What is Aspergers Syndrome? - by WillowHope
As a person with Aspergers, I will try and explain what it is – but, having always had Aspergers (obviously), I can’t really do much comparing with a ‘normal’ or ‘NT’ perspective. I don’t really feel that it is something that a person has, because there is little to be done to medicate it – it has to be something separate and targetable for that, surely? Aspergers is wound into my DNA, my personality – every action I take; it’s who I am.
On the whole, Aspergers makes life a little harder – sometimes almost 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 an planned in my head; it’s an act – one which I’ve spent a while examining ‘normal’ people in order to put together.
I want to write this, because I don’t like the usual definition, which is everywhere you look. It’s right, to an extent, but it’s a non-personal view, more than likely written by a ‘normal’ person.
At the core of Aspergers, 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’s necessary to go to school, but with that comes an expectation to make friends, and even if you don’t or aren’t pressured to, there’s 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 take that part away, as if I could cope with it, you are still left with the awkward silence that would happen if I didn’t talk to the group, and communicate my ideas to them.
Beyond school – which believe me, is a living nightmare for a person with Aspergers (and not just because of the social aspect, but I’ll get to the other reasons in a minute), you have work, parties, family get-togethers – even answering the door, shopping, ordering food and health appointments. 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. If a person with Aspergers doesn’t have anyone to help them with these things, they can end up neglecting themselves through their anxiety towards anything social.
Another important thing to mention is social ‘rules’. I guarantee you that almost everyone with Aspergers will have no idea what is meant by 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 we never got a copy of it. If we break these rules, or etiquette, we’re left feeling red faced when everyone else is gasping, or giving us funny looks, only for us to realise that whatever we did was totally unacceptable – yet we were never told we couldn’t do it and now we’re in trouble!
Whether or not you know you have Aspergers, you have this feeling in the back of your mind, somewhere, that you’re just really different, and until you get diagnosed, you have no idea why – and you mentally beat yourself up for not being able to just ‘be like everyone else’. The questions ‘Why can’t you be more like X person?’ or ‘X person doesn’t have a problem, so why do you?’ or ‘Everyone else is happy about this, why can’t you be?’ are questions we get asked a lot, and we just don’t know the answer, again, until we get a diagnosis – but even then, we feel bad for ‘blaming’ 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 local club playing the latest dance tune at full volume – which we can’t do because something mentally stops us. Yes, our bodies would do it, but we can’t make our minds let it happen.
Which brings me onto sensitivity; a lot of people with Aspergers are over sensitive to something, whether it be touch, light, sound etc, or an unfortunate combination. For me personally, but I know a lot of other people who are the same, I am over sensitive to touch, light, textures (food and clothes) and sound. This means that when I’m exposed to something which I’m oversensitive to, I will panic. Usually I will have the urge to run away from whatever it is as fast as possible, and if I can’t I will end up having 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 comings 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 rage inside of me and it forces my arms to straighten out and my fists to clench up (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.
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 us up to being brushed past and jostled by the crowd. A light touch can be painful for someone with Aspergers 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.
Of course there are lots of different things which we can be oversensitive too, but you get the idea. On the flip side, there is under sensitivity to certain things, which can be dangerous. For example, I know a lot of people, myself included, are under sensitive to the temperature of water. For me, at least, I cannot tell the difference between really hot water and really cold water – the feeling is the same, it feels like it’s burning, but hot water actually does burn, and I don’t realise it fast enough, and putting it under cold water just hurts as well! Being under sensitive to pain is also dangerous for obvious reasons.
Being awkward in social situations is awful, but a lot of our other symptoms make it clear, somehow, to ‘normal’ people that we’re different, or vulnerable, which can often open us up to bullying (and often people take advantage of us, which can be severe in worst case scenarios). Plus, a lot of people with Aspergers are really intelligent, which I guess puts us in the ‘geek’ category, and even when a ‘normal’ person is a geek, they usually get bullied to some degree – so to be a geek with Aspergers is just a nightmare. As nervous, shy people, we don’t really feel that we can stand up for ourselves either – at least, I never did, which only made things worse. And despite what you’ve read, a lot of people with Aspergers are in fact very emotional people, and when that emotion comes out as tears because you’re being bullied, well, as you can imagine, it doesn’t help the situation.
I’ll stay on the subject of emotions, because I feel like it’s always explained wrongly. I for one am very emotional and I do care a lot about people; the only problem is that I don’t really know how to show my emotions in the right way. I care a lot for my parents and my brother, and even my extended family, but I don’t really show them; I don’t even miss them that much when I don’t see them for a while. It’s just easy for me to shut that part away when we say goodbye. I feel like when I leave a place, or a person, it or they stop existing until I’m there or see them again. Of course I know that this isn’t the case, but it’s how my mind processes it. Though, the exception is my fiancé, I can never be apart from him for long, as he is vital and I cannot be okay without him and I do show him that I love him. As for handshakes, cuddles or other methods of showing an emotion through a physical act, I dislike it most of the time (except for with my fiancé, but even then we sometimes have issues) because I’d rather not be touched, so people instantly think I don’t care or am a ‘cold’ person. I’m only really comfortable with my fiancé, my Mum and my brother.
