‘I just assumed she was lazy’

When I was 13, I changed school. Well, I changed school many times in my childhood, but what was significant about the change at age 13 was the English teacher. The English teacher at my new school was not like any teacher I’d had before.

Everyone said she was their favourite teacher, but I wasn’t so sure. She would spend a large portion of the lessons chatting to us. Chatting about the sorts of things that the girls in the class wanted to talk about – it was a girls’ school, so this included chats about periods and boyfriends and make-up. I didn’t like this much because it seemed to have no structure, and didn’t seem to have anything to do with English. In retrospect, I see how she added the curriculum in subtly, and tried to make it as relevant and interesting as possible, but at the time, I had no idea of what we were supposed to be learning in these classes.

Then she set us a project to do. We each had to put together a project entitled ‘Me’ – it could include pieces of writing, and photos, and anything that gave information about us. No deadline was given. It was just something we were to work on throughout the term.

I wasn’t happy with this. Firstly, I came to school to be taught information, not to give private information about myself to a teacher who didn’t know me. ‘Me’ was none of her business. And secondly, I had no idea what she wanted. This project was incredibly vague. ‘Me’ is such a huge topic – there were all kinds of aspects about myself, and I had no idea where to start or what she wanted. So I simply didn’t do it.

Each week, in the English lessons, the teacher would ask how people were getting along, and they’d show her what they’d done. She would set aside time in the English lessons for us to get on with our projects – but she was always so vague and didn’t say we definitely had to spend the time doing it, so I simply didn’t. She would come along and ask me how I was coming along with my project, and I would tell her that I hadn’t started it yet because I was busy. She was understanding at first (after all, I’d just started a new school, so had lots of catching up to do) and then got a little impatient. But she never actually told me directly that I had to do it, or gave a deadline or anything. So I simply didn’t do it.

Then, in the middle of the term, when everyone was still doing their ‘Me’ projects, she gave us another piece of work. Two simultaneous pieces of work was very confusing to me! But the new assignment was a bit clearer. We had to write a short story, entitled ‘The Mask’. And we were given a deadline. The teacher gave us lots of different examples of the kinds of social masks people could wear – it could be a literal mask or a figurative mask, she told us. She was very much one for giving us as much freedom as possible, but this confused me. I needed to know exactly what I had to do. After she’d spent the lesson talking about this assignment, she asked if we had any questions.

I put up my hand. ‘I don’t understand what we have to write about.’

Her smile faded and she said ‘I don’t know what to say. I’ve just been spending the whole lesson telling you.’

‘Is it that the story is about a person who is pretending to be something she is not?’ I asked. She hadn’t actually said this – all she’d done was give examples of masks – and so I needed the assignment question clarified, in these specific words.

‘Yes, it can be,’ she said, looking relieved. ‘See, you do understand it.’

I focused my energy on this assignment. We didn’t have exercise books for English, so I wrote the story on A4 paper. This was in the days before computers were the norm, so I handwrote it, in my best fountain pen, with a calligraphy nib. I created covers for the story, made out of coloured paper, with the words ‘THE MASK’ cut out and stuck on.

I still have this story, all these years later. It reads pretty much as an Enid Blyton story. Although the plot was my own, it used the techniques, ideas and style of Enid Blyton, who was my favourite author in my childhood. I hadn’t deliberately based the story on her writing – it just happened, because she was the author I read a lot of. This also meant that my grammar and spelling was perfect, because I observed grammar and spelling from what I read, and learnt the patterns. My story was old-fashioned, and out-of-place next to the other girls’ stories of unfaithful boyfriends and teens with self-esteem problems. It was about a girl in a boarding school who stole pretty things because she had no money, and pretended to agree with everyone because she wanted them all to like her. There was a strong moral at the end, just like in Enid Blyton books.

Although old-fashioned and out-of-place, with a rather archaic style, it was a very good story for a 13-year-old to have written. I got an A. The teacher’s comments were ‘Marvellous: a story that ideally illustrates the title; extremely well written with a wide vocabulary; and beautifully presented. What more could a teacher want?!’

Now, as I write about this, I realise there are all kinds of things I could use from this story to illustrate aspects of Aspergers. I could talk about how people on the autistic spectrum are more comfortable with structure, or how we need assignments and expectations to be explained in a direct and specific way. I could talk about how role changes (such as when a teacher acts more as a chum than a teacher to the class) can be disorientating and unpleasant. But I was actually intending to use this story to illustrate something completely different – that is, the problems with organisation that people on the spectrum often have.

Later on in that term at school, there was a parents’ evening. My mother went to it, and she told me afterwards about her conversation with the English teacher. Apparently the English teacher had told my mother that she was finding it hard to figure me out. When I hadn’t handed in any work for the project, she had assumed I must be lazy. And then I’d handed in a story which totally astonished her. She raved to my mother about how good the story was, and also how much work I’d clearly put into it to make it nicely presented.

I have found, over the years, that this is a common reaction people have to me. When I don’t know what to do and thus don’t do anything or appear confused, people think I’m lazy or stupid – and then when I know what to do and do it, they are amazed at how good it is and how much work I’ve put into it. Then they don’t know what to do with their previous assumption about me being lazy and stupid, because the new evidence contradicts this. People see me as two extremes, and find it very hard to figure me out.

So I decided it might be helpful to explain it, from my perspective. I am not lazy. I am not stupid. However, my brain has a lot of difficulty making overall sense of something unless it explained clearly and specifically, and furthermore, if it is a huge task, requiring many different things, it’s as if my brain freezes.

