Feminist Aspie

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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The S Word, Tip Of The Iceberg

Yesterday afternoon, someone complimented me on my necklace. “Sorry!” I blurted out. After a few moments on the receiving end of her confused look, I amended my response to “Um, thanks!” I spent the rest of the day wondering why the heck I’d done that.

– – – – –

I walk mainly on my toes. I’m pretty sure I spent the first, say, ten years of my life blissfully unaware of this fact. At some point during the Asperger’s diagnosis, it was pointed out to me, or at least I read it somewhere, and then I probably went back to whichever Pokemon game was out at the time. It wasn’t until secondary school that it became a big deal. Somebody must have noticed, and somebody must have decided that it was worth obsessing over and making fun of. Having realised this, well-meaning family and friends thought the best way to resolve the problem was to magically make my tiptoes go away; however, without any actual magic powers, this could only be done through shouting “Feet!” at me every so often, and even then only for a few seconds. It didn’t occur to anyone that my problems weren’t caused by toes that hadn’t ever bothered me before, but by the people giving me hell for it. Or by other things, the loneliness, the meltdowns that then still occurred frequently, the sensory issues I didn’t know were even a thing because autism is still largely defined only from the perspective of a neurotypical outsider. All that, and everyone was interested in my foot position.

– – – – – 

Twice yesterday, I ran into the same person at the same part of the hallway where I live. On both occasions, the dialogue was the same. I saw her, jumped a little, said “Sorry!”, held the door open, and she said “Thank you”.

– – – – – 

I still walk mainly on my toes. Nothing’s changed, except now, the people I meet couldn’t care less. Apparently nobody even notices until I mention it myself. Its only impact on my life, other than never having to wear heels, was to teach me that people tend to only care about the tip of the iceberg. The bits they can see. They’d like to not see it because it’s weird and makes them uncomfortable. The rest, they already can’t see, and that’s fine by them.

– – – – – 

In between lectures this morning, I passed someone I know. He said “Hi [name redacted]!” or something along those lines. I replied with “Oh, um, sorry! Hi! Sorry!” I thought back to yesterday, in the hallway, and realised that the word I was looking for was “Hello”.

– – – – –

I’m sure I didn’t apologise too much before uni. At least, I’d never noticed it, until other people started pointing it out. Even then, I was just apologising for things that weren’t my fault, sliding “sorry to be a pain” into requests, things like that. Usually, people were laughing with me rather than at me. On its own, this didn’t bother me. What bothered me was that the growth of the S word, or at least the growth of the pointing out of the S word, coincided with a growing fear. I couldn’t put my finger on it then and I still can’t now, but I’m hurtling towards adulthood with absolutely no idea what I’m doing with my life and most of my friends graduating before me and executive function all over the place and generally not being able to take another second by the end of term, and it was scary to think about. At some point, I conflated the two things.

– – – – –

I was waiting for the microwave to finish this evening when someone else came into the kitchen, got some salt from the shelf, then left. The one thing I said to her was “sorry”. I wasn’t in the way. She’d just arrived.

– – – – –

Things have… developed since first year. The summer wasn’t great, for various external reasons I don’t need to go into. Last term obviously had its highlights, but generally was all kinds of horrible, and again, I can’t quite articulate why. On the plus side, this term’s going much better so far, although it’s far too early to tell if this will last. Meanwhile, resurfacing to the tip of the iceberg, the S word is now my general response to anything that happens. I’m not actually sorry at all, it’s just the noise I make. Like the tiptoe thing, it’s inspired many well-meaning people to “help” by shouting “STOP APOLOGISING!” and wrongly believing that actually makes a difference. Unlike the tiptoe thing, I think it would be inaccurate to call this a stim; it’s more of a practically involuntary back-up sound effect for when there’s too much going on to make actual words with meaning happen “properly” which, apparently, is most of the time these days. Also unlike the tiptoe thing, I’d also like to make it go away.

