Echolalia and hyperlexia as stages of language development

Children with Asperger Syndrome are said to have abnormal language development. ‘Echolalia’ and ‘hyperlexia’ are two ‘symptoms’ that are often mentioned. ‘Echolalia’ means repeating what another person is saying, with no evidence of comprehension, and ‘hyperlexia’ means reading exceptionally well and fluently for one’s age, but with poor comprehension.

Well, although I remember learning to read quite clearly (and I did indeed have a reading age which was way above my chronological age) it’s hard to remember learning language as a whole. I don’t remember learning to understand and speak spoken language, although I remember specific incidents of learning specific words and phrases. My mind has developed now – as an adult I understand what I read and hear, so long as I focus.

So I’ve decided to put myself into the situation of learning language from scratch all over again, by starting to teach myself Italian. Of course it’s different – I already know English (and bits of other languages) so I’m not learning the concept of language from scratch. I understand Italian in the context of what I know of English. And I’m learning Italian in England, where I’m surrounded by English speaking people, so of course it’s artificial. But I’m teaching myself by exposing myself to the spoken and written language, through podcasts and Italian literature, and seeing how much I absorb. I’ve read the pronunciation rules, which are very straightforward compared with English. And I do a few Italian lessons online, or from CDs, but the vocabulary I have so far is very basic.

And here is what I find. When listening to Italian podlasts, I find myself repeating various phrases. I have no idea what they mean – which is quite normal at this point, I think, because I doubt anyone would start understanding a language just by listening. But I automatically repeat the words, because I like the feel of them on my tongue, and the sound I make. I actually have no desire, at this point, to understand. I just like the sound and the feel. I also listen to Italian songs and memorise them, with no comprehension. I just like to sing them. With the Italian novels, I read them aloud. I have got the hang of Italian pronunciation, on the whole, and I love to read Italian out loud and to increase my fluency. Again, I have no idea what any of it means, other than the occasional word, but that is absolutely fine. At this point it would be too confusing to also be grappling with comprehension, because my brain can only focus on one thing at a time.

And so it seems to me that actually ‘echolalia’ and ‘hyperlexia’ are the most logical, efficient ways for an autistic person to learn language. We only process things one at a time. We don’t multitask. And we start from the details and move up to the big picture. Meaning is the big picture. Any ‘between the lines’ meaning is even bigger picture. The actual shapes of the words themselves – the consonants, the vowels, the patterns – this is detail, and this is where we start. While neurotypical people start with the big picture and move towards the details, people on the autistic spectrum work the other way around.

Temple Grandin points out that driving a car is only multitasking when you are learning to drive. Once you’ve learnt, then it’s automatic, and you can focus on the road. And I think the same is true of language to some extent. With the English language, when I read, I don’t have to sound out each phoneme as I did as a very young child. I recognise words automatically. Listening can be harder, because of all the variance in how how people produce words in different contexts and with different accents, but when I focus, I can do it. I don’t have to analyse each phoneme to grasp the word, nor do I have to analyse each word to hear meaning. Most of it is automatic, and what my brain actively work on is the overall meaning, and any meaning in between the lines (as this is not automatic). But with Italian, nothing is automatic yet, and so I can only concentrate on one aspect at a time. I hope, as I continue to learn, that the details will become automatic, and I will eventually learn to grasp the big picture and understand what I read and hear.

So I don’t believe that hyperlexia and echolalia are, in themselves, negative things. They are stages in language development for many people with Asperger Syndrome, and essential stages, I believe. It’s possible to get stuck in a stage – and particularly for people on the autistic spectrum, for whom switching from one thing to another is very difficult – but that doesn’t mean that the stage itself is bad. In fact, I’d speculate that trying to hurry a child out of a stage, by making him focus on comprehension before he’s ready, could be harmful.

So I will continue learning Italian by listening, repeating and reading without comprehension, and I will observe what happens.

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.

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.