I don’t have the spoons to rewrite this post in its entirety after wordpress so kindly deleted it. The short: I had surgery on the 10th, which is why I’ve been absent.

The long:

When does ‘friendly’ teasing cross the line into being mean spirited? And more importantly, what is it ok to tease someone about?

Both the answers to that depend on your relationship to that person, I suppose. People find it hurtful when you joke about things that are personal. My mother made several jokes tonight about my laziness, my eating issues, and my sleeping habits. They were harmless on the surface, and in any other circumstance I’d shrug them off and think nothing of it. But I was feeling particularly sensitive today and grew visibly irritated at each jab, one after the other. Why did it bother me so much? Is it even okay that it bothered me, or am I just being oversensitive? Should I just get over it?

Does she not understand that sometimes I can’t get out of bed? I’m too depressed or too exhausted, moving is the ultimate struggle, my limbs are made of cement and my head is full of tears and agony. How is one supposed to function like a regular human being when they, quite literally, aren’t a regular human being? Executive functioning issues are real. I can’t fucking brush my teeth some days and I hate it. Does she think I revel in it? Does she think I enjoy being a lazy slob piece of shit?

Does she not understand that I’m doing my fucking best, my fucking goddamned best with food, I’m trying so hard to eat new things even though it’s so fucking hard for me, and I’m so SICK of people making fun of what I eat and what I don’t? I lived in Asia for a year and I ate so many new foods there, I expanded my palate so much, and it’s still not good enough. I try, I try so hard, I eat things I hate that make me gag just so I won’t offend the person serving it to me, why can’t I just eat what I enjoy? If I am healthy – and I am – and not overweight – which I am not – why does it matter what I eat? Why is it anyone’s business?

Does she, and Boyfriend, and my stepdad, understand that this is a sleep schedule that works for me? That I am capable of shifting back to a normal sleep schedule, because I have done that many times before, but that I am just a night owl and prefer sleeping late and waking late? And what, pray tell, is so fucking wrong about that?

Why is everything I do up for discussion? I feel as if I have been torn open and put on the stocks. All the villagers can come by and peruse my insides, poke at my sticky-out bits, laugh at how different I am when all I am trying to do is get by in a way that works for me. I will never understand why human beings think it appropriate to comment on other human beings’ lifestyle choices – whether it be the food they eat, the clothes they wear, or the time they go to bed. If they aren’t hurting anyone, why does it matter? Why does any of it matter? Why do allistics fucking CARE?

I’m tired. I’m so tired of trying. I try to be normal and they throw it back in my face. Nothing I do is right. Nothing I do is without scrutiny. Nothing I do fits their prescribed ideas of what humans should do, should eat, should act like, and they don’t know how to deal with it so they tease, they press, they try and grind me down until I fit the mould they have created for me.

But I just don’t bend that way.

Embracing the term 'Autistic' and why that's so damn hard for me

Let me set the stage for you.

My boyfriend at the time—let’s call him Jeremy—and I were wandering through the city in around 2016 or so when I spotted a sign for a hobby shop. I made a beeline for it, dragging Jeremy behind me, and went straight upstairs to the plane floor. It’s not a floor just for planes, of course, there’s other stuff there, but did I ever pay attention to it? Fuck no. Planes is what I went there for and planes is what I was going to see, damn it.

I stood in front of the huge glass cabinets stuffed to the brim of die-cast planes of all scales and grinned, my chest filled with an indescribable joy that radiated through my eyes and my pores. I loved this shop.

A quick segue, for context: I’m a plane nerd. Always have been. Civilian aircraft are my jam, military not so much, but I can hold my own with most air force guys. This special interest runs in the family—my paternal grandfather worked at an airline as an engineer, and my father loves planes and is in the air force—but I’m the only girl in the family to have it. Since I was little I’ve been obsessed with planes; it seems that, much like with horses, I came out of the womb loving them. I used to beg my dad to take me plane spotting. In year four, as part of holiday care at my school, we got a special ‘behind-the-scenes’ tour of the airport in a little bus. I was so excited to be on the tarmac—the actual runway!—I could barely contain myself. The tour guide/airport worker was highly impressed by the fact that I, a ten year old girl, could name every single plane we saw. He was quizzing me at the end, playing along not with malice but with genuine awe, and I loved every second of it.

Back to the hobby store. I flattened myself against the glass, gasping with excitement. “Look, that’s a Qantas 747! And—oh! An A380! That’s my favourite plane, you know! And check this out, it’s the special livery on the 737—”

“You fucking autist,” Jeremy sniggered.

