Flexibility and ‘common sense’

In looking at the topic of rigidity of mind in people on the autistic spectrum, Temple Grandin gives the following example:

I heard about a case where an autistic boy had a severe injury but he did not leave the school bus stop to get help. He had been taught to stay at the bus stop so that he would not miss the bus; he could not break that rule. Common sense would have told most people that getting help for a severe injury would be more important than missing the bus. But not to this young man.
(The Way I See It, p. 37)

This immediately rang bells of recognition in my mind. When I was five years old, my class teacher at school would sit on a chair at the front of the class while we were getting on with our work, and we had to line up in front of her chair to ask her anything. As I’ve mentioned before, when I was a young child I wouldn’t realise I needed the toilet until I was totally busting. I remember realising I was busting for the loo, and getting up to queue up behind the other children who were waiting to ask the teacher something, so that I could ask the teacher if I could go to the toilet. After a little while, I couldn’t hold it in any longer, and I’d made a little puddle on the floor.

The teacher leapt up to deal with this, and asked me why I hadn’t told her I needed to go for a wee. I told her in bemusement that I’d been queuing up to tell her. She tried to explain to me that when I am busting for a wee, I do not need to queue up – I can then just call out and ask her, or even just get up and go to the toilet without asking. My mind couldn’t compute this at all. She’d always told us that we need to queue up to ask her anything and that we weren’t allowed to shout out or leave the classroom. And if I left the classroom, how would she know whether it was to go to the toilet or to run off?  (Another situation where, in retrospect, coloured tickets would have been handy! I could have waved a blue ticket whenever I needed the loo!)

I remember a similar situation when I was six. I was queuing up to ask the teacher I didn’t feel well. As I stood in line, I realised I felt even worst standing up than sitting down. It was hard to stay standing. I felt dizzy and shaky and was seeing black spots. I wanted to inform the teacher of this right away, but I knew I wasn’t allowed to shout out, and that I had to wait my turn. Suddenly my legs gave way and I heard myself make a strange groaning noise, and I ended up in a crumpled heap on the floor. The teacher leapt up and scooped me into her arms and carried me to what I assume was the sick room (I’d never been there before, so it wasn’t familiar to me), and then called my mother to take me home. But what I remember most clearly was how kind and concerned the teacher was. I was expecting her to tell me off, because children were supposed to stand quietly in the queue, not to make a strange noise and fall on the floor. I actually thought I’d done something wrong, because in general I was often getting told off for doing things that weren’t the norm, and which weren’t ill-intentioned.

The issue of ‘common sense’, which Temple Grandin talks about, is an interesting one. You would think it’s common sense to know that if you’re about to wet yourself, or feeling so ill that you’re about to collapse, that it’s okay to see this as an exception to the rule and not remain quietly in the queue. But I had no automatic sense of priorities – I’ve had to work those out by logic over the years. I had no idea that exceptions to rules could happen.

I have often been told I don’t have common sense. But at the same time, in different contexts, I’ve also often been told that I have a lot of common sense. I wonder whether the issue isn’t so much one of common sense, but the ability to switch from one way of thinking to another.

When I’m in common sense mode, my common sense is brilliant. I’ve learnt a lot of common sense from working in care homes – listening to colleagues say aloud their thinking process in making decisions has been brilliant in showing me how thought patterns can work. I’ve learnt through this how important it is to look at different perspectives, and at the potential overall results of various actions. So when I know I need to be thinking of something from a ‘holistic’ view, having the overall result as the priority, then my common sense thinking is great, because that is my focus.

Also, what others call common sense in me is often simply the result of my having analysed something logically, being unconstrained by the conventions of what is ‘normal’. Actually from that angle I’m at an advantage, common-sense-wise, because the ‘normal’ is never ingrained in me to begin with. I think ‘outside the box’ purely from never having been able to find the box, and half the time being unaware that a box even exists! But this way of thinking outside of the normal constraints can also lead to thought processes that are considered lacking in common sense, because I may totally fail to take something quite obvious into consideration. So it can either lead to unusual common sense or unusual lack of common sense!

But going back to learning from other people voicing their thought processes, this has been incredibly useful for me in all kinds of areas. I lived in Canada for a few years, and I find (as a sweeping generalisation!) that Canadians talk about their feelings a lot more than Brits do. For me this was enlightening to hear people put their feelings into words and to explain openly what they are feeling and why. This has been a major contributing factor to my own ability to put my feelings into words. I would hear others do it and I would realise that they had enabled me to understand my own feelings.

In general, people don’t put a lot of their thought processes into words – at least, not into spoken words that they share with others. But for the person on the autistic spectrum, hearing thought processes and feelings being put into words is incredibly helpful, for several reasons:

  • It helps in understanding one’s own thoughts and feelings
  • It helps in understanding of the sorts of priorities it’s important to make
  • It helps in learning how exceptions to rules are reached
  • It helps in understanding how other people think and feel

And so, for parents or teachers of people on the spectrum, I would really recommend saying aloud your thought processes in everyday decision-making, when you are with people on the spectrum.

For me, it’s more helpful when people are explaining something in retrospect, because then the thoughts are all arranged neatly in their brain, and they don’t go off at tangents. So, for instance, you can explain why you decided not to do something you were going to do – explain how you went through the various pros and cons in your mind, and the overall result you considered in making your decision. Here is a possible example:

I’d thought of going to the supermarket yesterday afternoon at 3 o’clock, because I had some free time, but then I remembered that’s the time when the schools are closing and the supermarket gets really busy and crowded with parents and children. I find it puts me in a bad mood to be in a big crowd, and I don’t like to be in a bad mood. And it takes far longer to do any shopping when it’s crowded, so it wastes time. So I decided that going at 7:00pm would be easier and quicker, and I could have a nice relaxing evening, without being stressed from having been in a crowd.

That might seem like a daft example, and unnecessary information to share, but for myself it has been ever so helpful when people have voiced such thought patterns and decisions. It has enabled me to see that plans do not necessarily have to be followed rigidly, and that there are various perspectives to think about. It has taught me to be aware of the overall result – not just (to use this example) the result of getting the shopping, but also the result of how it affects my mood, and my day. I find that when considering getting something done, I do not automatically think of the effect it will have on me as a person, so I can be so focused on getting something done that I forget to eat or sleep. I see this not so much as lacking common sense, but lacking the flexibility of thought to remember to look at the overall effect of something on me as a whole person (eg. the ability to stand back and say: yes, I want to get this done, but is it more important than my health?).

Therefore, learning how to make decisions with the final overall outcome in mind is essential for me – and I have learnt this by other people modelling it by saying aloud their own decision-making processes. I need concrete examples to understand something – and many concrete examples, so that I can see the ways in which something can vary.

The role and function of special interests

I’m reading Temple Grandin’s book The Way I See It. Although I’ve read a lot of books written by people on the autistic spectrum, I’d never read any of her books before. This is because I thought I wouldn’t be able to relate to her, as I have no interest in cattle, and I didn’t think I thought in pictures, as I’ve always been very focused on words. But then I watched the movie with Claire Danes, and as I watched, my mouth kept dropping in amazement whenever the movie showed what was happening in Temple’s head – the visual images she was making, the angles she was seeing, the literal images she saw when people spoke figuratively. This is what goes on in my head too. I’m good with words, because I was taught to read at an early age, and spent my entire childhood reading, and went on to study English literature at university. Language became (and still is) an ‘obsession’, or ‘special interest’, of mine. But I realised through watching that movie that I do very much think in pictures. Thinking in words really only comes about when I write – I suppose because my primary channel of language as a child was the written word.

I’ve been thinking about special interests, as Temple Grandin talks a bit about them in her book. Interestingly, on my Asperger diagnosis, this is the one area where there is not much information. I couldn’t think of any ‘obsessions’ when the psychologist asked me.

Partly this is because of the connotations of the word – people often use ‘obsessive’ to mean someone neurotic or someone who stalks someone. And it suggests to me a kind of helplessness and lack of enjoyment – someone who is compelled to do something against their will. Whereas the things I’ve been interested in have always been thoroughly enjoyable to me, and make me feel alive and energised. They haven’t felt like ‘obsessions’ from my understanding of the word.

And partly, my inability to think of ‘obsessions’ was because I simply didn’t see anything unusual in my interests. I thought everyone had such interests. And to be fair, they do. In recent weeks, I’ve observed plenty of people obsessed with football and the World Cup. I suppose the difference is that non-autistic people are able to multitask – the connections in their brain enable them to switch from one thing to another with ease, and to see the big picture, in which their interests are just one part. Whereas people on the autistic spectrum don’t have the natural ability to switch easily from one thing to another when they are fully absorbed in something. For myself, having an all-encompassing interest compensates for confusion and difficulty making sense of the world. In a confusing, unpredictable world, it creates a centre, a stability. The more I know about the interest, the more solid it is.

In some ways, I think the actual interest is less important than the fact of having one. While I’ve had a couple of special interests that have lasted throughout my life (such as in language, literature, and musicals), I’ve also had plenty of temporary special interests which have been quite diverse.  I find all kinds of things can be interesting when I really focus on them. I remember having a temporary fascination with Vikings as a child, after going to the Jorvic museum in York. It didn’t last because I didn’t have any books on Vikings or anything to fuel the interest with after leaving the museum. When I had books on things, they became more lasting interests. I had a lot of books on nature – flowers, trees, wildlife – as a child, and I would read these books over and over, memorising the different types of trees and birds, and drawing pictures of them. I no longer have any books on them, so this is no longer an interest of mine, but when I go for woodland walks, then my interest is renewed, and if I had some nature books now, this could easily become a special interest again.

