Feminist Aspie

Autistics Speaking Day 2016: Affirmations For You

(This post is for Autistics Speaking Day 2016 – check out the Autistics Speaking Day blog for loads of other contributions though out the day!)

My ASDay posts (and posts in general…) often just consist of me talking about myself, which is kind of tricky given that I’m supposed to be anonymous, so today I’m going to talk about you.

If you think you belong here, you belong here. If you don’t have a formal diagnosis, or if your diagnosis was lost or left in limbo by a mess of bureaucracy, you still belong here. If people don’t take your autism seriously, you still belong here. If you’re actually feeling pretty good right now, you still belong here.

You don’t need to feel guilty because you’re actually feeling pretty good right now. You don’t need to feel guilty because you’re not in a good place right now. You don’t have to feel guilty because the ways you respond on bad days don’t even make sense to you in hindsight on good days. You don’t have to feel guilty because you could do something one time and you couldn’t do it some other time. It doesn’t mean you’re fake, it means you’re human and subject to a multitude of other contextual factors.

You’re not just attention-seeking (and who decided seeking attention was such a bad thing anyway?), you’re not just running away from ~the real world~ (this IS the real world), and you’re not just trying to be a special snowflake (er, whatever that means). You’re autistic, even if you don’t fit pre-conceived neurotypical ideas of what autism is.

It’s okay to be uncomfortable with the latest TV show/film/book/whatever about autism. It’s okay not to like it or relate to it even if you don’t find it outright offensive. It’s okay to feel alienated by the version of autism that’s presented to us by neurotypical-led media. Again, it doesn’t make you fake or a Bad Autistic Person. At the same time, it’s okay to enjoy the representation while you can, to find solace in seeing someone vaguely like you even if it isn’t perfect.

The way you experience the world is real. It’s not over-reacting, it’s not wrong or weird or weak, it’s autistic and valid and real. Sometimes, the world can be downright scary, and this is especially difficult when the people around you don’t think it’s scary, they don’t recognise that you might feel differently (and they say we lack empathy?) and you’re left facing it alone because voicing your fears gets you judgement rather than support. It’s still just as real. But you’ve got this. You’ve made it this far, you’ve more than likely felt this way before, and you can survive again.

It’s okay to retreat sometimes, to focus on recovering from the constant overload, to take care of yourself. Abled people like trying to frame this as weakness or inferiority, but you’re only trying to achieve the same level of comfort that they have all the time in this society that was designed specifically with them in mind. It’s okay to be angry – there’s a hell of a lot to be angry about. But it’s also okay if you can’t fight back all the time. It’s okay if you have to choose your battles.

You are strong and kind and brave and capable and deserving of love.

And your special interests are amazing too!

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Cheese and O(pi)nion

(CONTENT NOTE: This post mentions racism and xenophobia, media sexualisation of children, sexist and racist harassment and sexual assault.)

This week, the 2016 Weird Awful News Machine has heavily featured Match of the Day presenter and crisp-advert-man Gary Lineker. Front-page tabloid headlines calling for him to be sacked, politicians attacking and defending him, debate still raging all over the internet… What on earth did Lineker say that was so huge and controversial it created this massive media storm?

“The treatment by some towards these young refugees is hideously racist and utterly heartless. What’s happening to our country?”

 

…Oh.

Yep. That’s really it. Very non-confrontational, doesn’t blame anyone or anything directly, he even includes the phrase “by some” which you’d think would combat the usual not-all-white-people-not-all-Brexiters-not-me-not-me-not-me brigade.

Here, Lineker was criticising people and publications who responded to the arrival in the UK of fourteen – yes, fourteen – teenage refugees from Calais by scrutinising their photos, declaring them to “not look like children”, and then being all furious and hateful because they must be lying about their age. (Heavy sarcasm incoming…) It can’t be because people grow and age at different rates and adolescence is a particularly awkward time, with some children barely in secondary school being deemed fully grown (usually by those who want to sexualise them – the Daily Mail is particularly familiar with the “all grown up” trope) while some young adults are told they don’t look old enough to have left school. It can’t be because these refugees have seen horrors and devastation that no child should have to go through. Nope, apparently they have to be liars, because we as a society assume all refugees are lying about their situation (which conveniently means not having to feel guilty about the UK’s part in creating and maintaining their situation) and secretly after “our” money, “our” jobs, “our” resources… wait, who is this “our”? There’s the racism. I would then say the heartlessness is the fact that *fourteen* refugees arrive and the immediate response is anger over the fairly slim chance that a few of them are adults, because heaven forbid we help an 18-year-old get a roof over their head and the chance of a fresh start rather than a 17-year-old, right?

This leads us nicely into the often overlooked distinction between offence and harm. If Lineker is wrong (which he isn’t) then what are the consequences? At worst, an adult refugee gets the assistance they need. You could make the argument that a child refugee would be missing out on that assistance, but frankly the problem there is how limited the numbers are in the first place because immigration even to escape war and persecution is so demonised. As for the people who are angry at Lineker’s statement, I’m not sure the arrival of f o u r t e e n refugees, whatever their age, affects them or the “general public” they claim to represent much at all. It’s not about the risk of harm. It’s about offence.