(I can’t remember the actual comment. It might have been “are you autistic or something?”, or even, “you fucking autistic,” or, “haha, autist”. But the sentiment is the same.)

I stopped dead, turning to him. We had been together for two years at this point and although we fought, he was never outright cruel. This comment was on another level. He must have seen the hurt in my eyes and flinched, embarrassment turning to outright concern when I started crying, right there in the hobby shop as the other patrons (not that there were that many) inched away from us.

He apologised profusely, over and over, and hugged me as I cried. “It was a joke,” he said, stroking my back. “I’m so sorry.”

He felt so guilty for making me cry that he bought me a $350 model of one of my favourite planes, a model I still have (I’m staring at it right now as I write this), and I left the store beaming from ear to ear. When I tell this story these days, I play it off, parroting his comment flippantly and telling people I won because I got an expensive metal plane out of it all. And I did. But that doesn’t change the piercing, sharp hurt that slid into me when he called me autistic, a betrayal.

Once, at my first high school, I mentioned to someone in science class that the word ‘quiche’ made me feel gross inside. It doesn’t now—you’ll see why in a moment—but at the time just hearing or thinking of the word made my whole body cringe in a toe-curling, spine-tingling way. That makes it sound pleasant; it wasn’t. It was just a fucking word, for god’s sake, but it made me feel like white noise in my head and chest, roiling in my stomach. That’s the only way I know how to describe it.

Someone overheard. The girls who made it their life lesson to make me miserable got wind of this, and for the next few weeks, I couldn’t go anywhere at school without hearing ‘quiche’, an echo of the worst kind, a malicious shadow winding its way into me. Girls would whisper it to me in the stairwells, shout it across the quad, find me in the library to say it to my face—all to watch me squirm. They liked watching my discomfort. It made them feel good to bully me in this way.

At the time I had no idea why this word made me feel like this—and thanks to my good ol’ pal exposure therapy, the word no longer has the effect on me, and instead I just wrinkle my nose at buried memories—but now it’s pretty clear that it was a sensory issue, albeit a weird one. These girls had no idea I was autistic (I think), and were just using low-hanging fruit to get to me. But it was the first time my autism was used as a weapon against me.

It certainly was not the last.

Years later again. I’m nineteen, maybe twenty. Laughing with my friends on the sofa. A plane flies overhead. I pull up my flight tracking app on my phone to see what it is and where it’s going. “Autistic,” laughs my friend, and I bite the inside of my cheek.

Everywhere I went that term followed me, and I could not for the life of me figure out why. I wasn’t autistic. I would know if I was autistic. That was for boys like Gary from primary school, who had hardcore in-depth knowledge of all the bugs that lived in the park and would sometimes eat them. Aspergers, too; I knew of that, but that was for my friends like Tom, who just seemed a little eccentric and almost too good at computers—he somehow hacked his way into the admin account and installed a first person shooter on all the machines in the library. Autism was those boys I spent my formative years with, not for me.

Looking back now, I can see that my merry little gang of misfits, the only friends I had in primary school, were all almost certainly autistic in some way. We kept to ourselves and played pokemon cards. Most of us avoided eye contact. It wasn’t strange, it was just the way we were. There was a quiet understanding between us ‘weird’ kids, a sense of camaraderie that even if the outside world didn’t get us, we got each other.

But I lost that when I moved schools for high school. I was flung into a world I was unprepared for, even though I begged my mother not to make me go. And it was every bit as hellish as I knew it would be. Even at eleven I was aware of the fact that I was different from the other kids; I was weird. I knew that weirdness would be picked on and it was.

By my second high school I had learnt to mimic effectively. I was bubbly, loud, too loud. I was a parody of what I thought people liked. I was the joker, the clown, the one making everyone laugh—either with me or at me, didn’t matter. I had boyfriends, I had friends, but it was all very precarious. I felt like I was living behind a mask. I slipped it on every day as I walked through the doors of school and took it off the moment I got home. It wasn’t too different from the real me, it was just me… amplified.

I settled slightly at my third high school. I was able to tone down the mask. I was still ridiculous, but it wasn’t grating (well, too grating). I masked well enough to pass as normal, if a little eccentric once you got to know me. I made friends, real friends, friends I still talk to to this day, and managed to get out of school with my sanity somewhat intact.

Through it all, through every single move, through every single part of my childhood and adolescence, I was so, so aware of the fact I was different. I flipped through personalities like I was changing clothes; all of them were inauthentic copies of someone else, the only way I knew how to socialise. For a while there, Borderline Personality Disorder was thrown around. I was never officially diagnosed with it. I did a lot of DBT, which helped, and it was forgotten about. (Fun fact for you! Autistic women are often misdiagnosed with BPD.) But I knew something was different. I was on the outside looking in. Everyone else just seemed to get it, instinctively, and I did not.