But in terms of a career, and a focus for my life, it seems to me to make more sense to have just one special interest, to act as a kind of centre. For me, I think this will always be language and literature, in all its forms, and at all its levels. Life becomes confusing and unfocused with many interests. Temple Grandin’s book talks about expanding a special interest by making other things relate to it. She is talking specifically about using special interests as learning opportunities – finding maths questions about trains, for instance, if a child’s special interest is trains – but I’m expanding this concept in my mind and thinking about how finding ways to apply everyday things to one’s special interest could help with focus and motivation. Temple Grandin’s book also says that if a child is deprived of their special interest, then life loses its meaning, and I can relate to that. When I’m not able to focus on one thing, but have all kinds of things demanding my attention, I feel that life has no meaning. So a challenge could be to find ways to relate all of life to one’s special interest.

I’m quite lucky that my special interest allows me to do that quite easily. I like writing – so when I’ve had dull tiring jobs, I’ve thought of each day in terms of how I will blog about it (I’ve been blogging on various sites for about ten years). However, sometimes I’ve lost that focus, and then life has seemed dreary and pointless.

I suppose if one thinks creatively enough, one could find ways to apply all kinds of mundane situations to even quite specialist interests. Thinking of other examples, I like to draw portraits, and in social situations I can focus by mentally scanning people’s face shapes and imagining drawing them. I am also very interested in phonetics, and sometimes I can focus in a noisy environment by mentally phonetically transcribing what people are saying.

I suppose too that learning to think creatively like that, by focusing on how one’s special interests could apply to a variety of seemingly unrelated topics, is actually really useful for people on the spectrum, because it is a way of practising flexible thought. People on the spectrum often have a difficulty with thinking too rigidly, so this is a concrete way to be motivated to think more flexibly.

It is often said that ‘normal’ or ‘neurotypical’ people process the world starting from the big picture and moving on to the details, whereas people on the autistic spectrum start with the details and build them up to create the big picture. I know this is true of myself, that I need to start with the details. And it occurs to me that this is why special interests work as a way of finding meaning in the world. You start with the details of your special interest, and use it as a starting point, a vantage point, from which to make sense of the larger world. So special interests are a strategy for not getting lost in a confusing world – they are a constant frame of reference for people who aren’t able to understand the world in terms of seeing the big picture as the constant.

As I’m finding the Temple Grandin book interesting, I might write a few entries exploring specific issues that it deals with.

The logistics of going to hell

While trying to analyse the strategies I’ve formed over the years for understanding non-literal language, it occurred to me that a helpful way to look at it would be to compare my present-day abilities with those of my childhood, and see what I’ve learnt over time.

There is one very vivid memory I have, from when I was ten years old, of an incident which was highly distressing to me at the time, but which in retrospect actually amuses me. I do find a lot of humour in the way things can be taken literally when not intended that way, and the misunderstandings which occur, because even now, I always visualise the literal meaning even when I know that is not the intended meaning.

This particular incident happened at school. It was at boarding school, and one day we had a class in the gym. We were doing some creative group work – some project or other. I can’t remember the details, but then my mind was mostly focusing on being confused. The very fact of being in the gym disoriented me. I liked being in the classroom, at my desk, knowing what I was doing. This project work in the gym was all very confusing and vague to me – I didn’t really know where I was supposed to be, exactly, other than in the gym. Everyone was walking around, in all kinds of directions, and there was no order. And of course, because it was groupwork in the gym, the other children were talking in huddles about all kinds of things – social chitchat at the same time as talking about the project.

So I did what I had learnt to do at this school in social-type situations. I was annoying in a silly way, which made people respond to me in an amused, jokey telling-off way. I had learnt this behaviour as a way of joining in when there was no structure. For instance, one thing I did was to take people’s bags and run off with them, so that they chased after me, laughing, telling me to give them back, and then I’d give them back, and they would banter with me. I can’t remember what exactly I did on this day – I think it was something I said. But one girl in my group (let’s call her Sarah) wasn’t as humouring of me as the girls I usually bantered with/annoyed. She said to me: ‘Oh, go to hell!’

I froze in horror and felt a feeling of deep fear and distress in my stomach.

Now, at one level, I was quite accustomed to the dynamics of insults. I was familiar with the custom of children calling each other names like ‘pig’ or ‘wally’ or ‘wombat’ or ‘cow’ – and would join in with relish! I found it quite amusing because obviously we weren’t really pigs or cows.  I was also familiar being told to ‘shut up’ and ‘go away’, and also saying that to others. It wasn’t nice when people said such things, but I understood it and was familiar with it. But being told to go to hell was something I wasn’t familiar with at all.

Well, I was familiar with the concept of hell – I knew it was a nasty fiery furnace where people went when they died if they didn’t go to heaven. I knew it was a terrible place. I therefore thought Sarah must really really hate me to want me to go there.  I must have done something very dreadful indeed. There was also the distressingly confusing aspect of the fact that I wasn’t dead. I’d never heard of alive people going to hell, and so I had no idea how to go about it. In my confusion, I literally thought I had to go to hell right away, because Sarah had told me to. I had already been confused as to where I should be and what I should be doing, but now I realised that the place I should be wasn’t even in the gym, because hell wasn’t in the gym.

I walked out of the gym, and my eyes become hot with tears. I walked down the small corridor that linked the gym to the rest of the primary school. There were some doors that I knew about – the door that led to the toilets and the door that led outside – and there were also doors I’d never opened before, and I found myself wondering if hell was behind them. Maybe if I’d thought about it logically, I would have realised this was a daft thought process, but my mind was racing and panicking in a confused and terrified way. I had to go to hell. I didn’t want to go to hell. I didn’t know how to go to hell. I was horrified that Sarah hated me that much that she was sending me there.

One of the girls from my group saw me in the corridor and told me to come back into the gym.

‘No, I can’t,’ I said.

She saw in my face that I was crying and asked me what was the matter. I explained to her, through great gasping sobs, that I didn’t want to go to hell, and that I didn’t know how to get there, and that hell was a horrible place. She was completely confused and got another girl to come talk to me with her. They both asked me what was wrong, and eventually managed to get from me that Sarah had told me to go to hell.

They then told me that it was ‘just an expression’ – which meant nothing to me. I knew it was an expression. Anything anyone said was an expression. And this expression had told me to go to hell. They told me that Sarah didn’t hate me and that I should come back into the gym. I told them I couldn’t go back into the gym because she’d told me to go to hell and that hell wasn’t in the gym.

The girls tried to reassure me that it would be all right and that they would sort it out. They went back into the gym and then, a little later, Sarah came out. She came up to me, looked totally confused. She asked me what was wrong.

I told her the same as what I’d told the other girls – that I didn’t want to go to hell, and that hell was a horrible place, and that she must hate me very much to want me to go there, and that I don’t even know how to go to hell, and that I’m still alive, and that dead people go to hell, and that if she wants me to go to hell she must tell me how to get there.

What I remember most about this conversation with Sarah is her complete confusion – and also her kindness. She was genuinely astonished that I was so upset, and she tried very hard to make me feel better. She explained that she said ‘Go to hell’ to lots of people, and that it was an expression (this still meant nothing to me!) and that she didn’t really want me to go to hell (this reassured me enormously!) and that it was her way of saying she was annoyed with me, but that she still wanted me to be in the gym, and that she wasn’t annoyed with me forever, and that she liked me.

I’m actually really impressed in retrospect at her maturity in dealing with it. She was pretty mature for her age in general – she was taller, larger and more developed than the other girls. Also, thinking about it, the expression ‘Go to hell’ is one said more by older people, which is why I’d never heard any of my peers saying it before. As I was very young for my age, Sarah and I were very different and I’d actually barely spoken to her before this experience of having to work in a group with her.

Anyway, it amuses me in retrospect because it seems so ridiculous that I took it literally. But, thinking about it, it only seems ridiculous because of the context I have since learnt. And I think that is how strategies work for understanding non-literal speech – it’s about becoming aware of contexts, aware of expressions and types of expressions, and also aware of the world in general.

Because I’d grown up in a religious environment, I was used to hell being talked about literally, and very seriously. As an adult, I’ve been exposed to many different people with many different beliefs, who refer to hell with very different understandings of it, so I now have that wider context.

Also, as a child, I didn’t know how to deal with confusion. Now, if I am confused, I try to analyse it – or if I’m so confused I can’t analyse, I am at least aware that I am prone to misunderstanding people because of my Aspergers. This self-awareness is really useful. It causes me to try to find another way of understanding something if I am confused. I have the larger awareness that my confusion isn’t because the world is a completely random and unpredictable place, where anything can happen (including me being required to go to hell in the middle of class!), but because I have difficulties seeing the bigger picture sometimes, and making the links I need to make. Awareness of this makes me look for the big picture and the links whenever I’m confused or distressed – and to ask people I trust for their perspective, when I’m still confused. As it is confusion and distress that prompts me to analyse and look for the big picture, the mistakes I tend to make most often are when it hasn’t even occurred to me to be confused (such as when, as I described in an earlier post, people ask if I want to go out for coffee).