I’ll make that clear: The Sun (which, as awful as it is, does for some reason hold a lot of sway over public opinion and, in turn, political opinion)  called for a man who talks about people kicking a ball around to be sacked from that job because they’re offended that he had a completely unrelated opinion different from their own. That’s the situation. So where the heck are the free speech brigade?

They were out in force when Richard Keys and Andy Gray, who also talked about people kicking a ball around, were dismissed for making sexually derogatory remarks about women and stating a female linesman was not fit for the role due to her gender – remarks that reinforce prevalent sexual harassment of women and existing barriers to women in male-dominated careers, i.e. causing harm rather than just offence, but were still seen by many as just “banter”. They were out in force when alt-right pundit Milo Yiannopoulos was banned from Twitter for repeatedly violating its terms of service, culminating in sustained racial abuse and harassment against actress Leslie Jones – such harassment and abuse can and does cause long-lasting psychological harm, but as the tweets in the link show, that was seen as suppression of free speech over offence. And, of course, a couple of weeks ago *actual US presidential candidate* Donald Trump pretty much admitted to sexually assaulting women – I hope I don’t need to tell you that sexual assault is harmful, but Trump and his supporters dismissed this as “locker room banter”, and he’s still running for President even though I could continue this “harmful statements defended as free speech” paragraph forever just on the Trump campaign alone.

As the above incidents and many more show, there are a lot of people around who apparently care about nothing more than freedom of expression, no matter how much these views can cause real harm to the rights and freedoms of others (or “special snowflakes looking for offence” as they’d put it). These people use their (mistaken) conception of free speech to attack everything from combating harassment to using trigger warnings. So in comparison to that, you’d think a football presenter and crisp enthusiast who just said refugees are people and should be treated as such would be an easy case, right? But nope, just silence.

Apparently “some people are being racist and heartless towards these refugees” is just too radical a statement.

It’s almost as if those who criticise taking hate speech seriously don’t actually care about freedom of speech; only freedom to hate.

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Autistic Fresher To-Do List

 Enrol

✓ Meet flatmates

✓ Worry I’m not outgoing enough or not making the right small talk and they won’t like me and I’ll be lonely all year

✓ Gradually become comfortable enough in the kitchen that I’m mostly not too scared to use it whenever other people are around

✓ Get used to all the little noises

✓ Go to welcome events

✓ Experiment with earphone volume and sheer repetition until the walk to campus isn’t a wall of sensory overload

✓ Worry that everyone else seems to know each other already

✓ Bolt from that one event that gets really overcrowded

✓ Beat myself up about it because if only I’d stayed, I might have made loads of friends

✓ Visit freshers’ fair

✓ Survive the general sensory onslaught of freshers’ fair

✓ Sign up for lots of things I’m interested in, and also some things I’m not interested in because I can’t say no to people on the spot especially when I’m just trying to process the input

–  Blog?

✓ Go to course inductions

✓ Meet people on the course

–  Explain to the people I just met at the induction why I froze up at the cafeteria afterwards

✓ Make a note of when the fire alarm is tested so I’m less likely to jump out of my skin every week

–  Avoid thinking too much about how warm the crowded rooms get

✓ Go to postgraduate welcome drinks… for ten minutes, then leave and beat myself up about it

✓ Realise how safe and comfortable I feel in my new room, having just got back from postgraduate welcome drinks after ten minutes

 Adequately explain to friends why I left postgraduate welcome drinks after ten minutes

✓ Survive a tube journey

–  Explain what’s happening when I start to shut down on a busy tube with new friends

✓ Catch up with old friends

✓ Get home from inductions on the tube without almost being hit by a car afterwards because I’m in such a daze

–  Understand how other people are crossing the road almost without even stopping

✓ Immediately bolt from another drinks event following a chaotic and overloading induction

–  Explain to flatmate why I accidentally abandoned her at the drinks

✓ Worry about how new friends are interpreting autistic traits because they don’t know I’m autistic; Worry about how new friends might see me differently if I say I’m autistic

–  Blog

✓ Start classes

✓ Receive “you don’t have to apologise so much” comments from friends and lecturers alike

–  Work out how to tell people that I know they mean well when they say things like “you don’t have to apologise so much” but they’re only making me even more self-conscious, which is the opposite of their aim

✓ Accidentally hit rush hour on the tube, survive tube journey anyway

–  Survive rush hour tube without almost passing out when I’m back in my room or, failing that, get better at avoiding rush hour

✓ Complete GP registration

✓ Complete disability service registration, even though I wanted to bolt and hide and ignore it

✓ Go to societies

–  Get into a full routine by figuring out which societies I will be attending regularly

✓ Struggle with the “So what do you do in your spare time?” question, because my socialising mainly comes from university societies and I am yet to completely figure out which societies I will be attending here

✓ Accept that it’s cold now and, after much deliberation, start wearing a jacket

–  Wear jacket on the tube (possibly when visiting a flying pig?)

