This is a long multi-part essay on the experience of being autistic, the process of gaining the label, and the nightmare (especially the last two years, especially especially the last nine months) it’s been being an undiagnosed autistic person being treated for depression, anxiety and chronic pain in the Australian healthcare system.
So, of course, I’m going to start with my ongoing love affair with metal music.
I saw/heard the video clip for Nightwish’s Nemo on an episode of ABC’s Spicks and Specs ten years ago, and while the presenters thought the notion of operatic/symphonic metal was hilarious, I was hooked. It was like Evanescence but better. (It was 2006 and my music references were limited to whatever CDs I heard play in my friend’s car: I was born to a household where Delta Goodrem was acceptable, the Backstreet Boys were considered out there, Powderfinger was hardcore shit, and the best music was either written in the fifties/sixties or performed by Cliff Richard.) I didn’t stop at Nightwish despite my upbringing – my favourite band is Dark Tranquillity, may we all hail the god of death vocals that is Mikael Stanne – and I’ll listen to any metal subgenre that’s European in style.
I don’t just listen to metal, though. I love Rhianna’s Disturbia. I adore A. C. Newman’s Prophets and Emmelie de Forest’s Rainmaker. I can’t stop listening to Holy Grail by Hunters and Collectors and Sum of Our Parts by (queer goddess) Mary Lambert. One of my favourite ever pieces of music is This is Gallifrey: Our Childhood, Our Home by Murray Gold and the BBC National Orchestra of Wales (Dr Who, obviously), although John Powell’s Coming Back Around (How to Train Your Dragon) is a close second.
To me, these songs have everything I find more commonly in European metal, and that’s why they also call my playlists home.
It’s the combination of rhythm and melody that someone not-learned in music, a la moi, can only describe like this: it’s music that makes me want to move to it. Tap a foot, nod my head, shake my shoulders, bounce up and down, twist, sway, rock. When I hear a song and I’m moving to it, it’s a good-to-me song. Dance music, oddly enough, never inspires this reaction to me: an awful lot of it sounds as though I’m being subjected to the same five notes over and over again, which feels like a nail being driven though my skull. I prefer the variation in metal/rock/orchestral music, but that’s okay. There’s music for everyone, right? I’ve found the music for me, even if it means I eschew streaming services because I have the world’s most eclectic playlists. I’m practically the walking definition of eclectic anyway, so why shouldn’t it continue here?
With music, if I’m alone in my own space with the door closed, or even sometimes in the outside world (say, if I’m at a train station with headphones on and there’s nobody close by) I can be physically expressive in a way that is … acceptable. It’s an outlet to movement that isn’t my sitting there rocking my legs from side to side. I’m just doing what everybody does when they hear a song that moves them, right?
It’s almost acceptable, or else said door need not be closed, because I’m well aware that I move way more than I’m supposed to, but it’s as close to acceptable as I’m like to get.
Not that, over the decade of putting together my music library, I knew why I was doing it. I didn’t know that I listened to songs like Deadlock’s Loser’s Ballet for movement.
Growing up, it seemed that I heard the same words and stories over and over.
Don’t rock while you talk.
She’s just a lazy chewer.
I don’t understand why you don’t hug like the rest of the family.
She’s just so damn fussy.
Why can’t you just go to sleep?
I remember when you were three and we took you to the Show on a thirty-five-degree day and you didn’t get a single drop of ice cream on you. I don’t know any other child who could do that!
Quiet down! Do you have to get so noisy when you’re excited?
Stop moving your damn hands while you’re talking!
The words have changed, as an adult, but the repetition hasn’t.
You’d get on better with people if you stopped being so rigid.
Why don’t you just talk to people?
Well, I don’t know any other way to manage your anxiety, and mindfulness works for everyone else, so the problem must be that you’re not trying hard enough.
I don’t know what to do with you.
You think about things way too much.
Stop jiggling your legs!
As an adult, it feels like I say the same words over and over.
I heard you speak, but I didn’t hear the words, so can you please repeat them?