It takes years to build up such strategies though. They are largely about learning context by being in lots of different situations. Because of difficulty generalising, it’s important for people on the autistic spectrum to be exposed to many different people and situations. I store in my mind all the different situations I encounter. It’s like a reference book in my head that I can refer to in order to deal with new situations. Then, when I am trying to interpret a new person and situation, I can find all the similar people and situations in my memory and use those to help me translate the new person and situation. Obviously, building up this mental list takes time. And I have purposely put myself in many different and unusual and challenging situations (such as different sorts of job, volunteer work, travelling, etc.) simply so that I could learn how to deal with them. I do that less as I grow older though, because it does take a lot of energy.

Another strategy I’ve learnt, although I use it selectively and with discretion, is to ask people what they mean when I am confused. For a long time I didn’t do this because I didn’t want to appear foolish. I often don’t know whether something is confusing just to me or to everyone. If other people ask, then I realise it’s confusing to everyone, but if no one else asks, I imagine it’s something obvious to everyone else. So in the past I’ve tended to say nothing, and try to hide my confusion. But now I often ask, depending on the person and the situation. If someone knows I have Aspergers, or is generally a patient, open-minded person, then I am comfortable asking. But I will avoid asking the people who look at me like I’m stupid when I ask such questions, or who make sarcastic comments to me. I find when I am able to ask, and the person I ask explains, then I am able to understand what’s going on a lot better than when I don’t ask, and as a result I can join in conversation more.

The other strategy, as I mentioned, is self-awareness. It’s about knowing that you have this difficulty with non-literal language, accepting it and being alert to the fact that, if you are experiencing confusion, this specific difficulty with non-literal language may well be the reason. It’s also about remembering to look for the non-literal ‘layer’ after understanding the literal meaning, and being patient with yourself, knowing that you might need some time to process. I find I feel a pressure to respond straight away – so when I don’t understand something that is addressed directly to me, I will respond with a sort of laugh or an ‘mmm’. And then, a few moments later, after I’ve processed what the person has said, I will sometimes realise that my response wasn’t appropriate, so I say ‘Oh, sorry, I didn’t hear what you said at first’ and then I will respond more appropriately. If I didn’t respond automatically straight away, then that sort of awkwardness wouldn’t happen. So I’d like to get out of the habit of responding straight away. I think this will involve being patient with myself. I observe that there are plenty of people who don’t respond straight away in conversation, and it’s not perceived as a bad thing, so it is a behaviour I could adopt as a strategy for processing the non-literal levels of conversation.

So, to sum up, the strategies I’ve pinpointed are:

  • Being aware that you have a difficulty understanding non-literal language, and applying this awareness to confusing situations
  • Looking for non-literal layers after you’ve processed the literal meaning
  • Being exposed to many different situations and people, and using these to interpret new ones
  • Asking people what they mean when you are confused and when you can trust the person to respond helpfully

These strategies are what I’ve applied to myself and have been helpful, but I’m sure my list isn’t comprehensive. So if anyone has other strategies, I’d be interested to hear them.

Forgetting to eat and remembering facts

As a child, I would often wet myself. Not because I didn’t know how to use the toilet, but because I simply didn’t realise I needed the toilet until I was so busting I couldn’t hold it in any longer. This happened quite a lot until the age of seven, and even occasionally continued until the age of ten. At the age of ten, though, I was so ashamed of doing such a thing, that I very strictly made myself go to the toilet regularly, even when unaware of needing to go.

I never associated this with Aspergers until I read Donna Williams’ autobiography Nobody Nowhere, and she described a similar pattern of not realising she needed the loo and so wetting herself. So I then figured that this must somehow be an ASD trait, but I had no real understanding of why, or where it fit in to the various differences of the autistic brain.

However, lately it has come to my mind again, and I think I understand it better. I have realised that a similar unawareness is still manifest in my life, for all kinds of sensations. As an example, I will describe what happened this morning.

I woke up at 7:00am and I felt awful. I didn’t want to get up. However, I wasn’t fully aware of this, and habit compelled me to turn on my laptop and go onto Twitter. I tweeted, and as I wrote, I realised how tired and unwell I was feeling. The act of writing alerted me to the fact that I could do with some more sleep, and reminded me of what I’ve been intermittently aware of over this past week – the fact that I have done more than I usually do, and have spent a lot of time with other people, and been exposed to various sensory stuff that I find difficult, such as fluorescent lights, the motion of travelling by bus, various loud noises, etc.

However, throughout the week, I have not really been fully aware of feeling tired or unwell. I sometimes get a fleeting awareness, but the feeling passes as I get absorbed in other things. So the awareness that I’m tired and need a rest isn’t a constant, because I am unable to keep several things in my mind at once. Whatever I focus on occupies my whole mind. So I don’t know I’m tired unless I stop and think about it. And the moment I think about something else, the awareness of my tiredness disappears.

I slept again until 8:30am, and then I woke up and went onto the internet again. I still felt awful, but this time I became absorbed in the internet, because I saw I had comments on my blog, and I’d been retweeted, which immediately took all my attention. So then I stayed on the internet. As I updated Twitter, again I realised I was tired, and then I could bring my mind to the fact that it had been a tiring week and that really I needed a day at home. Fortunately I have become aware in the past couple of months that I need at least one day a week at home – a ‘hermit day’, as I call it – so I do this without feeling guilty and it has made a positive difference to my life.

I took a look at my ‘101 things in 1001 days’ blog and realised I had no motivation for it at all. My mind felt unfocused and confused and a little zoned out. I then had an impulse to write about the fact that I was feeling like this – so although I had never before done this on my 101 things blog, I wrote about having no motivation, and how that doesn’t mean I will never have any motivation, but it just means what I am feeling right now – I logically worked through my feelings, and by the end of it, my mind no longer felt confused, and I felt more rested.

At about 11:00am, I went to the toilet, and saw the bath, and was thus reminded that I like to have a bath every morning. So I then had a bath. It was the fact of being in the bathroom that reminded me. It isn’t something that stays in my mind. As I walked back to my bedroom, I saw my incense stick holder, and I remembered how calming I find it to burn incense sticks, and I realised I wanted to burn one. However, the matches weren’t in my room, so I went downstairs to find them. I couldn’t see them in the living room, so I went into the kitchen. Then I saw my eggs that I bought the other day, and realised I was hungry. So I boiled an egg. While it was boiling, I realised that I needed to wash dishes from yesterday, so I did that. I then realised I’d cooked the egg for too long. I ate the egg and then went upstairs again. Once I’d got to my room I saw the incense stick holder again and was reminded that I want to burn an incense stick, and that the matches were still downstairs. So I went down again to find them. I then saw my packet of green tea leaves and decided I’d like a cup of tea.

As you can see from this description of my morning, I am often unaware of my bodily needs unless I am prompted by something external. I’d say there are two reasons for this.

Firstly, my mind is ‘mono’ – that is, I can only focus on one thing at a time. If I am absorbed in doing something, I will not notice my bodily needs. This is one reason why I try to write my thoughts and feelings every day – it focuses me on being aware of what I am feeling and what I need to do.

Secondly, I ‘perseverate’ – this is the word people use to describe the continuous focus on one thing that people on the spectrum have. As with difficulty multi-tasking, it seems to me that this is to do with the disruptions in brain connections. People on the spectrum have difficulty switching from one task to another – which includes switching from doing nothing to doing something, which is also known as ‘initiating’. To me ‘switching’ and ‘initiating’ a task are pretty much the same – they involve a change of focus. A change of focus involves a kind of multitasking – being aware of what you are doing right now, being aware of what you plan to do instead, and to then take the various steps to switch, while still being simultaneously aware of both. It’s not that it’s physically hard to stop one thing and start another, but it’s more that the mind resists it – even when my logical brain is saying ‘this is silly – I need to stop this now and go do so-and-so’, still there is a great internal resistance, which defies logic, and frustrates me greatly. Partly it’s because that logical voice can’t stay constant in my mind – at each moment I must choose to focus on one thing or the other, and once I’ve focused on one thing, then the other disappears.

I see a very visual illustration of this in the fact that objects in my house remind me of what I need to do. I have started putting a glass of water in my kitchen, so that when I come down in the morning, I see it and drink it. I always refill it, so that whenever I see it, I drink it. Whenever my dad visits, he is always telling me I need to tidy my house and ‘put things away’, and he gets very annoyed by the mess – but the truth is that having things all out on display is actually a really helpful strategy for me. I have learnt not to put things in the closed drawers of my fridge, for instance, because I forget they are there. When I open my fridge, I eat things that I see. It’s not that I don’t know, at an abstract level, that there are drawers with food in them – obviously I know that, and I can remember putting the food in them – but it’s more that I don’t think of it while I’m focusing on something else.

Similarly, I have a TV which I barely ever watch. The few times I watch it is because I’ve read online that something good will be on TV in a few minutes, or because my sister has phoned and told me something is on that she thinks I’ll like. It’s not so much that I dislike TV – there are TV shows that I really like – but just that I forget it’s there if I’m not thinking about it.

So lists are important. My ‘101 things in 1001 days’ list is great, because in actually writing down the things that pop into my head that I’d like to do, I have an external prompt and so I won’t forget.

