Feminist Aspie

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.


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.


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.

The Almost Shutdown

I’m not going to be around this weekend, so I’d planned to just not write a blog post until next week. However, I have time to kill and experiences I’d like to try and make sense of, so here I am!

You know that horrible feeling where you really want to cry but for some reason just can’t make it happen? During intense and/or prolonged sensory overload, I get a very similar feeling, a feeling of “I wish I’d just go into meltdown already.” Both, at least to an extent, seem to me to be based on validation; we’re all constantly pressured to hide our feelings for as long as we can help it, so at least if we reach the point where we genuinely can’t, somebody might take notice and give you the support you need. For those of us who are neurodivergent, the insistence on hiding right up until breaking point is tenfold; we’re taught to lie that we’re okay to avoid inevitably being dismissed as over-reacting or even manipulative, and the tell-tale signs that escape anyway are often ignored or misinterpreted by those around us.

Having said that, both feelings are also based on the need for a release, and the frustration of being denied one by your own resilience.

Regular readers will roll their eyes at this sentence but just to make sure everyone’s up to speed, I don’t handle heatwaves well, which I’ve written about here and, well, generally all over the place on my blog and Twitter. Sorry about that. Anyway, with a lot of avoidance, distraction and then guilt about it later, I’ve so far evaded the threat of a meltdown or a full shutdown, but a couple of days ago I seem to have hit some sort of wall and I’ve been in what I can only describe as a constant state of “almost shutdown” ever since; so, I thought, seeing as I still seem to be thinking clearly enough to write a blog post, I might as well talk about it!

This is the weird part, for me; I feel like I’m in shutdown, but I can still motivate myself to write a blog post; in fact, having been fortunate enough to be invited to contribute to a compilation of tips for working with autistic children (EDIT: that piece has since been published on the AutismPlusLandE website and can be found here), this is realistically the second short blog post I’ve written in 24 hours. I’ve yet again developed an insatiable appetite for music as a distraction, but it seems I now can’t blog and listen to music at the same time because that’s too much input; yet I still can’t help but hear all ongoing conversations, which make me anxious because of the loud intertwining voices and chance of potential conflict. My unscripted verbal ability is very variable, sometimes minimal, but I could go to the shops with my parents this morning without incident, albeit quietly and unenthusiastically, and I even made actual conversation happen with Dad just now. I’ve started to find eating difficult but I know when I need to eat and can make myself do so. Sometimes I feel too alert, really oversensitive and overloaded and I can feel the beginnings of the vibrations of a meltdown or shutdown in my arms, but other times I just feel completely wiped out. I’ve been stimming a lot more overall – pacing around; repeating the same few lines of a song over and over again; agitated hand flapping, shushing to myself and covering my ears when I’m really overloading – but in contrast, other times I’m really lethargic. Frankly I’ve been sleeping much better than the neurotypical people around me in this heat because I’m so massively tired that once I manage to take my mind off it I’m just gone, and that makes me feel so guilty for still feeling as completely drained as I do. Talking is so much more difficult, but thinking – and writing – is almost as clear as usual.

In short, it’s a contradictory mess.

I’m thinking of this almost-shutdown as more of a “safe mode”; I don’t exactly feel brilliant, but if I stop using energy where it isn’t essential, passing for neurotypical and the like, and cut off particularly difficult tasks, I can cope relatively well until the actual problem – sometimes all but forgotten in all this – is resolved. The issue in this case is that there isn’t really a definite end point at which the constantly-overloading-thing will go away, which plays into a bit of a fear I have of being trapped too, plus the nerves and conflict-potential and reduced-ability-to-hide-away-on-my-own of a weekend away always makes me anxious beforehand anyway. At the moment, then, I’m so worried it’s going to ruin this weekend, whether it eventually escalates or not.

I’m not literally having a meltdown right now, clearly, but in terms of coping ability I’m running on empty. Something’s got to give, and if it has to be me then I just wish I’d get on with it, instead of being so so scared of it happening in the wrong place at the wrong time.

…Answers on a postcard please?