One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload. So, for instance, when I saw I had to do a project about ‘me’, I saw in my mind every aspect of myself, every moment of my life, and I knew it was impossible to cover all this, and so I got overwhelmed by it and switched off my mind from it.

Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.

Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.

I’m now going to give the very different example of tidying my house. Actually, it was this example of tidying my house that first prompted me to write this entry. Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.

I have tried telling myself I will tidy one room, or one corner of a room, or one drawer, but whenever I do this, I seem to get stuck on certain objects, not knowing what to do with them or whether I need to keep them, not really wanting them but afraid to throw them out in case I need them, not having the prioritisation powers to know if something is important or not. So I frequently find myself sitting on my floor surrounded by stuff, feeling helpless and overwhelmed.

People generally think I’m lazy with regard to my house. I’ve been told that if I really wanted to tidy it, I would. I’ve been told that it’s easy and that there’s no reason why I can’t keep it tidy other than bone idleness. I find these assumptions frustrating. I know I’m not lazy. I know I will work on something for hours and hours, forgetting to eat, forgetting to sleep, paying attention to every little detail, if I know what I’d doing. But the messiness of my house somehow communicates to people that I’m lazy, in the same way as my not doing the ‘Me’ project communicated to my English teacher that I was lazy. These assumptions used to make me angry, but now I’ve pretty much accepted them as inevitable. People assume other people are like themselves. Even if you explain how your mind works to someone, if they haven’t experienced it personally, they never really get it. I think a particular difficulty with this house tidying thing is that many people have difficulty keeping their house tidy, so their reaction to my difficulties is ‘Me too!’ – with an added assumption that what works for them will work for me.

I have put a lot of time and effort into trying to find strategies to help me organise my life and tidy my house. It’s an ongoing struggle and causes a lot of frustration and unhappiness, because I’m atually very highly motivated in many ways, and so it makes no sense to me that I can want something so much, be able to intricately plan ways to achieve it, know that I have the intelligence and diligence to achieve it, but somehow be unable to make myself do it. In fact, I can sort of understand why people say I can’t really want it, even though this is not the case, because there doesn’t seem to be a logical explanation.

But there is one strategy that does work for me, when I employ it (actually making myself put it into action is another struggle!). And that is what I call the ‘ten things’ strategy. Rather than saying I will tidy a certain part of my house, I tell myself I will pick up ten things – these may be things to throw away or recycle or put away, but the point is that I pick them up and do with them what needs doing. Because the ‘ten things’ are unspecified, I can avoid things that I am unsure about. There is also no need to prioritise or sequence –  I can pick up whatever I want in whatever order I want. The only thing I have to focus on is the number ten. So I am collecting ten things – and it’s fun to work towards a number. Once I’ve done the ten things, the aim is to do ten lots of ten things – so 100 things. Again, there is a number to aim towards, and the things can be as small and varied as I like – a scrap of paper on the floor to put in the bin, a cup in the draining rack to put away, a bottle to put in my recycle box.

In some ways it seems like cheating when I avoid the more confusing things that I don’t know what to do with – but I find that the more small things I deal with, the less cluttered and overwhelming my house becomes, and then the easier it is to focus on bigger things. It occurs to me that this ‘ten things’ method could be applied to all sorts of things, and could be used with children on the autistic spectrum who are overwhelmed when told to tidy their bedroom, for instance. It can also be used by people who are not on the autistic spectrum, if it is helpful.

Anyway, I used this method today, which is what prompted this entry. I picked up ten lots of ten things downstairs and ten lots of ten things upstairs, and then fifty more things – so 250 things altogether. My house is still a mess, but not so much of a mess as it was. If I could use this method every day for a week, it will be interesting to see how tidy my house becomes.

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.

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.

Auditory processing issues (part 2)

I remember at four years old, when I’d just started school, my mother was asking me about what I did at school. As my mind stores every detail, I couldn’t begin to answer such a question, as there were far too many things to describe, so I said crossly ‘I don’t know’. She said ‘You must know – have you forgotten already?’ and I said no, and tried to explain that there were too many things. So she tried to narrow it down by asking me what I do first. I said it’s different every day, so she then asked me ‘What does Monday start with?’

Here was finally a specific question that made sense to me! ‘A “muh”!’ I declared.

‘Ah, you know your letters,’ said my mother, sounding surprised and pleased. ‘What does Tuesday begin with?’

‘A “cuh”!’ I said.

My mother frowned. ‘Listen to me,’ she said. ‘Tuesday.’ She said it very slowly.

‘A “cuh”,’ I said, and then added for emphasis: ‘Not a kicking “kuh” though.’

‘If it began with a “cuh” it would be “Cuesday”. Do you say “Cuesday”?’ asked my mother.

I remember thinking she must be incredibly stupid! ‘No, because it’s “cuh” “huh”, which makes “chuh”.’

There was a silence, and then my mother said ‘Oooooh! How funny! Yes, it does sound like “chuh”, but it’s not really.’ She went on to explain, but I stopped listening because I thought she was talking nonsense. The way she said it (and the way many Brits say it) was ‘Choose-day’.  I also said ‘Choose-day’ until I saw it written down and realised it was a ‘t’ and a ‘y’ together, so I altered my pronunciation accordingly. Altering my pronunciation according to spelling is probably one reason I developed an accent that was ‘posher’ than my family or my peers!

I wrote a while ago about auditory processing difficulties in Asperger Syndrome (here is the entry) and the specific difficulties of understanding accents, but, as the above example illustrates, there are in fact many other aspects of spoken language that make words vary. The same word, or sound, will be pronounced differently in different contexts, dependent on all kinds of different things. Tiredness, enthusiasm, formality, etc., can all alter the way a person pronounced a certain word – as can emphasis. For instance the vowel sound in the word ‘to’ is different in these two sentences:

  • ‘I’m going to go swimming’
  • ‘The train is going to London, not from London’

(Say them aloud, and you’ll see.)

