These Things Matter

Sometimes you don't have the spoons to do big things.

Sometimes you only have the ability to do the bare minimum to get through your day.

We all have days like it, just that some of us have far more days like it than others, because for some of us the world is less accessible and takes more energy to navigate.
On days like these it's very easy to feel like you're letting people down. I don't just mean the usual friends and family you have to call on for help last minute, the appointments you have to cancel, the phone calls you forget to make etc. I mean in terms of: what am I contributing to the world right now?

For activists this is something we struggle with a lot. How can I call myself an activist if most of the time I'm just sat at home doing art, watching netflix and hiding under my duvet feeling like shit?

What if all I'm currently capable of doing is just trying to look after myself the best I can?
I'm not really helping anyone, am I?

It feels shit thinking like that. Really shit. Thoughts like that go through my head almost daily.
But yesterday I had a slight moment of 'oh!' in regards to it and I wanted to share it on here.

I had gone down south for a friend's wedding and yesterday was the day I was travelling home.
As it happened a series of things, which didn't make me feel great, happened in close succession, two of those things being: I started my period and so had horrible cramps, and; my leg decided that it was a great idea to give me pain in my hip, my knee and my ankle at the same time.
I was tired, people-ed out, in pain and I just wanted to get on the train, sit down, get my headphones in and tune the world out.

Except it didn't go quite like that... because of course it didn't ¬_¬

The luggage area of my carriage was full. Not just full but overfull, to the point where the only place for my suitcase and bag was in the vestibule leaning almost against the door....where it was likely to fall out whenever someone tried to get on or off the train.
Nevertheless I couldn't see what else to do with it, so I left it there and went to get my seat. Only to find it occupied.
But I've done trains before, I have a script for this: 'Excuse me, I'm afraid that's my seat'
Unfortunately the lady in question does not go with the script, instead, the lady next to her turns round and explains that she's the elder lady's daughter and they hadn't been able to book seats together so they'd used my seat and was I ok taking her seat instead?

Now that in theory wasn't a problem. Except that a) I wasn't expecting that response b) I'm standing in a packed train carriage with people staring at me and that's already making me feel anxious and now I'm being asked to think up an unscripted response on the spot and c) the seat she's offered me is facing backwards on the aisle, and on a table whose other three seats are already occupied, AND someone's got their bag on the seat so I'd have to get them to move it.

All of this combined meant that I basically flapped my mouth silently for a moment and then turned and scuttled back to the vestibule in a small panic.

So now I'm stuck. I crouch down next to my suitcases and start trying to work out how to tell the conductor my situation. Because it's not exactly easy to explain to someone who probably doesn't experience it themselves, how daunting an unexpected change can be and how you don't always have the mental energy to handle a simple change like sitting in a different seat.
But the new problem was that I didn't really have the full energy required to script what I wanted to say to the conductor.
I typed it out on my phone (but it wouldn't all fit on the screen at the same time) and then remembered my little communication booklets.

I have two, a basic one from the NAS  which just says the bare bones: 'this person has autism'
(which at some point I may have to artistically alter to say 'is autistic') and one that I've made myself which says different phrases etc that I can select and show someone.
Having these on me always makes me feel better because I know that at the absolute worst I can throw them (possibly literally) at someone if I'm unable to coherently use verbal words. So I'm never going to be completely stuck as long as I have those booklets.

As it happened by the time the conductor reached me I was feeling a bit better and did manage to speak to him, although it came out slow and stumbly, but I also showed him my NAS card and explained I wasn't great about unexpected change and was expecting to be by the window, and was also really stressed about my luggage falling out of the train and that I didn't want to be seated too far from it, wherever it ended up being stored.
The conductor was lovely. He beetled off and found a seat in another carriage then came back and helped me lug all my stuff through so I could sit by the window, with my luggage in a carriage that didn't have nearly as many people in. He was a little concerned that the seat was still facing backwards and said he could probably have a look and find a forward-facing one, but I said I was fine and thanked him.

Now what does this have to do with activism exactly? Cos it's not an obvious example is it?
Well the fact that I was open about being autistic when explaining my needs, that's activism. I could have just said I had nowhere to sit, or did he know of anywhere to sit. But I didn't because I wanted to explain who I was and why I was feeling stuck.

