Feminist Aspie

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.

5 Comments »

Fine, Let’s Talk About The Autism Life Expectancy Study

(TRIGGER WARNING: This post is about the autism study that’s been all over the news this week, which means it discusses premature death, suicide, abuse, autism-cure-rhetoric and other aspects of systemic ableism)

For those of you who aren’t aware, a Swedish study has found that autistic people tend to die earlier than the general population. (I have several issues with the BBC article I’m linking to, but chose it because it includes lots of statistics and information) This is not a blog post I want to write. It’s not something I want to spend too long thinking about, and the same probably goes for most of you too. But I’ve ended up here anyway, partly because bottling things up isn’t particularly healthy and partly because I think there are things that need to be said.

I first saw this on a Facebook post with lots of comments, mostly from parents/relatives of autistic people, saying the link should not have been posted because it’s evidently upsetting and they thought we should be focusing on the positives. And yes, the post in question should have included trigger warnings from the start. But unfortunately, ~focusing on the positives~ won’t make the problem go away. Supporting autistic people, and disabled people in general, isn’t just about inspiration porn, it requires recognising that we face problems and a huge number of them are created by abled people. In particular, neurotypical people should be aware that most things written about autism in mainstream media can be that hurtful to us. Something to bear in mind.

Anyway, the study is important, but we should keep this in perspective – it’s one study. The reduced life expectancy is on average, not universal – on the one hand that means you shouldn’t just declare it a load of rubbish because you know someone who knows someone who’s autistic and in their nineties, but on the other hand it’s not guaranteed to apply personally to you or your loved ones. It should also be noted that autistic people who obtain an official diagnosis (and are therefore included in the statistics) are disproportionately those who are for whatever reason less likely to pass for neurotypical, and unfortunately, those people will also disproportionately bear the brunt of mistreatment and abuse of autistic people. Finally, be aware of biases in how the findings are framed in media reports – the new report (although not the study itself) is by Autistica, formerly known as “Autism Speaks in the UK” until it severed ties in 2010, and the autistic community have made their feelings on Autism Speaks and their pro-cure agenda very clear indeed.

According to this study, one of the main causes of the reduced life expectancy is epilepsy, which is often co-morbid with autism. I don’t have epilepsy and don’t want to speak for those who do, so at this point I’d like to direct you to a couple of articles by the wonderful Amy Sequenzia, who is also autistic and has epilepsy. As far as I can work out from what I’ve heard, and I may well be completely wrong, a cure for epilepsy is largely wanted by those who have it, which is not the case for autism – if that’s the case, why not direct research funds there instead of co-opting those deaths to frame autism as the tragedy?

Another big contributor to premature deaths in the autistic population is suicide. Amongst those autistic people who are not considered to be intellectually disabled, suicide was found to be the second biggest cause of death after heart disease; and whilst heart disease is a common cause of death more generally, I would not be surprised if the stress and anxiety of being made to fit into an ableist, neurotypical-centred world plays a factor in that too. I’ve also seen comments elsewhere making the very good point that it can often be difficult for autistic people to access healthcare generally – due to sensory issues making it difficult to know there’s something wrong, but also due to inaccessible communications and environments and being presumed incompetent once we are able to make a point – and this may also have negative consequences long-term. A lot of this boils down to being forced to act neurotypical at all costs, dealing with the sensory assaults of environments created by people who don’t acknowledge that we exist or that autism is something that affects us above and beyond how it affects neurotypical people who have to ~deal with us~, and being bullied and abused and outcast for who we are. And all of those things are preventable.

I’ll repeat that: A lot of this is preventable. Through acceptance, accommodations and services, without having to try and make us neurotypical when that isn’t possible, at least not if you want us to still be us.

Mostly, this has made me feel angry on a societal level (because this is even a thing, and because of the way it’s being framed in the autism-as-tragedy manner) rather than scared on a personal level (I can barely come to terms with my own adulthood, never mind my own mortality!) but having said that, the timing wasn’t necessarily brilliant for me, and I do spend probably far too much time worrying that all the worst-case scenarios – the high rates of unemployment, the high rates of social isolation, now this – might be inevitable. But I want to end on something hopeful. It’s likely that this news will be a wake-up call for many – for autistic people to practice self-care as best we can and seek help when it’s needed rather than suffering in silence, and for neurotypical people to actually provide that support or at least think about whether their attitudes and actions are considerate and/or damaging to the autistic people in their lives and in the wider world.

We can fight this. We can change this. The next generation of autistic people do not have to meet the same fates as the last.

11 Comments »

Think Before You Food-Police

(I’m really sorry that this is only my second post this year – I promise I haven’t abandoned the blog totally, just that I’m basically in finals mode now, so I don’t expect to get back to any sort of regular posting until summer. TRIGGER WARNING: This post discusses food, food-policing and disordered eating.)

Food is hard.

Considering that it’s literally necessary for survival, food is really, really hard. For many of us, for different reasons, in different ways. To top it off, food and diet seems to come with a particular stigma, with individual morality attached to it: the idea that if you don’t eat this, if you don’t cut out that, if you don’t have a perfectly balanced/perfectly ethical/perfectly “normal” diet, you’re a bad person. In that sort of atmosphere, we can’t talk about it – and if we can’t talk about it, we can’t ask for help or share advice about the subsection of these varied issues which can be resolved, so we’re less likely to ever be able to meet whichever standards are being asked of us. Food-policing helps no-one.