NOT because it’s weird and wrong and embarrassing and everyone’s going to laugh at you if you keep doing that, but because it’s getting in the way of my ability to string a sentence together. There’s a huge difference. Oh, and that it’s only the tip of the iceberg.

– – – – –

Tonight I was at a discussion-based meeting. Fitting enough chairs in a circle around the room was, well, interesting. I curled up a little. “Sorry.” “It’s… fine…” “…Yeah, sorry.”

– – – – –

I think it’s probably, for want of a better word, a symptom of whatever-the-heck-my-head-is-doing, the best explanation for which so far seems to be “demand > current coping mechanisms” which apparently isn’t uncommon amongst people on the spectrum. So it’s not a case of “have you tried speech therapy?” or “there’s no point feeling bad about it” or, my personal favourite, “STOP IT!”. It’s about sorting out the underlying stuff, and I don’t even know where to start with all that. Anything else is just a tiny inadequate sticking plaster.

– – – – –

Fitting the chairs *back* into a circle was basically impossible. Thirty seconds of freaking out later, it was sorted, I sat down, I rocked a little, I started waving my feet in front of me, like swimming, I guess. Not sure what it with me and stimming and feet, but there you go. “I like your shoes!”, someone said. Inevitably, “Sorry!!!” followed. But not before I instinctively hid away my legs back under the chair, back upright, apologising for that weird embarrassing not-normal thing.

Immediately I wondered why. I mean, he’s not exactly going to be horrible about my stimming; he’s autistic too.

I’d already chosen to blog about this tonight, but that was when everything clicked into place.

I’ve gotten too used to hiding as much as possible for as long as possible, to the point that I do so even when people don’t require it from me. Because the tip of the iceberg is weird and silly and pointless enough as it is.

And now, even if someone were to ask about what’s beneath the surface, I couldn’t talk about it. Even when I blog about it, I can’t find the right words and I settle for “close enough”. People want to see me as a person, so I shouldn’t talk about these things.

Only what they can see.

So now all I’ve got to describe it is “Well, I keep apologising for no reason.” And that doesn’t cover it at all.

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Echolalia, stimming and… erm… Daleks?

I’m back at uni, so I’m starting to try and think of short post ideas so, well, I can stop just abandoning the blog for weeks on end. This is one such post, so it’s really just a list of links, and hopefully I’ll keep posting around once a week.

Echolalia, explained in more detail here by Musings of an Aspie, is basically the repetition of words, either immediately or from remembered language such as movie lines. Such repetition is common in autistic people, both as a form of communication and as a stim; today I’m going to focus on the latter. Here’s a brilliant demonstration by Yes, That Too; “ladle” is a great word, isn’t it?

Personally, one of my stims is echolalia, and one of my special interests (not a big fan of that term myself, but I haven’t thought of anything better…) is Doctor Who. This leads to some really fun times on YouTube:

Exterminate! – Every time a Dalek says “Exterminate!” in both classic and modern Who (until the end of Series 5).

Fantastic! – Every time Nine/Christopher Eccleston says “Fantastic!”; this one includes more of each scene rather than just the word itself, so there’s less instant repetition, but here it is anyway.

Well… – A compilation of Ten/David Tennant saying “Well…” (with surprise John Barrowman at the end for some reason).

Tenth Doctor Says “Sorry” 120 Times – Does what it says on the tin. Also an accurate portrayal of what would happen if David Tennant were to star in a film about my life.

The Title Of The Episode, In The Episode – Every title drop in modern Who (until the end of Series 7). Stimming-wise, I think I’ve saved the best until last. There’s an episode in the first series called “Dalek”. You can imagine how many times that gets said. DALEK DALEK DALEK DALEK DALEK DALEK DALEK DALEK DALEK… I was shown this one and, much hand-flapping later, made a cup of tea whilst sort of bobbing around repeating the word “Dalek”. Possibly more fun for me than it is for most people… 😛

I did look for a “bow ties are cool” montage, but I couldn’t find one. Instead, here’s a completely irrelevant but nonetheless amazing video demonstrating why Haddaway’s “What Is Love?” is incredibly well-suited to 50th anniversary “The Day of the Doctor” puns.

