Feminist Aspie

Invincible: On special interests and secret weapons

Just to warn you, what you’re about to read is sort of a far-too-soppy post about love. I don’t mean romantic love, though. I don’t even mean platonic love, although I could just as easily describe how the love and care and support and patience of family and friends is absolutely invaluable when things get tough. But today I want to talk about something else entirely; the unique, concentrated, powerful, hard-to-articulate feeling of an autistic special interest.

The giddy joy of the initial phase of research-research-research-consume-consume-consume, the flappy stimmy delight of engaging with it again or in a new way, the happy relief of wondering whether you have special-interest-feelings for the thing anymore only for them to come rushing back at the first sign of new material, the excitement of talking about it to someone who’ll actually listen, the occasional realisation that I love this so so much that I don’t know how to begin conveying it to others, all that makes special interests valuable in and of themselves. Every so often I encounter neurotypical people who talk about special interests as if their only value is that they could be made into a career, usually followed by neurotypical parents of autistic children bemoaning the fact that not all special interests can be “made productive” in this way – something that I think is also true of my own even as an adult. But so what? Neurotypical children (and adults) are allowed to play and relax and have fun without having everything they like turned into either a job or therapy, so why can’t we? Even if that’s all a special interest does, it is still so, so valuable.

For me though, even as an adult whose special interests have absolutely no relation to my career choices, I find that they are productive in other ways. One of them in particular has worked wonders with my university social life and my general ability to strike up a conversation, for example. But again, it’s not all about meeting the requirements of a neurotypical world. Sometimes, it’s about getting through the impossible and surviving that world without falling apart. And for that, that feeling is a not-so-secret weapon.

This isn’t the case for everyone on the spectrum, but my special interests are quite consistent. I know they’re there, always, if I need them, and no matter what the rest of the world is doing to me at any given moment, I know that I have something to cling to. Something safe, but more than that, something that will make me incredibly and undeniably happy despite everything else. Yeah, it’s a crutch, but so is alcohol and dominant society gives people flak for not partaking in that one!

Past experience has shown me time and time again that I can get through pretty much anything armed with my earphones and special interest material. This feels a bit like a superpower. Not only can they get me through pretty much anything but they can also sometimes be the reason I’m trying to overcome something huge in the first place – my other big special interest goes against all my sensory issues, and yet I go through with it because I’m like a moth to its flame, and I cope because the cause of the problem itself is also like super-effective stimming. It’s a confidence thing too; in theory this shouldn’t work, but in practice it always Just Does, and the obstacle in front of me is downgraded from “basically a meltdown on a plate, literally impossible” to “really really difficult and at times it seems impossible but you’ve got this, your own obsessions have got your back”.

My brain last week was weirdly like the setting of one of those old legends; the most terrifying beast of all had returned far stronger than ever before and brought the whole city to its knees, but the beast was slain (er, for another year…) by a force that was, against all the odds, even more powerful still.

A force that I think of as love.

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Wibbly-Wobbly Shutdowny-Wutdowny Stuff

This post is really long and unfocused and generally just a bit of a wreck, for reasons that will become apparent. Apologies in advance. So here’s how this week has gone.

Monday. Easter Monday, everything’s shut, I’m just in my room doing this week’s reading. It’s almost the end of term – and by “term” I mean “a period of exams, then a couple of weeks of just lectures, and then full term” so in practice I’ve been in Grown-Up Uni Student Living Away From Home mode (context: I’m currently on a year abroad in France) since the new year. I’m kinda crashing a little bit. I wonder how I’m supposed to manage Proper Adulthood if I can only just get myself through a couple of months away at a time. But I’m going home soon. Really not long now.

Tuesday. A couple of particularly stressful classes in the evening. Also, turns out the weather forecasts were right. The sun came out. And stayed out. Fuck. Fuck. Here we go again.

Wednesday. I get my essay done on time, but only because several lectures yesterday and today were cancelled. I’ve just had absolutely no energy recently. But regardless, it’s all worked out in the end. I go to the class, followed by a short lecture. I was going to clean my room when I got back, and then didn’t. It’s really bright and warm outside, and it’s freaking me out, mainly just worrying about the months to come rather than the present. It’s all over the internet, too; it feels like an addition to my general sense of “I’m doing all of life wrong in comparison to these people”. But hey, at least I’ve got this week’s deadlines out of the way.

Thursday. A morning spent trying to make myself clean my room and ending up just repeatedly watching the same YouTube videos over and over, vaguely looking at Twitter, and trying to work out where all my energy’s gone. Eventually, a friend from uni back home floats the idea of “weather” over Facebook. I realise he’s probably right, feel horrible about the sheer inevitability of impending summer, but this ends up motivating me into a prove-him-wrong/go-into-denial burst of productivity. I make a playlist, thoroughly clean my room, spend a little while agonising (by my standards) over what to wear because now I have to actually go out there, and head off to lectures feeling quite proud of myself. The area around the university building is really busy, probably because it’s opposite a park, but it wasn’t the horrendous journey I’d prepared myself for. While I’m at uni, someone asks me (in French) to direct them to the toilets, and I only really manage to do so with gestures and pointing. I spend the rest of the lecture worrying about how I can understand this language really well now but often can’t speak it totally off the cuff and unscripted, and it feeds into that fear of How I’m Going To Do Life that I still haven’t managed to shake yet. I’m startled by the traffic noise on the way home; I don’t know if it’s got busier since it’s got warmer, or if I’m just more sensitive. I get some shopping on the way in, I have dinner, I briefly go to a friend’s room and we mainly just talk about uni. I come back to my room. I’m fine. Just tired, and too bloody anxious to make myself go to bed because then tomorrow will happen and I don’t know if I can deal with tomorrow. Friend back home eventually talks me through getting into bed and watching some YouTube videos for a bit. It sort of works.

Friday. Still wake up before my alarm – thanks, brain. And I don’t really feel any better for having slept. Friday’s quite a long day, but regardless, I’m feeling really anxious right now and think following a structured routine at uni will make me feel better, as it briefly did yesterday. It’s warm out, and bright, and crowded, and there are loud motorbikes everywhere. I arrive at the lecture hall and it takes me a few minutes to calm down; eventually, I send out my weekly Snapchat story speculating over whether or not this particular lecturer will even turn up this week (he does). My head is killing me, I’m feeling really drained and anxious and awful and want to curl up somewhere dark and cool and quiet and not have to worry about All The Things. In the break, I refill my water bottle. It doesn’t help. I don’t get much of the second half of the lecture at all; at some point I think “I can’t focus anyway, I might as well just go back after this one and try and sleep”. I get myself back to my room with a combination of London Grammar, muttering to myself and miracle power; I’m thankful I’m on my own and don’t have to explain myself to people, because saying meaningful things verbally wouldn’t happen. I’m in. Window open. Shutters all the way down. Pyjamas. Bed. Right hand scrambles around the table for earphones. YouTube rain noise. Safe. Safe.