–  Explain why I’m so anxious and out-of-it at a particularly overloading society welcome

✓ Survive bus journey, realise that this is much easier and contrary to previous worry will not cook me alive (at least not in October…)

✓ Mess up at least two really really basic meals

✓ Successfully eat food the vast majority of the time

✓ Find an excuse to mention autism on Facebook where some new friends might see it

–  Actually talk about autism to new friends

✓ Remember I need to think about future career paths

✓ Continue being frustrated with how much more competent and grown-up all my friends are

–  Work out where to even start with future career paths

✓ Observe increasing evidence that everything is going to be okay and I’m not slipping back into old bad habits

–  Fully convince myself that everything is going to be okay and I’m not slipping back into old bad habits

✓ No, really, blog

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Ableism kills. Again.

(CONTENT NOTE: This post discusses murder/filicide and child abuse, specifically the Austin Anderson case, and its links to systemic ableism)

Another day, another murder. Austin Anderson, aged just 19, was left in a field to die from dehydration and lack of crucial medication. By his own mother. And the media and the public are sympathising with the killer rather than the victim, because the victim was blind and autistic. (For more information I recommend this post by Grimalkin)

I saw the news on Facebook, made the mistake of reading the comments, and it felt like a punch in the stomach. How can this happen?

Why, after so many other murders of disabled people by their caregivers and the subsequent backlash by disabled adults against these ableist views, do those views – and the murders – persist?

Why are the methods of killing always so, so cruel?

Why are they sometimes called “mercy killings” in spite of this?

Why, when Anderson was crying out for help for as long as he was able, do people still jump to the horrible conclusion that, because he was disabled, he was automatically better off dead?

Why is autism in mainstream media always framed not from the point of view of an autistic person, but from the point of view of a neurotypical caregiver? (Think about it – would we let men control the feminist movement on the basis that they have daughters and other female relatives? I certainly hope not.)

Why is so little thought given to autistic people, in discussions supposedly about autism, that autistic lives are considered so disposable?

Why is the autistic person erased from the picture to such an extent that people only have sympathy for the killer, and empathising with a disabled murder victim is viewed by abled people as a lack of empathy? (Because in their eyes, the only “real” person in the situation, the only person available to be empathised with, is the abled person.)

Why is autism called a burden, an epidemic, a source of unending stress and misery, something to be eradicated, without anyone even considering that these are people they’re talking about?

Why is it that the huge stresses and strains of raising any child are (like all forms of labour traditionally ascribed to women) constantly erased and ignored, but as soon as the child is disabled, all abled people want to talk about is how all that hard work must be so stressful that literal murder is “understandable”?

Why do abled people not consider that the same ableist factors that make raising a disabled child hard make being disabled even harder? (Oh yeah, because they don’t think disabled people are people.)

Why can people simultaneously hold the views that autistic people are not allowed to engage in harmless stimming to cope with the stress of being autistic in an ableist world, and that neurotypical people are allowed to engage in literal murder to cope with somebody else dealing with being autistic in an ableist world?

Why is disability seen as a debate rather than a group of people, to the point that Facebook commenters think it’s okay to “just play devil’s advocate” when somebody died?

Why do people think being objective in this “debate” means having sympathy for that person’s killer?

Why are autistic people who object to all this so often dismissed as “high-functioning” and “not like my child”?

Why do neurotypical people want to divide us based on our ability to look and act like them?

Why do neurotypical people think autistic people aren’t “autistic enough” to have an opinion, but they can have an opinion when by definition they’re not autistic at all?

Why, when we put ourselves through debating our own humanity just to show solidarity with the victim, when we read these awful upsetting infuriating scary things about us and fight through autistic emotional overload just to show solidarity with the victim, when I had to wait until I had certain special interest material to keep myself steady enough to write this properly to show solidarity with Anderson, when our brains and an ableist society are fighting us every step of the way and we still want to show solidarity with the victim, do neurotypical people still think they can say we lack empathy?

Why do neurotypical people use perceived common traits of autism from the ableist mainstream point of view – lack of empathy, lack of theory of mind, and so on – as weapons to silence autistic people?

Why do abled people still mock the concept of ableism and attempts to reduce it? Why do abled people still think ableism is made-up?

This is ableism. Ableism kills. Ableism keeps on killing. And I’m already bracing myself for ableism killing again.

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Calm Before The Storm: When the problem is over but my head just won’t let go

(CONTENT NOTE: This is basically an unedited list of panics about heatwaves, so if that stuff happens to bother you too then proceed with caution, and if you’re claustrophobic it turns out there’s a lot of overlap!)

I’m not really sure if this is an autistic thing or not, but recently I’ve found that when certain Big Scary Things happen, I can remain fairly calm and in control at the relevant time only to make myself anxious by ruminating on the situation after it’s over. I think I find these thoughts more difficult to keep a lid on than the at-the-time thoughts because my usual thought-balancing mantras don’t really apply – I already know it’s over, I already know I’m safe (because it’s over), I already know I can deal with it (because I just did) so what else am I supposed to say back to my anxious brain? The two main situations that come to mind for this habit are when my ex tries to contact me again (which hasn’t happened in months now) and the one I’m going to talk about today – yep, regular readers please feel free to roll your eyes, this is another heatwave post! (If you’re new to the blog and/or the heat thing, here’s a quick summary of why heatwaves are overloading and terrifying and The Worst).

