Having, being, and individuality

It’s been a very long time since I’ve updated, but today, at 5:30am, I feel suddenly inspired to write a post.

Firstly, I want to write about the whole ‘I have autism’ versus ‘I am autistic’ thing. I see a lot written about this – a lot of people on the autism spectrum are against using ‘have’, arguing that it implies that autism is something external to them, rather than being an intrinsic part of who they are.

While I have every respect for those who hold that opinion, and I understand the thinking behind it, I have found I continue not to mind ‘have’ for myself. I will happily say ‘I have Aspergers’. I prefer not to use ‘Aspie’, because, while I have no problem with others using it for themselves, I find to my mind it diminishes it into something cutesie and cool – some ‘in-club’, rather than an actual diagnosis. My overall preference is actually neither ‘I have Aspergers’ nor ‘I am autistic’, but ‘I am on the autism spectrum’. Not because of the ‘am’, but because it draws attention to the fact that it is a spectrum. And I prefer ‘autism spectrum’ to ‘autistic spectrum’ because, as a friend once pointed out, the spectrum itself isn’t autistic! It is merely a scale to describe autism.

As for why I don’t mind ‘have’, well, I like to study linguistics, and I observe that ‘have’ and ‘am’ really don’t have these very neat, black-and-white different meanings. They both can be used in a wide variety of ways. I can say ‘I am angry’ and ‘I have a calm disposition’. If I examine which of those is the one that describes who I intrinsically am, ‘I am angry’ tends to describe an emotion of the moment, whereas ‘I have a calm disposition’ describes how I am in general, and is far more defining. Many people use as a reason for ‘I am autistic’ the fact that we say ‘I am female’, rather than ‘I have femaleness.’ But I’d be equally happy for ‘I have femaleness’. I observe that while English uses ’am’ to desribe age (‘I am 30 years old’, for instance), French uses ‘have’ – ‘j’ai 30 ans’ (I have 30 years). And both mean exactly the same. While there is part of me that wishes the verbs ‘to be’ and ‘to have’ were less messy, less ‘all over the place’ in their meanings and usages, I don’t think realistically that could ever be the case. So, for myself, I’m happy to say ‘I have Asperger Syndrome.’

I think this is important to point out, not to undermine those who are not happy to say that – their preferences should of course be respected – but to illustrate that we are all different. There is no archetypal autistic person, just as there is no archetypcal neurotypical person. While we have in common the way that our underlying brain ‘wiring’ works, we are still (of course) all very different in temperament, interests, preferences, etc. I really can’t emphasise this enough – it is so frustrating to meet someone who happens to know someone (or several people) on the autism spectrum and assumes from this to understand me and know exactly what my preferences are! ‘Oh, you don’t like hugs then’ is a very common reaction when I tell people I have Aspergers. Actually, I love hugs – if they are from someone I know and like and trust, and if they ask before hugging me, so I know to expect it. Yes, some people on the autism spectrum like hugs. The most important thing is never to assume. Ask the person.

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.

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.