I open my eyes. I try and think back to earlier. I didn’t realise until now just how overloaded I was. I’d properly, properly shut down. Did I fall asleep or pass out? Is there a difference? I feel rested, anyway. I’m not going to make the other lecture now, and the idea of going back out there is unthinkable, but I can probably start the next lot of reading. I do, eventually. I encounter a photocopying issue, go to ask some friends here, and then realise I can’t because they (doing different options) think I’m still in a lecture, and I don’t want to have to explain myself, so I ignore it. I’m productive that evening. I get some reading done. I accidentally start a hashtag, and get ridiculously excited when other people begin to use it. I Skype my parents, and put on a half-convincing Everything Is Fine act. I post a relevant article on the Facebook group the people here set up for ourselves. I have a Facebook conversation with a friend back home about the pressure to pass for neurotypical, and how impossible the world seems right now, and it culminates in a full-blown crying/panicking session. I suppose I sleep at some point.

Saturday. It’s overcast – though apparently not for long – and none of the vaguely-planned socialising ideas have come to fruition. Thank goodness. I still can’t do all of life, but I can do today. Just think about today. I make slow but steady progress with reading. I do some file-backing-up. I vaguely plan out a blog post (entirely separate from this one) and can’t motivate myself to write it up fully. I realise I need to do some shopping, and greatly underestimate how silly an idea it is for me, in these circumstances, to attempt the supermarket on a Saturday afternoon. On the way there, someone I’ve only met a couple of times stops to ask me (in English) where a mutual friend’s room was, and it startles me because I can’t place his face and can only blurt out a room number. The supermarket was, at least, survived. A car beeps at me on the way back, the only logical explanation being that I was existing outside whilst female, the noise startles me and I run off. When I get back to my room, I message the mutual friend to finally establish who the guy who spoke to me was, and that means vaguely admitting how I’m feeling, so it took several drafts. Eventually I do some more reading. I go on Tumblr for a bit. I open WordPress, intending just to vent and make a quick point about shutdowns. I write, I write, I write. I write for too long. I think I really need some sleep.


Okay, that really wasn’t supposed to go on for that long. Sorry. Anyway, there is a point to all that, which is that during sensory overload, before, after a shutdown or even a meltdown, sometimes even during, abilities vary. I might have typing spoons but not verbal spoons, work spoons but not people spoons, or the opposite. This also varies from person to person, always depending on a million and one other factors because we’re multi-faceted human beings. I often find myself beating myself up about this, or feeling like I have to continue an Everything Is Fine act, because if I did this one productive thing or seemed fine when communicating with someone earlier, what will they think if I’m just suddenly not okay now? It’s a habit I need to break.

To totally butcher a Doctor Who quote, neurotypical people assume that shutdowns are a strict progression of in to out, but actually, from an autistic viewpoint, it’s more like a big ball of wibbly-wobbly… shutdowny-wutdowny… stuff.

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Functioning Labels 101: What’s The Big Deal?

If you’ve seen the #HighFunctioningMeans and #FunctioningLabelsMean Twitter hashtags, or more generally read or listened to a discussion by autistic people about functioning labels, you’ll know that, well, a lot of us really don’t like them, so I thought I’d write a 101 post about why that is, and what the alternatives are.

Wait, what’s a functioning label?
Many autistic people find themselves at some point being described as having “high-functioning” or “low-functioning” autism. Which label is given to the person can depend on a number of arbitrary factors, but often involves verbal ability, ability to live independently, and (especially in children) academic ability. In other words, functioning labels are basically another way of saying whether or not you think a certain autistic person can pass for neurotypical.

What’s so bad about functioning labels?
Well for a start, “passing for neurotypical” should not be the goal. We’re not defectively neurotypical, we’re autistic, and society needs to accommodate that. Being neurotypical should not be the only correct way to function. Calling an autistic person “low-functioning” is putting them down because they’re autistic. Meanwhile, calling an autistic person “high-functioning” works in much the same way as the “you’re not like other girls” trope – it sounds like a compliment and may well be intended as such, but in reality, you’re “complimenting” the person by insulting other people like them, which only serves to teach self-loathing and harmful attitudes towards those other people.

Having said that, I would argue that “high-functioning” is not only a thinly veiled insult, it’s a threat. People who cannot or will not pretend to be neurotypical to make you comfortable – the so-called “low-functioning autistics” – are treated appallingly in our ableist world; because their disability is visible, their personhood, feelings and strengths are ignored. Those of us who are more able to pass for NT more often – the so called “high-functioning autistics” – escape much of the worst of this hatred, but at a price; because we are accepted as people with feelings and strengths, our disability is ignored. When our autism is visible, if we openly discuss it, or – heaven forbid – if we request an accommodation, we’re told we’re over-reacting, we’re manipulative, we’re over-sensitive, we’re selfish killjoys; basically, we’re told we’re faking it, and should just try harder to miraculously not be autistic. In short, “high-functioning” means “act neurotypical at all costs, or we’ll see you as Really Autistic, and you know how we treat people who we think are Really Autistic”.

This binary stems from the refusal of abled people to recognise that disability and personality can co-exist – in fact, they ALWAYS co-exist, because disabled people are people. (And if, as an abled person*, you now want to correct me on my language because people-first requires literally putting the word “person” first, maybe think about why you feel the need to go against all syntax to show that in your words, and how instead you could show that in your attitudes and your actions.) It’s also used to silence autistic people standing up for themselves and their rights as a whole; we’re either too low-functioning to really know what’s best for ourselves, or too high-functioning to “count” as autistic (unless they want to include us in scare statistics, of course!) so in the end, the only ones that neurotypical people actually listen to are… well, neurotypical people.

Surely there’s some truth in them though? You’re not like my child!
There is a good reason why I’m not like your child, or anyone else’s child, or anyone else in general; every person is different. Autistic people are people. Therefore, every autistic person is different. I am an adult; of course I’m not like your child, I’m not even like myself as a child anymore. Anyway, leaving that aside, not only are functioning labels harmful, they’re also wildly inaccurate. Here’s a quick test, which I first saw by Musings of an Aspie but have also seen by various other autistic people online, in which I’m going to describe two autistic people.

Laura is verbal, and lives independently. Over the past few years she has undertaken a variety of responsibilities and committee positions, some related to her special interests, and has used these to develop an active social life. Laura is highly organised and rule-orientated, characteristics which have greatly helped her in her studies. She very rarely has full-scale meltdowns, and given the time and space, she is virtually always able to deal with shutdowns and the aftereffects of sensory overload by herself.

Faith is often anxious, particularly in social situations and crowds, and rarely leaves home without her earphones. She often prefers to communicate by typing rather than talking, and will avoid the phone wherever possible. Faith sometimes struggles to keep up with everyday self-care/household tasks, which can lead to overload in and of itself. She has a habit of pacing around her room on her tiptoes, particularly to music, and spent a large portion of last night listening to one song on repeat and spinning.