I’ve talked a lot about forgetting, which strikes me as a bit odd, as I actually have an extremely detailed memory. I remember my childhood in detail, and I remember what I read in books in detail, and I generally do very well in exams, even if I don’t study. If I just glance through the notes beforehand, I remember it all. But the kind of forgetting I do – it’s a different sort of memory. It’s not really forgetting, as the information never leaves my brain, and is always there if I am prompted to recall it, but it is temporarily forgotten from my conscious awareness, I guess.

I will try to come up with an analogy. If you imagine my whole memory as a kind of library full of books, and then imagine that to function each day, I need to refer to five of these books. Referring to these books means they must be open on the desk – I can’t refer to them otherwise. So my ‘working memory’ – what I am using to function – can be the desk of the library, on which I look at these five open books. Most people have a desk big enough for the five open books to fit, but for me, I can only fit one book at a time. The other books are all stored away, where I can’t see them or work from them. So, while other people are looking at all five open books together and seeing how they fit together, and working them all into their lives, I am looking at one open book, and focusing totally on that.

To get another book would mean going all the way to the back of the library to find it amongst all the other books. It would also mean putting the present book back away, so I can’t use it any more for the time being, and I don’t know when I’ll remember it again. I don’t want to put the present book away, because it’s important and absorbing. I can make a list of the five books, so that I remember to keep switching them, but they are never integrated. I can only look at one at a time.  Thus I never have a sense of being in control of my life as a whole – only one part at a time.  Life seems to me to be in fragments rather than an integrated whole.

My ‘five books’ could be eating, exercising, sleeping, studying and blogging. Of course there are many more than that, but this is just a simple analogy to explain how ‘perseveration’ happens.

I suppose, to continue the analogy, when I write my thoughts and feelings, that is giving me the opportunity to see which ‘book’ is the most essential and to select it, rather than just selecting the book that I happen to see first. It gives me more control with awareness of needs and consequent prioritisation, but it doesn’t actually help with switching ‘book’, unless I then take a break from the ‘book’ and write down more of my thoughts – but of course that in itself requires a kind of switching of activity.

I hope this blog post shows that being unaware of bodily needs, perseverating, having difficulty multitasking, and having difficulty organising, are all linked together, rather than being a bunch of separate, unrelated ‘symptoms’ of autism. Everything I have described is why I have such difficulty organising my life. It is also why, when I focus on one thing, I often do exceptionally well at it. So it’s both a curse and a blessing.

‘Suns don’t talk’: the urge to correct

I have a very clear memory of overhearing a conversation in the bus when I was a teenager.  Two teenage girls were sitting in the seats facing mine and they were talking about something. While the scene is very vivid in my memory, I can’t actually remember what it was they were talking about. What I do remember is that they were wrong.

The reason this memory is so vivid is the thought process it initiated in my mind. The moment I realised the two girls were saying something wrong, I had a powerful urge to correct them. An instinct to interrupt them and tell them the truth. I couldn’t stand that they were saying something wrong – that something erroneous was ‘out there’, co-existing with – and contradicting – the truth. I wanted only one truth to be out there.

However, fighting with my instinct to correct these two girls was my habit of silence. I barely spoke to people I knew, let alone people I didn’t know. I had learnt over the years to be almost silent at school, because my behaviour seemed to elicit such unpredictable responses. Apparently, most kids learn appropriate behaviour by suppressing the behaviour which gets a negative response and continuing the behaviour which gets a positive response. However, such learning requires the ability to generalise. People on the autistic spectrum have difficulty with generalising because we see every little detail, so it’s hard to see what is the constant factor. For instance, as I talked about in my previous blog post, I couldn’t understand why my screaming ‘I don’t want to play in the playground’ elicited a different response the second time I said it – and so, because it seemed totally random to me, I gave up trying that particular communication. And so, over the years of my schooling, I learnt that the safest thing to do, with the most predictable response, was to say nothing unless spoken to.

So my mind was in conflict. The thought process that was going through my head as I watched the conversation between these two girls on the bus went something like this: ‘Why do I want to correct them? I don’t know them. They don’t know me. It would be terrifying to speak to them. I have no idea how they would react. And yet I want to correct them. It is very very important to me. I don’t want them to be saying something that is incorrect. But why? Why do I care what two strangers say?’

I didn’t correct them. But it bothered me for several days afterwards. Bothered me that they’d said something incorrect, and bothered me that I didn’t understand why I cared.

Oddly, I didn’t connect it with the corrections I’d frequently made in the past. When I was younger, before I’d learnt to be mostly silent, I would always interrupt teachers at school to correct them. I remember when I was five, our teacher started to read us a story about an old man who was talking to the sun. The moment the sun talked back at him, my hand shot up.

‘Suns don’t talk!’ I stated. It was very important to state this, because books couldn’t go round claiming that suns talked when they didn’t!

‘This one does,’ said the teacher. And that was that. I had no evidence to the contrary. But it bothered me.

At 6 years old, we moved house and I went to a school where the other children and the teacher spoke wrongly, as I saw it. They would say ‘I haven’t got none’ instead of ‘I haven’t got any’. Whenever anyone said ‘I haven’t got none’, I would inform them that what they’d said really meant ‘I’ve got some’. They scoffed at this and went to tell the teacher that I was talking nonsense. The teacher, who also said ‘I haven’t got none’, changed the subject, so I figure she must have known I was right!

At ten years old, I was at boarding school. I remember that the house mother put a notice on the boarding house notice board about ‘towells’. I informed her ‘There is only one “l” in “towels”.’

The house mother didn’t like me much. She looked at me and said ‘So?’

I took her ‘so?’ literally and replied, ‘Well, you’ve put two “l”s here, so it’s wrong. You need to take an “l” away.’

‘So?’ she said again. ‘Does it matter?’

‘Yes,’ I said. ‘You spelt it wrong.’

‘What difference does it make to your life?’ she said, in quite a hostile way. ‘Can you understand what the message means?’

‘Yes,’ I said.

‘Well then.’

My class teacher at boarding school was more open to corrections. One day he taught us about primary colours and the secondary colours, and he got them the wrong way round. I had read about primary colours and secondary colours and I knew that what I’d read was different from what he’d said, so I went to talk to him after the class (being far too fearful to speak in front of the whole class). I remember being quite astonished at his response to my correction – he said that he said he’d have to go and check the book to find out, and he’d let me know the next day. I’d assumed all this stuff must be in his head. It was in my head from reading it once, so why wasn’t it in his head? But the next day, he told the whole class that he’d got it wrong, and that the colours he’d called primary colours were in fact secondary colours, and vice versa.

I give all these examples because I realise this is quite a common Asperger behaviour – to correct people. It’s also very misunderstood, and causes a lot of difficulties for people on the autistic spectrum. In general, people don’t like to be corrected. Particularly if the correction is irrelevant to the message, as with my house mother and her message about ‘towells’.

I think the main difficulty comes in misinterpretation of intention. I observe that it is not only autistic people who correct people. However, when non-autistic people correct people, there seems to be a different sort of intention – a bit of arrogance, and wanting to prove oneself clever and superior. Because of this, people often assume that all people who correct people have this intention.

For myself, I have no desire to prove anything, because who I am is who I am, and isn’t changed by other people’s views. People may think I’m clever or stupid, but that makes no difference to who I am. I imagine this attitude is quite common amongst people on the autistic spectrum, as we don’t tend to have the instinct to impress others. The desire to compete and to impress requires quite a bit of social awareness, which doesn’t come naturally to people on the autistic spectrum, and hence is unlikely to be an instinct.

I would say that the impulse to correct people is purely a reaction to contradiction and discord. I find it confusing and distressing to observe incorrect things being put ‘out there’. I want them put right. Whether it’s me or someone else who does the correcting makes no difference to me – I just want the correcting to happen.

As for irrelevant correction, people on the spectrum often have difficulty seeing the wider context, because we focus on the detail. At ten years old, I saw the word ‘towells’, being different to the word ‘towels’, and I knew I’d seen the word ‘towels’ many times and never the word ‘towells’, so the extra ‘l’ was wrong and had to be removed. That was the one thing my mind was focused on. I didn’t simultaneously see the big picture – the fact that everyone would understand the message, and that the house mother might feel undermined by a ten year old correcting her message.

As an adult, I have become a lot more aware of the importance of context. I worked for a while as a teaching assistant in a school. I would support children in classes, helping them understand what the teacher was teaching. When the teachers made mistakes on the board, I would automatically say so, there and then, to the teacher, in front of the whole class. This caused the teachers to act in an irritated way towards me, which I didn’t understand, because surely it was good that they were being corrected. It would stop them teaching anything wrong. However, one teacher specifically asked me not to do this, because it interrupted his flow. I didn’t really understand what he meant, but in retrospect I can see how annoying my interruptions must have been – not just in terms of interrupting flow, but also in terms of keeping control over the class, and the importance of not being undermined.

I think one difficulty I have is that I don’t see making mistakes as a personal thing – if I make a mistake, I’m happy to be told, and I will openly state when I’ve made a mistake. I don’t associate it with myself, but with a body of information that is ‘out there’ and which needs to be represented correctly.

I have taken part in many online discussions and debates on various forums, and one thing which always confuses me is when people’s aim seems to be to prove themselves right rather than to attain a more accurate understanding. This method of debating actually seems to be the norm – most people seem to see it as a personal thing, about themselves needing to be right – and so over the years I’ve gradually lost interest in debates, because this is so alien to my way of thinking.

