Wednesday, November 30, 2011

Showcase: Sarah McCullochs's The Reality of an Autistic Person

The Reality of an Autistic Person

Autistic sweetiepie boy with ducksinarow The Reality of an Autistic Person
Imagine you’ve gone to a different country, one where people speak your language but the way they live their lives is completely different to how you do it. Any time you ask someone a question, like what sort of currency they use or what public transport is available, they look at you like you’re crazy and tell you that you should already know. Worse, every so often, others will tease you and point you out to other people as someone who doesn’t get the simplest things. Angry, frustrated and confused, you give up asking questions and try to avoid having to speak to anyone about things you don’t understand. You try to work out what’s going on by watching the other people around you and trying to copy what you see for the duration of your stay.
Now imagine that you are autistic, that that country is your society, and the duration of your stay is the rest of your life. This is the reality for autistic people. We have no idea, literally, what you think you are doing when you ask us to go for a quick drink in the pub. This won’t apply to everyone of course, but for many autistic people, a typical thought cycle on being asked to go for a social drink in the pub is something like this: “Where am I going to sit? What are we going to talk about? When will it be appropriate to leave? What if there’s an awkward silence? How do I order a drink? What if there’s a queue? How do I queue? Why do people all crowd around the bar if I need to queue, where should I stand? How do I know what to order? How will I know how much that costs? If I’m going with this person, are we going to queue together? Who goes first? If I get a drink first, how am I going to decide where to sit? Should I stand with the other person while they get a drink? If so, are we going to make small talk? What are we going to say? If they get their drink first, should I ask them to wait? Should we choose somewhere to sit that’s quiet so I can hear them, or somewhere I can use the surrounding environment to act as distractions for me or opportunities to say things? When we sit down, how quickly should I drink my drink? If I drink it quicker than them, does that make me look bad? Is it acceptable to buy another one if they drink much slower than me? If I drink really slowly, are they going to feel obliged to not buy another drink if they want to because of how slowly I am drinking? I don’t want to ask any of this of the other person, they’ll think I’m stupid. Normal people don’t ask these things. I can’t deal with it. I won’t go.”
That’s before you even get to the art of attempting to hold a conversation with something that isn’t exclusively on your obsessive interests. The sheer anxiety of having to answer all of these questions will perhaps explain to you why I refused to go to any event exclusively deemed social until I was 19. I went to a grand total of two birthday parties during my entire time at high school, not because I wasn’t asked, but because I found the two I went to so stressful I decided it wasn’t worth going again. While I slowly got over this aversion, to begin with I had to organise socials for different groups that I ran in order to justify my existence in a bar. It wasn’t “social”, it was “work”. That made it marginally less scary. I’m still not a fan. Perhaps those of you reading this will now now why I appreciate being asked to house parties (validation that I am accepted into the group) but don’t actually go (People! Noise! Crowds! Uncertainty!).
The fact that other people don’t get these extreme anxieties and will regard you as weird if you try to deal with them makes it harder to get answers to the questions that make you so anxious. I refused to go to a hairdressers until I was 15 because I thought that the spaceship style hairdryers would burn my head off and I didn’t want to go anywhere near them. I didn’t want to tell my mum about this because the fact that other people were using them clearly meant that there was a reason people were using them that didn’t involve burning their head off, and I thought she would laugh at me. But I couldn’t ask, so I made my mum cut my hair until I finally volunteered to go to a Supercuts – notable for not having hairdryers at all and thereby allowing me to avoid the issue altogether. And even though I am writing this as if I’m over it, I still haven’t set foot in a hairdressers that has one…
Maybe you think that if my parents had tried to socialise me at an earlier age, this wouldn’t have been a problem. Well, they did try. My mum used to try to invite other children round when I was small, but I didn’t like them because I thought they were boring. I refused to invite anyone from school round during the holidays: when my mum asked why, I replied, “I see them all the time at school, why would I want to see them out of it?” I spent my time reading, watching children’s TV, and making mud pies in the garden. I enjoyed reorganising cupboards and making inventories of my toys. I obsessively played the same 15 songs that I really loved over and over again. I was mostly alone, I enjoyed being alone, and when my parents tried to take me to play with other children, I made it very clear that I didn’t want to be anywhere near them. But sometimes parents’ well-meaning efforts to “socialise” their child can make things a great deal worse: when I was 8, I was taken to a friend’s birthday party. I got there to discover it was at a sports centre and everyone was playing games. I was dressed in sports gear, handed a hockey stick, and expected to immediately join in a loud hockey game I didn’t know the rules to with 12 children I’d never met in my life. I totally freaked out, refused to leave the bench, and sat watching the game until I was rescued from my parents’ anger by the birthday child’s mother, who let me play computer games outside the sports hall. My parents decided to punish me for *their* humiliation and took me home before the lighting candles on the cake, the part of the party where I knew what I was supposed to be doing and knew I’d get cake as a reward for awkwardly singing “Happy Birthday”. That experience largely stopped me wanting to go to birthday parties again. I still feel bad when I think about it now.
