Feminist Aspie

Autistic people need diagnosis, not denial

Autism-related support often requires paperwork, or at least some evidence of a formal diagnosis. I feel like neurotypical people forget this, particularly neurotypical parents, teachers and professionals when traits are picked up on in children.

“We don’t want to reduce them to a label” is a bad reason for withholding assessment and diagnosis. I’d still be autistic whether my diagnosis happened or not – but without it, I wouldn’t have been able to understand myself through that lens, and my self-esteem would probably be through the floor after years of expecting myself to conform exactly with my neurotypical peers. And besides, giving someone a label can only be said to “reduce” them if you don’t see that label as compatible with the rest of a person’s humanity, and that, folks, is ableism.

“But they get good grades” is a bad reason for eschewing formal procedures, because believe it or not, grades aren’t the only thing that matter. So many aspects of a child’s life aren’t measured by their grades.

“But they’re so high-functioning” is a bad reason for locking someone out of the system. I’ve written before about why functioning labels are unhelpful and ableist, but for these purposes, the important point is that how well someone can pass for neurotypical (and let’s face it, that’s what neurotypicals mean by “high-functioning”)  can and will change as the person’s life changes.

In particular, people who are deemed “high-functioning” at a young age often struggle much more with the increased demands of adult life. This isn’t something to be ashamed of – or at least it shouldn’t be. With the right support, we can still thrive.

With the right support.

But support requires paperwork.

And some adults in various positions block paperwork in the toxic push to distance children from their own neurology, whether by forcing them to pass for neurotypical or insisting on pretending that they are indeed neurotypical.

When these kids grow into adults, and find they need more support, they may engage with the formal procedures themselves and at long last get the paperwork they need. But a great many of them will be told “But you’ve gone this far without support, so you must not need it”.

Intentionally or not, when you try to distance autistic people from their autism, you’re setting them a trap.

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Why is fair and equal pay still up for debate?

Doing the rounds on Twitter this morning is this clip of a Polish MEP arguing that women should be paid less than men. To quote directly: “And of course women must earn less than men, because they are weaker, they are smaller, they are less intelligent.” …Yep. Really. If you’ve made it on to this blog, I’m going to assume you already know that these views are abhorrent, that equal work deserves equal pay regardless of any stereotypes attached to the worker, and these discriminatory stereotypes certainly can’t be used to justify further discrimination in pay, because that’s just an awful circular argument when instead we should be fighting to end discrimination in the first place. At this point, in 2017, it isn’t even up for debate in the minds of all but the most extreme misogynists. Incidentally, a quick scroll through Google and Wikipedia shows that Janusz Korwin-Mikke has daughters, but that evidently hasn’t even stopped him being actively sexist, never mind giving him a free pass to speak on behalf of all women on the basis that he happens to be a parent of girls.

Keep this in mind.

Doing the rounds on Twitter yesterday was a ~debate~ over whether or not disabled people should be “allowed” to work for less than the minimum wage. (I’m not 100% comfortable giving that article more clicks, so instead I’ll link to this great Twitter thread by Stavvers which does also link to the article if you’re interested.) This argument did not come from a disabled person who wants to be allowed to work for less than the minimum wage; it came from an abled person who happens to be a parent of a woman with Down’s Syndrome (whose opinion, as far as I can tell, has never even been asked for). She also happens to employ disabled people in her own business; she’s effectively saying she should be allowed to pay her own employees less.

To be fair, a lot of people seem to be seeing this for the awful retrogressive ableist argument that it is, but it turns out there’s also a worryingly high number of people who don’t – or at least, they’re saying it’s so hard and complex, because it’s better than nothing and it could be a stepping stone and you can’t just easily fix society, y’know?  Maybe this shouldn’t have shocked me, but it did, because equal pay should not still be up for debate. Honestly, this post should end here. But given that these arguments do still have a lot of traction, I think it’s worth going through some of them.

Because it apparently needs to be pointed out, paid work and volunteering are not the same thing. At this point I feel I should say that I now volunteer with an autism organisation myself – I won’t go into details for anonymity reasons, but I will say that I and the other autistic volunteers have been treated with nothing but respect from the start, it’s all about real autistic participation in shaping how they run and it’s an incredibly rewarding experience, and it’s absolutely NOT  the same as a paid job. It’s volunteering, as in voluntary, as in I actively want to be a part of this and I’m not being pushed into it by other constraints, and it’s something I do every so often on an irregular basis for a few hours at a time around the degree that I’m doing full-time. If I got a regular job with them or somewhere else in the sector, I would expect to be paid, as their autistic and neurodivergent employees are. Of course, there’s also the ongoing issue of lengthy unpaid internships that basically amount to unpaid work, but that can’t be used to justify “allowing” (read: coercing) disabled people into unpaid work either – one exploitation doesn’t justify another exploitation, they’re just both exploitative.

