Feminist Aspie

You Don’t Know What It’s Like

(Sidenote: This is in response to a conversation that’s taking place amongst people I know IRL, and if I can somehow figure out a way to communicate this message to the people that really need to hear it, I may remove this post from the blog for anonymity reasons)

You don’t know what it’s like to have to choose between spending time with friends, or in a community which purports to include you, and not putting yourself through huge levels of anxiety at best and a meltdown at worst.

You don’t know what it’s like to look forward to it anyway, because it’s all you’ve got, and sometimes it hasn’t been too bad; you don’t know what it’s like for “I probably won’t freak out too much, and if I do there might be a way around it” to be the very definition of “looking forward to it”.

You don’t know what it’s like to put on your favourite clothes and your favourite music and everyone else’s favourite neurotypical-passing brave face and persuade yourself that you will have fun tonight, only for it to go as badly as, deep down, you knew it would all along.

You don’t know what it’s like to feel out of sorts for days and to blame yourself for it because you knew you couldn’t handle it and you should have stayed at home. Again.

You don’t know what it’s like to have had a recent meltdown on a loud, crowded, chaotic, drunken night out, to remember how that felt, and to not want to just relax and try again next time.

You don’t know what it’s like to feel isolated and lonely even when you’re literally living amongst the biggest social circle you’ve ever had, and more than likely the biggest social circle you will ever have, in a city with seemingly infinite opportunities, because all they ever want to do is that one kind of socialising mentioned above.

You don’t know what it’s like to suddenly do a U-turn and start blaming yourself not only for going, but also for not going.

You don’t know what it’s like for people who care about you to think “Please don’t feel pressured, it’s okay if you don’t want to come” is enough; it doesn’t occur to them to find alternatives that don’t need to come with a warning. You don’t know what it’s like for them to think “You don’t have to drink” is enough; it doesn’t occur to them that if everyone else’s night is revolving around the idea of getting drunk, you’re maybe going to feel a little bit left out. You don’t know what it’s like for people to think not literally forcing you to do things you don’t want to means that they deserve an ally cookie.

You don’t know what it’s like to feel selfish for even thinking about this issue, for not just going with the majority and accepting you can’t always have your own way and compromising, even just in your own head, when all your life all you’ve ever done is fucking compromise.

You don’t know what it’s like to be feel like you’re judgmental and anti-fun, because you’ve heard people talk badly about others who stay quiet on the sidelines and don’t drink and don’t get involved much, and maybe they’re tolerating it from you because they know you’re autistic, but even so, that’s all that you are. Tolerated.

You don’t know what it’s like for people to assume you just don’t want social interaction, because you’re autistic.

You don’t know what it’s like for people to assume you’re just bad at social interaction, even though you’ve lost count of the number of times you’ve left an overloading event only to sit and talk for hours with your best friend back in halls, and the number of times you’ve arranged lunch or coffee or cinema or so many other things with individuals or smaller groups.

You don’t know what it’s like to have the problem framed as just a fact of autistic life, a sad tragedy that cannot be resolved, because nobody stops to wonder if they’re part of the problem, however small. You don’t know what it’s like to be told, in whatever way, “you can’t just change society” by countless people who, themselves, constitute “society” – to paraphrase a friend, we are disabled by you.

You don’t know what it’s like to be told how complicated you’re told it is to do one thing, yet how easy it apparently is to sort out pre-drinks, a bar, a club, have a few back-up clubs in mind in case you don’t get into the first one, and the nightbus route home, all with increasing alcohol levels as they progress through the night – impressive if you ask me, especially given the rate at which other suggestions are dismissed because nobody can be bothered to organise them.

You don’t know what it’s like to be told to just arrange it all yourself and to actually do so, only for it all to fall apart later that day in favour of Drinks In Someone’s Room, Part Infinity, when you know that’s going to involve more people in one small space than you can manage, and to have people reassure you that it’s all going to be totally okay because you can just bring Diet Coke. You don’t know what it’s like when the Diet Coke doesn’t miraculously level out your sensory input, or how frustrating it is when, inevitably, it ends badly.

You don’t know what it’s like to, after all that, resign yourself to taking the path of least resistance and play along with the “autistic person can’t control their emotions and doesn’t have empathy and threw a tantrum and now they’re really sorry” trope, and try in future try to be more calm and tactful when raising the issue, which of course usually means “don’t raise it at all”.

You don’t know what it’s like for people to refuse to hear this unless you have positive solutions, when this exclusionary system of socialising has become so unquestioned, so normal, that nobody can conceive of anything else.

You don’t know what it’s like to be the inconvenience.

You don’t know what it’s like to be the afterthought.

You don’t know what it’s like.

You don’t.

So don’t fucking tell me that I have to accept it.

21 Comments »

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

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

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

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

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

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

13 Comments »

I’m Not Sick: A rant about neurotypical privilege.