People alter words and sounds for speed and ease of speech. There is a process called ‘assimilation’, by which a person will change a speech sound according to which sound is following it – so handbag is often pronounced hambag, as the m is in the same place in the mouth as the b is. And Roman Catholic is often pronounced Romang Catholic, because the tongue position in making the ng sound is in the same place in the mouth as the c sound.

Most people don’t even notice such things. The ‘normal’ brain filters out the unnecessary and attends to the relevant, whereas the autistic brain lacks this filter and attends to everything, having to use conscious intellect to decide what is important.

Hence, the majority of people have not even noticed or cared about something that bothered me tremendously as a child – the fact that the a sound in bat is different from the a sound in bad. This is something that is taught in university phonetics classes and people learn to become aware of it if they are studying about it – but they don’t need to be aware of it if they are not studying it, because it isn’t necessary for communication.

However, for myself, as a small child trying to find the patterns to language, I noticed it and became most confused and distressed that I’d been told the same sound was in ‘bat’ and ‘bad’, when I could hear they were different and feel they were different when I said them. Furthermore, my mother wouldn’t believe me when at six years old I told her vehemently that they were two different sounds, so my sense of reality got confused, and I wondered if I was pronouncing them wrong.

I clearly remember the day when this confusion was cleared up.  I was 22, studying in Canada and working at the university photocopy shop. One day I was photocopying a customer’s lecture notes on phonetics, and as I placed the papers down on the photocopier, I saw a paragraph about the ‘a’ in ‘bat’ and ‘bad’ being different. It explained that although both words contain an ‘a’ sound, the ‘a’ is actually longer in the word ‘bad’, but that this isn’t a difference that is acknowledged as significant, in the way that the difference between the ‘i’ in ‘bid’ and the ‘ee’ in ‘bead’ is.

I rushed to show a colleague, who was photocopying something on the colour copier, telling her with great excitement how interesting this was. She didn’t share my interest. My customer said to me when I handed her the photocopy ‘Were you actually reading those boring notes?’ ‘Yes, they’re really interesting!’ I said with enthusiasm, to which she replied ‘You’re mad!’ To her they were boring lecture notes, but to me they validated something I’d noticed as a child but that no one had ever seemed to notice. They spelt out something that I would have liked spelt out when I was five.

So, being hyperaware (if that is a word) of all the minute differences in the same speech sound can actually be just as much of a problem as being unaware of differences between different speech sounds.

I study speech and language therapy at the moment, and there is a lot of emphasis on helping children who have the opposite problem of not being able to distinguish between different speech sounds. For instance, if a child isn’t aware of a difference between the sounds c and g, he also won’t be able pronounce the two as separate sounds. So his speech will be difficult to understand, because, for instance, he will say the two different words girl and curl in the same way, so you won’t know which word he is using.

I have not observed a similar emphasis on the opposite problem of hyperawareness of all the variations one speech sound can take – perhaps because it doesn’t result in speech problems, so is less obvious. But hyper-awareness of all the variations of sounds leads to difficulty generalising. People on the autistic spectrum have difficulty with generalisation, and it is generalisation that enables a person to know, for instance, that the p in pit is the same phoneme (speech sound) as the p in spit, despite the fact that the former lacks the puff of air that the latter has, and thus sounds more like a b. It is similar generalisation and categorisation abilities that enables a person to know that the b in bit is not the same phoneme as the p in spit, even though it sounds the same.

It is possible to improve at auditory processing, but for someone on the autistic spectrum, who has difficulties generalising, the difficultlies generalising do not go away. They are an intrinsic part of how the autistic brain works. So improving auditory processing is about hearing the same words and sounds used in many contexts and by many speakers, so the brain builds up a sort of collection of the many different ways that a word or sound can be pronounced. There will always be new ways in future, so there will always be potential future confusion, but the more ways are collected, the easier auditory processing becomes.

For myself, where I noticed the biggest difficulties was in learning foreign languages at school. I learnt French and German, and to my teachers’ bemusement, I could read and write with ease to a high level, easily grasping the grammar and learning the vocabulary, but could barely understand the spoken language at all. As an adult I have experimented a little with learning new foreign languages in different ways, to try to see exactly how this auditory processing difficulty works and how it can be helped. I have learnt a few things from this, and will write one more entry on auditory processing where I talk about what I’ve learnt and try to formulate some helpful tips for helping children on the autistic spectrum with auditory processing. However, it’s important to bear in mind that auditory processing disorder is never cured – it’s a matter of finding compensatory strategies.

Overloaded: what it feels like

Right now I’m feeling sensory overload, and my head feels all scrambled. I really do not feel like writing a blog entry – I feel like hiding under my duvet – but it occurred to me that it would be good to try to write about it when I feel like this, because it’s immediate and I can explain what I am feeling. If it’s a bit jumbled, I apologise, but it will hopefully show how my mind works when I feel like this.

The kind of overload I get is not just sensory. It’s also an overload from too much information in general – doing too much, spending too much time with people (and of course ‘too much’ is a relative term, and will be different for each person, and will depend on all sorts).

I’ve spent quite a bit of time with people lately, and right now I’m thinking I do not want to spend any more time with people. So I thought I would like to explain why this is, because often people have a stereotype that people with Aspergers aren’t interested in people, don’t care about people, etc. And this is really not the case. So I will explain.