Last week, I decided to made a note of all the post-August-heatwave thoughts I had, couldn’t shake, and couldn’t really express much elsewhere, and then post it here with as little editing as I could, no matter how silly and self-conscious I felt (which is a lot, by the way…), in the vague hope that other (probably also autistic) people would “get it”. Weirdly, just doing this exercise has actually helped a lot; the act of filing away a thought with the promise it will be “dealt with” later seems to convince my brain it doesn’t need to do any more work on it, so I’ll probably write more of these lists in future, whether I post them or not! So without further ado, here’s my unfiltered autistic brain, fresh from dealing with its biggest and silliest fear and randomly throwing it back at me every so often:

That happened. That happened. I know it happened, it’s over, and I should move on, but I don’t know how, I don’t know what to move on to. That happened. And it’s going to happen again.

Here come the autumn posts. I haven’t posted anything like that yet because… I don’t know, I just don’t feel comfortable. I guess this is what they mean by “masking”. That, and it just never entered my head to do so. Will they think I was just faking or exaggerating the posts I made when I was panicking? What about the heatwave the other week,  when I just couldn’t articulate the thoughts I might have wanted to express – are they suspicious that I didn’t really acknowledge it?

“It’s been another belter of a day-” NOPE. “Too warm for me-“ NOPE. Fanning yourself – DEFINITELY NOT. Why? Why do I panic and freeze up and freak out at people thinking exactly what I’m thinking, at the people most likely to be sympathetic? I *initiate* these conversations all the time, why don’t I like other people doing it?

It’s September. This shouldn’t be an issue.
It was two weeks ago. It’s over. This shouldn’t be an issue.

Run the following scenarios: Stuck in a lift. Locked in a car. Generic fictitious heatwave scenario. Google things. Regret it immediately.

“We haven’t had a very good summer-“ Haven’t we? HAVEN’T WE? Later, I reason that most people probably care more about sunshine than heat, and maybe there haven’t been as many hours of sunshine, even though the sunshine we’ve had has been so warm. I’m such a mess.

I JUST SLAYED A METAPHORICAL ARMY OF ZOMBIES AND NO ONE NOTICED.

“Hottest day of the year, and we decide to go into an unventilated basement, hahaha-“ NOPE. Pause the interview. Breathe. You can do this. It’s just an offhand comment, skip the next 30 seconds or so and they’ll have moved on. In hindsight, I’m fine, they’re fine, everything’s fine – in a way I find it funny, because special interest, you had one job! But it’s so scary, and so fucking pathetic, that my brain can just *do* that. How do I balance my thoughts when the only thought is fleeting wordless terror?

I feel guilty for the rain. People are wet and miserable and I wanted it. At the same time, I kinda resent that misery – I want to snap “it’s not THAT bad, we’re ALL wet, you’d be moaning if it was sunny too” and see how they like it. But two wrongs don’t make a right!

WHY AM I LOOKING UP OLD POSTS I KNOW WILL MAKE ME FEEL TOO AWFUL TO READ THEM PROPERLY. WHY AM I DOING THIS. WHY.

The eternal balance of trying to appear calm enough that people don’t think you’re ~weird~ and draw undue unhelpful attention to it, but not so calm that they don’t take your anxiety seriously. Like everything else. Disabled enough but not too disabled. I don’t think it’s possible. I think it’s a trap.

5th September, and I’m still seeing scary heatwave articles shared in my news feed. It’s probably nothing though, right? Certainly nothing compared to what we’ve had, at least. Still, I don’t know how to properly react.

Have I actually got to do another sixty of these???????? I wonder if I’ll eventually just get over it. I must do eventually, surely. At least I hope so…

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Why “technology is ruining society” is my number one pet hate

(CONTENT NOTE: Discusses abuse and harassment)

It ranks above fandom gatekeeping. It ranks above people thinking the ECHR is the EU. Believe it or not, it even ranks above the weather. Seriously, nothing turns me into this bird faster than the constant bombardment of “Kids these days and their screens!” “Nobody talks anymore, they’re all just staring at their phones like zombies!” “Look up!” Stop it. Please. You’re being kind of awful. Here’s why.

Reason number one – It is massively, massively ableist. Not everyone can physically leave their home, or do so on any regular and reliable basis. Not everyone can physically access all social spaces with ease. Not everyone can speak verbally, or understand verbal speech, or do so at all times and in all circumstances. Not everyone can go to your loud, crowded big night out without suffering a massive sensory overload. (On a related note, not everyone drinks alcohol either, which is another huge barrier to IRL socialising when so much of IRL socialising revolves around alcohol.) In short – not everyone can socialise in the same way as you can. Where’s that famous neurotypical theory of mind?

At this point another pet hate of mine becomes relevant – the defensive abled response of “no, I don’t mean you, I mean those other people that don’t really need it”. NO. Remember – you cannot tell just by looking who is and is not disabled, and we are under no obligation to disclose to strangers. Even if you could magically know the disabilities (or lack thereof) of all individuals you meet, remember that many disabled people are constantly told we’re not disabled enough, our disabilities are not valid, and we’re just being lazy – when you say “Well those who REALLY can’t…”, we don’t think “That applies to me”, we think “Maybe I need to try harder”, and that doesn’t end well. In any case, why should the “normal” moral standard be a standard which some people cannot possibly achieve? That, right there, is the social model of disability. That, right there, is othering. Don’t do it.