Blogger’s Note, written 28/6/2015: Wow. This post is getting a LOT of traffic. It seems to be fairly high up on Google searches for “neurotypical privilege”, and last night it was posted on various social media sites by the wonderful Autistic Self Advocacy Network and my stats have exploded and it’s scary and wonderful. Thank you so much! I wrote this almost two and a half years ago, when I’d only been blogging for a couple of months, so apologies if the wording isn’t perfect. I absolutely stand by everything I’ve written here, but that might not necessarily apply to all my other really old posts that may appear near this one; I’ve learned so much since I started this blog, and I’m so grateful to those of you who have helped me on that journey. If you’re new, which you probably are, you might be interested in checking out my more recent posts! In particular, because I’m conscious that people might come here looking for a full explanation of neurotypical privilege, I feel like I should point out that this post is based on my experiences as an autistic person specifically, and whilst autistic activists coined the terms of the neurodiversity movement, there is far far more to neurodiversity (and neurotypical privilege) than just autism. As you can probably tell, I lost track of replying to comments on this page a looooooong time ago, but I’m still reading and I really do appreciate your feedback. Finally, sorry about the big Buzz Lightyear thumbnails on social media – it was meant to only be a temporary avatar, honest… Okay, take it away, younger self!


I am autistic, and I’m sick of neurotypical privilege.

I’m sick of hearing that I and others like me can’t live a full life. We can, and we do. We just need a little help sometimes.

I’m sick of being told my experience isn’t real, that I’m just an attention-seeker or a special snowflake, or having those accusations directed at my parents.

I’m sick of the myth that vaccines cause autism. And even if that were true, I’m sick of people avoiding vaccinating their children because they’d rather they get ill or even die than be like me.

I’m sick of autism being compared to cancer and AIDS. The latter two are diseases which can and do kill. Autism is not.

I’m sick of hearing that autism is an “epidemic”. The reason that more people are diagnosed with autism now is that there is so much more awareness regarding autism. The numbers will probably continue to increase for a while, for that reason.

I’m sick of being told I have to pass for neurotypical to be liked and accepted by my peers. I have a great circle of friends who are really understanding and supportive. If  people judge me for not being neurotypical, that says more about them than it does about me.

I’m sick of hearing that stimming is a bad thing. If it’s not hurting anybody, I don’t see what the problem is. And if rocking and flapping and twitching is what’s going to stop me having a meltdown, that’s what I’ll do. I’m sick of being told in one breath that you have to learn to cope and in the next breath that you can’t do that to cope.

I’m sick of being told not to scream after I’ve screamed at a sudden loud bang. Emphasis on the word sudden. It’s not like I thought about it and made a conscious choice to scream.

I’m sick of the people around me saying “Stop that, it’s embarrassing” or “That must really annoy your friends” when it doesn’t. I’m especially sick of that under the guise of “We’re used to you, but other people…” when they seem to have more of a problem with it than other people.

I’m sick of all this driving me to a meltdown and then being told that that’s embarassing too.

I’m sick of “quiet hands”.

I’m sick of most of the “treatment” for autism being based on making people on the spectrum pass for neurotypical, rather than social skills or advocacy or something else that might actually solve some problems. I’m sick of living in a society in which the most important thing, above all else, is to comply.

I’m sick of conditioned compliance.

I’m sick of literally greeting people with apologies because of the constant fear that I’m screwing up, that I don’t know how to comply. Everyone who knows me is sick of it, too.

I’m sick of struggling to make minor decisions in public (like what to order for food) because there’s only one right answer, only one way to comply, and I’m sick of not believing people (at the time) when they tell me they really don’t mind what I choose. Again, everyone who knows me is sick of it. Everyone is sick of conditioned compliance, so it seems.

I’m sick of being spoken for.

I’m sick of all the media, the panels, all the publicity surrounding the autistic spectrum focusing on people who aren’t actually on the spectrum – the family, the friends, the “experts”, everyone but the person who knows what it’s like. I don’t want to attack all those people – they’re usually well-meaning and really want to help, and please keep fighting the good fight – but seriously, an all-male panel discussing sexism clearly isn’t a good idea, and I’m sick of people not seeing that an all-neurotypical panel discussing autism isn’t a good idea either. Especially when they don’t listen to people who are actually on the spectrum

I’m sick of not being listened to because I don’t have a child or another relative on the spectrum. am autistic. Is that not enough?

I’m sick of being treated like a child.

I’m sick of people telling me I’m “not really autistic” because I’m not like another autistic person they know. It’s called a spectrum for a reason. This counts double when they’re a child; if I’m a lot older than them, of course I’m going to be more able with some aspects of life, autism or no autism. Nowadays, I rarely have public meltdowns and I can follow the major social rules (e.g. personal space), but I’m sick of people assuming this also applies to my childhood. It doesn’t.

I’m especially sick of the above when the person telling me I’m “not autistic enough” isn’t on the spectrum themselves. How is it logical that I’m “not autistic enough” to know what I’m talking about, but you’re qualified when you’re not autistic at all?

I’m sick of functioning labels and the assumptions they carry with them.

I’m sick of the assumption that people who are verbal are “high-functioning” and people who are non-verbal are “low-functioning”.

I’m sick of people on the spectrum being told they’re either too “high-functioning” to know what they’re talking about, or too “low-functioning” to know what they’re talking about.

I’m sick of worrying that people won’t understand my needs because I’m apparently “high-functioning”. Similarly, I’m sick of the potential of other people on the spectrum being ignored because they’re apparently “low-functioning”.

I’m sick of being told that Asperger’s syndrome isn’t “really autism”. I’d imagine that people with PDD-NOS are sick of being told the same about that.

I’m sick of the constant thought that one day, there might be a pill or an injection that could wipe out people like me, that could turn me into the norm, that could make me comply, that wouldn’t care that most of my personality is eradicated along with it.

I’m sick of being told I’m selfish for not wanting such a cure, and that the people telling me I do need a cure are somehow not selfish.

Autism isn’t a sickness. Neurotypical privilege is.

115 Comments »

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