For me it's important to be as open as I can be about who I am and what my identities are and what my strengths and struggles are. Because not everyone has that luxury of being open, but I do, so I take the opportunities to be open about it in situations where it's relevant. It matters that the guard knew he was talking to an adult autistic person travelling alone and that he knew I struggled with unexpected changes. It mattered that he responded in a respectful and helpful way. It mattered because the more these honest, straight forward interactions take place, the more people get used to hearing 'i'm autistic, could you please give me a hand with xyz' or 'I'm autistic, I'm an artist, hello!' etc etc, the more normalised it becomes. The more people get used to seeing and hearing interactions that involve people being honest and open, the more they have those interactions themselves, the more normalised it becomes and the less mysterious and alien we are to them.
Yeh they should be educating themselves because it's not always down to us to educate, but people often learn best when they experience things first hand, so those interactions: they matter big time.

It matters because I was able to tell him he was doing the right things being helpful, it matters because he helped me, it matters that I was able to ask for help and to do so using a visual prompt instead of just verbal speech. It matters that I then sat for the rest of the journey with my fidget cube and cuddly bunny.

It matters, because when society tells you that you have to be a certain way and that way isn't who you are or what you need, then being yourself, openly, honestly and completely un-apologetically is two fingers up to those who think you shouldn't be seen or heard.

If I'd been able to see or hear about more autistic people being openly and honestly themselves, when I was younger, well I would have felt a lot better about being me.

It matters because the more we are openly ourselves, when we can be, the more people will stop getting all freaked out about the 26 year old with the fluffy bunny toy and the bobble hat on, and the more they will find nothing odd about that at all. And that will make things easier for the next generation of little autistic folks to come along.

It's not much and it's not massively radical or huge or loud and it's really not that impressive. But when you haven't got the spoons to do anything else, sometimes just being un-apologetic about being your own autistic self is the best activism you can do. And that matters.

Not about the person opposite

The internet is great. But just as with real life, there are people out there who you're not going to agree with or like and some people who you're definitely going to hate. Arguments and debates happen. Nasty things get said and bigots can and will come out of the wood-work to try and cut you down and make you feel awful.

But something I've realised is that the thing about online debates is this: a lot of the time the people you're 'debating' with are never going to change their minds. And often this gets cited as a reason not to bother arguing with them. 'Don't waste your time' people say. And they're right, you probably won't change their minds because bigotry isn't based on logic, it's based on emotions and you can't logic emotions into making sense, because a lot of the time they just don't. If you haven't got the energy to deal with all the crap that comes from that sort of arena then there's no shame at all in admitting that and walking away. But if you DO have the energy then it's worth remembering this: sometimes the point of having the argument or debate isn't to convince the person opposite you to change their opinions, it's to give the silent spectators something to think about.
Because the fact is that while a certain number of people will get involved in a debate, a substantially higher number will probably be observing silently at a distance. It's those people, the people who aren't yet strongly convinced to one way or another that you are really talking to.

If you come up against an 'Autism Warrior Parent' (aka a parent who is not autistic but co-opts their child's identity while simultaneously trying to make their child less autistic and more 'normal' and often complains loudly about how much of a burden their child is on social media) who is talking about the wonders of MMS (aka how making their kids drink bleach stops them being autistic, seriously, google it, it's real and it's horrific) then remember that you might not be able to make them stop being an abusive ableist bigot but there will be other parents listening in who aren't yet sure and hearing from an autistic person might point them in a different direction. Likewise an autistic person listening in gets to feel a little bit safer in the space from hearing another autistic person calling bullshit.
You don't always know when you've had an impact and arguing with bigots is draining and horrible and feels like banging your head repeatedly against a concrete wall, but it's not about them, it's about the others who haven't made up their minds yet.

It's not about the person opposite, it's about everyone else.

Catastrophising

[Content Warning: contains mention of suicidal thoughts and ableism] 

The term for when your brain instantly and continuously obsesses over worse case scenarios (which may or may not even happen) is 'catastrophising'.