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Make Me Scream Your Screams: Why “auties can’t lie” couldn’t be further from the truth

For this week’s blog post title, I was massively torn between the entirety of the lyrics from two Muse songs; so, this is Showbiz, this is Citizen Erased, both really resonate with me for reasons I’ll discuss below, and both are really worth a listen. [SPECIAL INTEREST INTENSIFIES]

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I never really got the “autistic people can’t lie” stereotype because, I admit it, I think I’m quite a good liar. I mean, I’ve kept this blog hidden from almost everyone I know (I only know of two real-life friends, and one online friend from outside my FeministAspie stuff, who are aware of it, all by choice) for over a year and a half now. In my teens, I used to write song lyrics (in hindsight, pretty awful with a side dish of internalised misogyny) and also kept those hidden. For some reason, in the early stags of a special interest, I tend to keep that hidden too. Then there’s the usual “I’m fine” stuff. Sometimes, I think being autistic actually helps; I’m constantly fidgeting and I never make eye contact anyway, so all the traditional neurotypical-centred “tells” get lost in my usual mannerisms. Autistic Stereotype In “Not Always Absolutely True For Absolutely Everyone” Shocker.

But frankly, that’s all a little bit beside the point. This stereotype particularly bothers me because, for a group of people who are supposed to be unable to lie, we’re very rarely believed.

Autism is, and has always been, defined and discussed almost entirely from the point of view of a neurotypical outsider. We’re seen, not as autistics living in an autism-unfriendly world, but as defective neurotypicals. I’ve essentially always known my diagnosis, yet it wasn’t until I ventured into the autistic community on Tumblr, aged around 16, that I was told sensory issues are an actual real thing. Autism is seen as a social disorder, a behavioural disorder, with no thought for how we experience the world, why we behave the way we do. Hence why stimming is seen as a bad thing, meltdowns are seen as tantrums, and any attempts to avoid or minimise sensory overload are seen as manipulative.

A lot of things held up as almost universally fun, I find overwhelming. Summer. Parties. Summer. Crowds. Summer. People. Summer summer summer summer summer. I’m a giant bundle of sensory overload wrapped in panic wrapped in a very thin layer of “I’m fine, why wouldn’t I be?” because the alternative would be attempting to explain it and getting mocked and ridiculed and told I’m over-reacting. But when I’m overloading like that, I’m, well, not that good a liar; I’m too drained for that. From my point of view at least, my entire tone and body language is a giveaway; not really making much of an attempt to continue conversation, muttering to myself, fingers fluttering, that ubiquitous “sorry!” and an occasional “ugh” noise and a facial expression that’s probably very blank. Most other people, who are supposed to be amazing at picking up non-verbal communication signals, either don’t pick this up at all, or just pick up “she’s being Visibly Neurodivergent and this is A Bad Thing and she needs to stop that”. Most other people, who are supposed to be better than me at really thinking about a person’s motivations and feelings rather than taking their words at literal face value… just take my words, fabricated out of a learned desperation to not be Visibily Neurodivergent, at literal face value.

So I get desperate, I get frustrated, I get really moody and blunt and pushy. It’s not something I’m proud of, I feel awful once I feel safer and calmer, but I feel like I’ve run out of options. Everyone else seems to interpret this as “Well, as you all know, I hate fun, and I don’t have the social skills to be nice and polite and quiet about it, so I’m going to threaten a tantrum because I’m just that manipulative” when the reality is “This is really painful and horrible and I’ve managed to cope with it for this long but now I’m seriously worried I’m going to have a meltdown if I don’t get out to somewhere safe right this second”. For a long time, I even believed the former interpretation myself, and thought myself to be a pretty horrible person for acting in that way.

These problems are constructed, through viewing autism only from the outside, and then used to justify our elimination.
We’ve been taught to put “looking normal” before our own needs. To hide away.
To lie at all times, at all costs.