I don’t know what you’re doing on the computer chair outside my room, but all I hear is thunk and I have work tomorrow and I’m tired and can you just not?
I know you’ve told me your name five times before but I just can’t remember, so do you mind telling me again?
Every physiotherapist I’ve ever had has told me to relax, but I don’t know what you mean.
As an adult, it feels as though I’m thinking much the same things I thought as a child.
I’m supposed to look at their eyes, but at what angle? For how long? Other people don’t directly stare at the other speaker’s eyes, do they? Do they move their faces? Do they glance, shift away, glance back again? I don’t see them doing it, so I don’t know how to copy this – no, this is too much, this isn’t enough, I’m just going to look at my hands right now because I just can’t with this but then they’re going to think that I’m some robotic freak…
I don’t remember their face. Everyone else seems to remember their name, and I’m going to have to ask for their name again even though I’m sure they’ve told me five times already, and if they speak I’ll know what they brought three weeks ago and that they’re the one who always buys Diet Coke, but I just can’t remember if they’re Chris or Shannon and I have to read out the pairings for the tournament, but how am I going to point out the right players to the newbies if I can’t remember which names go with which faces…?
Stop telling me to be careful! I wish I could, but I can’t—my hands drop things, my legs don’t go where I mean to be, and it doesn’t matter what I try, nothing makes any difference!
I shouldn’t be fidgeting. They’re going to notice and think I’m weird, but I can’t keep still. Why can’t I just sit still like everybody else…?
When do I speak? They’re talking and I’ve got something relevant to say about what they’re talking about, but they’re talking and talking and talking … oh, there’s a pause, I’ll … no, they’re still talking and I’m talking over them again. I’ll wait for another pause and … damn it, I’ve interrupted them again. How do you know a pause from when they’ve actually stopped talking? How do other people keep from interrupting others? I don’t mean to do it but I can’t seem to stop it!
I’ve just repeated what they said back to them, same phrasing and everything – oh my god, why do I do that? I didn’t mean to do it, it just came out that way, but they’ll think I’m too stupid to come up with my own words!
I think it goes without saying that I have just enough self-awareness to have a metric fuck-ton of anxiety.
(I’m also failing the comma gods, but I feel like the run-on failure-to-sentence best expresses how I think. Sorry, comma gods.)
I grew up as a quiet, shy kid who liked books and My Little Ponies and Lego and making things out of paper or wool or material. I hated Barbie because she never had any clothes that were like anything I wanted or could stand to wear, so I learnt how to sew for her out of frustrated self-defence, so to speak. I hated eating meat: it was a tough, flavourless, greasy torture that made me feel sick when I put in my mouth. I didn’t eat much in the way of anything outside the few things I liked, in fact, which meant I often went to family picnics and went hungry because said family didn’t grasp the notion of why I couldn’t just pick the mushed egg out of the lettuce. Going out to tea at a restaurant was (is) a torture in finding food I could (can) actually eat. I engaged in a constant war with Mum over her need to replace my dead-as-a-doornail pillow. I couldn’t sleep when we travelled, which was a lot. I could barely sleep at home. I hated woollen clothes and my hair wisping about my face and dirt of any description. I had a collection of model horses and they all faded on the window-facing side because I always arranged them in the exact same spot in their toy paddock. My sewing box was organised to death, and I’d spend an awful lot of time just taking things out of it and putting them back in again to see everything all packed away and neat. I knocked, banged, crashed and bumped my way through life, leaving a trail of broken crockery and anger at my lack of consideration behind me.
I learnt to laugh first when I dropped something or fell over. I learnt to apologise at the drop of a hat. I learnt not to ask questions aloud. I learnt to stand there and say nothing when relatives leapt out at me with surprise hugs, although I never could manage to hide the flinching. I learnt that nobody really wants to have a conversation about the ways in which we use words, and, if I don’t want to be called arrogant and elitist, I need to shut up. I learnt that, most of the time, people don’t say what they mean and mean what they say, and, while this seems irrational and inconsistent, nobody is interested in actually discussing this. I learnt to hide as best I could how uncomfortable I felt under bright lights and in noisy spaces because the noise was better than the scolding and yelling I’d get if I complained.