As always, I’m not sure how to conclude this. My intention for this post is to explain why people on the spectrum might have an instinct to correct people. I want to minimise misunderstanding. I think it is easy for people to respond in a hostile way to being corrected, so I wanted to put across the autistic perspective to show that it’s not necessarily a case of being an arrogant know-it-all. It’s possible for people on the spectrum to learn what is appropriate, but this never comes naturally, and thus it takes a long time. So my message would be ‘Be patient with us!’

‘I don’t want to play in the playground!’

One of the things about Aspergers I struggle to explain is that of difficulty expressing emotion. Perhaps this is because I have quite an effective strategy for this now – I write down my feelings regularly, and this helps me process them. The more I do this, the better I become at recognising my emotions. I also have read a great deal of material on psychology, so I can analyse myself and others in the light of this, and gain understanding this way.

Thus I understand myself and others by referring to what I will call catalogues in my brain. I refer to everything I have observed about the person (or myself) and what I’ve observed about people in general, and what I’ve read about pyschology. I find the pieces that fit together. It occurs to me that non-autistic people probably have a different way of understanding themselves and others, and that I have no idea what this way is, because I’ve never heard anyone verbalise it.

Anyway, in order to explore the difficulty people on the autistic spectrum have expressing emotion, I think I need to go back in time to when I was a child, and I had no such strategies. Back to when I was four years old and I’d just started school…

The thing I hated most about school was the playground. It made no sense to me. Well, school as a whole didn’t make sense to me, but the playground made even less sense! Children ran around quite randomly and I saw no point or pattern to the way they behaved. There would always be a teacher standing in the playground, but I didn’t understand why she was there, because she wasn’t telling us what to do. So I had no idea what I was supposed to be doing. The weather was generally damp and uncomfortable for me too. While I could easily amuse myself in a quiet room at home, I felt quite lost and bewildered in a big noisy chilly damp playground where children were running around and behaving in a chaotic way and a teacher was watching us. I had no desire to play with the other children, because their play made no sense and they made no sense.

Bear in mind that I can describe this in retrospect, because I remember it very clearly and I now have the ability to translate thought processes and feelings into words. At the time, I didn’t have this ability. There was just this overwhelming chaotic frightening confusion.

One day at playtime, when I was still very new to school, I observed that the teacher standing there was my class teacher, whom I will call Miss Bailey. There seemed to be a different teacher each day, and this too seemed random and confusing. But now that it was Miss Bailey, I felt that there was something that sort of made sense in the playground. Miss Bailey knew who I was, and I knew who she was. Maybe she could help me.

So I went up to her and started screaming in a distressed way. Not because I was bad or attention seeking, but because I wanted help and I didn’t know how to ask. Despite being very verbal and having good language skills, I couldn’t put into words what the problem was or what help I wanted.

Miss Bailey was used to me screaming. It was a regular occurrence. She found it frustrating (another thing which I realise in retrospect, by analysing the things she would say in response!). She said to me ‘What’s wrong now?’

I screamed louder. Not because her words upset me, but because her words meant that I was being acknowledged, and that she realised that something was wrong. So my louder scream was my response to that – my way of saying ‘Yes, something is wrong – you’re right!’ (Once again, this is something I realise in retrospect, as I put the memory of my feelings into words).

Miss Bailey asked me again what was wrong, and told me to stop screaming and to explain to her what was wrong. I couldn’t explain it, so I just carried on screaming. She started to suggest things to me – Had someone hurt me? Had I fallen over?

‘No!’ I sobbed.

‘Then what’s wrong?’

I actually don’t remember the exact details of what happened next – whether Miss Bailey came up with the idea or whether I came up with it – but I started screaming ‘I don’t want to play in the playground!’

‘Why not?’ she asked.

I had no idea, so I just repeated again and again ‘I don’t want to play in the playground!’ I ran around her in circles, as I cried ‘I don’t to play in the playground! I don’t want to play in the playground!’

Miss Bailey said some things to try to jolly me along, and make playing in the playground sound appealing. She suggested various things I might like to do. I said ‘No’ to them all, and then kept repeating ‘I don’t want to play in the playground!’

Then she came up with a different solution: ‘Do you want to stand with me here?’

I thought about it. If I stood with Miss Bailey then I wouldn’t have to be with all the other children, and I wouldn’t be confused by not knowing what I was supposed to be doing and where I was supposed to be going. I’d just have to stand there. That was easy, and not confusing. ‘Yes,’ I said.

Miss Bailey took my hand, and I stood there holding her hand, and I liked the rest of that playtime.

Playtimes after that were as chaotic and unpleasant as usual – until the next time Miss Bailey was on duty. I was so delighted to see her! I knew exactly what to do this time. I went up to her and started screaming ‘I don’t want to play in the playground! I don’t want to play in the playground!’

‘That’s okay,’ she said. ‘I know you don’t like playing in the playground. Normally this isn’t allowed, but you can go inside and sit in the classroom.’

A surge of panic rose up inside me. That wasn’t what was supposed to happen! That didn’t happen last time. Why had she changed it?

‘Nooo!’ I screamed. ‘I don’t want to play in the playground! I don’t want to play in the playground!’ I kept repeating it, because I knew that last time I’d repeated those words, she’d let me stand with her and hold her hand.

To be honest, if she’d told me to go inside the first day, I’d probably have welcomed it. There was nothing bad about going inside – it was just frightening to me now, because it contradicted the small piece of sense I’d made of the chaotic world around me. I’d discovered – or thought I’d discovered – that if I screamed ‘I don’t want to play in the playground’ then Miss Bailey would let me stand with her and hold her hand during playtime, so playtime didn’t have to be horrible any more. A simple cause and effect thing. A pattern. A way that I could have some sense of control in the mayhem surrounding me.

Poor Miss Bailey didn’t understand all this, of course. ‘I know you don’t want to play in the playground. If you go inside, you won’t be in the playground. You said you don’t want to play in the playground and I’m saying you don’t have to.’

Her voice didn’t sound as warm as last time – last time she’d sounded like she really wanted to help me, but this time she seemed less interested and more frustrated. This confused and frightened me, because it made her seem like a different person. The idea that doing the same thing could elicit two completely different responses from the same person made the world even more unpredictable and terrifying. Of course, in retrospect, I can reason that she’d probably thought about it after the first time, realised I hated the playground, and so wanted to come up with a better solution for me than just standing there holding her hand. But at the time I had no way of working this out. So I screamed and screamed, quite distraught.

I don’t remember the details of the interaction that followed. Miss Bailey tried to find a solution, and eventually realised that I wanted to hold her hand. She let me hold her hand, but, unlike the first time, when she’d been welcoming to me, this time she said, ‘Why didn’t you say that to begin with? If you want to hold my hand, just ask me if you can hold my hand. Don’t scream and say you don’t want to play in the playground. All you had to do was ask me. You can hold my hand now, but you can’t always hold my hand, because sometimes the other children like to hold my hand.’

After that, I never stood beside her and held her hand again. Partly because I was scared by the fact that she’d seemed to change into a different person. Partly because I was confused by the idea of an unreliable hand which other children sometimes held too. I wanted something I could rely on for definite. And partly because, odd though this may seem, I knew I’d never be able to ask her to hold her hand.

This last reason is frustrating to me, looking back, because even now as an adult, I can’t quite explain it. It’s not that I was literally unable to say ‘Can I hold your hand?’ If it had been written in a book, I’d have been able to read it out loud with no problem (I was quite a precocious reader). So logically, it seems to me to be ridiculous that the teacher gave me the very words to say in order to get what I wanted, and yet I couldn’t say them. And yet I can remember the feeling and I know that this inability was very real to me.

I have worked out, though, that it’s to do with expressing feelings. Asking to hold someone’s hand is a question that involves implicit, unspoken feelings – and at four years old I could sense that. However, the feelings aren’t stated in the question, and at four years old, I didn’t understand the feelings. I find that if I’m asking for something (even now as an adult) I feel the need to be able to explain why I’m asking. Had I had, at four years old, the language and reasoning ability I have now, I’d have been able to say to my teacher ‘Look, I find playtime really chaotic and scary, because it makes no sense to me, and so it gives me a sense of security to stand with you and hold your hand.’ That would have been an easier question to ask, emotion-wise. If I’d been able to understand my feelings in the light of what I know now about psychology, they wouldn’t have seemed like strange, overpowering, inexplicable things. But without that understanding, to say something or ask something which involves feelings would be quite terrifying.

Yet surely ‘I don’t want to play in the playground’ also expresses feelings, as does screaming. But the screaming was, to me, a more accurate representation of the feelings I had – chaotic and confusing and wordless. How does one convert such feelings into a quiet, polite ‘Can I hold your hand?’ To me there was no correlation between the question and what I was feeling. And I somehow needed – still need – that correlation. An external integration to make up for the lack of internal integration, maybe.

Anyway, this is my example of difficulty expressing emotions. It’s complex, I think – more complex than it’s portrayed to be. I think it’s probably to do with a need for accuracy and truth – something very important for people on the spectrum, because any deviation from the truth creates confusion. And the trouble with emotions is that they can’t truly be contained by words – they are a different language from words. The analytical part of the brain that analyses with words isn’t the part that feels emotions. Even now, as I write my emotions down regularly to process them, I’m aware that writing them never fully depicts their depth and complexity. I can describe them in a detached, analytical way, but that is not the same as feeling them. There is something intrinsically wordless about emotions.