Based on these descriptions, one of these women would be considered high-functioning. One would be considered low-functioning. These women are both the same person, more specifically me. And that last part, about listening to one song on repeat? Muse are back! 90% of the fandom would have been doing exactly the same. The only reason “Faith” would be seen as weird for doing so is because of the additional stimming as well as the rest of her description; in other words, she’s already being seen as “low-functioning” so even the most innocuous of new information is automatically used to support that existing bias.

I include that last point to show how much of our “functioning level” is highly context-dependent. Everyone sometimes acts differently or feels more or less able to cope based on their mood, stress, events in their life, illness, being hungry or tired or uncomfortable, or even depending on where they are or who they’re with. As @theoriesofminds notes, functioning labels mean “how was your day going when you saw the person who diagnosed you”. It’s random, it’s arbitrary, and it’s based on two stereotypes in which no person wholly fits. So no, there isn’t much truth in them at all!

Okay, but some people do need more/less/different support to other people; how else can I acknowledge this?
As I said above, every autistic person is different, so in my opinion, the only way to accurately get across the support someone needs is to talk about them as an individual. For example, based on me again (though not my real name):

Gemma can communicate verbally, though in many cases finds typing easier, and finds the phone particularly difficult. She lives independently, but sometimes struggles to keep up with everyday self-care/household tasks. Gemma is often very anxious, particularly in social situations and crowds, but she very rarely has full-scale meltdowns, and given the time and space she is virtually always able to deal with shutdowns and the effects of sensory overload by herself.

Having said that, the support often depends on the situation. For example, in exams, I don’t need any particular accommodations, but another autistic person may need to, say, take the exam in a different room away from the distraction of other people. In parties, I might need my friends to occasionally check I’m okay and know to get me out of there/what to do if things go wrong, but another autistic person might not need any extra help at all. In short, functioning labels can be replaced with “you should be aware that this person is autistic, and in particular they have Autistic Traits A, B and C and will therefore need Supports D, E and F” and again answer any further questions based on the person themselves.

To sum up:
Functioning labels are used to demean and silence autistic people; they hold up “pretending to be neurotypical” as the ultimate ideal,and are based on two opposing stereotypes which no autistic person wholly fits. In addition, they are inaccurate due to being highly context-dependent; in the examples I use above, a band changes my perceived functioning level. Seriously, that’s how fragile these things are. As an alternative way of describing the strengths, weaknesses and support needs of the autistic people in your life, try talking about them as individuals, and actually describing those strengths, weaknesses and support needs rather than trying to force them into an ill-fitting box.


*I say “as an abled person” because some people with disabilities to prefer to be called “people with disabilities” and I don’t have a problem with that – it’s not what I use myself, but if that’s how other people want to refer to themselves, that’s their business, not mine. However, what I DO have a problem with is abled people reading posts and articles about the ableism they’re perpetuating and essentially reacting with “you’re the one who’s being offensive to yourself because I can’t see ‘disabled people’ as people”.

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#DDoM2015: We Are Not Just Things To Be Dealt With

TRIGGER WARNING: Abuse, including child abuse, murder and references to autism “therapies”.

Tomorrow, 1st March, is the annual Disability Day of Mourning, organised by disability rights organisations such as Autistic Self-Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund. Disabled people organise vigils and read out the names of disabled people killed by their parents or caregivers; a list which grows year on year at a horrifying rate. It’s reached the point where ASAN has compiled an Anti-Filicide Toolkit; the point where we need to actively teach people not to murder us for being who we are. Worse, when such a killing reaches mainstream media, the world reacts not with horror but with sympathy for the killer for dealing with us for so long – that is to say, for not doing it sooner – and their sentences, if they are even given, are lighter. The victim, meanwhile, is seen as nothing but a burden, a problem, a thing to be dealt with.

Sadly, this awful thought pattern shouldn’t come as a surprise when you consider the way we think about disabled people.

For example, autism is far too often considered from the point of view of a neurotypical outsider, rather than from the autistic person. Our sensory processing differences are rarely even acknowledged; our coping mechanisms are seen as “behaviours” which are different to neurotypical behaviours and therefore must be stopped. Our communication methods are dismissed; we are framed as deficient for lacking fluency in neurotypical non-verbal communication, yet neurotypical people make no attempt to learn ours, even for those people who can only communicate non-verbally. Even if we are diagnosed young, we often only learn about our own neurotype from the point of view of someone in our position via the Internet, for those of us able and allowed to access it.

When many neurotypical people talk about “the autism community”, they view it as including neurotypical people themselves, not as allies but as the main voices and authorities. The focus is on “autism parents” and “autism families”; not autistic people themselves, because we’re the things to be dealt with. Sometimes I even see phrases like “families with autism” (to describe families where one person is autistic), just to make it absolutely clear that they see autism as a thing to be dealt with by neurotypical family members.

The biggest voice of all is the neurotypical-run organisation Autism Speaks, despite being abhorred by the vast majority of autistic people for reasons outlined here; amongst them, a video called “Autism Every Day” in which a (then) board member talks about wanting to drive herself and her autistic daughter off a bridge, stopping only because of the effects it would have on her other, non-autistic, daughter. She says all this in front of her autistic daughter; nobody thinks of her as listening and understanding, because she’s not seen as a human, she’s seen as a thing to be dealt with. Just four days after the release of this video, Katherine “Katie” McCarron was murdered by her own mother. In November 2014, London McCabe was murdered by his own mother too – by being thrown from a bridge.

Autism Speaks, amongst others, signifies autism using a puzzle piece. Because we’re puzzles to be solved. Things to be dealt with.

And how are we dealt with? Abuse (abuse trigger warning for all links in this paragraph). Institutionalisation. The unimaginable horrors of the Judge Rotenberg Center. “Therapies”, like ABA, aimed at making autistic people outwardly act neurotypical; because what’s on the outside is all that matters, we’re not seen as having an “inside”, we’re seen as things to be dealt with. “Quiet Hands”. I’ve even heard of clicker training – yes, as in clicker training for dogs – being used. Ultimately, the result is conditioned compliance. The result is people feeling unable to say “no”.

They don’t really see us as people, and overcompensate in their language. As a general rule, autistic people prefer identity first language, but many neurotypical people often actively argue against this, telling us time and time again that we’re somehow being offensive to ourselves, even in response to our words about the aforementioned abuse. Their sentences do all sorts of gymnastics to avoid the word “autistic”- person with autism, person living with autism, person who just so happens to have autism – and all I hear is “I can only see you as a person if in my mind I push your autism as far away from you as possible, because it gets in the way of my view of you as a person”. Again, things to be dealt with.