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Opening Up

I’ve never been very good at opening up. Well, to be honest, I have two extremes; there are a select few people to whom I whine incessantly about life, but with most people I stay very guarded. This explains the odd yo-yo-like status of this blog’s anonymity (or lack thereof). It also explains why I sometimes turn into a living breathing PR machine, sweeping the negative aspects of life under the carpet or skipping over them entirely when relaying stories to other people, regardless of whether or not the bad stuff is my own fault. I have no idea whether that’s an autism thing or not; it could be, although I certainly don’t think it’s limited to people on the spectrum. So, several weeks ago now, when I thought “When I get home from uni, I really need to tell my parents that perhaps I’ve been struggling just a tad more than I’ve been letting on”, it was a bit of an eye-opener to me as to just how big that “tad” was.

I’ve written a little bit about this before, way back in June when I first began to notice the problem, but it’s developed almost out of all recognition since then. It’s not just about social events, although that’s still a worsening issue; it’s sort of all-encompassing. I don’t really know how to explain it, but this term was defined by a general sense of NOPE TOO MUCH CAN’T COPE EXCUSE ME WHILE I HIDE IN THIS CORNER AND VAGUELY ATTEMPT BREATHING even when I was just in my room. Especially when I was just in my room. It’s still largely in the form of completely pointless fear, but towards the end of term there was a shift towards feeling totally drained, nothing left to give, whatever you want to call it. And I’m in two minds as to whether or not all this actually happens to most people and I’m just over-analysing as usual. Either way, I’ve also changed my mind about it being somehow separate from and/or in addition to Asperger’s because, I don’t know, the general “overwhelmed” feeling of it all seems pretty autistic to me (although again definitely not limited to autistic people), which is why I’m writing about it really. Don’t get me wrong, it hasn’t all been bad. As usual, I had some fantastic times this term. I know I still love uni really. I just couldn’t have taken another minute of it, is all.

Anyway, one particularly bad weekend, whilst perched in a corner in my room trying not to cry over some sort of laundry-based crisis (not that crying is a regular occurrence at all, I don’t know, it was a bad weekend), it occurred to me that maybe, just maybe, it wouldn’t kill me to actually talk to someone about this when I get home, because otherwise something has got to give. For the remainder of term, every so often I tried to formulate an explanation, almost rehearsing it, basing it mainly on specific incidents like the huge panic spiral on my first night back (quickly escalating from general justified worrying about work to feeling like I can hardly breathe because I didn’t know where to put my alarm clock or something). Except now I am home, and I have absolutely no idea where to start. There are a number of reasons for this.

  1. It’s probably nothing anyway. I over-think and I over-react. I don’t know, it’s what I do. Even writing this makes me feel like I’m just reversing the living-breathing-PR-machine thing by putting a negative spin on it all, and I do feel like I’m just using the blog to whine about my life because it saves having to get real-life people involved. Uni is stressful. Growing up is stressful. Life is stressful. Besides, being back home and not having just so much to think about feels so much better, so it’s probably just a natural part of growing up and becoming vaguely independent. Other people are just better at coping with it, and I make things worse through over-thinking.
  2. I just can’t quite find the words. I suppose asking for help requires an explanation of a.) the problem and b.) what you’d like the other person to do about it. At the moment, the first part of that is really difficult to articulate. I haven’t worried too much about my description for the purposes of this blog post, because mainly I want to focus on the opening-up issue, but I don’t think it’s quite accurate enough. Like I said, there are a handful of people at uni who must be sick of me whingeing at them by now, but even with them, the words I’ve used  just don’t quite seem to capture it.
  3. I don’t know what it’s going to solve. Not only is “the problem” seemingly impossible to describe properly, but “what you’d like the other person to do about it” isn’t even really a thing at all. It would just be an awkward conversation that goes nowhere.
  4. It’s awkward and difficult to admit that actually, I’ve been hiding something. I haven’t been outright lying (much), but I’ve definitely been omitting quite a lot of the truth and generally being a living breathing PR machine. It’s hard to go from that to “oh, by the way, things aren’t as fantastic as I’ve deliberately misled you to believe”, although actually I’m not sure it would surprise people much given my track record of, well, being a living breathing PR machine.
  5. There is literally no appropriate time to mention it. Over dinner? During an ad break? In the car? Really?
  6. Something else I can’t put my finger on. I don’t think it’s lack of trust. Or fear of judgement, apart from the whole over-reacting thing or because I’ve been economical with the truth for quite some time now. Maybe it’s to do with not wanting to worry people needlessly?

