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?

Autistic and Anxious

I am scared.

There’s a list of female autism traits that says that ‘Anxiety and fear are predominant emotions’. And is it really any wonder?

I’m not anxious because I’m autistic, my autism doesn’t make me have reason-less anxiety. My autism means that I am a target for bigots and bullies, manipulators and abusers. It means I’m portrayed as a mindless, worthless burden whose life is not worth living, by people who have NEVER EVEN MET ME.

It means my voice is silenced and dismissed again and again and again. It means I have to wake up every day to news stories about the abuse and murder of people like me, people who I could have so easily been but for a twist of fate. Because I was born here to this family and not there to that one.

It means I have to listen to the media, to politicians telling those who aren’t like me that I am a drain on resources, that I am a burden on society and who wouldn’t want to murder such a child, after all in a way it would be a mercy killing, because what person in their right mind would want to be like me?

It means I have to see services scrapped, services that help me, that are literally life or death to people like me, services that should exist to help us live full lives in the community around us, to live and work and laugh and engage along with everyone else…all scrapped so we’re trapped alone and penniless in our homes (or on the street) to starve and die out of sight and out of mind.

It means that at the age of 24 when I finally make the decision to apply for financial help (so I can slowly work up to more hours from a part time job to one that supports me to be fully independent) that I bottle out because filling in those forms means that on some system somewhere I’m labelled as disabled. And I’m scared that at some point that will be a dangerous list tobe on.

It means that I doubt the wisdom in pursuing the diagnosis that meant that I could say to friends, family and employers: my struggles are REAL, I can’t just ‘get on with it’ because that’s not how my brain functions. And now I wonder if my life span might be limited by my decision to ask for medical ‘proof’ that I wasn’t making it all up.

It means I worry that at some point it will swing from being words broadcast on HateTV, in the DailyHate and the HatePartyConference, from dirty looks, from abandonment and neglect into active attacks. Except that’salready happening…

It means I’m scared that at some point the hate crimes will stop being labelled as hate crimes and become government sanctioned, because apparently the problem isn’t those at the top hoarding all the wealth and leaving everyone else to fight for the scraps, it’s us, at the bottom, we’re the real drain, we’re the burden. If only we weren’t taking up space there’d be room for everyone, everyone would be better off. And after all it would be mercy killing wouldn’t it, because who in their right minds would want to live a life like mine.

Thing is, it’s not my autism that makes me anxious. It’s everything else that does that.