For my entire life, I have found it very difficult just to exist.
In childhood photographs, tellingly, I’m almost always looking off camera. My little hands clenched, I’m rarely with other people and often engrossed in one of the few activities that made me feel safe. I’m also, in some, clearly distressed: A photo of me on the beach, eyes full of tears as I pull off my swimsuit, stands out. The textures of the suit, salt and sand on my skin made me feel like I was burning, but I stubbornly insisted on swimming in the sea anyway.
As an adult, the sights, sounds and smells of everyday existence still overwhelm me. I struggle with everything — from waking up to moving my body around to talking clearly — and I quickly get exhausted in other people’s company. I suffer from meltdowns where, until fairly recently, I would intentionally hurt myself. I had expected to grow out of being fussy or obsessive or angry, but I never did. My difficulties became a larger, less forgivable obstacle as I “grew up.”
In July this year, I finally understood why. At the age of 27, I was diagnosed with autism spectrum disorder and attention deficit hyperactivity disorder. I chased the diagnosis for five years and had to fight hard for it. It was, at times, dehumanizing and brutal: full of waiting lists, administrative errors, insensitive doctors and humiliating questionnaires that forced my entire life into a new, awkward perspective. But I also saw the things that I like about myself: my obsessive interests, my memory, my capacity for feeling. It forced me to realize, finally, that being autistic is completely inseparable from who I am.
Such a late diagnosis might seem unusual, but it isn’t actually that rare — especially for women. For a long time, it was dangerously assumed that we couldn’t even be autistic. Research now shows that autism in women is diagnosed both later than in men and much less often. That doesn’t mean fewer of us are autistic. It just means we’re overlooked.
In part that’s because the diagnostic criteria for autism spectrum disorder are biased toward how male children typically present. But primarily it’s because we learn to mimic others. By “masking” or “camouflaging,” we copy those around us, often losing who we are in the process. Rarely fully successful and psychologically taxing, it means autistic girls are read as neurotypical, if a little “off.” We occupy an awkward Catch-22: Our differences are alienating, so we hide them. But when we pursue diagnosis, we’re dismissed if we’ve been too successful at social camouflage.
At school I was often disruptive, fussy and poorly behaved. While I excelled at reading and writing, I got bored quickly. I was prone to walking off or misbehaving, and was often punished. My mental health spiraled, and I spent my adolescence acting out, losing friends and hurting myself in various ways.
Slowly but surely, I learned to hide who I was and make excuses for what I couldn’t conceal. As a teenager, my special interests — Lemony Snicket’s “A Series of Unfortunate Events,” emo bands, movies — were perceived as fandom; teachers saw my poor organization and social skills as rebellion and laziness. And as an adult, when I worked in bars the environment was so chaotic that nobody observed me too closely, and I was good enough at making cocktails that I got away with arguing with customers. The ability to hyper-fixate on my obsessions helped me get through school, university and postgraduate study.
Then I got a job in an office, and I quickly learned that my brain simply does not adhere to regular schedules or working patterns. Everything made it impossible to work: waking up early, the freezing temperature in the office, the noise, other people eating. I fell apart and stopped functioning. I went weeks without doing anything, feeling so overwhelmed that I wanted to crawl out of my skin.
The agony I felt sitting still for eight hours a day, pretending to feel comfortable engaging in small talk or putting forward ideas in meetings, was a physical pain. It often wore me out so much that I went to bed as soon as I got home. I had never before cared much that I was different — but for the first time, I saw the ease with which other people existed.
One day, after a particularly agonizing morning, I called my mom and asked her if she thought I was autistic. Her answer was an unequivocal yes. I went to the doctor — and was told I was probably autistic, but that the waiting list was so many years long that there was no point trying. (In Britain, where I live, unless you can afford to pursue a diagnosis privately, you have to wait until the National Health Service, which is overstretched and underfunded, can find time for you.) I got fired instead.
Two years later, I accepted another office job. I found myself again overwhelmed and failing to work within the structures everyone else seemed to thrive under. So again I pursued a diagnosis, hoping for help. I was told that unless I was a danger to myself, the support was not there. It was ironic: I had been a prolific self-harmer when I was younger, but because I had overcome those impulses, I couldn’t get the support I needed.
When lockdown hit, I found myself taking to loneliness with an ease I half-anticipated: no more public transport, stores or awkward socializing. But I knew how hard it would be to come out the other side, and I wanted to be able to explain why. I had spoken to a psychiatrist about a private diagnosis before; now in a slightly better position, I committed to the expense of a diagnosis. She and a colleague spent several hours assessing me over three days. The result was clear.
I expected to be ambivalent, but I wasn’t: I was euphoric. I told everyone. I was the same person I was the day before, the same person I’d always been, but with the terminology to explain myself and to find a community. After pursuing it for five years, the diagnosis gave me certainty, solidity and the strength to articulate my needs to others. I looked back on the past anew, seeing my own behavior through a softer lens and pinpointing where others could have been kinder. I wished only that I hadn’t lost so much of my life hating myself.
People often emphasize how difficult life is for autistic people. And that’s true: From the moment I wake up (late), every task I do — making phone calls, taking public transport, eating and socializing — feels more and more difficult. It’s like a video game with no end goal but to stay alive.
But the experiences I’ve found most traumatic were avoidable. Throughout my life, I have been bullied and cast out by people who became frustrated when I didn’t communicate in ways they expected. My face doesn’t move much and my pitch rarely changes, sure, but I am deeply passionate. It is baffling and deeply hurtful when I am called cold, rejected for expressing myself differently.
When I was growing up, I was as unkind to myself as other people often were to me: I called myself evil, cold, weird. I internalized the worst things anyone could say because I believed them. Looking back at that child now, and that disruptive teenager, I just want her to know that she is loved. I see her staring so intently at her books or her train set or her Game Boy and I wish I could tell her that she’s autistic — and that it isn’t only OK, but good.
Marianne Eloise (@marianne_eloise) is a freelance writer whose work has appeared in Vice, The Guardian and other outlets.
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