Those of us who are verbal and who can pass for neurotypical are categorised as “high-functioning”; it sounds like a compliment, but it’s a trap. It means we’re put on a neurotypical pedestal, deemed “not really autistic” or “recovered” (Autism Speaks are still happy to count us in their scare-statistics though…) and therefore not taken seriously. Our differences are still, suppressed, openly mocked and used against us, but when we acknowledge them ourselves – for example, if we request accommodations – these same differences are denied totally, and we’re told we’re over-reacting. “High-functioning” is, ultimately, a threat; you know how we treat the autistic people who can’t or won’t pretend to be neurotypical, it says, so you must pretend – at all costs. The impact of those messages is so hard to undo, even when you know rationally that it’s wrong and ableist for people to expect that of you. And frankly, it’s exhausting.

Most people don’t think about autistic adults at all; media focuses almost entirely on children (or rather, almost entirely on the parents of autistic children…) and representation of autistic adults in fiction is usually very one-dimensional and stereotypical, and rarely involves input from actual autistic people, because it’s aimed instead at neurotypical people as “inspiration”. We’re not considered a part of the audience, we’re just a one-off “inspirational” plot line to boost ratings. We’re things to be dealt with.

This all means that everyday, unquestioned, “normal” expectations – how experiences should be, the amounts and methods of everything you should do, how you should feel in some cases – do not include us. The exclusion is subtle, and usually accidental, but it’s there, because society at large doesn’t consider that humans exist with different needs which need to be accommodated. In the UK, only 15% of autistic adults are in full-time paid employment, and of course there’s the social aspect, which cannot be measured with numbers. We keep quiet, partly because we know we won’t be taken seriously, and partly because we were never given the tools to ask for help.

Neurotypical people use this false high/low functioning dichotomy to silence us; if we speak out, they think we’re clearly too high-functioning to count, and Not Like Their Child; never mind that most adults are not like most children, and no person is the same as any other, and they’re neurotypical themselves so have no right to say we’re not autistic enough to be part of “the autism community”. Too often, “autism experts”, or to use Autism Speaks’ phrasing “autism champions”, are neurotypical – be they professionals or parents – because they have the experience of dealing with us.

Our own activism is dismissed as too negative or political because it goes against widely believed autism narratives, or dismissed as not real or a fringe issue because, due to the inaccessibility of the neurotypical world, it mostly takes place online. We’re stereotyped as lacking empathy, tact and compassion, and these stereotypes are used against us. We’re always the ones apparently failing to see other points of view, even though neurotypical people built and maintain this society to accommodate only themselves. Neurotypical and autistic perceptions are different, but it’s always ours that are deemed to be wrong. We’re too impolite, up until the point where we’re just compliant. We’re too vocal. Too selfish. Too sensitive.

Autism Speaks switched hashtags in a (failed) attempt to escape the voices of actually autistic people speaking, so we know they can hear us; they’d just rather we shut up. When mainstream media does listen to us, it requires the “balance” of comments from Autism Speaks. We have to fight our way into the conversation about our own lives. This only demonstrates that it’s not actually about us. It’s never been about us. We’re not the subjects, we’re the objects. The things to be dealt with.

With all that in mind, is it any wonder so many disabled people are dying at the hands of the people who claim to love and care about them the most? The whole way we think about disability frames us not as people with feelings and needs and rights, but as things to be dealt with, whatever the means.

This has to change. Ableism kills.

The list the names of disabled people murdered by their parents or caregivers remembered tomorrow can be found here, alongside more information about the Disability Day of Mourning 2015.

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Lost In Translation

“Do you want to go get a coffee?” I want a coffee. I want to have a chat with you. I want a date with you.

“I had a nightmare on Friday.” I had a really bad dream on Friday night. Friday itself was awful.

“Don’t come unless you really want to.” Come, but only if you really want to. Please please please come. Please please please don’t come.

“It’s at 10.” We need to arrive before it starts at 10. We need to arrive at some point after 10. We need to arrive somewhere else entirely for pre-drinks at 9, and I have no idea what’s happening after that.

“This is against the rules.” This is against the rules. This is technically against the rules, but everyone does it and literally nobody cares – I mean, I’m only a sign, I can’t stop you – just use commonsense and don’t do anything dangerous, disruptive or harmful to others.

“I’d hate me if I were you.” If I had problems interpreting neurotypical language like you, I’d be really annoyed at me because I’m sometimes unclear and don’t say what I mean. Quick, reassure me that you don’t hate me. I think we’re a bit of a mismatch and you should direct your affections elsewhere.

“BYOB.” Bring your own booze. Bring your own beverage, whatever that may be.  Bring your own booze, but if you just want soft drinks, we have those already; they’re supposed to be mixers, but nobody will mind if you drink them on their own. Also bring cups. We have cups, you don’t need to bring those.

“I’ll just wait for everyone to settle down…” Quite a few people are still arriving and/or doing other things, so I’ll wait a few seconds until they’re finished. You there, the one that’s just arrived and is still ordering her diet coke, hurry up and sit down.

“Oh, you came, thanks so much!” Thank you so much for coming. What are you doing here?! YOU ACTUALLY CARE!! You’re creepy.

“Do you want to go get a coffee?” I want a coffee. We haven’t had the chance to talk in a while and I want to catch up. You asked me on a date a while back and this is me reciprocating.

(Inspired by this Dinah The Aspie Dinosaur comic, and also by my own cluelessness)

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You Don’t Know What It’s Like

(Sidenote: This is in response to a conversation that’s taking place amongst people I know IRL, and if I can somehow figure out a way to communicate this message to the people that really need to hear it, I may remove this post from the blog for anonymity reasons)

You don’t know what it’s like to have to choose between spending time with friends, or in a community which purports to include you, and not putting yourself through huge levels of anxiety at best and a meltdown at worst.

You don’t know what it’s like to look forward to it anyway, because it’s all you’ve got, and sometimes it hasn’t been too bad; you don’t know what it’s like for “I probably won’t freak out too much, and if I do there might be a way around it” to be the very definition of “looking forward to it”.

You don’t know what it’s like to put on your favourite clothes and your favourite music and everyone else’s favourite neurotypical-passing brave face and persuade yourself that you will have fun tonight, only for it to go as badly as, deep down, you knew it would all along.

You don’t know what it’s like to feel out of sorts for days and to blame yourself for it because you knew you couldn’t handle it and you should have stayed at home. Again.

You don’t know what it’s like to have had a recent meltdown on a loud, crowded, chaotic, drunken night out, to remember how that felt, and to not want to just relax and try again next time.

You don’t know what it’s like to feel isolated and lonely even when you’re literally living amongst the biggest social circle you’ve ever had, and more than likely the biggest social circle you will ever have, in a city with seemingly infinite opportunities, because all they ever want to do is that one kind of socialising mentioned above.

You don’t know what it’s like to suddenly do a U-turn and start blaming yourself not only for going, but also for not going.

You don’t know what it’s like for people who care about you to think “Please don’t feel pressured, it’s okay if you don’t want to come” is enough; it doesn’t occur to them to find alternatives that don’t need to come with a warning. You don’t know what it’s like for them to think “You don’t have to drink” is enough; it doesn’t occur to them that if everyone else’s night is revolving around the idea of getting drunk, you’re maybe going to feel a little bit left out. You don’t know what it’s like for people to think not literally forcing you to do things you don’t want to means that they deserve an ally cookie.