And let’s not make the patronising assumption that disabled people are somehow exempt from the system of money. Disabled people are people – we need to eat, and have somewhere to live, and clothes to wear, and all kinds of other needs just like everyone else. Not all disabled people live with their parents or even have the option of doing so (it’s almost as if disabled people aren’t just extensions of abled parents or something…) and even for those who do, not all families can so easily support the needs (disability-specific or otherwise) of that person with their existing funds, especially as the Tory government continues to decimate disability benefits. A “fulfilling and purposeful life” is nice, but we also need money. And besides, why is work necessary for a fulfilling and purposeful life? What does that say about how society views those disabled people who are unable to work?

Another argument that I keep seeing conflates accessibility and adaptation of jobs for disabled people with paying disabled people a lower wage for some reason. It’s this idea of it being the first rung on the ladder, the idea that if only disabled people were “allowed” to work for less than the minimum wage, employers would jump to make all the accommodations necessary and eventually provide a fair wage. Even if I set aside my scepticism as to whether that would actually happen (why would employers want to take experienced disabled people on at a fair wage if there were allowed to take them on at an exploitative wage?), this ignores the fact that employers shouldn’t need cookies for bearing the oh-so-tragic-burden of accommodating disabled people – employers should accommodate disabled employees because it is legally required.

The next response is usually something along the lines of “but changing society is hard, this is better than nothing in the meantime”. And this is something I find really infuriating. Some accommodations are as simple as clear directions, as simple as moving to a calmer area, as simple as understanding and acceptance, basically as simple as not actively being ableist. That’s not the case for all accommodations for all people, but it would be a huge step forward, and it’s easy – if only abled people would listen. Some accommodations are less straightforward and would take longer to implement, but that doesn’t mean we shouldn’t even try. The gender pay gap persists after years of campaigning, but that doesn’t mean we should give up and accept that that’s the way it is, even though ending the gender pay gap would involve huge changes to the current way work life is structured which disadvantages maternity. Society has undergone lots of major long-term changes over the years – this is just saying disabled people aren’t worth making the changes for. The “better than nothing” approach is essentially expecting disabled people to just give up, to accept our lot, to be grateful for scraps because abled people couldn’t be bothered to give us anything better. “In the meantime” says that we should just wait our turn until a magical day in the future when abled people can be bothered, even though conceding ground such as this will decrease what little political will there is to actually empower disabled people currently. Discrimination is an artificial problem – rather than just acting like it can’t be helped, we need to end it.

These kinds of arguments were used decades ago, and apparently even today, to block equal pay for women. We know, fundamentally, that equal pay for women is not up for debate. So why are we even entertaining the idea for disabled people?

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So I had a huge shutdown and now I have a lot of feelings…

(CONTENT NOTE: This post discusses an autistic shutdown and internalised ableism)

I won’t be around this Friday, so I’m being prepared for once and writing this on Tuesday night! I’ll publish now too, because apparently I’m more impatient than I thought. On the other hand, I’m afraid this is going to be one of those whining-about-my-life posts, because it’s safe to say the past few days have been a bit of a mess!

So: after I’d already had an intense couple of days, some (relatively new) friends from uni started planning to go to Women’s March and I decided to go with them too. This was a Very Obviously Bad Decision. I was overloaded and panicky the second the packed tube doors closed, ended up non-verbal and frozen stiff on the outskirts of the huge crowd, and ultimately found myself zoning in and out on a tube back home before any actual marching had even started. Everything had fallen apart.

Firstly, I know I’m not going to be the only one who’s had similar experiences, and even the fact that I could get there at all is a huge privilege in itself. There’s a lot to be said about inaccessibility in activism; about how some forms of activism are prioritised over others and seen as more “real”, to the detriment of the disabled people (and people in general) who carry out important activist work in other ways; about how instead of add-on tokenism so disabled people can feel included, we need to actually BE included and have our needs considered from the start of activist planning; the list goes on.

For now, though, I want to focus on the shutdown itself and the torrent of internalised ableism and self-loathing that followed. For the rest of the day all I could think about was how terrible and useless and silly I was – not because I couldn’t participate (like I said, inaccessiblity is a thing), but because I couldn’t participate and I tried anyway. If I’d stayed home in the first place I could have at least got on with uni work and perhaps been more vocal online, but instead I put myself through all that stress and ended up writing off the whole day (and, I think, reduced productivity for several days) only to ultimately contribute nothing. If anything, I’d contributed negatively, in that my friends (who were in this situation with me for the first time) were also held back while they tried to figure out what was going on and how to help.