Reason number two – Social media allows people to identify with each other, unite and speak out against oppression. If you are part of a minority of any kind, it may be difficult to meet others belonging to that minority because, by definition, you are outnumbered. If you are part of a marginalised group, it may be difficult to meet others in that group in some cases because the threat of oppression and abuse force many people to hide that part of themselves, at least in public spaces. Even media representation of marginalised groups is often abysmal if present at all, leaving many people without others like themselves to identify with. And even if you do manage to meet others, you may not be able to talk openly about that oppression in public spaces, where the oppressors are present, because at best we’re taught that doing so is impolite, and at worst you will be abused.

The internet and social media can be a hostile place for marginalised groups, but at the same time, it has helped to break down those barriers. Groups, forums and hashtags are established specifically for marginalised groups, and specifically to talk about oppression and social justice. If you’re the only one in your school, workplace or even town, that doesn’t have to exclude or silence you – there are others in the world at large, and many of them will have an internet connection. If you don’t have the money or the spoons to travel back and forth to protests and events which are often concentrated in the biggest cities, you can participate in that conversation by other means online. Social media brings with it the ability to remain anonymous, and this ability is unfortunately abused by many who wish to harass and abuse others without fear of consequences. On the other hand, it also allows survivors of abuse and harassment to speak out about their experiences without fear of retribution by their abuser, allows those with anxiety to write persuasively and change minds in a way their brains won’t let them do out loud, and simply allows people to be honest about things that have happened to them without the baggage and repercussions that come with accusing specific individuals. I choose to write this blog anonymously for all of the above reasons – a lot of what’s written here, or on my Twitter, would never have been expressed at all without the internet.

Indeed a lot of it would never have even entered my thoughts without the internet, because I got into feminism and learned about many social justice concepts through social media, which brings me to reason number three – The idea that online chat is “less real” is just… nope. You think thoughts, type corresponding words somewhere I can see them, I read them, understand their meaning, have thoughts about it and send you corresponding words in response. It’s conversation. It’s real. It creates discussions, teaches knowledge, changes opinions, sparks interests, sparks friendships and relationships. Why is it less valid than a verbal conversation? Why should the things I say matter less than the way I say them? Why is my terrified, immediate “sorry!” to a stranger who startles me on a bad sensory day deemed more real than a Facebook chat to a friend from uni about our new jobs and our favourite music?

Enter reason number four – It facilitates IRL relationships too. I went to university, away from home, and made lots of friends there. Many of my close friends live in different places. Lots of people from school also moved away, to their own universities and careers and families and lives. Some relatives live far away. And thanks to social media, we can all keep in touch. Isn’t that incredible? Like many autistic people, I find using the phone incredibly difficult; when I’m at uni, Skype and Messenger allows me to talk to my parents regularly and have a genuine conversation with them rather than having to focus on interpreting the phone noise as words, filling the silence, and calming my anxiety. And when I’m at home, social media allows me to have genuine conversations with my friends without the same obstacles.

What if that technology was not available to me? Cue reason number five – We wouldn’t all be happily chatting away to each other if smartphones, MP3 players and social media didn’t exist. Autistic people, and disabled people in general, also existed back in your cherished “good old days” when ~everyone played outside~ and ~everyone talked to each other instead of staring at their phones~. If those people do not feature in your nostalgic memories, it’s because they were discriminated against, denied access to the schools and workplaces and social spaces you accessed, and excluded by methods of socialising which were inaccessible to them. Even if we leave disability aside (as abled people love to do), people in public spaces did not spend all their time talking to strangers before they had earphones to listen to and screens to look at. Just as it is today, reading was a popular solitary hobby, and there are countless black and white photos of trains full of people reading newspapers to counter the “everyone talked to each other” myth. Alternatively… people just sat there. And didn’t talk. Try it. It’s entirely possible.

Unless, of course, somebody is trying to make you talk. Reason number six – Sometimes it’s about entitlement. Today, an article about how to make women wearing headphones talk to you is doing the rounds on Twitter. It features such gems as “if she ignores you, it’s a test” and “allowing her to ignore you or control the interaction is a common mistake”and is clearly about male entitlement and harassment. (Click here for why it’s not “just making conversation” and click here if you’re tempted to make it about autism and “not understanding signals”). This article is a very extreme example, but it did get me thinking about the links between entitlement to people’s time and attention (especially male entitlement towards women) and my number one pet hate, the “technology is ruining society” rhetoric. Smartphones in public apparently make people angry because “nobody’s talking to each other” but as we have established, people on social media are talking. They’re just not talking to the people who happen to be in that physical space. They’re just not talking to you. Why are you so angry about that?