You don’t know what it’s like to feel selfish for even thinking about this issue, for not just going with the majority and accepting you can’t always have your own way and compromising, even just in your own head, when all your life all you’ve ever done is fucking compromise.

You don’t know what it’s like to be feel like you’re judgmental and anti-fun, because you’ve heard people talk badly about others who stay quiet on the sidelines and don’t drink and don’t get involved much, and maybe they’re tolerating it from you because they know you’re autistic, but even so, that’s all that you are. Tolerated.

You don’t know what it’s like for people to assume you just don’t want social interaction, because you’re autistic.

You don’t know what it’s like for people to assume you’re just bad at social interaction, even though you’ve lost count of the number of times you’ve left an overloading event only to sit and talk for hours with your best friend back in halls, and the number of times you’ve arranged lunch or coffee or cinema or so many other things with individuals or smaller groups.

You don’t know what it’s like to have the problem framed as just a fact of autistic life, a sad tragedy that cannot be resolved, because nobody stops to wonder if they’re part of the problem, however small. You don’t know what it’s like to be told, in whatever way, “you can’t just change society” by countless people who, themselves, constitute “society” – to paraphrase a friend, we are disabled by you.

You don’t know what it’s like to be told how complicated you’re told it is to do one thing, yet how easy it apparently is to sort out pre-drinks, a bar, a club, have a few back-up clubs in mind in case you don’t get into the first one, and the nightbus route home, all with increasing alcohol levels as they progress through the night – impressive if you ask me, especially given the rate at which other suggestions are dismissed because nobody can be bothered to organise them.

You don’t know what it’s like to be told to just arrange it all yourself and to actually do so, only for it all to fall apart later that day in favour of Drinks In Someone’s Room, Part Infinity, when you know that’s going to involve more people in one small space than you can manage, and to have people reassure you that it’s all going to be totally okay because you can just bring Diet Coke. You don’t know what it’s like when the Diet Coke doesn’t miraculously level out your sensory input, or how frustrating it is when, inevitably, it ends badly.

You don’t know what it’s like to, after all that, resign yourself to taking the path of least resistance and play along with the “autistic person can’t control their emotions and doesn’t have empathy and threw a tantrum and now they’re really sorry” trope, and try in future try to be more calm and tactful when raising the issue, which of course usually means “don’t raise it at all”.

You don’t know what it’s like for people to refuse to hear this unless you have positive solutions, when this exclusionary system of socialising has become so unquestioned, so normal, that nobody can conceive of anything else.

You don’t know what it’s like to be the inconvenience.

You don’t know what it’s like to be the afterthought.

You don’t know what it’s like.

You don’t.

So don’t fucking tell me that I have to accept it.

21 Comments »

Where I’ve Been: A long whine about my brain

Long time, no see! Again. I’m sorry for disappearing off the face of the metaphorical planet. Again. This post will basically consist of me whining about my brain. Again. Having said that, I’ve been meaning to write this post for quite a while now, and with my blogversary this Tuesday and no sign that I’ll magically be really motivated and Good At This again any time soon, I suppose there’s no time like the present! Basically, I want to try and explain from scratch some mental-health-ish problems I’ve been having, as if explaining them to my parents, because that’s my eventual aim before I leave home again next week; I struggle with finding the right words verbally at the best of times and as you can probably imagine this is a particularly hard topic to find words for, so I’m hoping that even though they’ll probably never see this post, it will help to structure everything in my own head. This is also difficult, so I’ve ended up with a really long, quite whiny post, so I apologise for that; I also wanted to offer an explanation for my constant disappearances, so I guess I’m reaching out to people here too.

When I’ve spoken to friends, I’ve called it “brainbug” just because I don’t have any more concrete terms, so it’s worth noting at this point that despite that word, I haven’t totally ruled out the possibility that it’s not a “bug” at all but rather autistic burnout or something else along autism-related lines (that’s also why I’ve used the tags I’ve used). I usually lean towards the idea that it’s something else, though, mainly because unlike autism, I see it as a Bad Horrible Thing that I’d gladly get rid of in a heartbeat. I’ve spent a while tonight planning out this post, and I think I’ve managed to split the brainbug into three main sections, although they’re all quite interlinked:


1.) The anxiety stuff. In many ways seems to be part-and-parcel of life on the spectrum. Sensory issues are a thing. Personally, I panic in crowds, I don’t handle lots of loud conflicting noises well, and the reason I couldn’t sleep on Christmas Eve was less to do with excitement of the next day and more to do with the jumpers we were all going to wear (this seems really silly to me in hindsight, because those things were actually SO comfy!). To an extent, this is not new. Yet it’s increasing, slowly but steadily over time – my anxiety and fear around this stuff has gone through the roof, even though my actual tolerance hasn’t decreased to match.

Having said that, a large portion of my issues under the “anxiety” section aren’t really to do with sensory overload at all, but are more social; I don’t know, talking to people just seems to be harder now than it was before starting university, especially when I think back to how loud, enthusiastic and at times too-brutally-honest I was when I was younger. This may or may not be due to point 2. What really scares me is that I’ve recently realised I’ve sort of accepted terrified!Me as the new, well, me – the new normal. Sometimes I make it into a running joke, and I don’t think there’s anything wrong with that, but I worry that I’m falling into the trap of pretending everything is okay when that’s not always the case.

2.) The huge sense of inadequacy. This has also gradually become my “normal”; I’ve noticed this alongside point 1, but in hindsight it may have been around in some more subtle form since, let’s say, secondary school. At the heart is a truckload of internalised ableism I somehow still haven’t managed to shift. Everyone else can cope with this, feels at ease with that, enjoys this, doesn’t enjoy that, and definitely doesn’t do those things, so why are you so weird?! Rationally, I know this isn’t fair, but at the same time, I worry incessantly about what everyone else must think of me and, sadly, that IS the way a lot of people think.

At the same time, I always feel like I’m just not cut out to be an adult (she says, at 20 years old) because the others at uni seem to find all the basic adult-ing stuff so easy and can deal with that and their studies and their much bigger social lives and their societies and their sports and their applications and all the other people are all doing so much more than me, and this is much harder to just fight away with logic because usually it’s actually true. Thinking about it tonight, a lot of this is probably fuelled by point 3.

In either case, this often leads to huge negative thought spirals. Huge spirals, and hugely negative. It’s really not healthy, and probably exacerbates point 3.

3.) The near-total lack of spare brain-energy. Again, that’s a term I’ve made up for lack of anything better – I’m not entirely sure how broadly the spoon theory can be applied and I don’t want to appropriate it from people with chronic illnesses, but think of it as an at least vaguely accurate analogy. As I said above, everyone else seems to be able to handle so much all at once, not just in terms of work/serious stuff but also things like starting new hobbies and even keeping up with loads of different TV shows and film. In contrast, I don’t seem to be able to juggle all the balls at once, and if I actively try and pick something up again, it’s at the expense of something else… and this is the part where regular readers may wonder how I hadn’t managed to notice this until recently! This is the main underlying reason why the blog keeps disappearing. The other thing I’ve been neglecting long-term is my guitar; I suppose it doesn’t help that I’m not at home very often anyway, but even when I am, it’s something I always seem to put off for no real reason other than lack of brain-energy.