As a young adult, I settled, somewhat. My mental health recovered from my teenage years. I got a part-time job, and started university. I was doing well.

Then my sister told me she thought we were autistic, I moved to Korea, had a mental breakdown, and moved back. And now I’m here.

This post is long and rambly, and I’m sure it’s made little sense. What I’m trying to get at is that self-acceptance is so, so fucking hard. For years I was made to feel ashamed of my autistic traits, repress them, push them away, be ‘normal’. Now that I know that my normal is different to neurotypical normal—and that that’s okay—I can embrace those parts of myself that I denied for so long. But fuck, it’s hard. Whispers of autist and jeers about planes and quiches and trains float through my mind, following me everywhere. They have been proved right.

I don’t speak to Jeremy anymore. Our breakup was messy and drawn-out and, if I’m honest, about a year overdue. He has since moved overseas, and when a mutual friend asked if he was going to catch up with me when he was in town, he grimaced and said ‘fuck no’, so I guess the friendship boat has sailed (not that I’m too broken up about that. Or broken up at all). But I wonder. What would he say if I told him I’m autistic? That he was right? Would he laugh? Would he apologise again? Would he feel guilty?

I guess if there’s a motto to get out of this blog post, it’s to not use autism as an insult. It’s all too common to see this, especially online (think of memes like ‘reeeeee’ and ‘autistic screeching’), and it’s really, really shit. Even my friends, who are good people and who would never intentionally hurt me, have called me autistic as an joke (insult?) before. It’s not funny and while I may have been able to laugh about it before, I’m not really laughing now.

Autism isn’t a joke. It’s not a meme or something used as a punchline. It’s how I see and experience the world, how I interact with others, and it’s not bad; it’s wonderful.

Or at least, that’s what I try and tell myself.

Hopefully one day I will believe it.

Socialising, spoons, and what I'm entitled to (aka: imposter syndrome)

Socialising exhausts me. It always has; when I was younger (as in, teenage years) I was able to push past it because of my desire to fit in and be seen as ‘normal’, but now that I’m in my twenties, I find it harder and harder to do so. It’s easiest for me to socialise with people I know well, much harder if they’re strangers or if we’ve never met before, but even with my closest friends I can’t take that much constant talking before I just get exhausted and need to retreat into myself.

I’ve always sort of dismissed that side of myself and forced myself to ignore it. Now that I’m embracing it—or rather, letting my mind tell me when I need to have a break from face-to-face socialisation—I feel like… Well, I feel lazy. I feel as if I am not entitled to this.

A note: This post… is going to be hard to put into words, because what I’m feeling is hard for me to articulate, even in my own head. I’ve tried to explain it to Boyfriend, and I’ve been able to get most of my point across, but not without muddling my words and tripping over myself.

Essentially, what I feel boils down into this: Until now, until I started learning more about my autism and what it means to be me, I’ve been able to (sort of) function as a (somewhat) regular human being. Now that I’m taking allowances that I’m entitled to as part of my autism diagnosis—allowing myself to stim, retreating from social situations when overwhelmed, trying to not force myself to make eye contact if it makes me uncomfortable—I feel like a fraud. I feel like I’m not allowed to do these things because I clearly was coping without them before. I feel like I am just ‘putting it on’, attempting to be different for the sake of it, taking things that to not belong to me.

Boyfriend put it succinctly when I attempted to explain myself; he said I’m suffering from imposter syndrome, and a lot of other disabled people struggle with this too. He said time helps.

While I am reassured by his words—he has a visual impairment, so knows a thing or two about this—it still doesn’t feel that I’m entitled to do these things. Playing into this as well is my lack of a formal diagnosis (which I’m seeking, hopefully in the new year, not because I don’t believe self-diagnosis is valid—it is—but because I feel it will be helpful for me).

Take last night, for example. New Year’s Eve. My friend’s—let’s call them J—big party. I felt okay leading up to it; I was in good spirits and thought I could handle socialising, helped by the fact that I’d met J’s friends before, and they all seemed like really nice people.

Of course I couldn’t stop thinking they hated me or that I said the wrong thing, as always happens when I meet groups of new people… I remember trying so hard to be the funny one and being flooded with relief whenever they laughed.

Except they arrived, and… all stood in a circle talking to themselves.