I find people fascinating. From a very young age, I read novels, because to me they were a great way of understanding people. There is also a stereotype that people with Aspergers don’t read novels, and while this may be true of some people with Aspergers, it is not true of all, and certainly not true of me. To me, people have always been a fascinating puzzle (you know how people depict autism as a missing jigsaw puzzle – well, to me, autistic people are the easiest to understand! It’s the other ‘normal’ kind who are the puzzle!).

The puzzle was much more manageable in novels – there was no sensory overload, no auditory processing issues, no multitasking oftrying to read body language, words, and meaning. Just words on a page. I learnt a great deal about people by reading. As a child and teenager, I didn’t speak much to people – I found them too overwhelming and confusing – but as I reached adulthood, I decided to try getting to know people. I wanted to understand people, and to talk to them and spend time with them. I made myself do this.

And here is the result. I found that being with people could be very rewarding. I could enjoy their company and find them fascinating to talk to. Obviously some I felt more comfortable with than others, and some I felt uncomfortable with. Small talk confuses me. I prefer talk that goes beneath the surface. So with people I know a bit better and can talk about more meaningful things with, then I feel more comfortable. But at the same time, being with people is extraordinarily exhausting.

If I don’t know the people well, then the unsureness of what to say and how they are interpreting me, and the attempts to analyse this, are very tiring. But even if I know people well, and am comfortable with them, being with other people requires an extra layer of awareness that being alone doesn’t. You are always aware of the presence of the other person as well as your own presence. You’re aware of the other person interpreting you, and your effect on the other person. If you are close to the other person, it’s not so much a question of anxiety obout being wrongly interpreted, but more simply a multi-tasking thing. It’s so much easier to have no other person to keep track of in my mind. When it’s just me, I can lose myself in whatever I’m doing.

So, while I enjoy the company of others, I also need a great deal of time alone.

Some other things that affect me are weather, diet, and exercise. While sitting out in the sun can be nice for a while, it leaves me exhausted afterwards. As for diet, all kinds of things affect me badly – processed food, caffeine, sometimes wheat. Exercise is a difficult balance – the right amount gives me more energy, but a bit too zaps all my energy. Another factor which applies to females is the menstrual cycle. I understand that one is not supposed to talk about such things, but quite frankly, I think it could be useful to talk about this, in case others are affected in the same way. In general, for all women, not just those on the spectrum, PMS causes the body to be more sensitive to sensory stuff, and more fatigued, and also causes an inner feeling of mental tension. For someone on the spectrum who already has sensory sensitivities, is easily fatigued, and also easily feels mental tension, then this time of the month can be quite disabling.

Right now I have PMS and I have also been out in the sun for a walk with other people, and have in the past few days spent quite a bit of time with other people (whose company I enjoy). The effect on me right now is as follows: My head feels like it’s all over the place. I am finding it hard to concentrate and I feel hot and prickly and unsettled. I am sitting on my bed, but a while back when I was standing up and on the phone, I was pacing back and forth, feeling a strange unsettled feeling. I want to shut my eyes and stop writing this. The laptop is hot on my lap, and my neck aches and my eyes ache and I half want to scream and half want to hide under my duvet. I can’t tell if my body wants sensory stimulation or lack of it. I felt the need to turn on music (which I don’t like to do very often) but as soon as I was listening to my favourite music, I realised my body was at a heightened intolerance to it – the music seemed to be prodding my head and somehow intruding uncomfortably into my body. And this is quiet relaxing music.

I am very tired. And hot and cross and not wanting to write this blog post, but not really wanting to go to bed, because I’m not feeling settled, but still my body is heavy and tired and my eyes are closing. I feel dizzy and my tummy hurts – sharp stabbing pains. My mind wants to focus but darts back and fro. My eyes are closing so much I have to sleep right now, but I want to post this. I’m trying to find a way to end the post, to tie up the loose ends and give some good advice, but my mind can’t focus and I’ve lost track of the entry as a whole, and how it began, and I feel too tired and unfocused to read it through.

So this is me in ‘overload’ state. The solution for me, right now, is to go to sleep!

Auditory processing issues (part 1)

At church a couple of Sundays ago, a visiting preacher was talking about how some people only think about God once a week when they go to church. Then he added something that sounded like ‘If you’re tall’.

I spent the next few minutes searching my brain for reasons why a person’s height would make them more likely to go to church and think about God, and then finally realised there were no reasons and that this made no sense at all.

So I then searched for the nearest alternative and wondered if the preacher could have said ‘if at all’. That would make sense in the overall context of what he was saying. And ‘if you’re tall’ and ‘if at all’ sound pretty similar in a non-rhotic English accent, other than the ‘y’ sound. I have a good ear for detail and the preacher had clearly raised his tongue in his mouth after the word ‘if’. But I know that sometimes people’s tongues are not quite in the right place when they say a word – sometimes they were going to say something else and then switched, for instance, or they aren’t paying attention.

So, after my mind had been through that careful analysis, involving many vivid images, from the image of tall people going to church to the image of the phonology lectures at college in which I learnt about how people’s tongues are not necessarily in the expected place for the word they are saying,  I concluded that the preacher must have said ‘if at all’. But by this time I’d missed the next few minutes of what he’d said – which brought to my mind many vivid images of my primary school days and the frustration of trying to listen to a story and missing parts and then having no idea what the story was about.

‘Auditory processing disorder’ is something that is recognised as often being part of ASDs, but the concept of auditory processing seems to be still incredibly vague. So much so that I’m not even sure if what I experience actually falls into the diagnositic category of ‘auditory processing disorder’. However, I know it is about processing and not about hearing. As a child, I was suspected of having a hearing impairment and was sent to have my hearing checked, with the results that my hearing was fine. I’ve also had a hearing test a couple of years ago, and it’s still fine. However, the fact remains that understanding what people are saying requires a great deal of concentration from me.