In the last month or so, though, I’ve realised that during my first term abroad I’ve inadvertently “dropped” every non-essential, not-strictly-scheduled, not-time-sensitive thing, up to and including my Netflix catch-up plans even though watching TV theoretically requires virtually zero effort. I do work on time because there are deadlines. I go out with friends because we’ve set a time for it. I Skype home because I do that on two specific evenings a week. I used to blog every Wednesday afternoon but one week while I was writing, plans were changed and it really set off point 2, and this is the first time I’ve blogged since that day just because the routine was thrown off track once. I do laundry roughly every week because it needs to be done or I won’t have anything to wear. I buy food and cook it and eat it because it is literally necessary for survival, and I’m really not very good at it, but at least I am actually doing this now; there were a couple of weeks this term where even that seemed impossible, and I think it’s only since inadvertently-dropping-everything that I’ve at least felt stable again in the literally-basic-self-care department.

What I’m not doing is blogging regularly or even following the Twitter feed. Or filling in and sending off endless applications for internships – I’ve done two (one rejected, one pending) and would like to get a third done, but I’m leaving it a bit late, and I have exams next month. Or doing anything else about the fact that I have absolutely no idea what I actually want to do with my life and should probably sort that out so I can start gaining all the necessary experience. Or learning to cook more different things. Or learning other useful and/or necessary adulting stuff. Or watching Buffy the Vampire Slayer – it sounds like a silly thing to think about, but I started way back in August, am really enjoying it, and don’t understand why I can’t motivate myself to watch one episode every so often when a lot of other students can manage entire seasons in a matter of days. Even my plans to re-watch all of new Doctor Who in French slowed to a stop towards the end of series 1, and come on, that’s Doctor Who, no motivation problems there. And for what? I have less work this year than I’ve had for the last two years. I haven’t managed to get into any extra-curricular activities like those I’d been doing at my UK university. And at home, all of that goes away anyway. I don’t know where the time, or the brain-energy, is going. Putting all this together, I guess I’m concerned. It makes me feel like I can’t possibly handle being an a “proper adult” which is a huge factor behind point 2.


In the last few months – since the summer, let’s say – all this has had some other effects. I’m not really sure how to word this, but emotionally, things seem to be coming to a head much more often. This time last year, I’d say I only cried during a meltdown or (for some reason) if close family members were arguing. These days, crying sometimes happens just on my own in my room (so without any meltdown-inducing sensory input), often when talking to friends online about the brainbug, but occasionally also as a direct result of not being able to Just Deal With Things like everyone around me. It’s definitely not an autistic meltdown, because I recover pretty easily and usually feel better afterwards. I’m not even sure it’s a bad thing to be expressing emotions more often; it’s just another difference I’ve observed. In addition, thanks to my year abroad I’ve made quite a few new friends, and it’s made me think about how much I pass as neurotypical – basically, I definitely used to, but now I don’t think I do. This is absolutely definitely not a bad thing, and in some ways makes things easier, although it does fuel point 2. It does concern me that verbal communication (by which I mean “actually saying what I want to say, rather than saying something else or just dropping it”) is so much harder these days, or at least more inconsistent.

I’m not consistent – and it really makes me doubt myself. Sometimes I’m okay. I don’t mean putting-on-a-mask okay, I don’t mean pretending to be okay, I mean genuinely, really okay. And even when I’m not, sometimes I can be okay for a little while; I think I’ve spent my first term in France mainly in the “not okay” zone, and yet I’ve had so many great times, amazing experiences and memories, literally doing a year abroad, making new friends, seeing the sights, going to events, and I even successfully asked for an actual literal date for the first time. How can I do all that and have such a great time and also have all this bad head stuff going on? It doesn’t help that, as you would imagine, I often don’t want to talk about the bad stuff or find it too difficult, but will happily talk sincerely and enthusiastically about the good stuff, creating an “everything’s perfect!” mask that now looks impossible to undo. Also, so many well-meaning friends have said “we all feel like this” to comfort me and/or attempt to tackle point 2 – being students, we’re all getting our first tastes of adulthood, and there’s a whole group of us facing the same challenges of the year abroad. This makes me wonder if all of the above is actually totally normal and I’m just completely failing to cope… as in point 2. Oops.

This has been going on in various forms for about 18 months – although I’m not sure exactly – but I feel like this is the first term where it’s actually beginning to interfere with my studies and other career-stuff, as well as of course hugely interfering with my participation in feminist/social justice activism even online, which is hugely important to me, and I’m really sorry I keep abandoning the blog. It’s not for lack of trying. I’ve taken a few steps mainly to deal with the anxiety, but that’s for another post (specifically the one that’s been sitting half-finished in my drafts for a month) and, whilst very helpful for calming me down, I feel like it’s doing little to actually resolve the admittedly rather vague “problem”.

At the end of every term for the past year, I think “right, when I finish this term I seriously need to talk to people at home about this” and yet I’ve never actually done it. It’s a problem with finding words, but also with timing. There is no standard acceptable time to casually bring up that yes, uni is fantastic and I don’t regret a second of it, but also my brain hates me now and I’m quite concerned. But at the same time, at some point very soon I guess I’m going to have to bite the bullet.

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Autistics Speaking Day 2014: Human

(This post is my submission for Autistics Speaking Day. There are loads of great posts on there already, and many more will be added today and over the next few days, so please go and have a look!)

Hello there. Let me introduce myself. I’m a human.

I have a name, although I don’t really use it on here. I’m a student, a blogger, a feminist, a sister, a daughter, a grand-daughter, a friend, an autistic. Not mutually exclusive.

Right now, I’m typing this because I lack the necessary executive function skills to stop what I’m doing and actually get a good night’s sleep. That, or I’m just enthusiastic about this post. In reality, it’s a bit of both. Also, like so many of my fellow humans, I spend far too much of my life procrastinating from studying. I take BuzzFeed quizzes, I tidy up, I play 2048, I make tea, I listen to music, I pace and pace and pace across the floor on my tiptoes because that’s what music does- sorry, does that sound weird? Fair enough, I suppose some people prefer coffee. But at the end of the day, I almost always somehow manage to get that essay written on time, and I tend to last longer with actually going to the lectures than a lot of my friends too; maintaining the routine helps me feel safer.

Outside of that, I play guitar (or rather, I should practice more often!), I go to a few student societies, and I quietly blog, mainly about feminism and autism, under the world’s least imaginative pseudonym. I’m currently catching up with Buffy the Vampire Slayer and I also really like Doctor Who. Really like Doctor Who. Nonononono but you don’t understand. Actually, I think you might; there’s no bold obvious line where the “slightly above average level of fandom enthusiasm” ends and the “autistic special interest” begins.