I’m still not entirely sure why I’m blogging about this, and I’m trying to justify it to myself by wondering whether or not it’s vaguely autism-related, so I’d love to know if anyone else on the spectrum does the whole living-breathing-PR-machine thing – or is that something everyone does? I have no idea. To be honest, mainly I’d just like to know how to stop being a living breathing PR machine and start actually sorting this out.

Hitting “Publish” is always so, so scary.

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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.)

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Turtle Mode: For when everything gets a bit much

It’s that time again when I remember I’m supposed to be blogging every week (Saturday nights are likely to be when blog posts happen, actually), so I thought I’d talk about shutdowns, basically because I had a pretty bad shutdown earlier this week so it’s all still fresh in my my mind.

I should probably discuss my experiences with meltdowns first, seeing as that tends to get talked about more often. This post, “Anatomy of a Meltdown” by Musings Of An Aspie, explains the feelings really well and also notes how the ways in which meltdowns manifest themselves can change over the years. When I was a kid, I got pretty aggressive (although thankfully I don’t think I’ve ever properly hurt anyone) but these days meltdowns mainly consist of crying and lots of it, which is something I never normally do. They’re now few and far between, too; I think I hit meltdown the day I came back to uni because we had issues finding my new room but other than that, my last full meltdown was back in August, the first time I tried to leave my ex, and the time before that was back in March 2012, in the middle of the school library due to a student-council-initiative-gone-wrong (it’s a long story). I guess as I grew up I just learned coping skills, to breathe, to stim, to control it, and if all else fails to just get out of there as fast as I can.

For me, especially over the last few years, shutdowns are much more common, and they feel almost exactly the same, bar the inevitable horrible crying headaches that follow a meltdown (or any crying for that matter; those headaches are just horrible, aren’t they?). As Musings of an Aspie puts it:

It feels like my whole body is thrumming, humming, singing, quivering. A rail just before the train arrives. A plucked string. A live wire throwing off electricity, charging the night air.

Thinking about it now, most shutdowns start with me being stuck in a noisy, crowded room (so party situations, then) and that was the case a few days ago, too. I don’t know how to explain it other than everything gradually got a bit much and then, as my friend put it, I went into full-on turtle mode.

turtle in shell

Well, I would have done this if I was actually a turtle with a shell I could hide in, but I’m not, so instead I just sat there and vaguely attempted to sing under my breath to try in vain to calm myself down.  Didn’t really work, because people kept pouring in, for ages and ages and ages. I remember telling said friend that I wanted to curl up into a tiny ball and not take up any space. That must have been roughly when the “thrumming” started, like every cell of my body was vibrating. Then there were introductions, there was quiet, there was calm, in theory I had a minute or so to regroup. It doesn’t really work like that, though; there were still people coming in, still, and there were still so many people around me, and as a mere human being I couldn’t just disappear and take up no space. After that, getting up and talking to people. Talking to people. Right. That wasn’t going to happen. I couldn’t find the person I was looking for so I sort of wandered around aimlessly, staying around the edges of the room where it was less dense, resisting the urge to hide behind or under chairs, just about breathing, never mind anything else. I sort of knew that I needed out, I thought about how I could grab my phone and step outside for a few minutes and calm down and text my friend to let her know where I was/ask to be rescued, but I couldn’t just make that happen, I was too far gone.