So I’m going to try to explain exactly what I experience when I am listening to someone speak, and how this has developed over the years.

One thing I’m aware of is that if I don’t concentrate when a person is talking, all I hear is their accent, which I automatically analyse in great detail in my mind. I find myself subvocalising sounds they make, in order to get a sense of how the sounds they use correspond with the sounds I use. That is, I repeat words they say, but silently, trying to keep my mouth closed (so that people don’t think me weird!). My tongue moves around trying to get a sense of how they say the word. Not for every word they say, but only if it’s a word spoken in a way I find unusual in accent, stress or intonation.

If am alone with the TV on, and similarly not concentrating, I repeat the words I hear on TV out loud, because I have no reason to hide my behaviour when alone. I believe this behaviour would be classified as ‘echolalia’, which is sometimes seen as meaningless repetition, but for me it has the useful purpose of enabling me to process how words can sound in different accents. Feeling the sounds in my mouth helps me to map the sounds onto the sounds I use, and to thus make links between what I hear and what it means.

As a child, I was taught the alphabet phonically. I learnt ah, buh, cuh, duh, eh, fuh, guh, etc. I learnt an exact sound for each letter. I also learnt how the sounds could be changed by the ‘magic e’ – so that ‘bit’ becomes ‘bite’. I learnt how each word was pronounced by listening and repeating. I learnt how different letter combinations produce different sounds. I learnt everything exactly and precisely.

I became an advanced reader for my age – I had a reading age of 12 when I was 6. But reading was easy compared with listening, because written words are consistent. Spelling rules may be inconsistent, but as long as you learn the correct spelling for each word then you will always recognise that word when it is in print. However, the same cannot be said for words that are spoken.

I shall illustrate what I mean. At four years old, I had a plastic doll with a string attached to her. I pulled the string and she said something that I didn’t understand.  I listened again and again and decided she must be saying ‘Excuse me, I’m pridable’. I had never heard the word ‘pridable’ but it made sense as a word, because I knew ‘pride’ was a word, and I observed ‘able’ being added to words in general.

One day I used the word ‘pridable’, and my mother informed me that it wasn’t a word. I told her that my doll said it. I got my doll to prove it and I pulled the string and the doll spoke.

‘She says “Carry me, I’m portable,”‘ said my mother.

‘No she doesn’t,’ I pulled her string again.  ‘There is a “ruh” and a “duh”. It’s “pridable.”‘

‘She has an American accent,’ said my mother. ‘Americans say it like that.’

This was the most ridiculous thing I’d ever heard. I didn’t even know what an American was, but why on earth would anyone change a ‘t’ to a ‘d’, or add an ‘r’ that wasn’t there? So I simply disbelieved my mother. Besides, I’d never heard the word ‘portable’ before, and it sounded like far too difficult a word for a little doll to say. I didn’t know the word ‘portable’, so how could my doll possibly know it? And how could my doll have an American accent when I’d never heard of America?

The trouble with learning the sounds of your language is that you learn them in a specific accent. As soon as someone with a different accent speaks, many of the sounds change, so you are hearing a different word. This is where ‘top down processing’ helps people – they get an overall sense of what is being said and then fill in the details as they go along. But if you work from ‘bottom up’, focusing first on the details, you easily get lost. And this is where it’s harder for children on the autistic spectrum. Even when someone speaks in the same accent as you, they will not always be consistent in their pronunciation of different sounds.

People often talk about lines from songs that they misheard as a child. Songs lyrics are misheard because children don’t yet have a wide enough understanding of the world, or of language, to understand what is being said, so they approximate to something that makes sense to them. Also, songs don’t have the same rhythm and context as speech – the lyrics follow the rhythm of the music, and lack the environmental context that a conversation has. So understanding spoken language is not just about hearing the details of the sounds – it’s about linking what you hear to world knowledge and context.

While an adult on the autistic spectrum may have an in-depth understanding of the world, the ‘top-down’ linking of everything they hear to this world knowledge simply doesn’t happen automatically, because we process things from ‘bottom up’ – from the details. Similarly, the top-down linking to context doesn’t happen automatically. For instance, in context, obviously the preacher was saying ‘if at all’ rather than ‘if you’re tall’, but my brain latched onto the details of the sounds, and only upon conscious analysis did it occur to me to find a more suitable meaning.

Despite the fact (or perhaps because of it) that I found accents such a challenge, I became aware of and fascinated by the existence of accents quite early as a child. By repeating them, I got a sense of how they worked and how their sounds corresponded with my sounds, but it always required an effort, and sometimes I had to repeat something many times before I understood what word it was supposed to be.

At eleven years old I devised a list of all the ways that different people pronounced my name, which is Gail. My Grandad, who had a Northern Irish accent, said is as ‘Geeyul’. My Nana, who had a Yorkshire accent, used a vowel that sounded like ‘air’ (remember that the ‘r’ is unspoken in an English accent, so she didn’t add a consonant). My maths teacher, who was Welsh, said my name in a way that made it only have one syllable, because she didn’t use a syllabic dark ‘l’.

I used to get very confused as to how many syllables my name had, because it was different depending on who said it. Sometimes there was a definite ‘y’ in there (gai-yull) and there were two distinct syllables. Sometimes it seemed to be not quite two syllables, but more than one. And other times, when spoken by Welsh people, it definitely only had one syllable.