I think non-autistic people get round this by showing both the emotion and the language together – another form of multitasking! I can only do one or the other. I can explain the emotions in words – which can lead people to think I’m not actually feeling the emotions I’m expressing, because my voice will sound matter-of-fact – or I can express the emotions wordlessly by, say, crying, or getting angry. In this case, I may use words, but have little control over them, so they are disjointed and ineloquent. This does not create a good impression, so I tend to choose the former option.

I have learnt to act. When I am talking with someone else about their emotions, I can do appropriate voice tone and facial expression. I do this because it’s a social convention and people like it, but in reality, I am not feeling feelings at the same time as talking. Not that I don’t feel feelings for others, but I just can’t fully experience feelings and express myself in language at the same time. However, while I do this with others, I never do it when expressing my own feelings. It seems false somehow. When I do it for others, it may in one sense be false, but it’s also a conscious decision to follow a convention that makes the other person feel valued – so it is real from that perspective.  But describing my own emotions is different. It’s more confusing – while people like you to express appropriate emotion over their feelings, they don’t always like you expressing too much emotion over your own feelings. Or rather, there are all kinds of unwritten boundaries, particularly in the UK, where the ‘stiff upper lip’ mentality still remains to some extent, and expressing too much emotion is often seen as indulgent or needy, while expressing too little freaks people out because you seem like a robot.

So, while I’ve learnt how to find words to express emotions, I haven’t yet mastered the art of seamlessly integrating verbal expression of my emotion with wordless expression of my emotion. But still – I’ve come a long way since the age of four!

And now, to conclude, I’m going to think about what would have helped me at four years old – a verbal, intelligent child who somehow didn’t have the words to express emotion. Looking back, I know my teacher wanted to help me – she just didn’t know how. I actually think it would have helped me to have coloured tickets – one colour to say I want to play in the playground, another to say I want to hold the teacher’s hand, and another to say I want to go inside.

The teacher would have had to explain these tickets in detail to me and tell me the exact procedure of how to use them, and then I think I would have really enjoyed such a system. It would have been a simple shorthand to express what I wanted, and to know these were three options which I could choose without having to to understand and explain the feelings behind them. Not that it’s not important to understand and explain feelings, but I think that would have been better developed in a separate non-stressful time, one-on-one with a support teacher (we didn’t have support teachers back when I was a kid, but I’m just thinking what would have worked for me in an ideal world).

I think I’d have needed my teacher to explicitly explain to me that there were different options at playtime – and even to talk about the playing options. If she’d explained to me that different children like to play different things, and that everyone’s different, and if she’d talked to me about the odd sorts of games different children played, whilst making it clear that not everyone likes such games, then I’d have felt less bewildered. I can see the value of Social Stories, which I know are popular now with kids on the autistic spectrum – a social story explaining playtime would have been really helpful.

As for expressing emotions, I can see how pictures of different faces – smiling face, sad face, angry face, etc. – would be very useful for a child. When overwhelmed by emotion and confusion, it’s hard to see through all the overwhelming details of confusion and pinpoint an emotion. Perhaps pictures of faces would act as a sort of prompt – in the way that writing down my thoughts and feelings prompts me as an adult to pinpoint how I’m feeling.

I’ve always found ending blog posts very hard. Everything I write seems to lead to something else, and I always feel the need to clarify further, and give further exampes. Summing up with a neat conclusion seems impossible, because I end up with more questions than answers. So I end up stopping abruptly purely because the post has got far too long! Which I’m afraid I’ll have to do here too. I know this is a huge topic, and my oversized blog post really doesn’t cover it all! But I hope it gives some idea of how and why expressing emotions can be difficult for people on the spectrum.

Being meta: the need for analysis

Writing about Asperger Syndrome is actually harder than I thought. Not the details – I can describe those quite accurately. Not even the big picture in itself. The difficulty is in integrating the two. While I’m aware of the difficulty I have in integrating details with the big picture, it somehow didn’t occur to me that it would also influence how I write. But it does, as I will now explain.

If I talk about the big picture, I look at Aspergers as a different way of thinking. I look at how differences are not necessarily bad. I say that I’m happy to be myself, and that Aspergers has both positives and negatives. And all of this is true. But then I realise that this doesn’t give an accurate idea of the specific difficulties and the ways in which they can actually be quite disabling in some situations, and so I become concerned I am trivialising the disability aspect.

But if I talk about the specific difficulties, which I can describe and illustrate in great detail, I become aware that I’ve made myself sound terribly disabled and incapable. And in reality this is not the case. The difficulties are there, and they can be disabling, but I have all kinds of strategies to deal with them. The strategies can be tiring, and I do need a lot of sleep, and don’t have as much energy as I’d like, but at the same time I function and I generally enjoy life, when I’m not overwhelmed. Sometimes I function better than other times, depending on how supportive my environment is.

So I’ve been feeling that the big picture and the specific details weren’t giving a unified picture, and I’ve been wondering how to link them. On reflection, I think the strategies are the link. If I talk about what strategies I use, then it will make sense of how it’s possible to function and enjoy life at the same time as having specific difficulties.

Something I’ve become aware of is that not all people with Asperger Syndrome function as well as I do. I know some who are very unhappy and find life incredibly difficult. And also there are others who function better than I do, because everyone is different. And to be honest, there have been plenty of times I’ve been very unhappy and found life incredibly difficult, and there may well be such times in the future too. Of course, that’s the same for everyone, regardless of whether or not they’re on the spectrum, but I’m talking about when it’s due to specific Asperger traits and limitations.  I am aware that I function well because I have put lots of focused effort into finding strategies, and also because I adapt my environment, where possible, to make life easier for myself. Doing this has required becoming very self-aware and seeing what helps me and what doesn’t.

I think this entry is a way of voicing my thoughts about how to focus this blog, and how to integrate the positives and negatives of Aspergers, and the details and the big picture. I think the focus should be a mix of the following:

  • describing and illustrating the way my mind works, in order to explain Asperger traits and theories
  • providing strategies that I have used and describing how they work

I realise this entry is very ‘meta’. People often tell me I’m being ‘meta’ – this seems to be a popular word lately to mean that you are talking about how you are doing what you are doing, rather than simply talking about what you are doing. So I am being ‘meta’ by talking about how I am writing my blog rather than actual blogging. In the past, before people used the word ‘meta’, people would call this kind of behaviour ‘analytical’. One person used to tell me that it was ‘pretentious’ to talk about the act of blogging rather than just to blog. I’ve often been told that I ‘over-analyse’ and that I should just live without analysing.

Generally, people don’t seem to like this ‘meta’-ness. So I will explain here that I actually don’t have a choice. It’s the way my mind works. I need things to be explicit, and I need to be explicit. I have to anlalyse everything in order to process it, because I need to see the mechanisms behind things. I don’t process things on instinct. I analyse people in order to understand them. I analyse what I am doing in order to understand it. I analyse what is happening around me – because if I don’t, I am in chaos.

Also, I need to write my thoughts and feelings down to process them. Most of this is done in private journals, rather than in blogs, but as this is about my blog, I am putting it here. I hope it will function to explain my thinking behind the blog and how I want to organise it. I also hope it will show a bit about how my mind works, to illustrate Aspergers a little, which is what I aim to do with this blog.

One thing I always like to do is to illustrate what I talk about with specific examples. This is because, for myself, concrete examples always help me to understand something. So, having talked about how I need to analyse everything, I will now give an example to illustrate it…

Once, when I worked in a residential home, I could hear two colleagues chatting outside as they had a cigarette break. Let’s call these colleagues Sarah and Doreen (which are not their real names). While I got on well with most staff in this workplace – they found me eccentric, but a good worker – Sarah and I never really ‘clicked’. She was very different from me, and we didn’t get on so well. I found her frustrating because she was very indirect, and would never say when she had a problem with someone. She would gossip about people behind their backs rather than dealing directly with issues.

Anyway, as I heard them talking, I caught snatches of what they were talking about. I heard my name mentioned by Sarah a couple of times. I heard Sarah talking in a critical way about someone, with the tone of voice she used when gossiping. She was complaining about working with this person. I wasn’t able to hear the whole conversation – just snatches. It sounded like she was criticising me, but I couldn’t hear why. I was a bit irritated by this, because I felt that if she had a problem with the way I work with her, she should say so directly to me, particularly as she was my senior in the hierarchy of the staff.

The next day I was working with her again. During a quiet time, we were having a cup of tea in the kitchen – Sarah and I, and another staff member, whom I’ll call Jill, who was also senior to me. I said casually to Sarah, ‘I heard you and Doreen talking last night – you were complaining about someone in an annoyed voice, and I kept hearing my name.  It sounded like you were talking about me. Did I do something in the shift to upset you?’

Sarah paused, and then said with great emphasis ‘No no no! Not at all.’ She went on in great detail to tell me about how she’d been complaining about another person and the particular things she’d been complaining about, and how she’d mentioned my name just because she was on shift with me. She spent a long time telling me the details of what she’d been talking about.

I told her that if ever she did have a problem with me, she could tell me. She assured me that if she had a problem with me she would of course tell me, and that she hadn’t had a problem with me at all, and that I was being quite paranoid.