My Weird Heat Thing 101

Yes, I know, I know, I know. I use this blog and its Twitter for whining about the weather all the time. But I’ve just read this by A Quiet Week, about her experiences with summer-onset depression, and it made me realise that I’ve never actually attempted to explain “my weird heat thing”; I really don’t think it’s that, the symptoms really don’t match up (as I said in the comment, its presentation far more closely resembles anxiety, and I don’t have any problems with light in its own right) but it’s definitely more than just “I’m autistic, and heat and humidity overload my senses just like sudden loud noises do”, too. Actually, I’d quite like it explained myself!

So. Let’s start from the beginning, with that sentence as the foundations; I’m autistic, and heat and humidity overloads my senses just like sudden loud noises do. Except more. And for longer. And it’s much more difficult to get away. And I have no idea when it’s going to end or, once it does, when it’s going to come back. And I don’t sleep very well, to boot. In short, heat and humidity overload my senses just like sudden loud noises do, but constantly. As you’d expect, this is exhausting and draining and generally not fun, so once I do feel better (generally after a cool shower), I’d very much like to avoid the cause of it.

So I do that – or I panic about it. Obsessively.

If I can help it, I sort of gravitate towards the shade as a force of habit; if the road is small and minor enough, I’ll cross for it. Think of it as one giant game of “the floor is lava”. If I can’t do that, it’s not necessarily the end of the world, but I’ll worry about it until I can. If I have to go out there at some point, but not at a specific time, I’ll put it off. The same applies to buildings/rooms that I know set me off, although they tend to fit more into “worry and procrastinate” than “avoid”. At the very least, if heat is present, it’s always a consideration. I also end up wearing and re-wearing, washing and re-washing, a fairly small section of my clothes, those which at some point were deemed loose enough and thin enough and breathable enough to not pose a risk. And, as my Twitter followers will know, I don’t ever bloody shut up about it. It takes over.

Then the guilt and self-consciousness and self-loathing start. Because, well, it’s only June. And you’re only in England. It can’t be that bad. I mean, it’s not like it’s actually made you feel ill. You shouldn’t have to psyche yourself up to go to the shop ten minutes from here because it looks really warm outside. You really over-react, because you’re as pathetic as usual. I guess I see it as a sign of weakness that, if it can’t be eliminated, should at least be vaguely hidden. And it’s only going to get worse. Quick, magically make yourself less pathetic before it gets even worse. There’s a lot of frustration about not being able to make the problem go away. I end up feeling trapped, and that makes me panic even more; I’ve also got a bit of a thing about being trapped and/or suffocation, so it’s probably that.

What’s more – and this is where things start getting really weird – that panic arises almost to the same level at the thought of other people being vaguely too warm. Even other people who I know couldn’t physically care any less and are therefore almost definitely fine. Maybe it’s because that means it really is “that bad”, but this also crops up when it’s not currently warm where I am, when I read or hear about it in another place, another time, fiction even. So many things can “set me off”; not in a way that’s at all debilitating, just a few minutes of “okay, I’ll pretend I don’t know that information and deny any feelings related to it” to “AAAAAAGH IT MADE ME THINK ABOUT THE THING AND I’M AWARE OF THE THING QUICK MAKE ME UNTHINK IT I CAN’T UNTHINK IT” followed by “WHY DID THAT FREAK YOU OUT, SILLY PATHETIC BRAIN”. For example, the weather-related bits of the World Cup coverage sometimes set me off. Festival sets sometimes set me off if it looks like a hot day. Other people’s posts about the weather sometimes set me off. Stuff about much more extreme weather elsewhere sometimes sets me off. A particularly Tumblr post during last year’s UK heatwave explaining that yes, America/Australia, it really is that bad because nobody’s used to it, set me off pretty badly; I should probably blacklist the topic, but I have no idea how people would tag it, and it’s really hypocritical of me considering I talk about it all the time. I’ve been set off by a fairly small part of a novel before, too, although that had the effect of making me read to the end of the chapter, so the character in question would be out of there and – in theory – I wouldn’t have to think about it any more. Again, this isn’t really major, but it’s confusing. If it’s just about my own hypersensitivity, which I know isn’t typical of most people, why do I get so obsessively concerned about everybody else?