Ultimately though, I think a lot of those feelings just boiled down to frustration. To put it bluntly: I came up against a huge barrier that would not have been there if I were neurotypical. Of course, in many ways you could argue that happens all the time, but, at least in my case, it’s rarely so blatant, so clear-cut, that the only thing standing between me and the goal was my brain. It makes me feel vulnerable; well, I guess it makes me aware of the vulnerability that’s always there.

The other reason I feel vulnerable is because I suddenly feel very visible; it didn’t help that I posted a lot about autism on my Facebook last week for reasons I can’t really go into here. As soon as I had the typing words, I was venting about what happened in practically every space I could think of, to the point that I was a little worried about this post in case parts are recognisably lifted from posts and comments under my own name. But immediately after doing so, I’d feel embarrassed, whiny, silly, looking for attention (why is that even a bad thing anyway?) and if I’m totally honest, I still feel a bit like this now as I write.

I got some really lovely messages on the day from the people I’d gone with, and they were all really nice about it when I saw them again in class, but it didn’t stop me feeling… weird. Weird: My go-to word for a feeling I haven’t quite identified yet. Self-conscious. Guilty. Ashamed. Yep, I felt ashamed that I’d shut down like that so obviously in front of them, even though I know on a logical level that I shouldn’t. Telling the whole story to others has also been…weird. Difficult. Misunderstood. I always forget until I have to talk about autism-related concepts like meltdowns and shutdowns that most people don’t really know what it means without you explaining it (which is something many people struggle with, including myself), and even then, they don’t necessarily get it. It’s not their fault at all, they just can’t relate, it’s not within the realm of experiences they have had. And it makes me feel so alien.

If today’s energy levels and executive function are anything to go by, I’m still not quite over it yet. (Okay, so I wrote a long blog post, but I’ve barely scratched the surface of what I actually had to do today!) I’m not sure if I have actually been more sensitive and less able to handle social situations over the past couple of days, but I’m definitely more consciously aware of other times when I might be visibly different, or other things I find difficult that “should” be easy, and it feels… y’know, weird. Again, frustration and vulnerability and shame and feeling bad for feeling bad, because I really know I shouldn’t.

Sometimes, the most useful contribution you can make is to take care of yourself, and that’s okay. Sometimes, you have to just accept yourself for who you are, and who you are is okay. I just wish I knew how to put that into practice.

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Uncertainty, risk, and consequences

(CONTENT NOTE: This post discusses autistic meltdowns)

Uncertainty doesn’t mean that something bad is going to happen.”

This is one of the main points I took away, word for word, from my uni counselling service sessions last year. I find it very helpful to remember because, well, it’s true. Sudden changes with no advance warning can be pretty awful in terms of sensory overload, but on the other hand, sudden changes with advance warning can lead to days of slow-burn, pit-of-the-stomach anxiety which, most of the time, turns out to be completely unfounded. I find it helpful to remind myself and to be reminded that, realistically, there’s a big chance that nothing bad is going to happen to me at all.

Having said that, there is a huge difference between reassurance and denial. A dismissive “stop worrying, it’ll be fine” or a laughing “you’re worried about THAT?” from neurotypical people, however well-meaning, is incredibly frustrating. The main reason for this is that these people don’t understand what I mean by “things going wrong”. They don’t understand the consequences of things going on. I’m not just worried about inconvenience, discomfort, general less-than-perfection. First and foremost, I’m worried about meltdown.

Autistic meltdowns are experienced differently by different people and in different situations. For me, meltdowns mostly involve a lot of crying, the intense feeling that nothing is going to be okay ever again, and a horrible all-consuming headache that makes me feel sick, makes it difficult to speak coherently (in a situation that may attract the attention of well-meaning people pressuring me to speak coherently so they can understand what’s going on) and means I can’t process more sensory input (in a situation that’s usually provoked in the first place by some ongoing source of sensory overload I can’t get away from). It can take days to fully recover from. These days, I experience true meltdowns rarely, so I know the risk is low, but the very fact that it could happen is terrifying. In addition, if I get into this state away from home, there’s really no guarantee that I’ll be able to make it home or to a place of safety myself, so the prospect of that happening when I’m on my own is very scary indeed.

“Why on earth are you so on edge about it? It’ll be fine!” always makes me think “Well it’s alright for you, you don’t have to deal with the consequences if, by chance, it’s NOT fine”. But articulating that in the moment is difficult, especially after years of it being mocked and dismissed as over-reacting even by people who really mean well.

Of course, in reality, it’s almost always fine. Uncertainty doesn’t mean something bad is going to happen. Uncertainty only means risk. But that risk is very real, that the severe effects should that risk actually occur are very real too. By all means, offer reassurance that it will probably be fine, but understand that it might not be fine, and that risk is not to be erased.

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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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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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