Boyfriend and I looked at each other, unsure. Did we go up and introduce ourselves? A daunting task for me, autistic, and him, neurodiverse of some kind. We just sat there awkwardly, shivering in the cold, as more and more of them arrived and joined the circle. J yelled at them to sit down at the table. They ignored J. One girl came and sat and chatted for a bit; she was really nice and it made me feel a little better. I reached for my phone and texted Boyfriend even though I was sitting right next to him, completely clueless about what to do and feeling like absolute shit for being ignored.

Me: I feel so obligated to try and be happy and exuberant but honestly I’m so not in the mood. but if I sit here quiet/go inside I’ll ruin things and make J sad

Him: I don’t know what to do 😦

Me: me neither lol lose lose

Him: The woman opposite you does she not know anyone either?

Me: nope she’s in with them all, she’s just nice and talked to us
I’m just… so sick of being on the outside of social situations
and idk whether I have the right to be upset or it’s my fault for not trying more to socialise

Him: I don’t know there is any breaking into that group, I don’t think it’s you

Me: I feel like such fucking shit lol

I felt so obligated to put on a happy face and be social for J’s benefit, but at the same time, I was crippled by my anxiety. I just could not bring myself to get up and walk into that circle; they all had known each other for ten years or more at this point and here I was, the outsider. I felt pissed off at them for not acknowledging me or Boyfriend, guilty about feeling pissed off when I probably should have been the one taking initiative, and even guiltier over the fact that I couldn’t take initiative. I know this about myself, I’ve known this about myself forever—I generally do ok in social situations if someone else talks to me first, but if I’m the one who has to make the first move, I would rather curl up in a ball and die. It’s why I’m so stoic and standoffish at university. But still I felt guilty for not being a fabulous conversationalist, conflicted at continuing to sit there silently, and above all, a strong desire to GTFO.

I disappeared to pat J’s horse twice, enticed by silence and the familiar smell of equine, the soft fur under my fingers, but was quickly found by them and coaxed back to the party. They expressed disappointment their friends weren’t making an effort to speak to anyone but themselves, and said things would get better after they’d all had something to drink. I had only had a few drinks at this point and was nowhere close to even being tipsy. I had no desire to drink more. I felt guilty for this too.

Eventually J’s friends all sat down. They squished down the opposite end of the table, as far away from us as possible, and only started moving closer when they realised there weren’t enough chairs. One of the boys, who had arrived earlier and had chatted with me for a bit, pulled up the chair next to me and said sarcastically, “oh great, now I have to sit next to Rose.”

“People always say that when they have to sit next to me,” I replied, trying for levity but almost certainly falling flat.

He was joking—he didn’t mean it in a malicious way, or at least, I don’t think he did—but it stung. It hit a little too close to home. We also weren’t close enough to be making those kind of jokes. I rolled my eyes at J. That was the last straw, and shortly after, Boyfriend and I went inside and had a great time snuggling on the sofa and watching TV. We came out for the countdown to midnight, no one acknowledged us or said hello except J, and then we went back inside and shut the door.

Am I reading into things too much? Probably. Is it my autism making me do so? Almost certainly. Hyper analysing social situations is my normal. I always do it, always have; they were riddles for me to figure out and so I turned the pieces over in my mind, trying to figure out what I was missing that the others all seemed to grasp easily. I genuinely can’t tell in this instance if I was the asshole for not taking initiative or they were for not speaking to us. I can’t tell if I should be allowed to go inside and watch TV instead of being social.

I guess what I’m trying to get at is that, as I explore my diagnosis and what I’m capable of, I feel like I’m regressing. Logically I know this isn’t true. I’m still just as capable of doing everything I was before; it’s just now I know my limits and I’m actually listening to my mind and body when they tell me they’ve had enough. Logically, I know there is nothing wrong with me being assertive. Logically, I know that embracing my disability is not a bad thing.

But… it must be internalised ableism, because although I know these things to be true, I don’t feel them. I feel ashamed. I feel weak, although I would never think such things about someone else in my situation. I feel like I’m letting my parents down. I know they don’t believe I’m autistic and have always treated me as neurotypical, ignoring my screams over the seams in my socks, forcing me to eat food I hated, putting me in schools where I was bullied horrifically. This is not to say my parents are bad people—they’re not. But I feel that by embracing my autism, my limits, my stims, everything about this that makes up who I am, I am deteriorating. And it all cycles back to me not feeling worthy of my autistic traits.

I wish I could just live away from people.