Being autistic and having heavily logic-laden thinking means that we're often able to follow a train of logical possibilities in our heads that can mean we see patterns others don't see. For me this often means seeing endless and terrifying parallels with the past and the possibility of a worse and apocalyptic future. 

It's hard not to see the similarities between the rise of modern American Fascism in the form of Trump and his right wing nationalist supporters, and the rise of Hitler and HIS right wing nationalist supporters. Both involved gobby people telling the masses that they had an easy scapegoat (or scapegoats plural). Main difference being that Hitler was a better public speaker and had marginally better hair (plus his hands weren't as small as Trump's). 
But both play off people's fears and the fact that it's often easier to kick downwards than make the massive long-term effort to build a stronger community that supports ALL it's members. People like the quick-fix option of blaming someone else directly for their problems rather than looking at the more complicated series of events that made the present how it is. The idea that if we just get rid of certain people then everything else will fall into place: for a lot of people that's appealing. VERY appealing. Thing is it never ends. Start witch-hunting the outsider groups and eventually you'll start to self destruct. 'First they came for...' and all that.
I remember being read that poem in school and it's been in my head ever since. 
And now that I am officially a member of a minority group (yay for finally getting an official autism diagnosis :) ) under direct attack from people like Trump, and by the Tory UK government, I know that my fears were fully justified. 
Because that's the thing about catastrophising: it's not completely irrational, it's based very strongly in reality but it focuses solely on the NEGATIVE outcomes, and ignores the existence of the possibility of POSITIVE outcomes at each leap forward it takes. It's like a really rubbish flowchart that only has one option available at every junction! 

Looking on as the far-right rears it's ugly head again is genuinely terrifying. We've got a very clear map as to what can easily happen once it sinks it's teeth into a country and to put it as bluntly as I can: I don't want to die. I don't want to see people like me starved in their own homes or rounded up and marched away, or being denied their rights, being attacked in the streets, being 'put out of their misery' etc etc etc. But the thing is that some of this stuff is already happening and it's happening under the orders of the UK government. People ARE being denied their rights, people ARE starving to death in their own homes and there IS already the strong foundations of a growing propaganda campaign that encourages the public to view us as a burden that, were we dispensed with, would make everyone else's lives better. 

[Above example taken from a BBC article on Autistic people dying earlier than the general population. Not that the first fact about us is how much we cost the tax payer, AND the second one is ALSO about cost. This is not something that is designed to simply clue people up on autism because if that had been the case the 'facts' would have been better written out and researched rather than the first two points focusing on how our existence affects the public, so it's not neutral. It's also not something that's trying to encourage people to fight for our rights and view us as equal human beings, so it's certainly not positive. Instead it encourages people to think of what we cost THEM. The article also cannot be viewed in a void. This exists in a context of multiple articles like it, multiple comments from politicians that portray us as burdens and a focus from the DWP on 'clamping down on benefit fraud' which actually is relatively uncommon. So this list of 'facts' is scary because it's part of a bigger pattern of dialogue that encourages the public to view us as subhuman burdens whose lives are miserable and who cost them a lot of money.]

There is hope however that we might be able to stop this stuff from getting any worse. There's always hope, right up until the last possible second, (and possibly even beyond.) Germany has come a long way from Nazi times and the UK is not completely right-wing and neither is America. 

But the fear that the worst COULD happen becomes so strong in my mind that it's crippling. I can literally see it unfolding in front of me with absolute certainty that it's going to happen. All other options get sidelined by my terror-filled brain and it's so overwhelming that I feel crushed. Thoughts like 'what's the point if we're going to be killed anyway' fill my mind and I can't do anything. Everything that I love and that I hope for and want to work towards seems like a hollow vision. There's no point trying, there's no point continuing because there's no hope, no future.
And the suicidal thoughts begin. Not that I immediately want to die, but that I know that when the worst does happen (as my brain tells me it surely will) I want to be able to leave this world quickly and not suffer the drawn out demise that will happen otherwise. I fear gas chambers, I fear a world war, I fear troops on the ground, planes in the air and nuclear explosions poisoning the land and sea. 