So, if my short simple name caused me so much confusion, and required such analysis, you can imagine how confused I got by spoken language as a whole, and how much effort went into analysing the sounds of various accents. As an adult, because of all this analysis, I can map the phoneme structure of many accents in my mind, but even so, I have to concentrate to hear the meaning of what people are saying, and it is easy to lose the thread of what someone is saying if there are many distractions or if it is complicated. When I watch DVDs I always activate the subtitles, because seeing the words written down is an enormous help in processing. Unfortunately, though, real life doesn’t come with subtitles, so it requires immense concentration!

Messy things out there: the need for closure

In recent years, the term ‘closure’ has become popular. People want closure after a painful breakup with a partner, for instance. That seems to be the situation in which the term is used most often.

I can strongly identify with the concept of desire for closure – but for me, I seem to want closure in situations that other people wouldn’t think twice about mentally dismissing. The desire for closure thus seems heightened in me. I will give some examples of situations in which I find myself needing closure:

  • When someone snaps at me: I find myself then confused with this person, and wary of them, unless they explicitly explain that they’re in a bad mood and they didn’t mean to snap
  • When someone is rude to me: I find myself confused as to why the person doesn’t like me and it feels like something is ‘undone’ and needs doing up
  • When I start several projects that will take a while: although I like starting projects, I find myself overwhelmed, because these projects are all ‘open’ and on display in my mind, rather than neatly tied up

I think, with projects, part of the need for closure lies in the fact that I can only focus on one thing at a time. So if I have more than one unfinished project, then when I am focusing on one of them the others disappear from my awareness, but I know that there are unfinished, messy things ‘out there’.

Maybe with people it’s also to do with only being able to focus on one thing at a time – because if a person has snapped at me or been rude to me, but is at other times polite to me, then there is ambiguity, and there seems to be something unfinished – something I don’t understand – which is another ‘messy thing out there’.

For instance, yesterday my neighbour seemed to get a bit annoyed with me. I don’t know for certain if she was annoyed, but when I analysed the words she said to me, it seemed like she was. This confused me, because I normally get on fine with her. From observing people in general, I observe that people do often get a little annoyed with each other, and then it passes, and they don’t see it as a big deal. So I know in theory that this is normal. But in practice, I am confused, because I can’t judge exactly why my neighbour wanted to express annoyance with me, and whether it will go away or increase, and whether there might be other things that she was annoyed about but didn’t say, or whether actually she was just in a bad mood and it had little to do with me. So I feel uncertainty now about my neighbour. She is now unpredictable.

So, to use my analogy of my mind being like a library, with a desk on which only one book can be open at a time , I can’t simply close the book that is my neighbour, and put her back in into the shelf she sits on, as a closed book, all neatly filed and ready to take out when I see her. It’s like she is open, and no longer fits in, because she’s changed, and there might be something wrong. Logically, I know that most probably there isn’t anything wrong, but still, the possibility is in my mind, because her behaviour wasn’t quite the same as usual. So she is a book, left open – a ‘messy thing out there’.

Obviously life involves many ‘messy things out there’. There are always tasks to be done – if I wash my dishes today, I know that I will have to wash them again tomorrow, for instance, so there is never any closure on washing dishes! And of course, in any relationship, whether with friends, neighbours or colleagues, people get annoyed with each other sometimes. In theory, I can analyse this and know it’s normal, but there is part of me that finds it very difficult – the feeling of being in the middle of unfinished and confusing things.

Perhaps this is also because being on the autistic spectrum involves what is known as ‘weak central coherence’ – a difficulty with seeing and making sense of the ‘big picture’. If you can understand life in terms of the big picture, then the small details are less important, and closure is only seen as necessary for things that fall into the ‘big picture’ category. But if you can only make sense of the world by seeing the details and building up from them to eventually see the big picture, then the details are incredibly important, becuase they are the building blocks on which understanding is formed. If you are confused by a detail, then you are confused overall.

Sensory differences – both good & bad

The concept that my experiences of sensory things are different from other people’s is one that simply never occurred to me until I started reading about Aspergers. In the same way that one assumes that, for instance, everyone sees the same colour for what they call yellow, I assumed my senses were the same as everyone else’s.

I have vivid memories of being in department stores and supermarkets as a child, with my family. I would feel a horrible feeling, which became worse and worse and I would then sit down on the floor because it was uncomfortable to stay standing, and I would scream that I wanted to go home. My mother would get angry with me because she thought I was throwing a tantrum out of boredom or impatience. I would say I didn’t feel well and she didn’t believe me, because I didn’t have a fever or look ill in any way.

I had no way of being able to explain sensory overload, and people weren’t aware of such a thing back then. What I was feeling was a sense of being overwhelmed by noises, lights, too many things around me, not having any sense of where I was going or what I was doing, and a dizziness that made it hard to stay standing. I can explain this in retrospect, and I also know in retrospect that the fluorescent lights affect my vestibular system and make me dizzy. As a teenager and adult, there were many experiences in supermarkets where I would become dizzy and start blacking out and have to sit down.

I also have vivid memories of loving to have my back tickled gently. I think it started when my mother did it once, when I was about four, and then I told her to keep doing it, and every evening I wanted her to do it. She wouldn’t always do it, so I tried to get other people to do it. When I started school, I would ask anyone and everyone in my class to tickle my back. Some did it once, but most stopped after a couple of minutes. One girl would do it whenever I asked, for as long as I wanted, until eventually she would say ‘Can I stop now? My arm is tired.’ I would reluctantly let her stop.

However, her tickling sessions were brought to an abrupt end one day.  One day in assembly, as she had her hand on my back, tickling away, the head mistress said in a loud, horrified, angry voice: ‘Stop that at once.’ I remember I had no idea that she was talking to us or what she was talking about, but the head mistress then said ‘You know what I’m talking about!’ I didn’t have any idea, but I guess the girl who was tickling my back knew, because she stopped.