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The Self-Care Strikes Back

(As the title suggests, this post follows on from an earlier post – specifically What Self-Care Means To Me)

I still exist! Sorry that posts haven’t been as regular as I’d like. I’d hoped that I would just get straight back into it after finals, but since then I’ve had two new part-time summer jobs (long story), degree results, one of the worst meltdowns I’ve had in years (the same long story), the annual zombie apocalypse (…okay, so it was a heatwave), graduation, a close relative ending up in surgery (they’re very much on the mend now) and everything slowly falling into place for moving to a brand new university next month. It’s been… eventful, and it’s safe to say I haven’t always dealt with things incredibly well.

I realised a few weeks ago that I’d fallen into a trap: I got into certain good self-care habits when I was in a worse place a while back, things improved, I got complacent and didn’t really maintain those habits, so when bad things happened it all kind of fell apart. This means I’ve been consciously trying to think about what has worked for me and why, so in an attempt to get back into regular blogging (er, no promises…) I thought I’d write a sequel to this post and share some more of what self-care means to me, a year and half later, now that I’ve properly remembered it’s a thing again:

Goal-Fish. This site (which you can read about in more detail here) allows you to enter in various constraints (including pain/energy/spoons, time, money, sensory overload…) and receive random tasks from a customisable list, one at a time, on a minimal sensory-friendly (and mobile-friendly) interface. As someone who struggles with executive functioning when presented with giant blocks of time and relative freedom on how to spend it, this has kind of revolutionised my non-term time. I’ve started using it again recently and it told me to blog and now I’m actually here! As well as getting stuff done, this can also be a good source of distraction when that’s helpful (yep, the other reason I’m blogging is because there are still some rogue zombies around…)

Literally endless notes to myself. I used to use Evernote for this purpose until they changed their pricing options earlier this summer; I then switched to Google Keep, which I’m still getting used to. If physical paper notes are more your thing, that’s cool too! As well as to-do lists, which keep me from accidentally dropping the ball somewhere, I have a “positive things” list (as suggested by the uni counselling service I saw last year) in which I record small victories and other general things that reminded me I’m not actually as awful a person as my brain likes to tell me. I also like using it to just write down thoughts and feelings in my own time without the pressure of being listened to (which sometimes forms the basis of talking to friends about it) and little pep talks to myself that I can go back to when relevant.

Spotting my automatic thinking traps. Another big takeaway from counselling, and another big use for Keep – writing down my thoughts, actively checking for unhelpful thinking styles (catastrophising, assuming what other people might think of me or what awful consequences might happen, discounting the positives – there are various other example lists online) and writing out more balanced thoughts which challenge those traps. Sometimes I can do it in my head, but even then it’s usually in hindsight!

Special interests. I said this last time, but might as well say it again. File under “distraction” and “stimming”.

Stimming. Well, that happens anyway, but I mean more “remembering to pro-actively self-regulate before it’s too late”. What exactly that entails can vary from situation to situation and from person to person. In my case, it tends to involve earphones.

Remembering that there are good days and bad days. Just because I could do something one day, it doesn’t mean I should beat myself up over not being able to do it another day. Conversely, just because I’m having a hard time one day, it doesn’t mean it will be that way forever.

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Things I Wish I Could Say When It’s All Falling Apart

I’ve had a weird couple of weeks. There was a lot of uncertainty, although that settled down towards the end of this week. There was the worst meltdown I’ve had in years. And now there’s a heatwave coming, which my hypersensitive anxious brain interprets in much the same way as “there’s a zombie apocalypse coming”. Tonight I’ve been thinking about a common thread running through the various different low points: needing more than ever to express things and seek help and reassurance, but not having the ability at the relevant time to do so verbally, or not doing so for fear it sounds ~weird~ or ~silly~ to others. So here’s a list, off the top of my head, of things I wish I could have said to the people around me about when I’m not coping so well.

  • Meltdowns are not just about the behaviour that you, a neurotypical observer, can see from the outside. For me, meltdowns feel different each time, depending on the circumstances. The main things I remember from this time is lots of crying, the mother of all headaches, and feeling sick whenever there was new input. This meant there was no way I could look at my phone screen, so there was no way of contacting friends even if I would have had the typing words to explain it all. It’s inescapable and at the time, it feels like nothing will be okay ever again.
  • If I’m going into meltdown and I walk away from the conversation, don’t follow me. And don’t pressure me to talk right now, because I can’t.
  • For you, this was upsetting, but probably just one of those weird blips that’s over now. For me, this was huge, and it won’t leave my thoughts so easily. For a while now, I’ll be operating in a sort of survival mode – the primary focus of decision-making is that I don’t want that to happen again. This probably means I’ll be more anxious than usual, too.
  • If I’m apologising more than usual or otherwise appear more anxious than usual, the correct response is something like “You seem a bit nervous, are you okay? What’s up?” The correct response is not “stop that!” as if I have a choice.
  • If I’m in meltdown, honestly there is no correct response; only time will calm me down. Having said that, “stop getting upset!” is an incorrect response.
  • Use some of that empathy and theory-of-mind that you claim to have – just because something isn’t scary or hard for you, doesn’t mean it isn’t scary or hard for me.
  • I am so so so super anxious right now. It would be nice if I could be open about that without feeling silly and pathetic. You probably don’t think I am, but some would, and that’s enough to put me off opening up. Hence all the apologising suddenly.
  • On balance, today has gone well; there have been wobbles, but I’ve taken an approach of lots and lots of distraction (for example, I’m actually blogging for once!) and it’s all under control. Again, it would be nice if I felt able to talk about this.
  • A lot of small talk right now is going to trigger that anxiety response. And I’m not sure there’s anything that anyone can do about it. Sorry.
  • I’m withdrawing a lot, I know. It doesn’t mean I’m angry with you or upset with you. It just means that I need space, that a lot of input right now is overwhelming. It will pass, I promise. At least, that’s what I’ve been telling myself.
  • Mainly,  I want someone to tell me it’s okay and not shameful to feel like this. I feel like I’ve got a better grip on the rationalising side of things now – this will pass, and it’s not going to hurt me – but I do find reinforcement of those things helpful,  even if it seems obvious and patronising. What I don’t need is your judgement.
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Remain Calm…