I also feel angry. Angry that I and others like me are so incredibly powerless in the face of such things. That we who will be among the first victims whenever people need a scapegoat, have the least say in how the world works. That the most vulnerable are the most hated and the least protected. I feel angry that I am scared of doing more. I feel that it might directly be my fault that the world is on the path it is, because I haven't done enough to stop the bigotry around me (while simultaneously feeling like there's no point doing more because it's a waste of time and energy cos everything's going to go to shit anyway). I feel angry that the life I thought I would have when I was little has been gradually stripped away by people who hate me without having met me, without me having done anything other than simply EXIST. 

Eventually the periods of utter hopelessness do pass and I can start moving again, start enjoying things again. And when I do regain the ability to see the myriad futures we're facing I remind myself: 'there is always hope until the last possible second so don't give up yet!' and 'if the worst IS going to happen then fuck them I'm still going to try and be the person I want to be, living the life I want and making the world better bit by bit, because what more of a resistance can I put up than the utter and complete refusal to give up my humanity and my identity. You want me dead? I will not die. You want me to suffer, I will find joy. You want us to hate each other, I will keep reaching out to other people. You want me to believe and internalise your ableist bigotry? I will love myself and take pride in my autistic queer identity and  I will teach others to do the same for themselves. 

And when the catastrophising thoughts fill my head and try and crush me I'll remember my anger and feelings of helplessness and then I'll go and do something I enjoy, because: fuck you! As long as I've got it I'll find things in my life worth living for. And no matter what you'd have me believe. There's always, ALWAYS hope. 

New Year

2016 has been a difficult year for Autistic people and a lot of us are eyeing 2017 with misgivings.

There's so much that seems to be going wrong in the world right now and its difficult not to feel worried about what the rise of fascism will bring us in 2017. With Trump and his cronies in the driving seat of a powerful nation it's hard not to feel scared.

As someone who catastrophises by default it's hard not to forsee a terrifying near-apocalypse for human-rights. But it doesn't help to focus solely on that.

This year has seen the facebook-based Autism groups I'm a member of increase their membership massively and this is a good thing. More and more we're forming a sense of ourselves as Autistic people with a culture and community of our own. We come from all over the world and have vastly different upbringings and life experiences, but we're debating and discussing and supporting each other in a way that is truly awe-inspiring. This is how we stay strong. This is how we will survive. Together.
So while I know 2017 is without a doubt going to be tough, possibly tougher than 2016 (though I hate to even think it), we have good foundations to keep building on and that's something positive we can focus on to keep us on track in amongst the chaos.

This year I'm going to keep reminding myself of the good things, not because I'm ignoring the bad but because my entire outlook on life right now is filled with a massive panorama of the apocalypse, and for the sake of my mental health I need to bring myself back to the moment and remember the good stuff is still happening as well.

Best of luck to everyone in 2017. Stay strong and look after yourselves and each other.

Not All Misery

It's important to remember that life as an autistic person is not all doom and gloom. 

Thing is it's often easier to write about the negative things than the positive, because we spend so much more time and energy dealing with the negative, because it's something to be fought, not embraced.

But the positives are always there and while it can be difficult to talk about them because they often feel so normal to us that we don't even realise other people don't experience them....I think that's exactly why we should make the effort to talk about them.

I'm best qualified to talk about my own personal positives so that's what I'll focus on but there are plenty of other people out there who can give you an idea of positives that overlap with or are different to mine, so make sure to go look their accounts up too!

What do I enjoy and love about my autism?

I love the fact that I am able to observe things really well and see little details that other people don't. There's a heck of a lot I get to know about the world around me that other people never see. Whether it's finding a heck of a lot of spare change on the floor (because it always catches my eye) or getting lost in the beautiful reflections in a puddle of a tree's leaves silhouetted against a sunset, I get to experience so much that other people never see, and I feel sorry for the people who never see it.
I remember a friend telling me what it felt like taking MDMA: she said it made her see lights and reflections etc as really overwhelmingly beautiful, she said she felt like she could just get lost in them, like it was like being a child again. I remember feeling incredibly sad for her that she needed to take something to get that experience, because that's how I always experience the world around me and I didn't fully realise that other people generally didn't. 