Then I ran into someone I knew; I don’t think she knows I’m autistic unless she’s worked it out for herself, but I was visibly distressed, so she had to do a bit of guesswork:

“There’s a lot of people here tonight, isn’t there, is that stressful for you?”

You bet it was.

“It’s really warm in here, isn’t it, are you too warm?”

Probably, and to be fair that’s always a very good guess with me, but frankly at that point I was solely concerned with all those people.

And, finally, “Do you need to go out for a while?”

YES. YES I DID.  THAT’S EXACTLY WHAT I NEEDED TO DO. THAT’S IT.

Fantastic, problem solved, right? …Wrong. You see, my annoying habit of insisting I’m okay when I’m not okay even extends to when I am clearly, visibly, obviously several thousand miles away from “okay”. That, and I could barely make words happen at all. I could think all that stuff, but I couldn’t say it. The help I clearly needed was being handed to me on a plate, but even then, still, my body was having none of it, which is always massively frustrating for all parties involved. Instead, I froze, and panicked, and didn’t say a word, and then just continued wandering.

Eventually, to cut a long story short, I got out and was immediately distracted by something else, which on the one hand was really bad timing (as you can tell, my conversational skills weren’t exactly brilliant at this point) but on the other hand, at least it was a distraction, and a positive one at that. After that had happened, the event was almost over, so I left; my new room is much further out than my old one, which on this particular evening was a good thing because for a while I could just focus on putting one foot in front of the other without having to think about anything else. I got back to my room and even though the “danger” was over, everything was still on a go-slow. I slowly thought about getting into my pyjamas, then eventually did so, then slowly thought about making tea before deciding that was just more input I didn’t need, so I slowly got myself a glass of water instead, then sat on Tumblr for a bit, then got into bed, cocooned myself in the covers (deep pressure for the win), and attempted to explain all this to the person I was with via Facebook (hence “turtle mode”). I always forget how long it takes for the “thrumming” to stop, for my body to catch up with my brain and realise everything is okay.

I should probably just give people here some vague instructions as to what to do when this happens, because like I said, there were people doing everything right and I just couldn’t accept the offers of help. Basically, if it’s possible to get me out of there, get me out of there. I actually tend to be okay with touch for the most part, so if I need to be sort of guided feel free to do that, but obviously if I flinch that’s probably a sign you should stop. Once I’m out of there, I can probably take care of myself, breathe, stim, whatever. Maybe sit with me if you’re worried, don’t ask too many questions at first because you won’t get any helpful answers, let me process it all for a little while and then I can start telling you what’s wrong and we can do something about it. I guess for meltdowns (you will know if this happens, trust me, it’s really obvious!!), again you’d need to get me the heck out of there (although that might prove difficult), obviously I’m going to need tissues and water would be nice too (for the headaches) but other than that, once I’m out and I’m safe and I’m not having all that information thrown at me anymore, it’s best to leave me alone for a bit, let it happen, let me slowly calm myself down and then, finally, I might actually have the words to tell you what happened. Of course, everyone on the spectrum is different – it’s a spectrum – so please don’t take anything I say as a strict template to follow for other people.

So I guess shutdowns and meltdowns aren’t that different, internally. And not being able to ask for or even accept help is really not nice.

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The good old days?

I suppose this is related to my previous post, which is why I’ve ended up running to the blog as soon as this topic came up in conversation.

