Updated: Aug 26, 2021
Preface: I wrote this a long time ago, before I got diagnosed with numerous other things, which physically stop me from doing some things some of the time.
On the whole, and put outrageously simply, it makes almost all aspects of life harder – sometimes impossible, but it’s there all the time, and whilst on occasion I may seem perfectly normal, the whole thing is being carefully thought out and planned in my head; it’s an act – one which I’ve spent a while examining other people in order to put together.
At the core is a very distinct difficulty (and at times inability) to be social. This difficulty makes it so much harder to do so many necessary things. It was necessary for me to go to school, but with that came an expectation to make friends, and even though I rarely managed to, and even when that had been accepted, there was always a need, at some point – usually on a regular basis – to work in a group. It was always something I dreaded, especially when for whatever reason, my final grade would be impacted by my ability to work in that group. I work best alone, where I can get things done in the most efficient, logical way, and to the highest standard. I know that other people won’t execute things to the standard I would. I know that. Even if it’s not true sometimes, I feel like it is, and it’s a chance I don’t want to take, and hate being forced into. Even when you took that part away, there was still the awkward silence because I didn’t know how to talk to the group or communicate my ideas to them.
Beyond school there’s work, parties, family get-togethers – even answering the door, shopping, ordering food, health appointments, [insert endless list of adulting here]. Any situation where you have to (or are expected to) talk to another human being can be so scary and nerve wracking. At its worst, it can push me into a panic attack. But of course, most of these situations are vital, and can’t be avoided. When there isn’t someone around to help me with these things (or I don’t want to ask for help because I hate being a burden), I invariably end up neglecting myself and the things that need doing.
Another important thing to mention is social ‘rules’. I have no idea what is meant by the elusive term ‘social rules’ or understand this so called ‘etiquette’ at work or school, which for some reason, everyone else is silently aware of. It genuinely feels like all of this was explained to everyone else in a neat little book which they were able to read through at a very young age, and I never got a copy of it. If I break these rules, or etiquette, I’m, at best, left feeling red faced when everyone else is gasping, or giving me funny looks, only for me to realise that whatever I did was totally unacceptable, and absolutely taboo – yet I was never told I couldn’t do it and now I’m in trouble?! Please send help!
Even before I got diagnosed (in my late teens) I always had this feeling in the back of my mind, somewhere, that I was just really, really different. Like, a permanent state of ‘what the hell guys??’. And until I got diagnosed, I had no idea why – and I mentally beat myself up for not being able to just ‘be like everyone else’. The questions ‘Why can’t you be more like X person?’ or ‘Y person doesn’t have a problem, so why do you?’ or ‘Everyone else is happy about this, why can’t you be?’ are questions I got asked a lot (and in lieu of the actual question being spoken, there was just ‘the look’ – one of thinly veiled disgust and disapproval), and I just didn’t know the answer, until I got a diagnosis – which was a massive ‘ohhhh’ realisation of a moment, but even then, I feel bad for ‘blaming’ my shitty ability to human on it.
There are things that other people can physically do, like take a walk to town on their own and buy something in a shop; or take an exam in a crowded room with a ticking clock as the only background noise; or have a drink with friends at a club playing the latest music at full volume – which I can’t do around 80% of the time because something mentally stops me. Yes, my body would do it, but I can’t make my mind let it happen. It’s as good as having an actual wall around my bed that I just cannot break or get past.
Which brings me onto sensitivity, I am hypersensitive – which may sound like the beginnings of being a superhero, but honestly it’s not, it’s mostly useless and usually shit. I’m over sensitive to touch, light, smell and sound. So, when I’m exposed to something that affects me, my brain is working overtime and it stresses me out immensely. Like, when your PC is busy beavering away on a task in the background that’s using most of it’s power, and then you want to do something uber simple like open Facebook and it has a shit fit cause it’s already going full steam – like, give it some space dude, it’s working it’s socks off, check Facebook when it’s less busy! Well that’s me when, for example, I’m in town, to everyone it doesn’t really look like I’m doing anything overly taxing, so maybe someone comes and asks me for directions. [insert end of the world here]. There’s so many things that I’m over sensitive to; bright lights (and equally, really sunny days, or really bright but white cloudy days), several similar volume sounds all going on at once (sat in my living room whilst my Dad plays a PC game, my Mum is on her laptop typing away and trying to have a conversation with my Dad, and my brother is trying to have a conversation with anyone who’ll listen…and I’m just desperately trying to watch the TV show which I was under the illusion we were all going to sit down and watch), LUSH – you know, the shop that sells handmade soaps and stuff, the smell is just too much for me, likewise with any other similar stores...and well, just a fuckton of other stuff.