I like that I get pleasure out of little things: I like watching sand timers and liquid timers and always have done, they just don't get boring, how many people get to enjoy something over and over without it getting boring? So many people have to be constantly seeking the next more interesting thing, I find something simple and satisfying to look at and it's very likely to always be enjoyable and satisfying to look at. -another example is that I LOVE polishing brass objects, I can do that for hours and hours, it's just so incredibly satisfying to see that shine coming up from the dullness that was there before. And then when the shine appears you get so many cool reflections and a lovely warm glow and it's just lovely to look at :3

I like the fact that I 'see' my thoughts in my head. I find it fascinating and enjoyable, and sure, translating those images into words is very difficult at times, but experiencing thoughts in that way is really very beautiful and I can't imagine how a mind-world must be without them appearing in that way. 

I like that I have a ready-made community of other autistic and neuro-diverse people out there who often (not always, but more often than not) 'get' me in ways that even close family and friends don't always 'get' me. It feels like being part of a great big clan and meeting someone else with my brain-type feels like meeting a long-lost relative. It's a feeling of connection that means a lot. Even if I don't get on with every autistic person I meet, it's still lovely to have a sense of understanding each other in a way that I don't get with other people, and that I think NT people don't often have with each other.

I like that I am able to see the stupidity in things that other people take for granted and never challenge. It feels like being the one person in the crowd who first pointed at the emperor and laughed that he was naked (I bet you anything if that story was real, that kid was definitely on the spectrum).

I like that I am creative and I feel that having had to practice more ways and styles of communication has really helped my creativity. I know not all autistic people are artistic or consider themselves creative or imaginative, but I am and I know quite a lot of others who are as well, and I strongly believe that having to be more creative in communicating with others has helped me develop my art.

I like that being odd means that I naturally seem to attract other odd people. I fantastic friends and none of them are people who properly 'fit in' with society. But I honestly find them so much more interesting for that and wouldn't have them any other way. These are people who are determined, caring, creative, sensitive, eccentric, obsessive and all round marvellous.

I like the fact that I am in a position where I don't need to have children to see myself exist in the next generation. When I meet younger autistic people I genuinely see myself in them in a way that I imagine parents see themselves in their children. It's like seeing myself in a younger form, like watching my life (slightly altered and updated) happening over again. Only this time I get to help myself by being a mentor, a friend, giving advice, sharing experiences and coping strategies, discussing ideas and hope. It is a unique privilege to be someone who is literally in the process of trying to make life easier and better for those who come after me. I don't plan to have kids myself so this feeling, this feeling of shared identity is amazing and I am so grateful that I get to be a part of laying better foundations for those younger than myself.

What else do I like about my autism?
I like the fact that I feel a close connection to animals: a lot of autistic people seem to feel this connection as well, so on this at least it's not just me.
Interacting with animals feels almost spiritual to me because it's the one time where I can interact with another life-form in a way that feels natural and comfortable to me. It doesn't take effort or concentration, it's just as easy as breathing.  Animals aren't judgemental, they are supremely honest and straight-forward. Communicating with them feels almost like having a super-power. Humans often don't understand non-verbal communication as a MAIN form of communication, but animals do and it's so much easier to just communicate directly with them without words. I can have what feels like whole conversations with animals and they just 'get' it. It's brilliant. 

I like the fact I don't feel a desire to 'be an adult' I feel that I'm just me and I like what I like and respectable adult appearance just doesn't interest me. How much fun do 'normal' adults miss out on as they tell themselves that things are childish or silly? Whereas I tell myself no such thing and just get on with enjoying snail-shaped colour-changing night-lights and space-themed duvet covers. 

I like the fact that my sense of time seems to be different to other people's. I feel like my past is right up close behind me, looking over my shoulder, not spread out for decades behind me like a ribbon. My past is like the foundations of a house I'm still building, it's not somewhere I used to live and don't any longer. I still live here, it just doesn't look like it used to and it's going to keep changing and growing until one day it's complete. 