Not really sure how to conclude this, other than “answers on a postcard please”. Sometimes it feels like it’s such a big deal and it’s inescapable, and other times it feels like a minor inconvenience that sometimes freaks me out a bit too much. At any rate, I guess this post will come in handy for linking to in future posts. Because believe me, this topic’s going to come up again… and again… and again…


Crashing Down To Earth: Sensory overload and its aftermath

It seems there is one lesson I’ll never learn: if it can be helped, don’t plan to do anything after doing something I know will be massively overloading. I mean, I know not to plan to do anything stressful. I’m vaguely grasping the concept of not planning to do anything involving other people. But when it gets really bad, even that blog post I was planning to write and that bit of work I was planning to finish are not going to happen. They won’t happen. Nothing you can do. They just won’t. Do. Not. Plan. Anything.

Generally I get two types of sensory overload (your mileage may vary):

Same reaction, different threshold. For example, jumping at a loud noise that didn’t startle anyone else. Or arriving at the lecture hall and immediately flushing up. The former is over in a split second, the latter is a bit more horrid but still fades away after a few minutes, and both are very quickly forgotten about as I generally get on with life. For me, the main problem here is self-consciousness rather than anything else.

A Huge Draining Longer-Term One. For example, arguments, unpredictable crowds, parties… oh, and that weather I’m trying in vain not to talk about. At least all the other stuff exists in finite spaces for a finite period of time, and can be escaped from. Anyway, this is where my reaction to The Overloading Thing becomes, at least internally, really different from the standard neurotypical not-liking-this-much reaction. There is, somewhere, a threshold at which a meltdown will happen, but luckily I don’t tend to reach it all that often. Throughout The Overloading Thing, I might be coping pretty well; in fact, it’s pretty likely that I’ll still mainly be enjoying the event as a whole, seeing The Overloading Thing as simply a drawback that’s worth it overall. Sometimes I even get used to it and think I’m absolutely fine.

And then I get home. And. I’m. So. So. So. Drained.

As those of you who follow my Twitter and have had to put up with my whining for the past couple of days may know, I don’t handle heat well. I mean, my body is okay; to be fair, this is probably because it’s stuck with a terrified obsessive controlling brain that only lets it out of the shade when it absolutely has no other choice, but I’ve never actually had sunstroke or similar, I vaguely remember dehydration happening on holiday once when I was like 4, and sunburn is very rare too. My brain, on the other hand, just goes all over the place. It’s an sensory overload thing, and then a panicking-about-sensory-overload thing; consequently, it both worsens and is worsened by my other hypersensitivities. I was out all afternoon yesterday at a garden party, and I had a great day, but realistically it was too much people-ing and too much sun (seriously, if you’re doing outdoors-y stuff, make sure there’s a bit of shade, it’s a tiny silly little thing that not many people understand and it’s massively frustrating) to handle in one sitting.


Still, though, I figured after getting in, having a cold shower, putting some cream on the burned shoulder and continuing to underestimate just how much water I am in fact capable of drinking, I’d feel several billion times better and could, well, get on with the aforementioned stuff I’d planned to do. I have a tendency to think “hey, looks like I survived that without a meltdown or a shutdown, hooray for me” and assume I’ll be fine afterwards. I always forget just how much a massive sensory overload, whatever the cause, wipes me out totally. “Tired” doesn’t quite cover it.

Instead, I end up doing, well, not much. Check Facebook. Check Twitter. Check WordPress. Go back to Facebook. There’s nothing new. Scroll down anyway. Put more cream on the relevant shoulder. Stare blankly at Facebook. Think “Okay, so I overdid it”. Think very little else. It’s a state of “nope, that’s it, limit reached, no more input please”. I’ve found that sometimes, for some reason, a little positive input seems to help; despite the many quiet gentle relaxing songs in existence (and, well, the “silence” alternative), last night nothing did the trick quite like this, or this, or this (which is where I got this post’s title from). I have no idea why that is, especially when there are quiet gentle relaxing Muse songs in existence too, but there you go. I even paced around the room a little, which is my standard “MUSIC IS HAPPENING YAY” stim, but perhaps less ideal when you feel like you’ve used up every last drop of energy. Senses are odd. Other than general sensory oddities, though, I tend to just… sort of… want… nothing… to… happen.