An incomplete list of stims, from yours truly

An incomplete list of stims, from yours truly:

Sucking the inside of my arm (much to my mother’s chagrin, who demanded to know what the strange bruise-like marks were and was disturbed when I demonstrated how to make them)

Playing with my hair

Chewing and biting on things, particularly plastic things (this explains the random urge I get to bite things)

Squishing squishies and slime

Lipsyncing to music (I’ve been waffling back and forth about whether this is really a stim or not, but I don’t feel the urge to do it all the time, only when I’m out in public/stressed, which leads me to think it is a stim after all)

Leg jiggling

Chewing the skin on the inside of my lip

Playing with my hand fan

Rubbing my thumbnail through the fabric of my shirt

Part of me wonders what my stims would be like if I was encouraged to stim as a child, or even if my need to stim was encouraged. While it was never explicitly discouraged in the typical autistic behaviour correction sense—no refrains of ‘quiet hands!’—I was always told to sit up, sit still, stop fussing, stop fidgeting. All of my current stims—minus the chewing on things and sucking the inside of my arm—are socially acceptable behaviours that neurotypicals do frequently. Is this a coincidence, or did I redirect my energy into these stims so that I could do them in public and not attract attention? My instinct is the latter. I still suppress the urge to lipsync in public and only do it when I think people aren’t looking.

Why do I want to lipsync? I don’t know. It’s not really a conscious decision. It’s an urge, and it feels nice when I do it. Not in a tangible pleasurable sense, but in a way, a relief? A very subtle relaxation. Some of the tension in my chest, the ever-present iron band around my lungs whilst out in public, dissipates when I do.

Why do I suppress this? Why do I care what strangers think of me?

The answer is swift and honest: because I do care what strangers think of me, deep down. I have since I was a child, because no matter how hard I tried, I could not socialise properly. I always said the wrong thing, or laughed at the wrong times, or reacted in the wrong way, and then people would know I was different. Learning as an adult that different is not bad, just different, is incredibly difficult. There is nothing wrong with autism, and there is nothing wrong with the fact that I am autistic. But learning to love a label I hated for years is hard, and learning to love my stims is too.

I would like to go home, thanks

Currently I’m staying at my best friend’s place in another state for New Year’s. They’re (they use they/them pronouns) having a big NYE party in their backyard, and considering we’ve been together for the past three new years, it was obvious that I was going to go to this one. I love this friend dearly—we’re extremely close—but man am I miserable, tired, and sad.

I just want to go home.

I’ll start off by saying this post has little to do with my autism. But perhaps because of my autism I am more sensitive to being left out and excluded, as it’s what happened to me as a child. I was othered because of my differences and as such being othered these days, as an adult, makes me feel terrible. It doesn’t happen all that often, but when it does, I tend to pick up on it very easily.

This place—my friend’s house—is one such place where I feel very othered.

We went for a walk around the block yesterday to see the neighbourhood. I’m a horse fanatic—they’re one of my special interests and I’ve owned horses before—and as my friend lives in the country, there were plenty of horses to see. I couldn’t stop myself zipping over to fences (never through them; my trespassing days are long behind me) and whistling at the horses so I could pat them. We were walking down a long, gently sloping hill, when I saw three beautiful horses in a paddock, and crossed the road to try and pat them, whistling as I went.

What I couldn’t see, thanks to the trees on the other side of the road, was a woman in the paddock feeding the horses, with two big dogs next to her. The dogs caught sight of me and started barking, running towards me and slipping through the fence. I had come to a stop about a metre away from the fence and stood very, very still, so as not to antagonise the dogs any further. Perhaps I should have been scared; they were large dogs, clearly territorial, and barking very loudly and running towards me. But I wasn’t. The woman turned to glare at us without saying a word, and before I could apologise, my friend said “sorry, she’s a city slicker, she doesn’t know what she’s doing, she just wanted to see the horses.”

Stung, I backed away and we continued our walk, although I barely spoke for the rest of it.

In the evening, the three of us (friend, Boyfriend, and I) drive down to the lookout to take in the view of the city lights below us. There’s another car there, a 4wd, and soon after we settle onto a picnic bench, it starts inching towards us. A man gets out. He’s drunk and nursing a glass of rum. He tells us his life story; it’s sad.

My friend: “these two are city slickers, I’ve come up here to show them what we’ve got up here.”

I bite my tongue and turn away.

Boyfriend to me, later: I’m not even from the city. I grew up in the country. I’m not a city slicker…

This afternoon, it’s a stupidly hot day, the air rippling with the kind of dry heat that sucks all the air from your lungs. We go down to the bakery to get lunch and so my friend can pick up a package from the post office. I pull up in the post office parking lot, next to a big ute parked askew, and my friend mumbles something under their breath.