I like the fact I have a very detailed memory for certain things.I absolutely loved being able to recite the entire script for Star Wars Episode One The Phantom Menace (say what you want about that film, I enjoyed it and loved being able to fall asleep at night reciting the whole thing over to myself in my head, it was ace). Over a decade later and I can still recite quite a lot of it with just a little bit of prompting :3 #autismachievements #geekmodeactivate 

I like the fact that I seem to end up with friends in a variety of age groups and that I feel just as comfortable talking to someone a lot younger than me as I do to someone a lot older. A lot of people seem to end up with friends the same age as them and while there's nothing wrong with that, I really enjoy the fact that my friends are able to give me stories from different times and generations and different social experiences. I find it fascinating and infinitely interesting to have such variety in my life.

I like being able to list a load of positives about me and to not be sure which are 100% down to my autistic brain and which are down to anything else, because I wouldn't be myself without Autism, and I like myself, so I can't NOT like my autism too because it makes me who I am. And I like that. 
It feels like being a whole person and writing positives about autism is just listing positives about myself. And it's a good feeling to be able to write a list of positives about yourself, as that is DEFINITELY something a lot of people really struggle with. 

Thought Cascades

I get anxious.
No. More than that.
I get agitated.

I get waves of overwhelming fear and anxiety and I feel like I have so much of a desire to run as fast as I can away from something that I can barely hold myself still.

And it can be set off by a tiny thing.

It's been a long time of trying to get the words right to explain, even to those that know me, what goes on when I have 'a mood swing'.
Because for a long time it seemed so random and I didn't have the words to explain. And even now it seems like I over-react to tiny things that should be insignificant.
But the problem is that the way I think doesn't see things in isolation. Everything that I experience is experienced in a bigger context, whether it's obvious to other people or not. So; my computer not starting up fast enough feels like it's trying to spite me because I've had people deliberately refuse to do what I NEED them to do because they don't believe it's a NEED, it reminds me of people deliberately ignoring me or actively making my life harder because I'm not 'normal' in their eyes and they wanted to bully me into fitting in. It reminds me of the feelings I have that I'm in the way, that I'm not wanted, that I'm a burden, that people want me to go away, that I'm not liked, that people hate me.....
But all you might see is that my computer isn't starting up fast enough and I get 'disproportionately' angry with it.

But one little trigger can set off a whole cascade of memories and emotions that I can't always predict.

Everything in my mind is connected to something else.

That's one of the curses of having a good memory. It feels like the past is right up close behind you and something that happened ten years ago hurts like it happened yesterday. So when something reminds you of something negative that happened, that hurt, that upset, that trauma is still there, still feels fresh and I experience that and anything else that gets triggered by the tumble of memories, all in response to an event that is sometimes tiny. It's like a tiny spark whizzing down a stream of gunpowder and setting off numerous louder cracks and bangs: the spark itself was tiny, but what it sets off is not. Only problem is that I react to the cracks and bangs which no one else sees or hears, so they think I'm reacting to the spark.

It's no good saying to autistic people that our reactions to things that upset us are somehow 'out of proportion' it's no good telling us we need to stop having mood swings. If your brain worked the way ours often do, if you experienced the world in the way that we do, I think you'd react the same. It's fully proportionate to react in the way that we do to what we do.

We can learn to manage the thoughts better, to remind ourselves that they are in the past, that what we are dealing with in that moment is the little spark, and the cracks and bangs are in the past and not in the present. But we still experience them even if we can learn to keep some distance from them.

It's incredibly important to remember that with brains that make as many links to different things as ours often do, our experience of the world is not always based solely in the present. The past is close behind us and sometimes reaches over our shoulders, so in a way we're often living that too.
Don't judge us too harshly for what you think is odd until you've walked a lifetime in our shoes.
But then if you had you'd be one of us and we wouldn't need to have this conversation, would we?

'Cheer up'

‘Cheer up’

 I am not in possession of a face that is naturally expressive in every-day situations. I can actively concentrate to make my face display an emotion and if I’m feeling an extreme emotion then my face will show that. But if my emotions fall into the category of ‘not extreme’ and I’m not actively concentrating on making my face look expressive then quite often my face looks very blank. This is a fairly common thing for autistic people and it doesn’t really cause that much of an issue most of the time. Where an issue does arise however is when other people project their expectations onto me as to what an expressionless face is expressing. I’ve had people think I’m displaying sadness or anger, even at times when internally I’ve felt either total contentment or mild happiness. And that in itself isn’t a bad thing, mis-reading people’s body language is something that a lot of us do and being autistic I’m used to having to ask for clarification because I often can’t be sure what someone else is expressing. So there’s no issue with someone double checking with me that I’m ok etc. Where the problems start is when people take it a step further and instead of checking what it is I’m feeling or checking I’m ok, I get met with hostility and commands.