Of course, eventually it starts to get better. The only completely reliable “cure” I’ve found is a good night’s sleep; having said that, the vast majority of my Overloading Things are in some way related to big social events, which tend to either take place in the evening or at least go on until then, so that’s probably why. I suppose, eventually, a lot of time to hide away and recover and regulate would have the same effect. In a way, though, it isn’t totally over; most of the time, it gets filed away under “Things That Made You Feel Awful Which You Should Try And Avoid Where Possible In Future”. If something has gone consistently wrong in the past, I guess it’s natural to perceive it as a threat, to worry about it, to plan ahead and specifically go out of your way to avoid it. Even where that’s not always 100% possible. Or  50% possible. Or possible at all. Or possible at all with no firm knowledge of when it will become possible.

No wonder the slightest bit of sun freaks me out so much.


Autistics Speaking Day 2013: You Gotta Fight For Your Right To Party

For those of you who aren’t aware, 1st November is Autistics Speaking Day; it’s really worth heading over to that blog over the next few days for a wide range of social media posts to raise awareness and acceptance of autism, advocating the inclusion of autistic people in the ongoing conversation about us. So I thought I’d blog about something I’ve been thinking about for some time now; maybe I just notice this more because I’m at uni, but the entire culture of “proper” social occasions at the moment seems to be built around what’s actually a fairly narrow group of people.

Again, this might be more pronounced in a university environment, but “party” seems to basically mean “vaguely meet up at some point in some noisy overcrowded room, get drunk, and overwhelm all but the most extroverted/popular almost out of the group entirely”. Now there’s absolutely nothing wrong at all with that sort of thing in and of itself, I’m sure some autistic people really enjoy it, and to be honest I can find sometimes find some of it quite fun, on the right day, even if it’s basically just watching, but it seems like that’s all that there is. It just doesn’t occur to people that some of us can’t handle that much input, can’t filter out all that background noise and follow the conversation, can’t just magically know when and where to go like everyone else seems to be able to (hint: it’s not when and where the club ticket says it will be), and all sorts of other stuff I haven’t worked out how to articulate yet. Or, as I keep telling everyone, “I can’t people“. (People-ing is a verb in my vocabulary now, sorry about that.) It’s also worth noting that, at least to a certain extent, this isn’t necessarily a problem specific to those of us on the spectrum; I have several allistic/neurotypical friends who also seem to “get it” and, for various reasons, also “can’t people” even if they do manage to hide it better than I can, and in my case not liking alcohol probably plays a massive part in it too. Like I said, the whole thing is inadvertently excluding all bar a fairly narrow group of people.

Except, well, I actually can people, I’m just not very good with that one situation that’s usually the only option for people-ing. Last week, having gone to law drinks to catch up with everyone and meet the new freshers, only to spend the entire time focusing on just barely coping and intermittently screaming and despairing at the inevitability of it all, a friend and I ended up leaving after an hour, but on returning home we inadvertently ended up sitting on the stairs (she lives on the floor above me) and talking for hours. (And I don’t just mean infodumping about Doctor Who, either!!) It really made me think. This is far from a new occurrence. That post I wrote the other week in which I mentioned a party that night? As it turned out, I didn’t actually even make it there, because everyone had already gone for pre-drinks somewhere, but not where I guessed they would be, and nobody could hear their phones, and usually I keep being told to arrive later than the stated time because people logic but then pre-drinks are also a thing and they’re earlier and it’s all massively confusing, and I felt horrible about it afterwards because it genuinely seems like everyone else has telepathic communication, but then I thought – would it really kill you to just be a bit more clear about what’s going on beforehand? That issue is probably more autism-specific that the first one (literal-minded and all that), but there’s just so much that isn’t accessible to a lot of people. And when that’s all that there is, taking the sensible route and just not going leaves you feeling massively lonely.