As my younger sisters grew older, I would get them to tickle my back, and I would sometimes give them my toys and pocket money in exchange for a tickle. I remember, once when I was six, my mother was tickling my back and I didn’t want her to stop, and she said jokily ‘I need to get a machine that tickles your back forever.’ I didn’t realise this was a joke, and I thought it was a wonderful idea. To me the experience had nothing to do with any kind of intimacy (I imagine in retrospect that the head mistress thought that it was something sexual – that I and the other girl were engaging in lesbian activities at the age of four!). Whether it was a machine or a person would have made no difference. I just loved the feeling on my back.

I give the two very different examples of supermarkets and back tickling to illustrate how, as Donna Williams says, the sensory issues of autism can either be like a private heaven or a hell. This is definitely true of me. Sensory sensitivity can either be overwhelmingly awful, or utterly amazing.

Another example of a good sensory experience is the feeling of sand – lying on sand, pushing my hands and feet into the sand, feeling it’s pressure and it’s fluidity. I have a photo of myself as a child in which you can see how much I enjoyed this.

Whereas normally I would get bored if I had nothing specific to do, I could lie for ages on the sand, just enjoying the feel of my body against it.

An example of a negative sensory experience is bright light. In the next picture, my sisters and I were having our photo taken with our dad, and the sun was in our eyes. This is an unpleasant experience for everyone, but, rather than shielding my eyes or looking away as my sisters did, I became overwhelmed and held up my arms, not knowing what to do. You can see me on the far left, with my arms raised up and my hands stiffened. Somehow my instinct is to push away the light, as if it’s something physical, because it feels like it’s intruding on me, so my arms create a barrier around me. It’s the same even now if there is a flash of bright light or a loud unexpected noise. I know it is illogical, but it is how my body reacts, because it doesn’t integrate the senses very well and have an instinctive sense of what to do.

As an adult, since I have read a lot about Aspergers and difficulties with sensory integration, I have some strategies in place to help. For instance, I have Irlen tints on my glasses, which are very soothing and stop light being so intrusive. I wear a cap to limit how much I see, and to shield my eyes a little from light. The more overwhelmed I am, the more I push down my cap, so my field of vision is smaller, and so there are fewer things to overwhelm and distract me. When I go into a supermarket, I make sure to go through it very quickly, and I try to be aware of my dizziness levels, and if necessary to pay for my groceries and leave before I’ve picked up all I planned to buy. I have some groceries delivered, to save trips to the supermarket. I make sure to have at least one day a week where I stay at home and rest. I am aware that I’m a lot more sensitive to sensory stimuli when I’m tired, so I make sure to have enough sleep. All these things help reduce unpleasant sensory experiences.

I also find ways to create good sensory experiences – not only because they feel good, but because they help with sensory integration in general and they help to reduce the discomfort of unpleasant sensory experiences. I have massages and also I have cranial osteopathy. I also used to go to a flotation tank where I used to live, but there isn’t one where I live now. All these things are quite expensive, so I have to budget and I can’t do them as often as I’d like. As a cheaper alternative, I buy aromatherapy oils and massage myself. I also burn my aromatherapy oils in an oil burner, because I love certain smells, especially the smell of lavender. As a child I used to pick lavendar all the time and put it in a bag and spend a lot of time smelling it.  It’s a lot more convenient as a smell in the air from an oil burner.

I have realised that I like a slight pressure all over my body – in the same way that Temple Grandin likes a ‘squeeze machine’. So I tuck my duvet into my bed very tight (you can also get weighted blankets, but that is expensive and I don’t have much money, so I tuck in my duvet as an alternative way to exert pressure on my body). Somehow it is calming. It also makes me more aware of my body boundaries – where my body is in space. A common aspect of Aspergers is poor proprioception – difficulty perceiving exactly where one’s body is and where the boundaries are.  I also like to wear clothes that exert a gentle pressure which is the same all over, rather than some parts that are tighter. I really like to wear soft tights or leggings – and I make sure to get a size too big for me, so they aren’t uncomfortably tight.

I could say a lot more about sensory issues, as they affect me quite a lot, but this is just a general introduction, giving some examples to give a sense of what it’s like and the variety of sensory experiences one can have. I will write more entries on sensory issues in future.

‘Do I look fat in this?’ Truth, lies and codes

As a child I became aware of the following facts:

  1. that I don’t lie
  2. that not lying is considered a good thing that people should attain to
  3. that the reason I don’t lie has nothing to do with wanting to be good
  4. that I don’t lie because it feels uncomfortable and confusing if I do, so my reasons are self-serving
  5. that people who say not lying is a good thing don’t act as if they believe this

Let me give an example. When I was 14 and my sisters were 12 and 10, we would watch certain TV shows that our mother had told us not to watch. My sisters would lie to her and tell her they hadn’t watched them. I would be truthful and tell her that I had watched them. I was the one with whom my mother got angry, despite the fact that I’d done the supposedly ‘good’ thing and told the truth.

But I was well aware that the reason I told her wasn’t for her benefit, nor for any abstract idea of goodness. It was more that I felt that if I said something that wasn’t true, I’d be compromising myself. Somehow I’d lose my intactness, my sense of self, my sense of reality. Telling the truth is easy and natural. Telling a lie is like turning myself inside out.

I realised that my mother didn’t really want us to tell the truth, if the truth wasn’t something she liked. I knew in theory that lying was the preferred thing. But it had nothing to do with what others said they wanted or really wanted. It was for my own benefit.

