Feminist Aspie

You Don’t Know What It’s Like

on January 25, 2015

(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.

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21 responses to “You Don’t Know What It’s Like

  1. Alex says:

    I identify with this post far more than your other ones, and far more than I thought I would.

  2. Alex says:

    What I find weird, though, is I have managed to genuinely enjoy being drunk before, but I feel as though it was a one-off occurrence, like, “sorry, you’re only allowed one attempt at uncontrollable giggling while drunk, now being drunk to you is just going to make you like a very tired sober person”.

    • Thank you! Sorry for being really massively behind on comments – I tend to vaguely follow the notifications bar but am currently in the midst of exams + some other weird lack-of-motivation stuff so I’ve been neglecting the blog a little bit – I’ll try and blast through them all as a revision break at some point tonight/tomorrow. Back to your point, I’ve never actually been drunk, and have always kinda wanted to know what I’d be like drunk, but I don’t like the taste of it and don’t like the idea of losing control very much, so we’ll probably never know 😛

  3. Alex says:

    Also, I feel people don’t want to attempt to do things other than get drunk because they assume it means, “Let’s do that boring Explicitly Sober thing that groups like Alcoholics Anonymous do” rather than, “Let’s do something fun or interesting that we’d enjoy just as much without alcohol, provided it was done at midday, as a one-off occurrence around summer/christmas/easter/any other holiday/someone’s birthday”

  4. Alex says:

    This will probably sound terribly prejudiced against alcoholics, and I don’t actually know what Alcoholics Anonymous do, but I needed to get across the kind of stereotype of some sort of boring sober activity that only a small number of people who carry particular values are interested in.

  5. Bigger On The Inside says:

    I know what all of that is like. I bet a lot of other folks reading this will too.
    It probably doesn’t make your situation any better in a practical sense, but sometimes it’s good to know that other people think and feel the same way you do.

    • Thank you! Yeah, absolutely – I did think about halfway through “um, hang on, if this is going to end up on the blog then it’ll probably be read by a majority of neurodiverse people” (and I agree, it’s always such a great feeling to find out you’re not alone!) – this is sort of a response to a debate that’s playing out online amongst some uni friends back home (tl;dr an autie friend is brave enough to write about this stuff more publicly, and you can imagine how that’s gone down with some people) so I’m in this really weird position of aiming this post at a few circles of neurotypical people who will more than likely never see it! xD

  6. merelyquirky says:

    When you tell your IRL people what you need to tell them, please, please don’t un-post this.

    What you have written here is an eloquently stated universal truth for us. It is so true that it makes me happy and sad at the same time. It makes me want to re-read it every day as a reminder that it’s not just me. Ironically, even thank you for getting up enough steam to carry you through writing it all down.

    • Thank you so much! Don’t worry, deletion is really unlikely now (especially as this seems to have had a really good response – thanks so much everyone!), but as mentioned elsewhere on the page I was kinda frustrated at not people able to post this somewhere where the people I want to see it can see it (fun fact: before I started writing I was genuinely considering the “long Facebook status” route, but there was no way I’d have done that without ending up with something really toothless, so the blog was the only option really) and that little disclaimer was basically for in the event of me having some other bright idea, and as yet I haven’t! 😛

  7. […] You Don’t Know What It’s Like. […]

  8. Issha says:

    I actually know so much what this is like, that I got the shivers and I got tears in my eyes… Thanks for writing this. It’s like you went inside my head, grabbed all my feelings and wrote them down in words. I even saved the text to show my coach and psychologist. Thank you so much for this amazing piece.

  9. ChrisB says:

    It is very true that as a neurotypical person I can’t feel what it is like as you do. I can however feel disappointment that your friends don’t choose the activities that you would enjoy over those that give you angst 😦
    I would definately say – it’s not you it’s them! To me the definition of being a friend is to consider other’s feelings, likes and needs, and to arrange activities accordingly.
    PS – I would run a mile from a crowded, chaotic, drunken night out!

  10. My very first thought after reading the 2nd paragraph of this was “oh please don’t delete this”. Then it was followed by “how many people can I share this with?” followed by “yes yes yes yes yes yes yes”. It’s really very frustrating, and I’ve been in this situation over and over and over again. I’ve been dragged out by colleagues, only to have a meltdown in the backseat of a car, and mocked for it repeatedly, years later. I’ve been told by my friends “for my birthday, we’re going to a bar, but I didn’t think you’d like that, so I didn’t invite you.” – I do know what it is like, and I thank you so much for writing this post. I’m so sorry that you’re having to deal with this.

    I’ve gotten lucky. In recent years, I’ve built a social circle that, more often than not, includes me. Sure, they sometimes go out, and they don’t take me along. But they also plan events that are “E-Friendly”. They make an effort to have “E-safe foods” and check with me to see if I want to participate, and how can it be better. It really is wonderful, and I feel blessed to have them for my friends. But it wasn’t always this way, and when grad school ends, it won’t be again. I hope that this post is around for a very long long time.

  11. […] Aspie on the frustrations of trying to socialize in NT […]

  12. […] You Don’t Know What It’s Like – In which I get very frustrated at a weird mixture of ableism, inaccessibility, and a social culture that often seems to revolve entirely around alcohol […]

  13. […] 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 […]

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