So yeah, I’ve been thinking a lot about all this (and, I admit it, part of me just really wanted to use that blog title…) and I’d love to hear your thoughts on this, particularly if you’re autistic (that’s kinda the point of Autistics Speaking Day, after all!) but it seems to be an issue with a really wide scope and different perspectives would be great. What would make people-ing more accessible to you?

(Post reproduced on the Autistics Speaking Day blog. It’s also really worth reading Coffee Zombie’s response to this post, which I can hugely identify with.)


Optimist About This: Ramblings on special interests

So I’ve spent the last couple of weeks preoccupied with two things. I’ll get the bad side out of the way first. Recently, a certain phenomenon has been happening massively in the UK; I’m trying not to bring it up every ten seconds, but it rhymes with “feet cave” and for me it means “sensory worst nightmare”. (EDIT: It’s “heatwave”. At the time I wrote this post, that was fairly obvious given the state of my Twitter at the time, but since then several people have read it out of context and got really confused, so I thought I’d add it in.)  I really don’t help myself, either, because I sort of become a little bit (read: very) obsessed with it and then the actual problem is 90% due to the vicious circle created by me being really anxious and generally “on edge” making my sensory issues worse, making me more anxious about the whole thing, etc. Not nice.

On the plus side, especially as it’s mainly a “pointless worrying” issue, distraction works wonders (hey, why do you think I’m actually blogging for once?) and that’s where the much more positive Part 2 comes in. Introducing my shiny new special interest!

…Yep, rather predictably, it’s yet another band. (I, erm, quite like music…) I genuinely thought I’d grown out of the band obsession thing, but there you go. In fact, almost all my special interests from the age of about 13 onwards have been a variation of this. Even my non-band-related special interests are fairly “mainstream” (Doctor Who, anyone?) and to be honest I’ve always seen this as a privilege; for example the number of times at uni that I’ve ended up making friends by striking up a conversation about Doctor Who or, to a lesser extent, Muse. These days, it also means there’s already a ready-made fandom on Tumblr just waiting to be explored!!

That’s the upside of being in the early stages of the interest – the sheer excitement of knowing there’s so much out there. (In this case, I dived into the Internet expecting one album and maybe a few more videos, and ended up discovering not one but two free covers mixtapes, as well as LOADS of live sessions, acoustic versions, that sort of thing. You should see my YouTube history…) The downside to this early stage is being ridiculously shy about it, at least offline, for no apparent reason. For some reason, it seems to be my (neurotypical) brother who’s always the first real-life person to get all the infodumps; I have no idea why, maybe he’s just sort of around more often. I’m still not entirely sure where this odd secrecy comes from; I don’t really “drop” special interests when new ones happen so they end up being a pretty big part of my life,  so I guess it’s natural to be apprehensive about introducing it to the world! I also worry that yet another band obsession seems a little childish, especially after the whole Muse thing because I’d assumed I couldn’t possibly be that obsessed with another band, particularly a relatively new one like Bastille. It genuinely feels a bit like I’m having an affair (especially as I saw Muse back in May and guess who the support act was?!), which is really silly because for crying out loud you can like multiple things at once, but I digress.

Anyway, I’ve just decided that there is a point to this rambling post – special interests are awesome. Especially when you take situations like that thing I can’t talk about into consideration; honestly, I can’t think of any other logical reason why I haven’t had a bazillion and one meltdowns over the last couple of weeks. I’ve had my moments, believe me, but it hasn’t been too bad; I suppose I at least have an escape route. It’s become a defence mechanism to the point that I’m worried I’ll end up associating my shiny new special interest with the other thing and totally ruin it for myself (unlikely…). It’s made me realise,  all over again,  just how powerful and joyful special interests can be. And I have no idea what I’d do without them.

(P.S. In particular, I absolutely love this, because harmonies and drumming beats from literally nothing and layers and details details deeeetaaaails)


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