I function, until I don't
Late diagnosis, autism and the body.
I am lying on the floor, pressing the heels of my hands into my eyes. I can’t think straight. My brain feels slow. Forming a thought is like trying to wrangle a cat through a letterbox. That’s a stupid metaphor, but it’s the best my syrupy brain can manage. My thoughts feel like they’re melting before I can really grab them. Everything is buzzing. I feel like I’ve just woken up from an anaesthetic, but I’ve been awake for hours.
Earlier, I threw up twice. And then I sought the floor.
I drop my hands from my eyes when I feel the presence of someone nearby. Their energy cuts through the buzzing in my skull. My husband drops a weighted blanket over me. He asks me if I’m okay. And I want to cry, but I can’t because my emotions feel cut off from my body. They’re there, but they feel abstract, like they belong to someone else.
All I can do is lie there, impotent, my eyes dazzled from the daylight which feels too bright, my body pulsing with the need to be crushed—so my soul can be pressed back into place.
It’s been over a year since I received a diagnosis of autism in my thirties. And I’m still figuring it out.
All my life I’d have these little ‘illnesses’ for lack of a better term. They’d come on suddenly. My insides would feel seasick. Lights and sounds would get all muddled up inside me and, panicked, I’d drop to the floor—some primordial instinct to seek the earth, I guess. To remember that the ground is there, always steady beneath me when my bones and blood are shaking.
The thing that continues to take me by surprise, is how fucking physical my autism is. My sensory issues manifest via the medium of my body. Which makes sense, because the body is propelled, really, by the senses, but I’m always shocked by the impact overstimulation and overwhelm has on me.
I throw up. I get dizzy and disorientated. My hands shake.
This is the side of my autism that no one really sees. The side that I spent years explaining away as ‘health issues’ or my body just generally being ‘a bit shit.’
I function, until I don’t.
I spent the better part of my adult life whizzing around newsrooms and boardrooms, getting ahead of stories and reputations, but the exhaustion would show up elsewhere—health issues, emotions that were hard to control, days spent in bed. The endless hum of anxiety that I used to power myself through long days until I couldn’t do it anymore. The mask that was confident, outgoing, creative and competent until it lead me to crying in my GP’s surgery, wondering if I was going crazy, and several years of therapy after that.
There’s so much rhetoric in the news these days about autism suddenly being a trend, like getting a diagnosis is free and easy. (Where I live, it’s neither of these things. It’s eye-wateringly expensive, a hugely difficult process of exhuming the most painful moments of your past to a random stranger and awaiting their judgement, and it’s a process that really isn’t accessible to a lot of people). And yet, we have idiot politicians suggesting that autism (and ADHD) are just trends.
God, I hate that word—trend—the implication being that neurodiversity is a ‘cool’ or ‘fun’ experience, completely disregarding the actual lived struggle of it. Yes, neurodiversity has its upsides (my ability to hyperfocus has saved my arse in work so many times) but it also comes with so many difficulties it sort of negates the upsides (in my own opinion).
A year post-diagnosis, I’ve also come to realise just how internalised my autism is. I was (and still am, mostly) so high masking that my autism is embedded in my bones at this point. I liken it to a feral fox. I spent so many years shoving it down, forcing it into submission that now, as I give it more space to breathe and see daylight, it freaks out and doesn’t know what to do with itself. It becomes this wild thing. And unmasking is… difficult. And not always safe.
I unmask around my husband and he smiles and delights in seeing this new side of me. I unmask around other people and they give me side eye. I get some leeway I guess. I’ve been a writer for my entire adult life, so the “eccentric” tag has always followed me. But the more my autistic self breathes, the more remarks I get—not always educated, welcome or kind.
Lately, I’ve been thinking about what I would say to my undiagnosed younger self.
I’d tell the child who used to spend hours lost inside her own head that yes, it can be lonely, but that her imagination will fuel her life’s work. And that the cosmic joke is hiding who you are doesn’t buy you real friends. The ones with you for life? They’re the ones who celebrate in your you-ness. They don’t—and never will—want the mask.
I’d tell the anxious teenager that music will always speak to her. It will be a lifeline and a joy.
I’d tell the twenty-something that she’s not actually broken. Or tragic. Or as unlovable as she thinks she is. I’d tell her that her huge heart and empathy are so important and never something she could be ashamed of. I’d also tell her that drinking to the point of passing out to feel “normal” is just a poetic way of describing binge drinking that borders on alcoholism (let’s be honest).
And I’d tell me from five years ago, that the persona you create in order to get the job done has never been who you are. You are not the corporate, cutthroat powerhouse who needs adrenaline to survive. You are softer than that. You are the gentleness that surfaces when an animal takes an interest in you. You are the joyful laugh and the movements that you spent years suppressing because you were always punished for them growing up. You are the clear sky that exists behind all the cloud.
And you are not just a trend.
You’re a person.