I learnt, first and foremost of all, that I am weird.
I learnt, second of all, that there is no point or place in time where it is okay or safe to be that kind of weird.
Nobody understood. I was fussy and demanding and annoying. Nobody regarded my need for correct pillows or absolute darkness and quiet as anything but a problem: nobody else in the family was like this, so why was I? “Just doing it for attention” was spoken when I wasn’t supposed to hear. A lot of the time just being me got me sighed at, yelled at, screamed at, dismissed, verbally abused. Occasionally it got me shoved against a wall and a fist shaken in my face. At school it got me names, being spat on, being hit and shoved into lockers, my books stolen, isolation. Often it meant that when I was hurt nobody believed my injuries, because I was just whining over nothing like always: it meant I was forced to play games of netball with an arm I couldn’t lift past my shoulder or run on a turned ankle. Crying, as I’ve written about before, earnt me more disdain and hatred, but it’s difficult for me, when so overloaded with emotion and sensation, to not cry.
Physical and emotional safety, friendship, acceptance and even love – of the kind where people didn’t scream, yell, sigh, threaten physical or verbal violence or react in extreme negativity – meant not being weird.
(“Weird”, here, means “autistic”, but I didn’t know that, then.)
I learnt, third of all, that a quiet, bookish, by-nature-analytical geek who does a lot of reading and watching can figure out, most of the time, the rough outline of how people behave and expect others to behave, even if the why gets chalked up to “don’t ever expect people to make sense” and the ability to practice it is significantly less than the ability to observe it.
The rules might not make any sense to me, and in fact they seldom do, but it’s a rule. I know all I need to do, to gain an approximation of safety, is follow it as best I can.
I can fake eye-contact to a degree that people don’t know how much I hate it. I can smile and look at people and greet them as they enter the shop. Once I figure out what the script is, I can follow it without problems. (It’s why I hate doing something new: I don’t know what the script is, and I don’t trust myself to be able to muddle through without doing or saying something weird or strange that gives me away as socially incapable, like stuttering or forgetting words.) Like an awful lot of female-designated late-diagnosed autistics, I’m a damn good actor, which actually leads to more problems: I look and sound neurotypical, mostly, so why do I struggle with so many things neurotypical people don’t?
Actors, though, get to take off their shoes and masks and wigs at the end of the day. They get to come home and be themselves, if only for a few precious hours. I came home from school, where I tried to be the so-called normal, only to have to master the art of so-called normalcy around my friends and family. I never got to take off my mask. I never got to be me. I never knew it was okay to be me.
Is a mask still a mask if you don it for decades at a time?
I don’t even know, at this point, what I’ve been repressing and what I might go on to discover that is perfectly normal and natural for the autistic K. A. to be, feel and express that wasn’t on the list of allowed behaviours for the K. A. that was trying so hard to be neurotypical (read: safe). I don’t know, right now, who I might be with the freedom to just … be. I know I’m desperately uncomfortable with – and ashamed of – several things I’ve put so much effort into not doing that I can’t even do them in the company of an accepting psychologist who gives me permission to pace and flap hands during sessions. I don’t know what else I’ve lost, how much I’ll get back or what I might find, and all at once that’s interesting, exciting and thoroughly heartbreaking.
I know I’ve lost one thing through donning the mask.
Every single physiotherapist (and as someone who experiences chronic pain, I’ve known several) I’ve seen has told me that I’m the most unrelaxed, stiff, rigid patient they’ve had. This was usually spoken after a few sessions when I’ve gotten used to the experience and situation and my anxiety’s simmered down, and it usually left me baffled. I thought I was relaxed. Not half out of my skin in anxiety/panic is chill for me! But, no. They asked me to relax, every time, and I blinked at them and said that I am, and they blinked back at me and spoke around the suggestion that I need to try harder at relaxation without ever telling me just how it is I might go about doing that.