I believed her, because to me, if someone had asked me that question and I’d had a problem with them, I’d have told them – I’d have welcomed the chance to talk about the problem. And I would never tell someone they were paranoid unless they really were. However, I did think it was odd that Sarah went into such detail and kept repeating herself, and there were some parts of the story that didn’t quite make sense to me, but I couldn’t process it on the spot, because I was busy trying to understand everything she was telling me.

Afterwards, when I was at home, the conversation ran through my head, because I tend to remember conversations almost verbatim. As it ran through my head, I realised there were parts that contradicted each other. I analysed everything she’d said, and then realised there were inconsistencies that made it clear, logically, that she must have been lying. It took quite a while to analyse it all. There was no instinct – analysis was the only way I could evaluate what she’d said.

The next day, when I was alone with Jill, I said to her ‘You know that conversation I had with Sarah yesterday. I’m pretty sure she wasn’t telling the truth, because what she said had contradictions.’

‘Oh yes, that was hilarious!’ said Jill with a laugh. ‘She was so obviously lying.’

‘How do you know?’ I asked, rather surprised, because to me it hadn’t been obvious, but had taken a lot of analysis.

‘Oh you know – her gestures, the way she talked fast and kept going on and on, and waving her arms around wildly, like she always does when she’s lying. She’s so obvious when she lies! It was so funny that you confronted her – did you see me hiding my face in the fridge so she couldn’t see I was laughing?’

I was amazed. I hadn’t seen any of this. I’d heard the words of what Sarah was saying. I hadn’t noticed her gesticulations, nor the speed of her speech, nor Jill hiding her face in the fridge! I’d also had no idea that Sarah lied regularly (which Jill’s comment implied) nor that there was any kind of friction between Jill and Sarah that would cause Jill to laugh at Sarah being confronted. In that conversation I caught a glimpse of a world of innuendos and subtleties that I was not part of. And yet Jill and I had both reached the same conclusion, through completely different means – we both realised that Sarah was lying. But for me, it had been a logical analysis, rather than seeing all the subtle levels that Jill immediately saw.

So that is why I need to analyse. I don’t have another way of working things out. It’s a compensation strategy. One of the many strategies I use. I quite enjoy it actually – I love piecing things together, like a detective. It’s like a puzzle. It enables me to spot lies – and numerous other details – that others don’t spot. There are of course a lot of drawbacks to not picking up on all the innuendos. While I may be accepted in a group, I’m never part of that inner circle of subtle social cues, exchanged glances, etc. Possibly, if I tried really hard, I could be, but then I’m not sure I’d want to, because, as well as being exhausting, it would involve webs of deception that would be quite confusing and uncomfortable to me.

Besides, my way of dealing with things directly generally works for me, at the levels I need it to work. People often like my honesty and directness. It hasn’t always worked, as in the past I haven’t always chosen my words with the other person’s feelings in mind, but over the years I’ve learnt to hone it down so that it’s generally acceptable and non-offensive. So I have an alternative way of operating, and I learn to make it work. Which, to me, is what forming strategies is all about.

When coffee doesn’t really mean coffee

When I first started reading information about Aspergers, there was one thing that I didn’t think applied to me – the act of taking non-literal language literally. I knew that ‘raining cats and dogs’ didn’t really mean cats and dogs coming out of the sky. I knew that ‘pull your socks up’ didn’t really mean pulling one’s socks up. I knew these things because my mother had explained them to me when I was a child. I also knew about metaphor, because I’d studied English literature and had read all about it and learnt to recognise it in literature. So clearly I couldn’t possibly have the Asperger trait of non understanding non-literal language.

It is only in the past couple of years that I’ve become aware of how literal I am in many ways. In fact it is my very literalness that led me to believe that I couldn’t possibly be literal, because I took it in a very absolute way to mean not being able to comprehend any non-literal language at all. Of course, it is a lot more complex than that.

In reality, while I understand metaphors and non-literal language that has been explained to me, I often don’t understand metaphors that I’ve never heard before. I also often don’t understand sarcasm. Having Aspergers is a bit harder in some ways when you’re a Brit, because Brits love sarcasm and employ it frequently in a deadpan manner! Not only do I often fail to understand sarcasm, but I often take exaggerations literally. I remember a few years ago someone telling me about firemen having to come to her house for some minor incident. She said something about hundreds of sexy firemen in her living room, and I replied with confusion ‘Why did you need hundreds of them?’ She didn’t reply, and she and her friend exchanged glances. I realised a few days later that she must have been exaggerating!

But note the fact that I did realise. So it’s not so much that I’m unable to get non-literal language, but more that I often don’t process it at the time. Listening to someone talk is a form of multitasking, and requires a lot of effort. There are many levels:

  • the level of hearing the noise
  • the level of recognising it as speech
  • the level of recognising each phoneme and recognising the words which the phonemes make up
  • the level of understanding the words and how they relate to each other – the literal meaning of the sentences being spoken

And then there is the level of non-literal meaning, which may or may not be present. This involves stepping out of the details and looking at the big picture – the context, the clues, body language, facial expression, etc.

Now, in order to function at all in a conversation, all of the steps before ‘non-literal meaning’ are essential. If you are able to process all these steps (and they do require deliberate concentration – if I don’t make myself concentrate, then I just hear the phonemes and words, and details of the particular way the person pronounces them, with no meaning) then you can normally make general sense of a conversation. And if you’re making general sense, and it’s taking a lot of effort, there is nothing particularly that prompts you to make the extra effort to analyse the further layer for potential non-literal meaning.

For myself, it’s often after I’ve taken it literally that I realise. I might say something and receive an odd response from those I’m talking to. It takes a while to process the odd response – to analyse it, to work it out. Or maybe I have said nothing and the conversation has continued, but the oddness of the thing the person has said (and if it’s non-literal, it generally is odd when taken literally) will stay in my mind and will not leave until it’s been sorted out. If it’s not particularly odd, it may take a very long time.

For instance, it’s only recently dawned on me that ‘going out for coffee’ does not literally mean this. Now I’ve been going out for coffee for many years. It generally happens along the following lines:

A friend suggests going out for coffee. In my mind I am going out for a drink of coffee. I like coffee so I agree. We go to a coffee shop and I order a coffee. My friend may order a coffee too. Or she may order a hot chocolate. In which case my thought process goes something like this: ‘Oh – she changed the plan and ordered hot chocolate instead of coffee, without telling me she was changing it. That’s a bit cheeky – she could have told me! Ah well, it’s not a big deal.’

Now, because I have a lot of food intolerances, there are times when coffee gives me bad abdominal pains, so there have been times when friends suggested going for coffee and I explained that I wasn’t feeling well and that coffee would give me tummy ache. In such cases, they would tell me that there were other drinks available that I could order. My understanding of this was that they were changing the plan just for me, to fit around my tummy ache – so were were no longer ‘going out for coffee’, but ‘going out for coffee for everyone else and a different drink for me – and possibly a different drink for some of the others if they decided to change their mind when they got there’.

After several years, I realised that changing the plan at the coffee shop happens quite a bit, and that it would probably wouldn’t breach any etiquette if I did it myself, even though it is officially supposed to be coffee. After all, sometimes, when going out ‘for coffee’ with friends, I would see a drink I’d rather have, such as green tea. So, in this case, knowing that it was common practice to change the plan, I started to tell my friends, slightly tentatively, ‘Actually, I think I’m going to have a green tea’. I decided that informing them was the polite thing to do, since the plan was to have coffee. And they didn’t respond oddly to me, because after all, people often discuss what they are going to order, and they had no way of knowing that I was taking the coffee thing literally.

So, in all these years, I never realised that I was taking something non-literal in a literal way, because nothing out of the ordinary happened in our conversations to make me think I was misunderstanding. It was actually only a few days ago, in a conversation with someone who pointed out that a mutual friend on the spectrum takes literally the concept of going out for coffee, that I realised that is what I was doing too. That ‘going out for coffee’ actually really means ‘going out to a place which sells coffee and other drinks, and having whatever drink you feel like having’. This is actually quite a revelation to me. I also don’t like it – it’s inaccurate! I do not want to say ‘I’m going out for coffee’ when I’m intending to go out for tea. But then ‘going out for drinks’ really means ‘going out for alcoholic drinks’ (another non-literal phrase that took me quite a while to figure out!) so I can see that from a conciseness point of view ‘Going out for coffee’ is an economical – albeit inaccurate! – use of words.

Another thing about non-literal language that I’ve noticed lately is that when I am tired or unwell I am a lot slower to grasp even the most obvious metaphors. I observed this as I was reading Facebook updates a while ago, at a time when I was extremely tired. Someone had updated that she was ‘sorry to hear’ about a former teacher of hers. Now, while nothing about death was mentioned, I decided after a quick analysis of the sentence that the teacher must have died – because ‘sorry to hear’ doesn’t, in my experience, tend to have any other meaning in the absense of further details. The next sentence, however, totally confused me and made me think that he couldn’t have died after all. It included the words ‘rest in peace’. Surely, I reasoned, she wouldn’t be telling someone to rest if they were dead, nor wishing them peace. It is living people who rest and experience peace. So this person was clearly alive. So what was my friend sorry about?

