when you want to be Michael's Bones.
Take care and know that you are not alone. Reach out if you need.