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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12 Comments

  1. I hope this question doesn’t sound rude or out of place:
    You had trouble understanding the difference between the story-telling “I” and your personal “I” when it came to singing the songs, right?
    Did you ever have trouble when reading stories with first person narratives, or had your understanding changed by the time you got to those?

    Also, this is a bit random, but I’m assuming you were not diagnosed when you were younger, correct? Was it because there was no diagnosis available (As in, Asperger Syndrome didn’t “exist” yet) or because they didn’t think to diagnose you? How old were you when you were diagnosed?
    Sorry, I am a bit nosy!

    • Hi Aubrey – no, that’s not a rude question, and actually I’d been wondering whether to mention stories in the first person. I didn’t start reading stories in the first person till I was older than five – most stories for little kids are in the third person (or they were, back then). I think I was seven when I started reading books in the first person. And at first they confused me, but I realised the name of the author on the book was not the name of the character in the story, so I worked out for myself that it was some fictional device. It didn’t cause the distress that the songs did – I guess because I was a bit older, and because I didn’t have to actually say the stories out loud, so it was reading someone else’s ‘I’ rather than making it my own ‘I’!

      And yes, I wasn’t diagnosed as a kid, because Asperger Syndrome wasn’t around as a diagnosis. The teachers sort of realised something was wrong – when I was five, the head mistress told my parents I needed to go to a special school for kids who were ‘educationally subnormal’, but my dad refused, so she said I had to see a psychologist. The psychologist did an IQ test on me and declared me to be gifted, and decided my behavioural issues must be because I was bored. (I was quite unaware of all this at the time – my dad told me years later. As far as I was concerned, I just had to go with my parents to a boring place in London and talk to a boring man about boring things. Hehe – no wonder he thought my problem was boredom!).

      I wasn’t diagnosed until a couple of years ago. I’d known for a while I had Aspergers, but hadn’t needed a diagnosis until then.

  2. So, here’s a thought:

    I have trouble with math. A lot of people have trouble with math. I have trouble with visualization, a lot of people have trouble with visualization. I have trouble with driving directions, a lot of people have trouble with driving directions.

    You have certain issues with areas of the English language. What’s to say that this is the Aspergers, and not just because your left brain/right brain strengths aren’t just in different areas?

    I mean, I can see where you’re coming from when you explain your thought processes, but I have odd thought processes that make me misinterpret things and people (as does the rest of the world), so is it really something of the autistic spectrum, or could it just be our unique(ish) human quirks?

    • Lots of people have problems with language. There are different sorts of problems people can have, and they are given different names and are caused by different sorts of difficulty in the brain, and sometimes can just be environmental. Having difficulty with language doesn’t automatically mean you have Aspergers. However, the particular differences of the brain of someone on the autistic spectrum give rise to specific kinds of language problems, and so I am writing about these, so that people who work with children on the spectrum can understand it from the inside out, as it were.

      If you read books about the autistic spectrum, then they always talk about ‘pragmatic difficulties’ and specifically difficulties with pronouns and difficulties understanding non-literal language. These are areas found to be common in children diagnosed with ASD. However, they are generally explained from the outside, as symptoms – behaviours. I’m trying to explain what’s going on inside the head.

      I would actually say that language is a strength of mine, but the more I have learnt about language development, the more I’ve realised that the way I’ve learnt it is not typical, and that the methods I’ve used are behaviours which are generally described as autistic/Asperger behaviours. So I hope that sharing my methods might be useful for people who are teaching language to children on the spectrum.

      I am sure that lots of people can relate to many things I write. It’s not like people on the spectrum are a completely alien species! 😉 And it’s important to recognise that it is a spectrum, and there are all sorts of individual behaviours and thought processes on the spectrum that different people can relate to, and I specifically try to write this blog in a way that all people can relate to it in some way, because I don’t wish to foster a ‘them and us’ attitude.

      I don’t know if you’ve read my whole blog, but I talked in the beginning about what is known and what is not known, neurologically, about Aspergers. And I try to relate what I write to the this. Basically, what the brain studies have shown is disruptions in links in the brain – particularly links between top-down and bottom-up processing. There is still much unknown about the autistic spectrum, though, so I use what is known and written about, and try to illustrate it in ways that people can relate to.

      Before Aspergers was named as a disorder, people like myself would indeed have been described as quirky (as indeed I was!) – and also as difficult and rude and unsocial and eccentric and geeky and all kinds of other names! However, whatever name we were given, we would still have been the same people, and experienced quite a lot of difficulty, unhappiness and misunderstanding at school. So if I can describe and explain things that can help reduce such unhappiness, difficulty and misunderstanding for kids in the future, then it doesn’t really matter to me whether you call it quirky or Aspergers. 🙂

      • As an aside to this, we saw another variation with my son, who has Asperger’s, when he was very young. People would look at him and say things like “You are so cute”, “You are silly,” “You are smart”, etc., and my son would become very upset because he thought they were changing his name to “cute”, “silly”, or “smart”. It was very hard for us to make him understand that they weren’t changing his name. And it was a rough cycle. He’d get upset and say, “I am not cute! I am Conner!” and people would think that was hilarious and start egging him on. It amazed me to see that adults would continue with that pattern even when they saw how much it was upsetting him.