I reread the status a few times trying to figure it out, and after a while I remembered that ‘rest in peace’ is an expression used to pay respects to dead people. It’s an expression I’d learnt outside the context of literal meaning – I’d observed first it as RIP, learnt that it was short for ‘Rest in peace’ and simply taken it as a phrase, all by itself, for dead people.  Seeing it in the context of a Facebook paragraph, rather than as a single three-word phrase, had confused me, because in paragraphs I take each word individually. Had I not been tired I’d have no doubt figured it out a lot sooner – but having such an experience of language when I am tired is useful to me because it shows me in slow motion how I process language, and I can analyse the steps.

I don’t see this difficulty as being specifically about non-literal language, but more about difficulty integrating all the layers of language. People focus on the non-literal aspect when describing ASDs, but I think it would be more useful to look at it in terms of multitasking and integration of layers. It’s a sort of economy, when processing takes so much effort, to discard of the layers that are not absolutely necessary.

It’s not that we are incapable of understanding non-literal language, body language, facial expression, etc., but they each require an extra level of deliberate concentration, as the autistic brain doesn’t naturally integrate them all together. (Incidentally, if I watch a movie with the sound muted, I observe every little detail of facial expression and body language.) So the act of not making that extra deliberate effort and act of intense concentration is a way of conserving energy. Basically, a trade-off. Yes, you miss out on nuances and it can cause misunderstanding and bad feelings, but if you are generally understanding basic meanings and functioning, is it always worth expending more of your very limited energy supply to search for layers of meaning that provide the nuance that makes social interaction more graceful? For me, sometimes it is, but a lot of the time it isn’t. It involves exhausting constant hyper-vigilance, which isn’t good for the body or mind. And frankly I would much rather be a loner with a couple of friends and be able to relax and have energy and focus, than expend all my energy and be constantly hypervigilant to acquire many friends and great popularity.

The levels of ‘why?’

Yesterday I was talking to a friend who also has Aspergers, and we were discussing the purpose of diagnosis.

I was saying diagnosis only has meaning if you can get support as a result. For myself, although I’d felt sure for years that I had Aspergers, I never felt the necessity to get a diagnosis until a couple of years ago, when I needed specific support at college and a diagnosis was the only way to get it. So my diagnosis was a means to an end.

For my friend, however, her diagnosis meant more than that. She explained that she’d always known something was wrong, and she’d wanted to know the cause of her problems – she’d wanted an answer, an explanation.

‘But then no one knows the cause,’ I said. ‘There is no explanation.’

‘Yes, there is,’ she said, looking surprised. ‘Aspergers. My diagnosis gave me the answer.’

‘Yes, but I mean no one knows what exactly is going on in the brain. Aspergers and autism are just labels for a set of behaviours, rather than an explanation. No one understands exactly what Aspergers really is. So there is no answer.’

We were both approaching the question from different levels. For my friend, knowing that she had a certain condition gave her the answer she was looking for.  For me, knowing I had a condition simply presented more questions. I want more than a label. I find it frustrating to know that I have a neurological disorder/difference that researchers don’t understand and don’t even agree on! I want to know exactly how my brain works, and what is going on in my brain that is different from non-autistic brains, to enable me to find strategies to deal with the difficulties Aspergers presents, and to make the most of my strengths.

One interesting piece of research I became aware of a few years ago is a brain study by Uta Frith, focusing on executive function (this is about the ability of the brain to organise and control one’s behaviour – to start things, to switch from one thing to the other, etc).  As organisation is a major difficulty for me, I was pleased to find something concrete on it. The results of the study showed that people on the autistic spectrum have disruptions in neural connections, particularly between the part of the brain that looks at the big picture (top-down processing) and the part of the brain that looks at the details (bottom-up processing). I have found a short YouTube video where Uta Frith talks about this research here:

This immediately made sense to me, because I can look at the big picture, and make an intricate plan of action, and I can also focus on details, but I have great difficulty doing both simultaneously, and also switching from one to the other. So once I’ve made a plan, I find it very hard to switch from ‘big picture’ mode to the nitty gritty details of carrying it out. And conversely, once I’m focused on the little details, I lose the sense of the big picture.

Lately I’ve been thinking more and more about Aspergers in terms of neural connections and integration. It seems to me that all the behaviours of ASDs could be explained in terms of connection disruption. For instance, take difficulty multitasking – connection disruptions in the brain prevent the autistic person being able to focus on more than one thing, or to switch easily and rapidly from one thing to another. And then take sensory integration difficulties – connection disruptions in the brain mean the brain can’t integrate sensory information smoothly. I realise (with frustration!) that ‘connection disruption’ is very vague, but to me it at least provides some kind of basic framework for understanding myself, and is more specific than a label of Aspergers.

Anyway, what I want to do in this blog is to talk about my own experience of Aspergers. In the absence of any real understanding of what is going on neurally in the brain, I can talk about what is going on subjectively in my mind. And I can relate this to the idea of neural connection disruptions and consequent multitasking difficulties, and various theories and research that I read about. And perhaps I can address the question of ‘why’ on some level – the level of ‘I behave like this, and have this difficulty, because this is what is going on in my mind.’ It is at a subjective ‘mind’ level, rather than at a more scientific ‘brain’ level. But perhaps in some ways the mind level is more useful from a more practical perspective of understanding what it’s like, subjectively, to be on the autistic spectrum.

I know there are other levels of ‘why’ too – the ‘why me?’ level, and the existential level of whether there is any higher purpose in the fact that someone is on the spectrum. I don’t think this blog will deal with such questions, because I don’t really see it in those terms. Not that I don’t think in spiritual terms – I have a strong faith in God, and I do think a lot about spiritual things, but I don’t see it in terms that God specifically chose for me to have Aspergers for a particular reason. I just see it that he makes everyone different, and that each person has their own particular strengths and challenges, and that given a situation is what it is, it is up to me to make the best of it, and find strategies.

I actually don’t see Aspergers as an innately bad thing – it’s who I am and I like who I am. I would like to have better organisational skills, and I wish I didn’t become dizzy under fluorescent lights, but I enjoy my focus on detail and my quirky perspective on life. You know, I lined my toys up as a child, I spent hours looking at books that had pictures of all the types of flowers, or trees, and I memorised huge chunks from movies – all these ‘symptoms’ of Aspergers – and I enjoyed every moment! Those things are really not the same kind of ‘symptoms’ as, say, getting unpleasant blisters with chicken pox! I did also find people very confusing, found school pointless, got into trouble because I spoke to teachers as if they were my equal, and would easily get very angry and confused and upset. So my childhood was a mix of good and bad. But then I see life as a mix of good and bad, and the older I get, the more I see this is the same for everyone, and I really don’t feel disadvantaged. Well, in some areas, I am at a disadvantage, but then in other areas, I’m at an advantage.

However, I am very aware that the majority of people don’t really understand what it’s like to be on the autistic spectrum. An advantage that neurotypical people have is that they are the default – the norm – to which the world is catered, and by whom the world is interpreted. So I’d like to be able to explain what it’s like to be on the spectrum, from my perspective, just as other people on the spectrum explain it from theirs. I’d like to be one of the Asperger voices explaining what it’s like from the inside.

An introduction of sorts

One thing I liked about The Curious Incident of the Dog in the Night Time was the font. It was incredibly easy to read, being sans serif, as opposed to the serifed font used in the vast majority of books.

Fonts on a screen have different effects, and the general consensus is that serifed fonts are easier to read on paper and sans serif fonts are easier to read on a screen. However, I find sans serif easier to read on both paper and the screen.

A few years ago I decided to google about the font in The Curious Incident of the Dog in the Night Time, to see how other people had reacted to it. I came across an interesting Guardian article (click here to read it), which talks about the font, and how the simplicity of a sans serif font makes it uncomfortable to read, in the same way as being inside the nuance-free mind of an autistic narrator is uncomfortable and unsettling. So the font, according the author of the article, works as a stylistic device to mirror the discomfort created by being thrust into an autistic mind.

I found this quite intriguing, as I had found the experience of reading the book remarkably comfortable – both the physical aspect of the font, and the cognitive aspect of being inside the head of an autistic character. But then, I’m on the autistic spectrum, so I guess I would.

This blog entry isn’t really about font, nor about The Curious Incident of the Dog in the Night Time. It’s about my wondering quite how to approach the project of writing a blog about Asperger Syndrome.

Do I take you for a ride inside my mind, with all the odd twists and turns it takes? How uncomfortable would that be? Would it alienate readers who are not on the autistic spectrum? Or do I try to translate myself into language that is easy for people who are not on the spectrum to identify with? And how possible is that? And to what extent do autistic minds and non-autistic minds really differ anyway, compared with how much we have in common? Was The Curious Incident of the Dog in the Night Time really such an uncomfortable experience for people to read, or was it more that the author of the Guardian article was coming up with clever parallels?

I am wondering aloud – or rather in text – because I don’t have answers for these questions. I am eager to start my blog, and am aware that starting a blog involves an introduction. A nice organised introduction, explaining exactly what my blog is about and what it will cover and all that. Except I’m not organised, and I while I have in my mind clear snippets of details of this blog, the overall picture eludes me. So instead I share my questions. Life is more about questions than answers to me. Questions are more interesting, because they always create more questions.

Anyway, welcome to my Aspergers blog. Any ideas and suggestions are welcome, because I would like this blog to be useful for both people who are on the autistic spectrum and those who aren’t.