Usually I will have the urge to run away from whatever it overwhelming me, as fast as possible, and if I can’t I will end up having some form of a panic attack – which can be very debilitating. For me, one of the worst and most frequent things is sound. I can hear noises which either other people can’t, or it doesn’t bother them because it’s so quiet – yet to me, these noises are incredibly loud, and can often drown out things which I know are definitely louder. I hate the little hum that comes from things on charge, or the ticking of a clock – both of which, if I’m having a particularly bad day, can drown out someone stood in front of me talking. I will miss chunks of their sentence because I couldn’t un-focus from the clock ticking away in the background (this was a problem in school as I would miss large parts of what the teacher was saying because I couldn’t stop hearing pencils tapping, clocks ticking or people chattering – and I would get into trouble for not paying attention, though when they repeated it I would always know the answer).
As for sensitivity to clothes – this can be an awkward one until you’re an adult, because of things like school uniform, which is compulsory (in the UK at least), but also because parents have a tendency to want to dress you a certain way. I can’t even count the amount of times I’ve literally ripped an item of clothing off because it made my skin feel like it was on fire. With anything that I’m oversensitive to, it just sets off a burning feeling inside of me and it forces my arms to straighten out and my fists to clench up, or I’ll hit my head with my hand repeatedly as if to try and get it to work properly, the way you tend to hit electrical items that malfunction (which is also something that happens when I have a panic attack) – which of course looks a little odd in public, and I know this, and I hate it, but I just can’t help it. When too many things build up I will get very restless and lightheaded, things will start to seem blurry and my breathing becomes difficult – I need to get somewhere away from it all, temporarily, to try and calm down and get everything back under control.
A sensitivity to touch is annoying when in a crowded place; a crowded place is bad enough because of the potential social aspect, not to mention the noise, but it also opens me up to being brushed past and jostled by the crowd. A light touch can be painful and the place where contact was made can feel like it’s burning, or bruised for a long time after the touch happened. I know I would prefer a heavy touch to a light touch, so with hugs, a tight squeeze is a lot nicer than a light cuddle.
On the flip side, there is under sensitivity to certain things, which can be dangerous. For example, I’m under sensitive to the temperature of water. I cannot tell the difference between really hot water and really cold water – the feeling is the same, initially I feel quite numb to it and then it feels like it’s burning, but since hot water actually does burn, when I don’t realise it fast enough, I’ve scolded myself. Being under sensitive to pain is also dangerous for obvious reasons...aaaaand there’s the topic of self-harm, which is always a difficult one. For me, at least, it’s something that I can focus on to shut everything else up for a while, and it’s such a relief. It’s not something to gain attention or to try and end my life, it’s just something to try and get back to my normal levels of stress if things have gotten out of hand and I feel like I’m teetering on the edge of a meltdown permanently. Pulling my eyelashes out is the main why I do this, and on really awful days I burn my arm with a lighter, other times I just shut down completely and stay asleep for a few days – which isn’t necessarily self-harm, but the lack of eating and personal care isn’t exactly good for me.
Of course, in the midst of all of this, is the feeling of loneliness. Whilst I can seem to make friends relatively easily, it’s very hard to work for me to maintain the friendship, so what I end up with are acquaintances, which don’t get me wrong, is lovely, but not having a closeness with any one person is sad on a level I don’t even have the words for. This, as well as many other factors (mental abuse from my real Dad, which left me with PTSD – the story earlier on where I mentioned my Dad was referring to my step father – and being bullied throughout school) has led to a somewhat permanent depression. My memories of being depressed, and being aware of it at the time it was happening, span back to when I had a nervous breakdown caused by a lot of bullying and failing to attend school (despite my high grades). It was a dark time for me, most of which I spent asleep because I felt it was easier – a habit I’m still trying to break years later. But when I feel depressed again, I get scared that I’m going to be stuck again, like I was before. I’m constantly trying to fight all of these internal battles, as well as multiple external battles, and after all this time, I’m just so exhausted. So I’ve started trying to be more accepting of everything – just so I can at least eliminate the anger I have for myself and my inability to just get on with things like other people can.
I can never tell you fully what it is like to be on the Autistic Spectrum. It’s not just the things I’ve listed; I could never list everything for you because it really does affect everything, even if I don’t notice, everything I do, I do because I have an Autistic Spectrum Disorder – just like everything you do, you do because that’s who you are, you wouldn’t do it any different because then you’d be someone else. I wouldn’t want it to go away, because then I’d lose who I am. I know I’ve struggled a lot at times because of it, but it’s so deep in the fabric of my being that if it wasn’t there then I wouldn’t be this person. And I like who I am, despite everything. It’s a different way of thinking, of processing the world – different sparks ignite different reactions and different outlooks create unique opinions. It’s being made to function in a set way, and being made to live in a world that doesn’t work in that way. I’m a video tape trying to be played in a DVD player. A square peg trying to be crammed into a round hole. There’s nothing wrong with the video tape or the square peg, they’re just not a good fit for their environment.
It is hard, but I wouldn’t change it; I’d change you so that you can have a better understanding, which is why I spend a lot of time trying to raise awareness and acceptance.