So, I’m only 19, and the only time I can identify as “adult” without cringing is if it’s preceded by the word “autistic”!! Consequently, I’m no stranger to that recurring conversation from older adults about “the good old days” of their childhoods when everyone spent their entire lives outside, and you kids with your internet and smartphones don’t know a thing about making your own entertainment, do you?!

It’s occurred to me that by sitting on my phone blogging, I’m basically proving the point. However, the constant underlying message that technology is just BAD and makes ALL THESE KIDS SO UNSOCIABLE has always left a bad taste in my mouth. Because believe me, I tried playing outside with the other kids on my street, and would always end up just not fitting in (again, see my last post). At least video games and social networking sites provided an alternative. Personally, technology has made me more social, and I don’t know what I’d have done without it.

Like I said, though, I’m only 19, only barely an adult (*shudder*) myself, so I’d be really interested to hear from “proper” adults with autism and/or other disabilities, who grew up in the “good old days when kids played properly” or whatever else. What do you make of all this?

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When You’re Out, Loneliness, It Crawls Up In The Ground…

I’m trying to get back into blogging regularly, so the current plan is to blog about feminism one week then autism the next, or maybe increase that to one post from each category per week, I don’t know. Either way, that means I’m due to write an autism post, and there’s something I’ve been meaning to write about for a while now. Except, well, I’m not really sure where to start. So instead I’ll begin by linking you to other relevant things.

  1. At the risk of shoehorning my special-interest-du-jour into my “serious” blog, Sleepsong by Bastille helped me recognise and at least vaguely attempt to describe the feeling I’m going to write about. Lyrics can be found here, that’s where the title (and entire structure of this post, as it turns out) came from, and I think it sums up the whole lonely-in-a-crowd thing quite well.
  2. There’s also this post by autistic blogger Alex Forshaw on obsessive relationships. The comments on that post are really worth reading too. I really recognised myself in that post and the subsequent comments. I’m also beginning to understand why my ex (who is also autistic) behaved in the way he did during the final months of our relationship; not that that excuses it, of course, but I can at least see the reasoning behind the possessiveness.

Anyway, time to attempt some words.

When you’re out, loneliness, it crawls up in the ground…

It’s, for want of a better phrase, the language barrier. I’ll miss most of the neurotypical body language, facial/vocal expressions and whatever else; likewise, I imagine most people don’t pick up on any of that stuff from me. It’s the rhetoric surrounding who’s to blame for the language barrier, because autistic body language is seen as weird and wrong and all the advice that gets thrown at you about how to make friends all boils down to “Have you tried not being autistic?”

It’s not just that, though. It’s also the memories from when I was younger and how horrible other people could be sometimes, often people who barely knew me, people whose names I never knew. It’s learning not to trust people straight away, if ever, because they’re probably either laughing at me behind my back or about to start laughing at me to my face. It’s learning to assume that if people are whispering or laughing near you, they’re whispering or laughing about you; to this day I even assume this about friends, because, well, you never know.

“It’s funny when she gets angry.”

It’s never quite being in sync, even when you realise that not all people are going to push you into meltdowns for fun, and some are actually really friendly and supportive, in fact that probably goes for the majority of people. That’s nice to think about, but it doesn’t really solve the problem.

It’s showing up, saying “hi” and barely saying another word.

It’s being the awkward third person walking behind the other two, unless there’s four people, in which case suddenly there’s room for three people in a line and I become the awkward fourth person.

It’s all the worrying about being clingy and possessive and jealous, all the actually being clingy and possessive and jealous. It’s bugging people with either far too many Facebook messages or one that’s far too long. It’s freaking out when that silly Facebook messenger “seen” thing is removed only by a completely unrelated message from someone else, and when that actually gets some sort of response.

It’s the feeling, probably unfounded but still there nonetheless, that I’m in the group but not actually in the group, just sort of tagging along for the ride. It’s the realisation that this sentence applies to basically any group of people I could ever have vaguely been considered a part of.