Even yesterday, I saw posts and heard IRL conversations from people still undecided as to how to vote in today’s EU referendum, in some cases physical anxiety over whether their view might be the wrong one, in some cases saying they shouldn’t be voting at all because they don’t feel knowledgeable enough or confident enough. I’ve heard this stuff mostly (though not exclusively) from women, and in particular the anxiety/mental health side of things is really affecting a lot of people in a group I’m in for autistic women, and that makes me really sad given that marginalised groups such as these are likely to be hardest hit by any negative consequences of the referendum.

First things first – this isn’t really why I wanted to write this post, but for the record. I will be voting Remain. I’m not going to go into all the ins and outs of why – there are some brilliant summaries available elsewhere – but I’ll attempt a quick summary. Firstly, because of the many and varied protections and benefits the EU provides, ranging from legislation protecting workers’ rights to funding schemes such as Erasmus (my year studying abroad taught me things I could never have learned from textbooks) – sure, technically we could participate in some of that stuff without being in the EU, but given the current government is relentlessly cutting funding and disregarding  the rights of everyone but themselves, in reality we wouldn’t. Secondly, the immediate economic effect would hit the poorest, most vulnerable people hardest and would probably be used to justify further austerity – not everyone can afford to take the risk of just waiting for eventual recovery. Thirdly, and most importantly, regardless of individual reasons for voting Leave, I think a win for Leave would be taken as a win for the toxic racist rhetoric of the likes of UKIP and Britain First, and that is absolutely not the route I want this (or any) country to go down.

Having said that, why I really wanted to write this post is that the majority of official and unofficial campaigning tends not to consider some of the people I spoke about above – it assumes an abled, neurotypical audience, it assumes people are able to jump right on board and share views on command, it assumes people aren’t already overwhelmed by the conflicting and often judgmental and aggressive things bombarding them from all sides. On that note:

  • Please vote if you can – young people in particular are often underrepresented, marginalised groups generally are often underrepresented,  it’s okay to not feel completely confident in your choice (see below) and, unlike general elections where you vote within a particular constituency where the result may already be certain, your vote in the referendum counts as much as anyone else’s. BUT do not shame people who can’t – some people are disabled, some cannot physically access a polling station, some may try to leave the house and then have a debilitating panic attack, some people cannot register to vote due to their immigration status or because their details on the electoral roll would leave them at risk of abuse, not everyone has an available proxy and not all of these issues are predictable enough for “just get a postal vote” to be the solution. Politics goes beyond the ballot box, and those who cannot contribute today might still be able to contribute in other ways tomorrow and beyond.
  • It’s important to do some research, not least because both sides have used misleading “facts” and newspapers have been biased as ever – BUT (and I’m particularly talking to women here, although this does apply to everyone) it’s okay not to know everything. I don’t think anybody does. Seriously, three weeks ago I sat a university final exam in EU law and part of me still feels like I’m not quite qualified enough to be writing this. I find it so frustrating that some people have expressly asked around for unbiased sources and have clearly done their research but still feel an overpowering surge of panic and self-doubt about going to vote, whilst other people have made up their minds very confidently on the basis of a couple of newspaper headlines and Facebook memes. To be honest, if you’re even worrying “what if I’m wrong?” you’ve probably put a lot more thought into this than some people who will be voting today, and you have just as much of a right to express your view in the ballot box as anybody else.
  • As mentioned above, this isn’t like a general election and every vote really does count, so do speak up where you can – BUT it’s okay not to be constantly on the defence in situations you don’t feel safe or comfortable in. If you’re not normally someone who can get through difficult interactions without panicking or shutting down or maintaining coherent speech and so on, that isn’t going to change just because there’s a referendum. If you’re in a situation where abuse is a factor, your safety is the most important thing to consider. And at the end of the day, everyone has their own free will – campaigning and persuading does make a huge difference, but at the same time, if this doesn’t go the way you want it to, it’s not solely your fault for not confronting that one person who shared a horribly inaccurate Facebook post the other day.
  • It’s okay to feel anxious. Believe me, I do, and there are so many people who would be affected far more badly than me. At the very least, in just a few hours, all the campaigning and arguing and the pressure will be over. As I’ve said, I hope the result will be Remain and we can put this whole chaotic mess behind us tomorrow. If the result is Leave, as bad as the consequences may be, it’s not necessarily the end of the world – we can still fight austerity, we can still fight oppression, we can still fight the hatred that has been stirred up, we can still fight for fundamental rights. Again, politics goes beyond the ballot box.
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An Unexpected Knock

(TRIGGER WARNING: This post discusses harassment in the context of an abusive relationship)

Part One

I’m at home, in the dining room, with my family – maybe I’m eating, maybe I’m studying, it depends – when there’s an unexpected knock at the door. Silence. We all look at each other furtively, nobody knowing quite how to react. Dad gets up to answer the door, slowly, without disturbing the tension, closing the dining room door behind him. Meanwhile, I tense up, fighting the urge to run into the kitchen like I used to.