Something else which we can struggle with is changing from sad to okay again when something has upset us. When I get upset about something or angry or argue etc., I can’t feel okay again for hours, sometimes a whole day or two. Even if the situation is resolved, I just keep thinking about it when it wasn’t resolved and it upsets me over and over. A lot of people, ‘normal’ people, would be fine again once a resolution had been reached, and so they don’t understand at all why I might still be upset by it. That is something which often annoys me – how ‘normal’ people don’t struggle with what I struggle with, so they have no idea why I would struggle, just because they don’t; and so of course, to them I’m just over reacting. Sometimes I do over react, but in my head it really does feel that bad, and my feelings aren’t stupid: it’s how I feel – whether you would feel that way or not should not determine whether or not my reaction is justified. Opposite to this is when a ‘normal’ person does struggle with something that a person with Aspergers does, but only mildly – yet they tell us that everyone struggles with it, as if that justifies them telling us that we’re overreacting. It’s frustrating because I know they’re trying to make me feel better, but at the same time, all it does is make me feel worse because they’ve failed to understand how hard a time I am having, because they once went through something similar and were fine with it. Everyone is different.
Another large part of Aspergers which is always mentioned is obsessions/interests; I have and have had many obsessions over the years. The thing that separates people with Aspergers obsessions from ‘normal’ people’s obsessions is their near inability to break away from it to do important things, like eat, wash etc. They also go above and beyond to find out or collect as much as they can to do with their obsession; of course this isn’t always the case, I have ‘light’ obsessions or obsessions which I feel don’t warrant a collection of knowledge or items. I get obsessed with TV shows, but all that really means is I will watch all of the episodes back to back in any spare time I can possibly allow, until they’ve all been seen. Yes, I sometimes forget to eat or shower – but this was worse before I got engaged because I lived with my Mum and she would bring me food and I wouldn’t have to break away for anything! Now I have to get things ready, cook or wash clothes etc.
Along with collecting things to do with an obsession, people with Aspergers tend to ‘word vomit’/ ‘info dump’ to other people, who usually don’t care. This just means that they find any reason to steer a conversation towards their interest, and once they get there they struggle to stop talking about it – and also struggle to see that the other person is bored. On reflection, we often realise that we probably went on a bit too much, but it’s too late then – and the next ‘word vomit’/ ‘info dump’ will leave us too ‘one track minded’ to think about how we might be doing it again. Sometimes, I can see myself going too far and manage to shut up, but not often. Luckily for me, my fiancé shares a lot of the same interests and so we both ‘word vomit’/ ‘info dump’ on each other for hours and don’t notice/care!
Of course, in the midst of all of this, is the feeling of loneliness. We know we can’t make friends easily, and we know we don’t really like having a friend when we do get one, because it can be very hard to work for us to maintain the friendship – but it doesn’t stop us wanting it. Maybe because it’s what is seen as ‘normal’, and we want that for ourselves, or maybe because we would like to share our interests – though, finding someone like that is difficult. These feelings, mixed with the confusion about our differences (which, no matter how long you’ve known about Aspergers, can always be hard to process, and we tend to get angry at ourselves a lot for not improving or forcing ourselves to do something) and the anger which is sometimes just there, unexplainably, we often tend to suffer from depression. It’s not always there all the time, but when it comes back we feel so lost. For me, my memories of being depressed 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.
This loosely relates to routine, again, another thing which is always mentioned with Aspergers. I was in a routine of sleeping a lot to get away from being so upset – and when I get upset again, my reaction is to sleep. Routines are what help me get through things. A lot of people with Aspergers have routines, and sticking to them helps them to feel better – similarly, breaking the routine can make us feel terrible. And, if we’ve broken a routine ourselves, through being depressed and not feeling like we want to do anything, it makes things so much worse and we punish ourselves for our failure – when this happens to me I end up in a vicious cycle which is incredibly hard to break out of, but to start, I always write down a routine and if I stick to it, I can usually start to feel okay again.
I like to eat the same things a lot – every Monday we’ll have beef etc. It makes shopping easier and I like knowing what will be for tea – and I’m in a routine of knowing what and when to cook depending on what day it is. It’s just a comfort. Everything else can sometimes feel so difficult, so having a routine to rely on is nice. For some people, their routine can be very in depth and detailed for the whole day, and they do this every single day – deviations from this, through external, uncontrollable factors can be very upsetting, because we’re relying on the comfort of familiarity. Again, panic attacks can happen when routines are broken.
Similar to this is unexpected things in general, even if they don’t ruin a routine, they’re still not welcome. If someone calls round to see us without ringing, even if we were just watching TV or a film and it didn’t matter to us that much, in our heads, that’s what was happening for the next hour or however long. Once something is set in our minds, it can’t be changed without causing a least a little discomfort, but again, it can end up with a panic attack or meltdown. I try not to take anything seriously until it’s too late to change – but like I said, someone turning up out of the blue isn’t something you could have ever predicted or planned for, so no matter what you were doing, you weren’t expecting this, and it’s just hard to get your head around and feel okay with it straight away, or quick enough.
I can never tell you fully what it is like to have Aspergers. You cannot filter out your normal way of thinking to understand what situations would be like from our point of view. It’s not just the things I’ve listed; I could never list everything for you because Aspergers really does affect everything, even if I don’t notice, everything I do, I do because I have Aspergers – 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 my Aspergers to go away, because then I’d be someone else. 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. The people who bullied me made me stronger, and made me want to be something special, so they couldn’t ever say that they’d won.
It is hard, but I wouldn’t change it; I’d change you, so that you can have a better understanding.