The autistic community is largely united in spending a great of time alone in their childhood, but are split into two different camps on whether that was because they wanted to play with other children and couldn’t work out how or were rejected by them, or whether they actually just didn’t find other children interesting and wanted to ignore them. I was largely in the latter camp and it wasn’t until I hit puberty that I really noticed the existence of other people at all. That might seem strange to you, but I really did view other people as walking furniture that were as relevant to my life as the table I sat at. I talked to them when I wanted to get something done, and I cried when they were cruel to me, but that was as far as it went. The only reason I wanted friends was so I had someone to sit next to when we had to sit down and I didn’t have to deal with the anxiety of working out where to sit or being bullied for sitting alone. The happiest memories I have of my childhood was when the people around just let me get on with my thing and went with what my history teacher kindly called my idiosyncrasies. At holiday club, I built a shelter out of a table and tablecloth and spent a lot of time just sitting in it – a wise youth worker told the other children not to bother me and I really enjoyed that particular summer. A cool RE teacher used to throw all the other kids out of the reception room after school and let me stay and read the room’s bookshelf on my own.
By contrast, when I was 17, someone sat in my chair in History. I asked them to move. They refused. I appealed to my teacher. She told me to sit down and stop being silly. I sat on my bag next to her and proceeded to make pointed comments about how I wanted my chair back for the next twenty minutes. My history teacher told me to stop being a bully and get over it in front of the entire class. I uncontrollably burst into tears and had to leave the rest of the lesson. It was incredibly and mortifyingly embarrassing for me and my teacher, who told my class that no-one was to ever sit in my chair again. They didn’t.
I should point out that none of that was explainable at the time. If you had asked me as I sobbed my eyes out in the school toilets why I cared so much about sitting in “my” chair, which was no different from any other chair in the room, I wouldn’t have been able to tell you. Now I can tell you that it’s an aspect of autism to keep the same routines as much as possible in order to avoid anxiety over the uncertainty of having to make a choice. Sit in the same place, eat the same food, wear the same clothes, and you don’t need to deal with the paralysis of having to choose between more than one option. All of my socks are exactly the same colour so I don’t have to worry about it. You can work out ways to deal with things that make people think you’re a massive weirdo, but I don’t think they will ever go away. Maybe you think I don’t seem that bothered anymore about people sitting in the same chair that I always sit in? Maybe you didn’t notice that I sit as close to that chair as possible…
My life changed when I hit 18, left home, and had a chance midnight conversation with a flatmate who was sufficiently drunk he didn’t mind repeating himself over and over again until I understood that I had no regard for the feelings of other people because I hadn’t really considered that other people had feelings. That might sound a bit cold to you, and perhaps a bit strange that I had made it to the age of 18 without realising that, but that’s how undiagnosed autism works. You don’t realise you have a problem negotiating other people’s feelings and social cues because you actually aren’t aware that there *are* other people’s feelings and social cues that are different from your own, let alone that you aren’t paying attention to them. All we understand is that authority figures and peers punish us for things that they won’t explain properly, and we don’t know why. You can learn that people get upset when you shout at them when you’re angry, but you’re simply observing the reaction rather clinically. Making the link between how you feel when people shout at you when they’re angry and how other people feel when you do it to them, and the fact that these two feelings may well be different, doesn’t happen automatically the way it does to other people.
This is especially true if, as is the case for many autistic people, you look down on emotion as illogical (if *anyone* says this to you, break out the diagnostic tools). Maybe you’ve had a conversation with an oblivious autistic person who’s just upset someone and you’re trying to explain why and you say “And so when they asked you if they looked fat and you said ‘yes’, they felt sad”, that person replied, rather surprised, “But they shouldn’t, that’s stupid” (again, if anyone says this, test ‘em). A lot of well-meaning people will then say “But how would you feel if someone said that to you?” and get the response, “Well, it would be true. Why would I feel down?” It’s hard to deal with that kind of approach, and in my experience, accepting that other people have emotional reactions over stuff that doesn’t make sense to them is one of the most profound and conscious-raising realisations an autistic person can make. Certainly the moment I realised that my comments on my flatmate’s tennis-playing skills were factually true but had nonetheless hurt him in a way that I hadn’t intended, and that he didn’t accept, “But you shouldn’t feel that way” as a reason to stop being hurt, was one of the most significant moments in my life so far.