 This is not a phenomena unique to autistic people and nor is it unique to female-appearing people, but it IS more commonly experienced by us than by male-appearing people and as autistic peeps seem to have a higher-than average blank-face occurrence….you can be pretty sure we get these comments more than average too.

I have had complete strangers in the street angrily tell me to ‘cheer up’ and to ‘smile’. I’ve had a street salesperson mock my expression by saying ‘alright smiler!’ to me in a loud carrying voice, I’ve even had it when I’ve been at work! One thing that links all my experiences of it is that every single comment that I can remember, and believe me I remember a lot of them, have come from men. I cannot remember a woman, genderqueer or female-presenting person ever telling me what my face should be expressing. Ever.

Considering that I am autistic, human interaction, especially when uninvited and unexpected, can be quite draining and stressful, so to have a total stranger suddenly decide they have the right to comment on my expression of emotion (or lack of) and tell me I should remedy it….that’s really upsetting. It also only seems to happen when I’m on my own, which makes it more distressing because I’m fairly little and most people, especially male people are a lot bigger than me, so to have to deal with all those combined factors is very daunting and intimidating. Especially because a lot of the time when I’m out of the house I’m concentrating on doing something specific and depending on my levels of energy, I might be having to concentrate really hard on remembering what I’m doing, or reminding myself that I don’t need to panic, that I can do this, I’m just going to buy some bread etc

Thing is, this ‘smile’ or ‘cheer up love’ phenomena constantly gets dismissed by those who have not experienced it. You get people saying ‘oh well they were just trying to cheer you up’ or whatever, but that’s not actually what the people who say it are trying to do. There’s no concern there, there’s no query as to if you are ok. It takes the shape of a command, which by its very nature is both critical of you and dismissive of the very real fact that maybe today is not a good day for you and you have every right in the world to be expressing whatever emotions you want (or not express any). It is a phenomena that is directly connected to the fact that women and female-presenting people are constantly told we are decorative, we are there to look pleasing, and a lot of us know from personal experience that when we do not appearing friendly and welcoming, we get met by a horrible amount of negativity for it. It’s like we’re not allowed to be full humans. But sometimes we do have a bad day, sometimes our faces don’t look expressive, it’s no one else’s business what emotions we may or may not be showing and it’s a disgusting dismissal of our right to exist that total strangers believe that have a right to tell us what we should be doing when it does not affect them one bit.

And I do know the difference between concern and commands. Because I’ve had both, and I’ve had both from men and the difference is very, very obvious, because one involves a conversation that asks me a question and one involves a command or mocking comment that is often made in passing and does not expect me to reply.

The example of concern that I like to use is of one night when I was walking back from town and a guy sitting on the pavement by the bridge saw me and called to me ‘excuse me, are you ok? You look a bit sad, are you alright?’ And then had an actual conversation with me. He wanted to know if I was ok because he read my face as looking sad so asked me about it. He wasn’t offended that I wasn’t smiling, he didn’t tell me to look happy, he considered the fact that I was a fellow human being who might be feeling upset and wanted to check if that was the case. THAT is what concern looks like. It involves RESPECT.

This is quite clearly a very different approach to the comments of ‘doesn’t hurt to smile you know’ or ‘smile!’ or ‘cheer up love!’ which are not questions and do not involve respect. They are not treating me as an equal to have a conversation with, they ask for no input from me. They are full of assumption and command, which is not an indicator of concern for my wellbeing at all.

Why I’m writing this post now however is because yesterday I was on the receiving end of this phenomena yet again, but this one really broke the record for levels of upsetting.

This one was from a member of staff at a bank where I had gone to make a transaction.