When people think of food-policing they tend to think of dieting, fatphobia, forcing people (especially, but not exclusively, women) into starving themselves to meet impossible beauty standards and so on; sadly, this remains a huge issue. But food-policing has many other faces. You may have noticed that I included “perfectly ethical” above, and – in the interests of honesty – this blog post is inspired by a thread in which people were claiming veganism is necessary for feminism and dismissing all the various obstacles to veganism that were brought up, so that’s the particular strand of “if you don’t do XYZ with your diet then you’re a bad person” I had in mind with this post. Having said that, cutting meat and/or animal products out of your diet is also subject to pretty relentless food-policing, whether by outright mockery or concern trolling and telling vegetarians/vegans that they can’t possibly be healthy when they know they are. People with certain food allergies or intolerances are routinely mocked for those too, even though they have absolutely zero choice in the matter.

So, before you judge, you may want to consider the following:

  • Class is a thing. Poverty is a thing. Not everyone can afford to implement whatever you’re advocating. If something has saved you money personally, that’s great, but options that are cheaper long-term often require higher costs initially, which can mean it’s not an option at all.
  • Whilst money has a big part to play itself, financial difficulty brings other difficulties too. After long working days, many don’t have the time or energy to cook in a certain way, or teach their children to do so. Poverty can also be linked to mental health problems, which make food harder in their own right.
  • Disability is a thing – or rather, it can be many things. Some people need to eat certain things. Some people cannot eat certain things – at least not without really messing up their health – and this often eliminates lots of food from the options pool from the start. Adding additional restrictions on top of that can be expensive at best and downright dangerous at worst.
  • It isn’t always just about the actual eating of the food – planning, buying, and preparing food requires spoons and energy and executive function and not everyone can take those things for granted. Personally, it’s this stage which is often the giant hurdle for me. At the moment I rely quite heavily on the fact that my university offers meals during the week, and things really went a bit pear-shaped for a while on my year abroad, which also scares me for the future. And again, the constant feeling of being judged that comes with food adds so much to that – the more I’m worrying about what other people in the kitchen will think if I make a “silly” mistake, the less likely I am to make it into the kitchen at all, which means I’m even less confident about it, and so on.
  • I feel like this shouldn’t need saying, but eating disorders are a thing, and constant bombardment with moral judgments about what you as an individual should and shouldn’t eat can be particularly damaging for those affected.
  • If you fit into one of the above categories and you’ve made it work (or know someone who is/has), that’s fantastic, but remember you (or they) are not everyone. Even the same disability can affect different people very differently – autism is just one example of that. My main issue here is executive function and anxiety as mentioned above; for others like me, the main issue here is sensory overload, with some tastes and textures being physically painful; for others still, the main issue might be diverging from a long-established, safe routine.
  • “I can’t” does not always mean “I can’t yet. For example, even if I did want to cure my autism (which I don’t) it wouldn’t be possible to do so. The idea that if we’re not where you want us to be with food then we’re just not there yet is incredibly damaging. As mentioned above, sometimes food-policing can start from a place of good, and of course increasing accessibility is generally better than assuming accessibility cannot be achieved (although it’s funny how this is only considered when accessibility means doing what abled people want), but no amount of shouting at people because something may be possible for them in future does anything to actually help them do it.
  • Any sort of rhetoric revolving around ” well, if you genuinely really can’t…” plays right into the hands of an overarching ableist society in which disabled people are constantly being told we’re not disabled enough for accomodations. Too often, nobody is considered genuine in this narrative. Given this context, I imagine very few disabled people would respond by thinking “Oh, that includes me” even if you intend to include them – it’s more likely that, like me, they’ll think “well maybe if I ~just tried harder~…”
  • Don’t assume what people are or are not dealing with. Evidently, there’s a huge stigma around food, and this means the people you’re stepping over are less likely to speak out about it at all, never mind openly identify as one of the people you’re stepping over. In the case of disability, not everyone with a relevant disability will even know they have it (for instance, autism is hugely underdiagnosed in adults, people of colour, and women).
  • Unless you’re a doctor, don’t assume you know what’s healthy for a person better than they do. Contrary to popular belief, weight isn’t always an accurate indicator of health at all. And yes, vegetarians/vegans who are able to access sufficient non-animal sources of nutrients can and do live healthy and active lives, sometimes more so than some omnivores. Mockery out of ~concern~ is still mockery.
  • “But some people do use their disability as an excuse-“ NOPE. Stop. This is often just another version of “just try harder” in practice. This isn’t just fun for us, and it definitely isn’t convenient to have to carefully navigate that thing that’s literally necessary to survive and face everyone else’s scrutiny on top of that. Stop.

Food is necessary. Yet, food is hard. Think before you make it harder.

10 Comments »

The Elephant In The Room: Emotional labour link round-up

Every time I come home from university and get properly re-acquainted with domestic family life again, I always end up wanting to blog about the same topic, yet I don’t think I’ve ever made it beyond a muddled outline in my drafts. It’s difficult to articulate without feeling like I’m making a fuss over nothing. It’s a big pattern of smaller things that, taken in isolation, seem barely worth mentioning. It’s definitely there, and it definitely scares me as a young autistic woman who only just about manages to look after myself without hitting total overload half the time, but I can never quite manage to convey it in words in a remotely satisfactory way.

Luckily, a load of other people already have. Over the past few weeks I’ve come across some really great pieces online about emotional labour, constantly left to women and constantly unnoticed and unappreciated, so I thought I’d share them here:

“Housework is not work. Sex work is not work. Emotional work is not work. Why? Because they don’t take effort? No, because women are supposed to provide them uncompensated, out of the goodness of our hearts.”

Do feel free to share further recommendations (and yes, that can totally include self-promotion) in the comments!

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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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