An important corollary to this is that just because the autistic person just said “but they shouldn’t feel that way”, doesn’t mean that they themselves won’t. Someone may well then call that autistic person fat one day, or tell them they have a friend who would beat them at tennis, and they will be upset by it, but duly apply their own value system and deem their feelings irrelevant. A struggle will then ensure between the urge to be upset and the feeling of disgust that they are feeling upset. This can often result in an autistic people refusing to believe that they are sad, or refusing help and support for depression, because they shouldn’t be having those feelings at all. This can be pretty catastrophic in relationships with non-autistic people if it doesn’t get picked up. The self-aware autistic person has to learn to accept that both they and other people can have a variety of emotions, that that is ok, and that whatever they and the other person is feeling has to be worked into their logical response to things.
Reaction tends to be mixed when I tell people I’m autistic now. A lot of people with experience of autism say, “Yeah, totally, that’s cool.” Others say, “Nah, you don’t seem autistic. You’re just a bit blunt.” Some will flat out tell me that I’ve been misdiagnosed and I couldn’t possibly be autistic in their opinion. I think that’s for two reasons. The first is that I have known that I’m autistic for four years. That’s a lot of time in which to sit down and actively work out how to fit into society, to realise why you feel uncomfortable in various situations and work out ways to cope with them. I know what I can deal with and what I can’t, so you’ll rarely catch me in a situation where I’m being “weird” because I don’t know what to do or feel very anxious. I think the other reason is that if you aren’t an arm-flapping, constantly interrupting, space-obsessed Aspie of the most unself-aware order, people will refuse to believe that there’s anything wrong with you. Because they perceive autism as being something “wrong with you”. It’s not, it’s just a different way of thinking. The reason we get so distraught over it is because the things that make us tick aren’t understood very well at all – if you look at the internet and medical literature, you’d think autism is something that happens to children, mentally challenged people, and psychopaths. The idea that the work colleague at the desk next to you who just seems extremely driven and antisocial might be consistantly refusing to go to the pub with you because they’re afraid is rarely to be found. As are any explanations as to why your otherwise attentive and charming lover might be unable to conceive of why you would be upset that you told them something heart-wrenching and painful and they had no reaction to it (because they have no frame of reference to refer to in order to know how they should feel).
I find this really annoying because I think autistic people are really cool, although I would. If autism renders you incapable of understanding social cues, it also renders you largely oblivious to accepting the status quo. Polite people call us blunt, others call us rude. I call us honest. If your colleague is being a bully and getting away with it because no-one wants to call them out, often the autistic person, unconcerned about the intricate social webs this person has built around themselves will just say, “Why do you keep saying that we have to work as a team when you keep forcing us to do projects we don’t want and which you don’t help us with?” Autistic people will break omerta. They get hated for it because then the non-autistic people have to deal with the things they were afraid to confront. But wouldn’t the world be a lot more straight-forward and easier to navigate if people just said “We seem to be getting quite close lately. I quite like you and I would like to have a casual sexual relationship with you that might lead to something more if both our feelings change but only if we actively agree that is the case – would you like to have a date on that basis?” Maybe in slightly more romantic language…
Autistic people are also extremely helpful, for the most part. I know few autistic people who if asked a factual question they don’t know the answer to, won’t go off, find it out, and get back to you, usually with references and notes on further information. You’ve piqued our curiosity, and now we want to know the answer as much as you do. This is why I ended up learning about EU official chemical risk and safety phrases last night. All that information then gets stored away for the next person who asks. Autistic people are dedicated to everything they enjoy, including people. If they like you, you won’t find a more devoted and faithful friend or lover. Tell us exactly what you want, in plain language, and you will probably get it. Expect us to mind read, and you’ll both be very unhappy without knowing why (if they’re undiagnosed). So when two self-aware autistic people get together, the result is a ridiculously practical but deep mutual understanding. I really like that.
What I am basically trying to explain here is that autistic people, above all, like certainty. We want to know exactly where we stand, at all times, whether that’s in relation to our parents, teachers, friends, lovers, or socks. If we cannot have that information, we get anxious, confused, upset and “weird”. Give us that information, and autistic people have a lot of really awesome things going for us that we would love to share with you and show you how we see the world. Refuse it, and we’re just more weirdos for you to avoid. But believe me, we’re trying to avoid you, too.


Usethebrains Godgiveyou said...

Great! Especially loved the next to last sentences. Never thought of it that way, but you know, it ain't all about the NT's way of doing things.

Sockitmama said...

Sarah, I really enjoy your post, but I don't feel that autism is just a "different way of thinking.' I'm actually going to do a blog on this in the New Year, but the one thing I can say is that this comment typically comes from a higher-functioning person with autism or Aspergers who has not gone the course of the many of the families through our medical issues. Autism is much more serious than a "different way of thinking."



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