“No, what is it?”

“It’s just—we don’t park straight here, we park like that ute, on an angle,” my friend sighs.

“But that car is straight,” I say, pointing at another sedan to my right, parked arrow-straight.

“That’s different,” they insist.

“Okay, well—” I say, and go to put the car into reverse to fix my error, confused as to why it fucking matters seeing as there is no one else pulling in behind me.

“No, it doesn’t matter—it just—doesn’t matter,” my friend says, and, clearly exasperated at my apparent incompetence, gets out of the car.

I sit there for a second, cowed, hands clasping the wheel for dear life. I have done the wrong thing again, stepping over boundaries I didn’t realise were there. Never mind that there were no lines marked on the gravel to show at what angle one should park. Never mind that my friend could have told me before I got to the car park, to park on a 45 degree angle. I pulled in straight because I saw that car to my right that was parked straight. Does it even fucking matter?

I can never do the right thing when I am here. I am constantly the bumbling fool from the city, the idiot who doesn’t know shit about living in the country, the dumbass who asks simple questions that everyone should know the answer to. I am an embarrassment to my friend, making mistakes everywhere I go, and it brings back nasty memories of always being the odd one out in school. I hate it.

I have to look everyone in the eyes. I can’t stim (although yesterday I found a fun new one—playing with a hand fan, opening and closing it over and over again). I have to eat everything presented to me, even if the textures make me feel like white noise inside, I have to be social with people I barely know, I have to mask, I’m so tired. I’m so tired. I want to go home and I still have four more nights here.

Not to mention the NYE party tomorrow, which I’m dreading. What if I embarrass my friend in front of their friends? What if I say the wrong thing? The more I learn about my autism the more I realise that my apparent socialisation skills are a facade. I barely have any clue what I’m doing, and it always seems to be the wrong thing—only I don’t know what the right thing is, because neurotypicals just know and they aren’t about to explain it for my benefit!

I dunno, you guys. To think a week ago I was having a whine about Boyfriend’s sister and mother being here. I wish I was back there! I wish I was at home under my weighted blanket with my snake curled up in my hand. I feel so stifled and small here, so shamed.

I’m exhausted.

Look Me In The Eye

When I was nineteen, I went on a date with a guy I’d met off OkCupid. We met at a coffee shop near where I was living at the time and stayed there for a couple of hours before parting ways; there was no spark and he wasn’t all that interesting to talk to. I would have shoved this experience in the bin of mediocre dates to forget if it weren’t for one thing—my complete and utter failure to make eye contact.

I just could not look this man in the eye. I didn’t know what it was. I could force myself to if I needed to—which I did out of some vague, suffocating sense of panic that he’d recognise the lack of eye contact, brand me as a weirdo, and walk out—but it made me feel tight in the chest, white noise in the head, uncomfortable. It was a familiar feeling, but it wasn’t until I started connecting the dots in regards to my autism that I realised why, exactly, that feeling was so familiar.

Glance into eyes. Look away. Look at nose. Look away. Look at lips. Look away. Repeat until a distraction arrives and you have an excuse to look away properly and breathe.

This is how I taught myself to socialise.

Boyfriend and I went into the mountains yesterday to meet up with his friends. These friends are mentally ill, disabled, queer, left, and basically copies of myself. I feel pretty damn comfortable around them and know they won’t judge me for anything I need to do in regards to my health. In fact, I was telling one of them about the chewable necklace I bought for myself to stim with, and they expressed interest—and more importantly, no judgement—in buying one themselves.

And yet I still tucked that necklace in my bag when I got out of the car at their place. I still stared at their noses and lips, glancing up at their eyes every so often just in case they thought me rude, even though I told them I’m autistic, even though I knew they wouldn’t care, even though, even though, even though.

Maybe one day I’ll have the confidence to stim in front of them, to happily not meet their eyes, to accommodate myself. But maybe not. I’ve been masking and dealing for so long that embracing my autistic traits feels like a cop-out, regression, something I am not entitled to.

Sacrificing my personal comfort for the sake of others is all I know.

Exhaustion and Christmas

Christmas has always been a somewhat tiring event (as it is for everyone I suspect, neurotypicals included!) for me even when I was a child. The mass of social interaction, first my mother’s family and then my father’s, seeing up to thirty or forty people across the span of two days—answering the same questions over and over—if a child found that tiring, what hope do I have as an adult?

Something I’m struggling with in regards to my diagnosis is: how much of my desire for solitude is because of my autism, and how much is just because of me? Trick question. My autism is me. I’m still wrapping my head around the idea that I have… something… my brain is wired in a way that makes me so different.