When you first meet me, I am almost definitely quiet. Nervous. Awkward. I’m better at the whole “people” thing some days than others, depending on a million and one other factors. Sometimes I feel like I can take on all the world, sometimes I feel like it’s all going to crash down on top of me, most of the time I’m somewhere in the middle. This doesn’t make me “high-functioning” nor “low-functioning”. I don’t suddenly regress, or am suddenly cured. I have varying emotions, and I have varying energy levels, being a human and all. Having said that, I find online interaction far easier even just amongst people I know in real life. On Facebook, I’m known for my love of and constant use of reaction GIFs, despite sometimes finding real-life, real-time facial expressions impossible to navigate; I don’t have any logical explanation for this, but maybe that’s okay. I mean, most people don’t find themselves having to explain their personality to people like that.

Let’s go back to emotions for a second. There still seems to be some confusion on this re: autistic people for some reason, so just to confirm, I do have them. It’s just that they’re often over- or under-expressed. I cry with laughter far, far more often than I cry with… um, crying, which is a rare occurrence. Unless, of course, I’m having a meltdown. Anger, frustration, lashing out was a real problem when I was younger, but these days I’m better able to nip those situations in the bud before they arise, and rant freely into the void of the internet instead. These days, I think it’s fair to say that my primary emotion is fear. I’m scared of talking to people, family arguments, sudden loud noises, sudden total darkness, crowds, my ex-boyfriend, and yesterday I managed to creep myself out – intentionally, in a sort of fun way – watching YouTube videos of game corruptions. But my biggest fear, for some reason, is probably that pesky heat/suffocation/being-trapped combo that, combined also with an actual over-sensitivity to temperature and humidity, just sort of gets in the way of everything far too much. But I’ve totally missed out on the whole bugs-and-spiders thing so, y’know, swings and roundabouts. Anyway, sometimes I panic and/or get too overloaded with sensory input, so I have a meltdown or, more commonly, a shutdown. If I can get out and get back to my room or somewhere else that’s nice and safe and quiet, these days I can generally handle it myself. What I can’t handle is your judgement.

Yet, despite the perceptions of autism as a tragedy, I find that the good is at the very least equal to the bad. Sound hypersensitivity means that music is even better, for one thing. Special interests are just the best thing, many of which have stemmed from music, although of course there’s Doctor Who too. And I’ve grown to love my neurodivergent body language, even as those around me don’t understand it or, in some cases, want to suppress it because it’s weird and therefore bad or because they think some other group of people won’t like it (and they say autistics don’t have a concept of irony…). My fingers flutter or fly inwards in defence, I tap the walls, the tables, the floor, my toes bounce with my full weight whether I’m pacing in my room or exploring the outside world and I’ve never had to think about high heels, I repeat words and phrases to myself and rehearse and perfect my lines for the conversation I’m about to have, I’m jumpy and twitchy and sorry sorry sorry sorrysorrysorrysorry. Okay, so that last bit’s sort of a pain, but I’ve even found it to be a great conversation starter. It’s a thing I do; it’s a part of me as much as everything else I’ve mentioned. I’m not perfect. I’m human.

I worry about how I’m going to get my work done on time, how I’m going to talk to whoever I need to talk to without drawing a complete blank and not being able to use words, my family and friends back home, what to have for dinner, how on earth I didn’t immediately realise that remark was sarcastic, the weather, the weather, what I’m going to do this weekend, if that guy could even possibly like me back, if I could even possibly risk going to that social event that sounds really fun and exciting but also loud and crowded and scary, whether or not the world and its people can overcome and recover from the effects of kyriarchy, whether or not I can overcome and recover from the effects of that constant, constant, constant feeling I’m being judged for not being neurotypical.

My autism cannot be separated from my humanity; my autism is a part of my humanity. To me, all person-first language does is imply that my autistic traits need to be somehow isolated from the rest of my personality for me to be seen as, well, a person. But they’re not. I am multi-faceted. I can be good, bad, flawed, happy, sad, angry, scared, so so scared, strong, weak, changing, all of the above. Most of the time, my general state of being has been influenced by my being autistic, positively, negatively, sometimes both. So, because I’m often afraid to be visibly neurodivergent in public, I’m often afraid to be multi-faceted around other people too. Of course, then I’m apparently too robot-like and stereotypical and feel bad for that too, but I digress.

I’m autistic. I’m also a person. An autistic person. And if that doesn’t make sense to you, perhaps you need to re-think your idea of what is required to be human.

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Weight of Living: Executive function, routine, and sorting my life out

(Trigger warning: discussion of food, specifically the issues I have in making food happen. Oh, and today’s song-title-used-as-blog-title comes from here!)

In a shocking plot twist, I promised blog posts in a certain time-frame and have actually delivered for onceIf all goes to plan, blog posts will be written and published on Wednesday evenings like clockwork until at least Christmas. Well, almost clockwork – at some point I’m bound to miss one, or I’ll be busy doing something else, or something along those lines – but to start with, I need to follow my new “on Wednesday evenings, I blog” rule so that it becomes a norm. Because at the moment, I am in serious need of some routine. So, why is it that many autistic people often plan and stick to fairly rigid routines? Obviously I can’t speak for anyone but myself, but I have a number of reasons. Long-term, one major reason is fear of uncertainty which essentially boils down to fear of sensory overload/not handling it/whatever else – in other words, problems with the nature of the deviation – but in this post, I’m going to focus on the routines themselves. It might be helpful to first read Musings Of An Aspie’s summary of executive function and recent post on the spoon theory.

At the moment, I’m on a new course in a new university in a new city in a new country, so in many ways I’m starting from scratch. The baseline – the straightforward bit – is formed by everything that needs to take place at certain times, so in my case that’s lectures and classes. They’re all planned out for me. But once they’ve been slotted in, I’m left with a finite block of time in which to do the work for the classes, socialise enough to not feel massively left out, blog, complete a couple of application forms for summer internships, vaguely attempt to keep up with Tumblr and my main fandoms, buy and cook and eat food, sleep, keep the place clean… Yep, it looks like I’m officially grown up. Contrary to popular belief, autistic adults exist! Anyway, if I leave it at “this is your time, this is what you need and want to do with it, go”, I will forget things. I’ll forget to blog, and then end up leaving it for weeks at a time. Or I’ll forget about applying for internships, so they won’t happen. Or, who knows, I might forget to eat, which evidently shouldn’t happen. Setting up vaguely regular times at which to do these things means I’m more likely to actually do them. The other issue with leaving myself with just an amount of time and a list of things to do with it is overload – half the time I already feel like there’s too much going on to process, so the sheer number of things I need to keep in my head means it all seems completely impossible and consequently none of it gets done. To the point that yesterday, when a special interest decided to rear its head completely out of the blue, my immediate thought was “great, another thing I’ll have to deal with” and clearly that’s not ideal!!

