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. 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. 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, dehumanising 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 realise, finally, that being autistic is completely inseparable from who I am.
A late diagnosis
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.
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 spiralled, and I spent my adolescence acting out, losing friends and hurting myself in various ways.
Slowly but surely, I learnt 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 Eventsemo bands, movies — were perceived as fandom; teachers saw my poor organisation 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 learnt 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 pain and agony
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 agonising 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. I got fired instead.
When lockdown hit, I found myself taking to loneliness with an ease I half-anticipated: no more public transport, stores or awkward socialising. 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.
Looking back at life
I looked back on the past anew, seeing my own behaviour 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 emphasise how difficult life is for autistic people. And that’s true 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 internalised 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 is a journalist and writer covering music, TV, film, culture
The New York Times