Anyway. I digress. Boyfriend’s mother and sister have been staying with us for the past few days. I love both of them a lot, they’re great people and I’m particularly close to his sister, but holy shit, I’m exhausted. The pressure of social interaction has at least been lessened by the comfort in the closeness we share; I feel less need to treat them as proper guests, to entertain, to do what a good host should—but I am still hyper-aware of the fact that there are other people in my space and that I can’t just do whatever I want whenever I want. They leave tomorrow, and I have the rest of the afternoon to myself before Christmas proper on Wednesday, and that—that I am dreading. Not because I hate my family but because… God, the questions, the eye contact, the expectation to smile, to be present, to not stim, to be engaging, to talk about myself… I can’t really put into words how terrifying that all is. Perhaps I would feel better about it if I had more of a chance to recoup, but as it is, I’m going into Christmas with low social batteries, and I dread to think what I’m going to be like by the end of it.

What if one year we didn’t do Christmas? What if me and Boyfriend just holed up in front of the TV in our pyjamas, eating junk food and watching movies? What if we did something special, just the two of us? No expectations, no questions, no eye contact, no uncomfortable silences… A girl can dream, huh? But I doubt that will ever happen. I am expected to show up to Christmas each year. Daddy dearest insists on it. And when my grandfather was alive I had a genuine reason to go and to look forward to going; now that he’s dead, I don’t see the point. I’m not particularly close to my aunts and cousins, and we keep in touch on social media, anyway. Does that make me heartless? I don’t know.

All I know is that I don’t want to go, but I must because social conditioning says I must.

There are so many things to dissect, here. The first in my mind is that why am I so insistent on bending to my father’s will, when he hasn’t been a good father to me? I care about my younger siblings a lot—and do look forward to seeing them on Wednesday, actually—but is that worth the exhaustion? The second is that I’m an adult who is allowed to say no. Why don’t I exercise that right more often?

Part of it, I suppose, is that nasty ole internalised ableism rearing its head again. If I had MS, or cancer, or some other ‘legitimate’ condition that left me genuinely unable to leave bed and be social—then I wouldn’t feel as guilty about withdrawing. And logically, of course, I know that my depression, anxiety, and autism are just as valid as MS or cancer. But whenever I say I’m ‘not up’ for something, it feels like I’m cheaping out. Like I’m being a wuss. Like I’m just lazy, that I just need to get over it. I don’t know how to explain that I just genuinely do not have the spoons for social interaction, some days. For fuck’s sake, some days I don’t have the spoons to do more than get up and go pee before limping back to bed. That is legitimate, is it not? Why can’t I just say no to things that are beyond my capabilities? Why is it not okay for me to recognise that some days I just DON’T HAVE THE ENERGY? I’m a twenty-three year old grown-ass adult and if I want to I should be allowed to stay inside all day and not talk to anyone. That, in fact, is where my autistic self would be happiest.

But the world is not made for people like me, and so even though I am allowed to do so in theory, in practice I am not. There are layers of social and familial expectations heaped on my shoulders that I cannot afford to fail to see. My attendance at Christmas is not an option; it’s mandatory. I have no choice.

And that really sucks.

Revelations over burgers, or: goddamn it, sis, why did you wait 'til I was 21 to tell me this?

“I’ve been trying to get my head around
what the fuck is happening

WTF? – OK Go

You know those totally cliche movie moments that never happen in real life? The reveal of something horrible/life-shattering/amazing to our plucky protagonist by a friend or confidante; the intense zoom of the camera into their pupil as we’re treated to a montage of clues all leading up to said realisation; the abrupt zoom out again to show the horrified/shocked/amazed expression on the protag’s face.

A moment like that did happen to me in real life, about two years ago now. Except the zoom in-zoom out sequence happened over those two years, so really, that example is rather redundant. But it got your attention, huh?

Nah, what happened to me as I sat across from my half-sister eating a burger was a lot less dramatic, but no less life changing. “You know,” she said around a mouthful of beef, “I think we might be a bit on the spectrum.”

I looked at her, slightly stunned. My half-sister—older than me by three years, and with an insight into her mental health that I did not yet possess, was incredibly intelligent, and I enjoyed our long talks about our father’s inadequacies, our stepmother’s abuse, and the effects both had on our mental health. When she said something about her brain, I tended to listen. But this? It was the very first time in my life someone had said I might actually be a bit on the spectrum seriously, without insult or ridicule. I didn’t know what to make of it.

“Uh, what?” I managed to splutter.

“You and me. And [Father], too. I mean, don’t you think?”