      • To Ginger:

        Huh. My niece used to do that to – still does sometimes, when she’s sulking. (I quote, “I am *not* a young lady, I am *Julia*!”) Most of the occurrences were when she was around 2-3 (she’s now about 4-2/3). I don’t know if she’s on the spectrum (HFA or Aspie) or not, but she doesn’t seem to have trouble socially, so it’s a bit less likely. I kind of hope not, because of my own experiences; she’s very bright, and will likely have enough trouble going through school with that.

        And yeah, I can both see how people might think it’s cute, and also see Conner’s side. He’s taking it literally, and here they are laughing and continuing with it; I would count it amazing if he didn’t have a meltdown at least once, to be honest.

  3. This is pretty far OT, but I wanted to say that I relate strongly to your experience of other people’s experience of you. As I child I was horribly oversensitive to visual and auditory stimulation (for me “chaos”) and I caused all kinds of problems and was chastised for my Bad behaviour because I could neither explain the problem nor cope with it on my own.

    Even then (and by coping I mean “hiding”) this single difference in perception and sensitivity caused major problems for me, particularly as a teenager and then at university. It’s only in the last few years I’ve read about gating problems – the ability to block out parts of the environs that are not useful in the moment – amongst people who are manic-depressive. Bing bing bing! Like me!

    In many ways I think you and I are quite different. You seem both calm and analytical, and I’m really neither, though we’re both rather self-aware! Yet when I read what you write about your personal experiences I feel strong affinity.

    This world isn’t really built for either of us, I think, but we make our way.

    Incidentally, I agree wholeheartedly that language is one of your strengths. It’s why this blog is so interesting, and I hope people will find it helpful. I do. 🙂

    • Not really that OT, I don’t think, because I was talking about how people don’t understand certain reactions to things, so that would apply to sensory reactions. I didn’t know that those gating problems also happen in bipolar, but I suppose that makes sense now I think about it – maybe they are also what is involved in regulating emotion?

      I tend to describe it in terms of difficulty filtering out the irrelevant – where the brain doesn’t automatically filter – but I like the expression ‘gating problems’. It’s a good visual way to describe such things. In the autistic spectrum they happen with prioritising (needed for organisation) as well as with sensory input. I suppose they can happen in all sorts of areas of the psyche.

      I’m not always calm. However, when I write, I am using the logical part of myself, because that is the part that uses language, so then I seem calm. But inside I have lots of chaos and emotion. I think I don’t express emotion well in language – at least not in an emotional way – because my emotion is wordless, so it gets lost in the translation process. I think this is due to disruptions in connections between the left and right side of the brain – I use either one or the other, and it’s hard to integrate them. I’m reading a Donna Williams book about this, actually, so I might write an entry about that.

      I’m glad you find my blog helpful, Kitsune. 🙂

  4. Hm. You know, I’ve heard that before. People not writing emotionally, or having difficulty verbalizing emotions because the words are more linked to the rational, for them.

    I know you do portraits, but do you do less formal art just for expressive purposes? Or dance, or something? 🙂 Now I’m ever-so-curious. I don’t have any issue expression emotions in any of those channels — but then that’s my way. I’m over-emotional pretty nearly all the time.

    • I think writing and drawing serve to calm my emotions, rather than be my emotions, if that makes sense. They help me put my emotions in order. Drawing is very calming – I become one with the picture I’m drawing and I forget myself, so it’s very different from writing, where I am analysing. Writing is calming too, but in a different way.

      I think if I do creative writing, then it’s a way of expressing emotions, through characters – although most of the time I don’t actually write my stories but think them in my head. That is my emotional expression, I guess, where the story is my emotions, rather than being a means to calm them.

  5. Hi. I started reading your blog because I was looking for the source of a quote (from another blog about Neurodiversity) – which is in this post. I really liked the point about “neurotypicals represent those with X as lacking empathy for not understanding NTs, but this goes both ways when NTs don’t understand us.” I think it applies to many aspects of mental difference beyond just the Autistic Spectrum.

    Your blog is beautifully written, and very moving. I relate to huge chunks of it – and I have to thank you for providing such a valuable insight into Aspergers, and also all human behaviour (I’m not autistic but I have other mental health problems. I think that things you have written have helped me to understand – and be able to explain more clearly – parts of mine own mind function, and dysfunction.)

    I hope you don’t mind if I requote you and link back to this from my blog.

    • Thank you – I’m glad you’ve found it helpful, and I agree that a lot of aspects of the autistic spectrum relate to other mental differences too. I also find when people with mental health problems write about their experiences, there are some things I can relate to. You are quite welcome to quote me and link to me.

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