…It’s what you feel, but can’t articulate out loud.

17 Comments »

Just Another Post About Shame

A couple of weeks ago, Musings of an Aspie and Autisticook (who are both awesome and you should go and look at their blogs *right now*) wrote posts about shame associated with the autistic spectrum, so I thought I’d jump on the bandwagon with a list of probably-relevant things which I’ve been ashamed to talk about properly to some degree. Here we go, then:

  • I never really got the hang of riding a bike. Incidentally, I’m studying in Oxford; for those of you that have never been there, it’s literally BIKES, BIKES EVERYWHERE, and now that I won’t be living in college anymore, I think things are going to get very awkward very quickly. Evidently, I’d like to learn, but at my age people are expected to not need to learn so everything’s aimed at (neurotypical, able-bodied) kids. I meant to try and resolve this issue over the summer, but it hasn’t happened.
  • I meant to do so many things over the summer, but it hasn’t happened. I’m getting very worried about the inevitable “What did you do in the holidays?” question when I go back to uni.
  • I’m still a massively picky eater, although this is something I’ve been working on and I am getting a lot better at trying new things. I have to admit that all the really formal stuff at uni still makes me nervous, though!
  • Whilst I don’t have the bladder issue described by Autisticook in the post I’ve linked to above, I really don’t like asking to, well, do anything really, and… erm… let’s just say that’s almost landed me in trouble a couple of times.
  • I’ve started accidentally abandoning FeministAspie for days at a time because my executive function has gone completely to pot over the summer, so I’m trying to blog more now. Which is the reason for this post, I guess.
  • Yet I seem to have developed the ability to waste entire days online.
  • I wrote a post the other week which started and ended with “Don’t… think… this will just blow over”. Well, guess what?! IT’S JUST BLOWN OVER. I don’t really want to talk about that ongoing situation, but the point is that I have all the assertiveness of a blade of grass. Not ideal.
  • Sometimes I sort of daydream about having meltdowns or a more severe shutdown in imaginary stressful situations and how other people would react, especially people from uni. I think I’ve always done this to a certain extent, but I’ve only really noticed it this year. I don’t know why I do this; it’s almost certainly not good for me. Maybe it’s because I am yet to have a “proper” public meltdown at uni (although – typical – I came very close on the last night of the year!) so part of me wants people to understand. I don’t know.
  • My ultimate solution to all problems is to ignore them, close my eyes until they go away, and hide behind distractions of some form. Unsurprisingly, this isn’t really working out for me.
  • I worry that all this tiptoeing and pacing on tiptoes is going to damage my feet when I’m older, no thanks to being told that by a number of people, all with the clear ulterior motive of “that’s weeeeeeeeeeeird” but there’s probably some truth in it. I then worry that when this does happen, I’ll be blamed for it.

That’s all I can think of at the moment. It’s always nice to get things out in the open, even if it’s just so you know you’re not alone. I’ll probably think of so many things I could have added to this list the second I hit “Publish”. I worry too much. 😛

The next day…

Told you I’d forget something! And maybe this is just because it’s causing a lot of shame right now, but I thought it was such a big one that I should go back and add it to this post.

You see, my (NT) brother has just pointed out that I haven’t actually left the house since Monday afternoon (it’s now Thursday noon-ish). He thinks this is really abnormal (choice quote: “Do you not… like… lose air?!”) but the thing is, I hadn’t really even noticed until he asked me about it. To be honest, for me in the school/uni holidays that’s pretty normal. Although now it’s making me feel like a hugely inadequate person, especially thinking about other people from uni and how productive the holidays have probably been for them. Heck, I haven’t even made a dent into my metaphorical “TV shows to watch” list, and that’s what most people seem to do when they’re being unproductive, so I feel even more unproductive. Have I really spent the entire day online again?!

This time last year I didn’t know executive function was a thing, but I sure have issues with it!!

5 Comments »

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)

14 Comments »

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