No, I did not think. I most certainly had never considered the idea that I could be autistic. I almost laughed in her face; her earnestness dissuaded me, and instead I just shrugged and said I didn’t know. Inside, though, something tugged at my chest. The seeds of doubt had been sown, and I stewed and let them grow until my next therapy appointment.

I’ve been going to therapy on the regular for a good eleven years now—and to the same therapist, no less. She started seeing me when I was eleven or twelve, and can see me until I’m 25 (so as of me writing this, I’ve got two more years left until I graduate out of her care). In fact, she started seeing me because my stepmother insisted on finding a therapist for me to try and fix my bowel/toileting issues (which is a saga for another post), a gesture that seemed altruistic on the surface but was really anything but. Whatever the reason, my therapist came into my life, and I’m damned grateful for that. I wouldn’t be half the person I am today without her. She knows my brain better than I do, and so it was full of false confidence that I walked into our appointment and repeated the conversation between my half-sister and I. I finished with a flourish and a smile, expecting her to get it, to be in on the joke, to laugh and say ‘haha of course you’re not autistic.’

But instead she got a funny look on her face. It wasn’t a smile, or laughter; it was hesitant contemplation. She sighed, and said, “Well…”, and my heart fell out of my ass.

“I didn’t diagnose you at the time because you didn’t need the resources that a diagnosis would provide—funding or grants from the government, or special things like that. And I won’t diagnose you now, because it won’t really help you and it’s pointless, but you were a very spectrum-y child. And, you know, it’s a spectrum.”

A diagnosis in all but name, and my world shifted.

The long and short of it is that I was bullied pretty horrifically for most of my formative years. Primary school was okay; there were a few issues but I mostly kept to myself and my group of fellow weirdos who were shunned by everyone else. High school is where everything went wrong, though. I moved schools twice, once halfway through 8th grade, once at the end of 10th, and it wasn’t until I reached my last school that I found any modicum of peace in a social sense.

The bullying came in many forms—never physical, thank god—but it all circled back to the fact that I was ‘different’. Not visibly: I was maybe a little taller than average, but not the tallest; I wore glasses, but I wasn’t alone in that; I was awkward-looking, but not so much that I stood out. No, my bullying was because of my utter ineptitude socially. I was always on the outside looking in. I was always watching my peers interact like they’d been handed a script for social interaction at birth, and I was thrown into the scene and told to just improvise, you’ll be fine! I never said or did the right thing. I never laughed at the right time, never told the right jokes, never talked about the right things. I had the wrong hobbies. Every single thing about the way I interacted with other humans was abnormal and thus I was punished for it. Now, in my twenties, I’m realising that different does not equal bad, but try to tell that to a vindictive twelve-year-old girl.

I learnt to socialise by studying. I retreated from my peers and watched them like they were science experiments. I mirrored their hand movements, their body language, their facial expressions. It all felt so false and fake, like I was being inadvertently manipulative, but when I moved to my second school I took those lessons with me and actually managed to make some tenuous friendships.

And thus began a lifetime of masking.

Now that I’m coming to terms with my diagnosis—or half-diagnosis, really; more on that in later posts—it’s really, really fucking obvious how autistic I am, and particularly how autistic I was before I learned to mask. Horrible sensory issues as a kid? Check. Trouble communicating? Check. Trouble fitting in with peers? Check. Trouble with eating/toileting? Double check! Special interests/fixations? Hell yeah, triple check! I’m autistic as hell, only it wasn’t recognised because, well… My therapist didn’t think I needed it to be (I’m still processing how I feel about that).

But you know what? I wish it was recognised, because at least then I would have had a reason, an explanation. Instead I was left to stumble blindly through the realm of social interaction with my hands tied around my back, constantly told I was doing the wrong thing but never knowing why. I do know why, now—I’m autistic! And it’s amazing, because now I have a reason. When I was reading stories of autistic people—particularly women with autism who were diagnosed as adults—it clicked on a deep level, in a way that felt so right, and the relief was immense. The more I read the more relieved I feel, and the more I feel like I belong, like there’s others out there who just get it. I’m learning what my stims are after a lifetime of masking them; I’m learning that it’s okay to be overwhelmed, to retreat and need time to recharge, to not be able to eat certain food or touch certain textures. It’s a journey and while I’m only at the beginning, I’m hopeful about the future.

This blog will be exactly what the title says—thoughts of an autistic Australian, diagnosed as an adult, and working out what that means for her. Expect a lot of late-night rambling (like this post!) that probably makes little sense, but if someone out there reads it and feels a bit better, then I know I’m doing something right.

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