When I is not really me

One of the most frustrating things about Asperger Syndrome is that I find I sometimes react to certain things in a way that is quite different from what is considered the norm. This is because my brain sometimes perceives things differently from other people, and often has different values and priorities. And so there are times when I can’t understand why people are reacting the way they are, and times when people can’t understand why I am reacting the way I am.

I think it’s important to draw attention to the fact that this lack of understanding goes both ways. I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece. These double standards are unhelpful. They place all responsibility for lack of understanding on the autistic person, and create a divide between those who are on the spectrum and those who aren’t.

A more helpful and respectful approach would be to see autism and lack of autism as two different cultures – like, say, the German and the French – living alongside each other, and for both sides to try to educate each other about their differences and to make an effort to try to understand each other. And most importantly for both sides to recognise that underneath the differences, they are both human and thus have an awful lot in common too.

This is what I attempt to do in my blog. I wish to explain what it’s like to have Aspergers, in a way that makes people think: ‘Actually, it does make sense for a person to act in such a way, if this is what is going on in their head’. I want to lower the divide, and to be seen as a human rather than a puzzle.

In my last entry, I mentioned difficulty with pronouns – the confusion of me being ‘I’ when I talk about myself, but ‘you’ when someone else talks about me. I talked about how I found this confusing as a child, but was able to understand how the pattern worked when it was explained to me. Unfortunately, grasping the correct usage of pronouns didn’t mean that pronouns caused no more problems. However, the kinds of problems they then caused were not visible to others in the way they would be if I were simply using the wrong pronoun. The new problems they caused me as a child manifested in a way that was completely incomprehensible to others.

As a child, I liked singing songs. At least, I liked all songs except one. There was one song that caused me great distress when I learnt it at five years old at school. It was the song that goes like this:

One, two, three, four, five;
Once I caught a fish alive.
Six, seven, eight, nine, ten;
Then I let it go again.
Why did I let it go?
Because it bit my finger so
.

There are two more lines after this, but I never heard them, because at this point I would start screaming loudly and steadily, and stick my fingers in my ears.  I didn’t want a fish to bite my finger. And ‘I’ and ‘my’ refer to me when I use those words, so this would mean that a fish had bitten my finger. I couldn’t simply not sing, because the teacher had told us to sing. It was like the teacher was making a fish bite my finger. So I screamed, out of terror, because I didn’t want to sing these words, because I didn’t want a fish to bite my finger, or to have bitten my finger. I didn’t mind singing about catching a fish, because I wouldn’t mind catching a fish, but I didn’t want to sing about a fish biting my finger.

I simply didn’t understand that the song was about a fictional ‘me’, and that even though I was singing it, it didn’t really mean me, but it was more like telling a story, about a ‘her’. Perhaps if someone had explained this to me, I’d have been okay with singing it. But of course one had explained that to me, because it didn’t occur to anyone that this needed to be explained to me. Most people see it as quite obvious.

My teacher was quite startled when she first taught this song and I screamed. She asked me what was wrong, and whether I was hurt.  I couldn’t explain what was wrong, and she got impatient and told me to stop screaming because I was spoiling it for everyone else. That was a common criticism aimed at me – I was always spoiling things for everyone else. My behaviour was unpredictable and I was generally seen as naughty – so my screaming was just seen as another instance of naughtiness and unpredictability. Teachers would mostly try to stop me screaming rather than try to get to the root of the problem.

Anyway, the teacher got us to sing the song on several occasions, and each time I screamed.  I eventually screamed that I didn’t like the song and I didn’t like the fish biting my finger. My teacher told me impatiently that it was only a song. But ‘only a song’ didn’t mean anything to me, and I started up a new batch of screaming when she introduced a new ‘fun’ song to us, entitled ‘I’m taking home a baby bumblebee’. I’d experienced wasp stings, and the thought of singing about a bee stinging me seemed like the most awful thing ever – even worse than a fish biting my finger.

Of course my teacher didn’t understand my reaction, and looking back, even if I’d been the most articulate child in the world, I would not have been able to explain it to her, because an explanation would require a knowledge of the fact that I didn’t understand that singing songs in the first person didn’t literally mean I was singing about myself. Had I possessed this knowledge, there would have been no problem in the first place to have to explain! So I can only explain it now in retrospect.

Also in retrospect, I know that the most useful thing for me would have been someone actually explaining to me that some songs use ‘I’ instead of ‘he’ and ‘she’, but that this is just a story-telling custom, and that it doesn’t mean they are about me. And it would have been very handy to have been told that I didn’t have to sing if I didn’t want to.  But of course, my teacher had no way of knowing this, because I had no way of explaining my difficulty to her.