First off this member of staff attempted to make small talk with me, as quite often people do when serving a customer. I did what I usually do when this happens and I’m not in a headspace to make conversation and replied by nodding and one word answers. Normally this is enough to express quite clearly that I’m not ok to talk just now, I just want to make a transaction and go on my way. And normally what happens is that the staff respect this, because not everyone makes small talk and when you work with the public, you pick that fact up fairly quickly, so it’s really no big deal. This guy however decided it WAS a big deal. He kept firing mockery and questions at me in an increasingly rude way. He mocked the fact I’d brought my money in a small cardboard box (because it wouldn’t fit in my purse) and then kept asking questions about m day even though it was obviously something I did not wish to talk about. ‘what have you been up to this morning?’ ‘What are you doing this afternoon?’ ‘have you had a good day so far?’ to which I replied ‘no’. Without missing a beat and in a tone of complete lack of concern he says ‘why?’

I felt literally amazed that he thought it appropriate to ask such an invasive question when it was clear that a) I didn’t want to talk and b) when someone answers that they’ve not had a good day and don’t automatically offer further details, they probably don’t want to talk about it, especially not to a stranger in a public setting! He didn’t know me, he quite clearly didn’t care, he had already mocked me and his tone had got increasingly upsetting. I did not reply at all to this question and there was a pause while he counted some more money. He then said, (and bear in mind this is a member of STAFF at a BANK with me as a CUSTOMER) ‘you could cheer up you know, it’s really not that bad.’

At which point I snapped and leant on the counter and told him exactly what I’d been doing that morning ‘I have just been to an abuse counselling session, it is none of your business what I am doing today and you should NEVER tell a woman to ‘cheer up it’s not that bad’ because it quite often IS.’

He instantly looked horrified and said ‘my apologies, my apologies’ over and over. But I was nearly crying and felt utterly humiliated. For once my blank face had been genuinely trying to cover feelings of upset and anxiety, and I got met with that comment. The assumption that I had nothing in my life which I might be feeling upset or anxious about, the sheer nerve of someone to assume they knew my life better than me and had the right to tell me how to feel about it….that was just…. It amazed me. I felt utterly humiliated at being pushed into a metaphorical corner by him so that I said what I did. I did not wish to reveal that information to him nor to the large queue of people behind me, nor to his colleagues beside him. But I am somewhat glad that I did because maybe now he will think twice before assuming he has the right to tell anyone how to feel or assuming there’s nothing in someone’s life that might cause them to feel down.

It’s not that I’m surprised by his comment or his mockery, or insistence that I speak to him even when I clearly did not wish to. Because I’ve had that all loads of times before. It’s never acceptable, it’s always upsetting, but it’s never that surprising. It was more the shock factor that he, as a member of staff serving a customer, thought it was appropriate for him to speak like that to me. I finished my transaction and left immediately. I went into a nearby shop and went to hide in the bra section, a place where it is usually nice and quiet and I have never had anyone make horrible comments to me. I very nearly had a full on panic attack and had to text one of my friends to see if I could go and hide at hers for a while. It was horrible and I felt shakey for the rest of the day. I still don’t feel right now.

I’ve put in a formal complaint with the bank and they have said they will write an email to the branch in question, which is great because that guy needs some serious education, but also leaves me feeling rather sad inside. Because while the context of him saying stuff like that as a member of staff was new and the comments were made in a perfect example of bad-timing (straight after a counselling session) the comments themselves are standard, and that’s the really upsetting bit.

I’m autistic and I’m female-appearing. And I feel anxious about human interaction, especially with strangers, and especially with male strangers, and yet these comments happen sometimes on a weekly basis. It’s a double layer of sucky-ness. The sexism AND the fact that I’m being emotionally drained by unwanted interaction.

I just wish people would think before they said this sort of stuff because genuinely: you often have NO idea what may or may not be happening in someone else’s life so to make any assumptions is a disgusting thing to do, and to tell someone to do something, not for their benefit but because…..I don’t even know, does it offend these people when we aren’t smiling all the time? I have no idea….but whatever the reason, it’s not cool. Someone else’s expression or lack of expression is none of your business, we’re just going about our lives, just leave us to it, ok?