Whoever it is, it isn’t you. However much my brain goes into overdrive at the sound of that knock, I know rationally that it’s never actually you anymore. It’s been years since I left, and since I eventually stopped responding out of fear. It’s been months since I’ve had any contact from you at all. Conversation gradually resumes, and nobody says anything more about it, because nobody needs to. I try and push you out of my mind, with varying degrees of success, at least until next time. Still, I can’t help but notice when there’s movement outside the downstairs windows; it’s always just shadows, always just leaves in the breeze, but you never know, next time that might not be the case.

Part Two

I’m at uni, in my room, finishing off the revision notes I’d been working on that morning. I put the notes away, move the folder to one side and open Facebook. There’s a message request – a system probably intended to protect people like me from people like you, but which also “protects” me from group chats with friends, and honestly, I can’t ignore that “(1)” without knowing whether or not it’s you lurking behind there.

Sure enough, it’s you. Nothing new in the content. You swear you only want to talk – why can’t we just have a civilised conversation? And if I still don’t want to talk to you, could I please let you know either way? Eye roll. Ignore. Go for a walk. I don’t let you get to me anymore. What happened with you has become simply a part of my past.

Except it hasn’t, because you won’t let it. Every time, just as I think it’s over, you’re back, and it dredges up years of old thoughts and feelings. I fixate – perseverate, I guess. I bring up old messages, old articles I’d sent to friends which reminded me of my own experiences, old blog posts, old memories. It hurts, more than I can describe, but I feel compelled. I guess I have quite an analytical mind. I want to understand. More than anything, I want to understand how it’s come to this, how someone who loved me and who I loved so deeply could cause me such terror. It’s my fault. I’m over-reacting. Or it didn’t really happen. The only logical explanations according to this illogical society as internalised by my own thoughts.

A couple of days later, I’m online in between revision topics and I hear an ~oh so romantic~ story about a man who got his girlfriend back by writing to her constantly for months until she “caved” and it feels like a punch in the stomach. I feel like I’m back at square one again. You never give the wound enough time to heal. They seem really happy now though, so maybe that really is just normal romance, maybe it’s all my fault, I’m over-reacting, or it didn’t really happen.

I realise that the fact I’ve reacted so badly demonstrates that you, in some small way, still have power over me. I then realise that this is also demonstrated by the fact that I’m spending all this time and energy thinking about you at all, especially at this crucial time in my degree. It’s all in my head though. I should be able to just stop doing that. But I can’t, and it’s my own fault. I spend the evening writing and deleting several walls of text, intending to post in a Facebook support group, and when I eventually force myself to post something I take it down the next day because, for a reason I don’t even know, I’m the one who feels ashamed.

Part Three

I’m walking to the town centre back home, and I see you behind me, running after me, shouting about how you only want one more chance.

I’m in the dining room, and you’ve just come in. You’ve got my phone. I didn’t see you take it, but somehow you have it, and you’ll only give it back if I do what you’re asking.

I’m at a pub with friends, and you’re there with your arm around me, acting like we’re a couple, nobody knowing how terrified I am that this is happening again.

…I’m in bed, in my room at uni, the radio blaring on my alarm clock. I sigh, get up, and wonder if I did anything to give myself nightmares. I don’t remember dreams much. But I know that you’re a regular feature.

Part Four

I’m at uni, in my room, finishing off the revision notes I’d been working on that morning. I put the notes away, move the folder to one side and open Facebook. Again.

This time there’s a friend request. I never expected it to be you. Shit, I forgot to block when I ignored the message request. Or rather, I felt too guilty to block. I do it this time though; and when I do, I’m redirected to a whole list of my blocked accounts, all under the same name. Your name.

The self-doubt I’d worked so hard on getting over this week comes rushing back in. The rational part of me realises this, remembers that I’d even planned out a blog post last night and set time aside this afternoon to write it, but still, for the next hour or so, I barely recognise any of that narrative. Because it’s all my fault really. Or I’m over-reacting. Or it didn’t really happen.

I take a deep breath, think “business as usual” and get back to revision, trying to drown you out, trying not to let you have that power over me again. It’s too early to tell whether I’ve been successful in that regard.

But I don’t think I’ll be comfortable with unexpected knocks any time soon.

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Anonymously Autistic

#ActuallyAutistic - This site is intend to inspire through sharing stories & experiences. The opinions of the writers are there own. If you have a medical question talk to your doctor. Thank you.

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