As a student, I’ve got used to regular cycles of new baseline of contact hours -> previous routine no longer available -> PANIC -> eventually create new routines and consequently sort my life out. The current situation is of course a little different – I’m not in the same place with a different timetable, I’m somewhere completely new and that means the general sorting-my-life out is a slow and ongoing process – but the principles are the same. It often takes quite some time to sort out; one Friday evening, I cleaned the room and thought “I’ll clean my room on Friday evenings after the lecture” but the following week, it became apparent that if I was going out on a Friday night cleaning probably wouldn’t happen so cleaning day was revised to Sunday, only for that day to end up being really busy in terms of doing the reading for the classes, so it’s been revised (as of today) to Wednesday. Meanwhile, last week, I realised I’d have my essays out of the way by Wednesday, and therefore I’d have a decent block of time to write a blog post; so now posts will be published on Wednesday evenings, and this set time should hopefully ensure that I actually do bother to write posts regularly! Everything else, over the coming weeks, will gradually also begin to slot into place.

…And once all that’s sorted, there’s the small matter of the self care stuff you literally have to do to survive. Like eating. Food is hard. On the one hand, the standard vague socially acceptable mealtimes means there’s sort of already a routine in place for remembering to eat. On the other hand, first you need to work out what you’re going to have. And buy everything you need, if you don’t have it already. And then have time and energy left over to actually make it. Sounds simple, but for some reason it never has been. The solution, as thought up earlier today: like everything else, planning ahead. I should know, when I’m buying food, what I’m going to have for dinner for the next couple of days. I should consider that on Tuesday I only have just over an hour in between classes in the evening, on Wednesday I’ll have just finished two late nights writing essays, on Thursday I won’t get home until fairly late, etc, etc. My cooking skills are somewhere just marginally above non-existent, so perhaps once a week (provisionally Fridays or Saturdays) I should try and do something different, because increasing my options is surely only going to make things easier.

It’s a slow process, but once I’ve got routines for most things, I don’t tend to have any problems with sometimes deviating from them, as long as it’s expected and vaguely prepared for. It’s just a matter of waiting for a plan that works, and knowing that eventually, everything will be so much easier.

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Abroad Whilst Autistic: A few personal observations

For the past month or so, I’ve basically been non-existent on here. This is because, well, I’m now on my year abroad with uni. Obviously I’d rather keep the details sketchy, but I’m in France, I’ve been here for two weeks, I’m studying here, I’m part of a decent-sized group of people from my university back home, and we’ve also befriended a few people living in our building from another UK university. And while I’m fairly settled now, it’s been a really bumpy ride. Anyway, I thought I’d share a few autism-related things I’d noticed along the way. These are, of course, my personal experiences (and I’d love to hear some different ones), so your mileage may vary.

  • I don’t seem to speak French as well as the others – not because of the French, but because of the speaking. As someone who can usually make words happen at least to some extent back home, I forget how frustrating it is when you can’t. I’ve been pleasantly surprised by how much of the introductory lectures I understand (although, having said that, they are specifically aimed at international students), and a lot of the time, I can say what I need to. Where things start going wrong is in exactly the same areas where I have problems even in my own language. At home, sometimes I can be thrown off by any sort of uncertainty over what I need to say (which means I can’t script before hand), an unexpected turn in the conversation, or nerves; this, at worst, leads to some mildly-incoherent babbling with frequent interjections of “sorry”. However, I don’t currently have any French equivalent for “mildly incoherent babbling” so when the same situations occur here, what happens instead is a terrified silence, occasionally followed by a frustrated yelp when the other person starts speaking English instead because, nine times out of ten, that wasn’t the problem, and by that point I’m panicking and a friend ends up intervening anyway. Hence why one person who, by chance, managed to get into the same bank appointment as me ended up carrying the whole thing, to the extent that the person dealing with us expressly wondered a.) how it could be possible that we arrived on the same day and b.) why I was so scared of her. Hence why, the first time we went to a student restaurant for lunch, I went completely blank and screamed when the person behind the counter started trying out other languages. Hence why I feel like I’m hiding constantly behind the big group, and then feel awful for it.
  • Echolalia is through the roof – and almost exclusively in French. Yep, I think I finally truly understand the various things I’ve heard about autistic people (usually children) learning speech through echolalia. There’s even more of it on nights out, probably because there’s a point where everyone else is too drunk to notice and I let my guard down. It currently mostly consists of: things I’ve read on signs, advertisements etc.; something a friend has just said in French; the French translation of something simple a friend has just said in English; and the French translation of something simple that I’ve just thought (not sure if that last one counts?). When I’m not talking to an actual person (and under massive pressure to actually get it right), I love playing with the language.
  • OVERLOAD, OVERLOAD EVERYWHERE. My ability to deal with stuff is currently little to none. Relatively speaking, I haven’t been here very long, and while I feel much more settled now than I did last week, I still feel like I’m constantly miles away from my comfort zone (282 miles, to be exact), there are a million background tasks running under the name “DEAL WITH THIS”, and that obviously takes its toll. So at the moment, I’m freaking out over tiny little things, and adult-life-stuff is even more of a mountain to climb than normal. At uni back home, the “making food happen” thing often falls apart at the cooking stage; here, it’s falling apart at the buying-food stage, although in the long run the food thing in particular has actually been less of an issue because we’ve all been chipping in and having dinner together most nights.
  • In short, it’s currently much more massively obvious than usual that I’m not neurotypical. At least to my friends – the random people I encounter once throughout daily life in shops etc. probably just assume I don’t understand French, I guess. Amongst my friends here, some of them know I’m autistic but some don’t (and the people who I’ve only met here certainly don’t, unless they’ve worked it out for themselves) so at some point I’m going to do some sort of express “hey, in case you were wondering, I’m autistic, which explains this and this and this…” Facebook post – if anyone knows of any quick, simple and not-awful Autism 101 online resources, I’d be grateful if you could recommend some for this purpose! Aside from that, I’m thinking about making a written disclosure card like those produced by Autistic Hoya, but obviously in French; or, at the very least, sitting down one day and putting together relevant French scripts which don’t expressly disclose my autism but can be used to let people know what I’m struggling with and what, if anything, can be done about it.
  • I need to learn to adapt all over again. This will take time. It’s nothing new. In the meantime, I need to get it into my head that neurodiversity is great, I’m okay just the way I am, and it’s. I know this, on paper, but in practice it’s harder.
  • People are often much more understanding and supportive than I give them credit for. I’m lucky enough to have the support of a great bunch of people, most of whom I already knew from uni, and over the past couple of weeks they’ve gradually made it very clear that I should go knock on somebody’s door if I panic, I shouldn’t feel pressured to go out every time they do, and generally that they’re not massively judging me for having the audacity to be autistic in their presence. Over the years I’ve developed a tendency to assume that people are going to be awful, but it turns out that isn’t always the case.
  • Despite doubts over the summer, I don’t regret my decision to do the year abroad at all.
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