Back then, I didn’t know I had Aspergers, so I didn’t have a frame of reference to understand these facts I’d observed. They were just random odd facts about lying and myself. Now I know that telling the truth is a typical trait of people on the autistic spectrum. In trying to analyse this in terms of what I understand about the autistic spectrum, and what is going through my mind that stops me lying, I have come to the following conclusion: it’s about difficulty multitasking. In the same way that I want to correct people if they state something that isn’t true, I also don’t like it when someone believes a lie – and if I lie, this causes it to happen.

I have no problem in stating something untrue as a joke, knowing that the other person knows it’s a joke. It’s only when they believe me that I am bothered. I don’t want two contradictory statements to be ‘out there’ – I instinctively find it confusing and distressing.

Sometimes as a child I would say something untrue, assuming that the other person would know it was untrue and that they would say ‘That’s not true’ – but sometimes they believed me, in which case I would immediately say ‘Not really!’ When I realised people could believe things that weren’t true, I would sometimes test this to see what sort of thing they would believe, but it was always as a sort of experiment to help me understand. If they believed it, I would always say at once ‘Not really’, because I would have found it very disturbing if they’d actually believed it. I just wanted to know if it was possible that they could.

An example of this is when I was six years old and I’d just gone to bed, and was lying there waiting for my mother to come and say good night to me. I’d just farted and so my bed smelt like fart! When my mother came over to my bed, she made a face and said I’d farted. I said ‘No I haven’t’. I said this because I was aware that she had no proof that I’d farted other than a smell, and that I was the only one who’d been able to feel the fart and therefore know for definite that it came from me. So I was curious if she would believe her lack of definite proof over my definite ability to know if I’d farted.

She didn’t believe me at first. I found it quite fascinating so I kept denying having farted, in a serious voice, and I pointed out to her that she couldn’t know I’d farted because she couldn’t feel it. I was the one who would have felt it coming out of my bottom, so I must know. Eventually she believed me and apologised for disbelieving. At that point I grinned and told her that I had farted really!

She was angry that I’d lied – and she wanted to know why I’d lied, when there was nothing wrong with farting and she wouldn’t have punished me for it. I had no way of explaining why I’d lied – only in retrospect can I put it into words. But I was aware then that she didn’t really want me to tell the truth after she’d believed a lie – that she’d have been happier if I’d continued to pretend I hadn’t farted. But I was also aware that I wouldn’t have been able to do that. It was an odd conundrum to me, as I tried to understand other people and myself.

As an adult, I have made myself analyse social interaction in great detail and I realise there are some situations where lying is considered the polite and considerate thing to do. In fact often it isn’t really lying as such – as in it’s not truly deceiving people – because there is a shared unspoken understanding that lying is what people do in such situations. So it’s more a code. A code in which telling the truth may mean ‘I don’t care about your feelings’ and telling a lie means ‘I care about your feelings’, and the actual thing being discussed isn’t really what’s being discussed at all.

For instance:

  • Do I look fat in this?’ is code for:I am feeling insecure about the way I look, because I see my sense of beauty and worth as having a negative correlation with my size, and I would like you to reassure me that I don’t look fat even if I do.’
  • Yes, you look fat,’ is code for: I don’t care about your feelings or reassuring you. I know what you want me to say, but I refuse – instead I am deliberately saying something insulting which I know will hurt you.’
  • No, you don’t look fat at all,’ is code for: I care about you and your feelings, and I want you to be happy in yourself, and I want you to know that I am a nice person and I care about you and I care about our friendship.’

This is where people on the autistic spectrum are at a great disadvantage, because we don’t automatically understand these hidden codes, as they are never explicitly explained, so, in focusing on literal ‘truthful’ meaning, we are oblivious to how what we are saying is being decoded. Furthermore, we may not even see ‘fat’ as a bad thing – just a description of a shape, like round or square, with no emotive value. Saying that someone looks fat may just be the same as being shown a picture of a circle and asked if it is a circle or a square. We automatically look for the right answer, and the idea that someone will be offended at being told they look fat can seem as bizarre as a circle being offended at being told it’s a circle and not a square.

People on the autistic spectrum may learn the social codes and conventions, but they don’t come naturally, so we don’t automatically think of them – it requires being alert, focused and consciously trying to remember. So, while I have taught myself by observation and analysis many different examples of situations where the truth is unwanted, because a certain ‘code’ is going on, I still may not immediately remember this in the situation when it occurs – I will automatically process the literal meaning and if I don’t remember to pause and think of other meanings, I may remain at the literal meaning and say the wrong thing.

An example of this can be seen in the sitcom The Big Bang Theory, in the scene where Sheldon, in working out the approximate weight of Penny’s car with both Penny and him in it, makes a guess at Penny’s weight which Penny immediately corrects. Sheldon says ‘Oh sorry, did I insult you? Is your body mass somehow tied into your self worth?’ Clearly he is aware of this idea that people’s self worth can be linked with their size, but he doesn’t automatically take it into consideration because it’s such a bizarre idea to him, quite unrelated to the world of numbers and calculations.

However, the fact that there are social ‘codes’, where saying one thing really means something else, is a very useful thing for people on the spectrum to become aware of. And calling it a ‘code’ is a helpful way to describe it, rather than simply saying ‘people say things they don’t mean for politeness’. The idea of a code is one that can be more easily grasped, because it is more concrete, and often people on the autistic spectrum like codes – I used to have great fun as a child making up all kinds of secret codes. The social ‘codes’ that non-autistic people generally use in society are so engrained that they often aren’t aware that they are using a code – it’s just automatic. But it is not automatic for a person on the autistic spectrum, so it has to be spelt out.