When someone told me to relax and I wasn’t anxious, I had no notion what they meant. How could I? They’re referring to bodies that don’t behave like mine. They’re referring to brains that don’t process and respond to sensory input like mine. They’re working on the assumption that I’m neurotypical and therefore we have a comprehension in common. We don’t. I walked away feeling as though I’m stupid, difficult and broken because I do not understand something that is so simple nobody has ever bothered to explain it.
My experiences with psychologists peddling mindfulness – specifically mindfulness meditation – as the One Solution to depression, anxiety and chronic pain are a hundred times worse than the physiotherapists. I got so anxious and stressed by trying to meditate, because it only leaves me more aware of my pain and discomfort while forcing me to do something entirely unnatural to my natural physical experience, that I now walk away from meditation more stressed and wound up than I was when I started it. It’s distressing, disabling and triggering, in fact. All I got, when I tried to express this, were litanies of slightly different ways to try meditating or frustration at my unwillingness … at which point I got tired of it and moved on to another psychologist or, for five months last year, gave up on therapy altogether under the sincere belief that I was too broken to fix. If I weren’t, this would help me, right?
I can’t relax into my body. I can’t.
As I was writing this, I started bouncing my legs: I feel an awful lot of distress rearing up if someone even utters the word “relaxation”. My emotions are by nature physical. My inclination is to rock forwards (a computer chair is ideally designed for this) or flap my hands when I’m really passionate about something. Music makes me happy, especially if it’s in that sweet spot of being loud enough that I can feel the rhythm without being so loud that it overwhelms my auditory processing, so I’ll rock and bounce and wriggle because I feel, even if momentarily, good. (I think, in the same way that I count dice, that this is how I feel and express a connection with the music.) If I’m feeling too much stimulation, like from a shower, I’ll rock from side to side. When I’m stressed or uncomfortable, I’ll pull at my hair. When I’m in a situation where it’s not acceptable for me to move (as in any situation that involves the presence of another human being) I’ll sit there and fidget with my hands. Clench them, pull them, twist my fingers, pick at my fingernails, claw my skin. It’s borderline self-harm or actual self-harm too much of the time. When I’m not feeling stressed or tense, I’ll just be running my fingers over or under my nails or stroking my skin, but the vast majority of the time I’m wielding my hands with hateful tension.
I’m not soft. I’m not gentle. I’m sure as fuck not kind.
Except I don’t do most of the aforementioned movements, in point of fact, save for those involving my hands. I start them, sure. When I started bouncing my legs, I jerked, stopped, wrapped my ankles around each other, jammed my legs together so I couldn’t move anything and sat with the tense rigidity possessed by the average power line post because I am not allowed to move.
I do this several times a day, and I didn’t even know it.
I don’t know when I started this, but we can say I’ve spent at least twenty years, possibly more, not noticing that whenever I try to express in a way that is natural to me, my learnt behaviour is to abruptly and forcefully halt. It’s not a natural, calm stillness. It’s not relaxing or gentle. It’s a violent, tense stillness that is restrictive and violating, and it’s a stillness in which I spent most of my time. It’s a stillness I didn’t even recognise as abnormal. I am spending a great deal of my day trying not to move.
(I wouldn’t have noticed if I hadn’t started seeing a new psychologist who both knows my new diagnostic history (in terms of chronic pain, autism, depression, anxiety and personality disorder non-specified) and is very interested both in the stiff way I sit in the chair opposite her and the way I get progressively stiffer, tenser and more huddled-in the closer the conversation gets to anything emotional.)
The truth is that I didn’t know how to relax – how could I, when I’m actively, forcibly and unconsciously doing the very opposite? I didn’t know that that I was forcing myself to behave counter to my needs in order to be safe and accepted. I didn’t know that music was one of my few outlets for physical expression. I didn’t know that anyone could talk to me for an hour and then tell me ASD is a diagnosis that may describe me, I didn’t how how much of my life I didn’t write about because it ran counter to my efforts to be neurotypical, and I didn’t know how very much I needed a word that isn’t “weird” or “abnormal”.
All I knew was how to hold myself still, even when it hurt.