I think it is this sort of difficulty that makes people see autism as a puzzle – but it is a difficulty that can be addressed when people on the autistic spectrum are able to understand their difficulties in retrospect, with more knowledge. And then people who are not on the spectrum, once they realise that autistic people see things differently, are able to see their own assumptions from the outside – from the perspective of someone who doesn’t hold the same assumptions – and then explain them, rather than assuming they are assumptions that everyone shares. So this is a way that mutual understanding can be reached.

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Left, right, you and I: pronouns and perspectives

When I was a child, every schoolday began with assembly. I’m not sure to what extent other countries have this custom, or even to what extent it still happens in the UK, and it varied slightly at each school I attended, but at the first school I attended, it involved all the children in the school traipsing off to the gym, where we sat on the floor in rows, stood up to sing a hymn, and then had to sit through a speech by the head mistress about our collective misdeeds, or something which was supposed to be inspirational or edifying, or occasionally a chapter from Clever Polly and the Stupid Wolf.

I found assembly a bit odd and overwhelming. I would hear fragments of what the head mistress said and zone out for most of it. I remember one day she started by asking us whether we knew the difference between left and right.

I didn’t. I was five years old and found left and right very confusing. Not in simply terms of which was which, but as concepts. I had no idea what the words ‘left’ and ‘right’ were referring to at all. I had learnt about a left hand and a right hand, but then there were other lefts and rights which weren’t about my hands, but about all kinds of other things, and sometimes appeared to be a vague undefined space. I felt very lost, because a lot of other kids were nodding proudly, or they were whispering that they didn’t know which was which – but clearly they knew what these left and right things were supposed to refer to, even if they didn’t know which was which, whereas the words ‘left’ and ‘right’ meant nothing to me other than my hands.

Then the head mistress said something which I found quite terrifying and overwhelming, and which made me zone out right away. She told us that what was left for us was right for her. She, facing us, pointed to her left, and told us that it was our right. I panicked, especially when I saw the other kids laughing and nodding, clearly understanding the illogical thing that the head mistress was telling us. In a sinking sense of lostness, my mind dismissed left and right and zoned out to things that made sense to me.

I write about this now because it occurs to me that it illustrates two particular difficulties that people on the autistic spectrum can have, both of which would come under the category of ‘pragmatic language impairment’, which is one aspect of the autistic spectrum.

The first difficulty is when a word’s meaning depends on context, which is clearly the case with ‘left’ and ‘right’. Children on the autistic spectrum will often learn a very specific meaning to a word, and have difficulty expanding this meaning to other things. In fact, all children, when learning language, will learn specific meanings at first, whether they are on the autistic spectrum or not – they might think that the word ‘dog’ applies only to their dog, for instance – but most children are easily able to expand and refine the meaning to a word in the light of new knowledge, whereas this can be more difficult for children on the autistic spectrum.

I’d had the experience of ‘left’ and ‘right’ being used to describe my hands, and therefore, in my mind, the words were about hands. I knew I was left-handed, and this made sense. However, when people started to use the words ‘left’ and ‘right’ for other things, I became confused and scared. Fear might seem an odd feeling to have about two words, but it was a frequent emotion I had when I saw that the world was making sense to others and not to me, and I had no sense of how it could be possible for it to make sense to me.

The second difficulty is the same sort of problem that a lot of kids on the spectrum have when they get pronouns confused – a difficulty with taking more than one perspective. With pronouns, I managed to grasp them quite early on. I remember asking my mother in confusion why she said ‘I’ for her, but I had to say ‘you’ for her, and why I said ‘I’ for me, and she had to say ‘you’ for me. It seemed very illogical that the word ‘I’ referred to many different people, depending on who was talking, and that both my mother and I were both ‘you’ and ‘I’. But my mother explained it to me and I understood how it worked, even though it seemed illogical. Pronouns were less confusing than left and right because they referred to specific people rather than to some vague space which constantly changed, or a hand or a foot.

Pronouns, and left and right, require taking perspectives – you need to be aware of both your own perspective, and another person’s perspective, and how those two are different. And this is something which the child on the autistic spectrum finds difficult, because of the multitasking required. It can be learnt – or at least, for myself, I learnt it. I understand left and right now. However, I have a clear recollection of the time when I didn’t understand it and how this was scary and overwhelming.

I think the scariest thing was realising that something made complete sense to other people, and so feeling that it should make sense to me, but also knowing that it didn’t make sense, and having no idea why, and no idea how to convey my confusion, and not knowing whether I would ever understand it. It occurs to me now that this is an important thing to bear in mind when working with kids on the autistic spectrum – that the experience of not understanding can be frightening. In retrospect, I think a good way to allay fears would be for a teacher to explain that they know it can be difficult to understand, and that some people find it harder than others, and to invite  children to ask any questions and make clear that no question is a stupid question.