Asperger Syndrome and fatigue

A couple of years ago, a guest lecturer came to college and gave us a lecture about Asperger Syndrome. Of course, I already knew all about Aspergers, so I sat there internally nodding and smiling, as I recognised all the things that were talked about, and found it half-amusing and half-disconcerting that what we were learning about potential clients actually applied to me too, and that I knew more about it than what was being taught.

Then the lecturer said something that made me stop and think. She said that people with Asperger Syndrome experience a great deal of fatigue, because they are always conciously processing things with their intellect, as their brain doesn’t do it automatically.

Now, in all the books and articles I’d read about Asperger Syndrome, none of them had mentioned fatigue. Many had talked about the act of processing things by intellect, but none had talked about this causing fatigue. But now this lecturer mentioned it, it made so much sense – and explained so much.

Fatigue became a huge part of my life when I lived in Canada for a few years. I went there at age 21, after completing my first undergraduate degree. Before that, I’d been a very solitary person, not really having a lot of awareness of what was going on around me, and not really needing to. I spent my time reading, in a world of my own. But when I was doing my undergraduate degree I started to realise that I wouldn’t survive in the world if I continued like this. I needed to learn social skills. So this is one reason I went to Canada, so I could have a new start, in a different country, and try to learn how to be social there.

In fact, being social almost became a special interest. In the five years when I was in Canada, I put my energies into socialising with anyone and everyone. I had observed social people when I was at university in England, so I tried to imitate their behaviour when I was in Canada. I put aside my books, and people became my focus. I was chatty, jokey, and took any opportunity to go out to various social things. I found it quite new and exciting – I’d never done this before, so it was fascinating to observe how people responded to me. I enjoyed analysing everything and trying to work out social norms, although I often found people very confusing.

I realised that I had a big advantage in being a foreigner, because I could tell people that I was from a different culture and ask them to let me know if I was being rude in any way. People explained the etiquette of their culture to me, which was useful, and they often excused all kinds of oddities and faux pas on my part, because of the fact that I was foreign – an eccentric Brit, as they saw me.

I found it fascinating and fun, but after a while I noticed something strange started to happen. I would get incredibly tired throughout the day. I’d go out with friends and find myself falling asleep instead of chatting. If ever I went to anyone’s house, I would invariably fall asleep on the sofa.

Now, I am not very good at being aware of my bodily needs. This is something that can sometimes happen with the autistic spectrum – difficulties being aware that you are hungry, for instance, or that you are tired. But my tiredness had finally got to such a threshhold that I couldn’t be unaware of it – especially not when I was actually falling asleep during the day, every day, despite having had more than enough sleep at night. I went to the doctor, convinced that something was wrong with me, but blood tests all were normal.

The tiredness only lessened when I spent a lot of time alone. I observed the same when I returned to England. The jobs I chose were all working with people – because I wanted to learn how to do this – and whenever I had days off work, I would spend the time alone at home, completely exhausted, sleeping a lot. I made myself do overtime a lot, to save money, and would get even more exhausted, and often have to take time off sick, because I would become dizzy and unwell from the mental overload.

I didn’t understand what was happening. I went to the doctor and asked what was wrong with me, and told him I want to be able to do overtime without getting sick, and he just shrugged and said that some people’s constitutions are such that they can’t do that. This had never occurred to me. I thought that if others could do it, so should I be able to. And it did seem to me that my tiredness was not normal, compared with other people.

Of course, I don’t know the experience of other people’s tiredness, only my own, but I know for myself that when I’m very tired I seem to be shaking internally, and my brain seems to stop functioning. I notice this happening when others seem to be functioning fine, and they are merrily chatting with each other and making jokes and doing all sorts of communicative things, whereas I have stopped communicating, or limited it, because it’s too much work. But of course, such communication isn’t hard work for other people, because it’s automatic for them. If the task were switched, and we were given algebraic or geometrical problems to solve, by ourselves, in a silent, darkened room, then maybe others would be tireder than me.

Anyway, in my life I have pushed myself very hard, because there were always lots of things I wanted to do. But it seemed I never managed to get done even half of what I wanted to. I never managed to get up as early as I’d planned in the mornings, or to do what I’d planned to do during the day. I thought it was because I wasn’t trying hard enough – that I was lazy.  I knew what I wanted to be doing, and it seemed to me it was possible to achieve it (I made neat little timetables of how I wanted to use my time) and yet I never did.

It’s really only in the last year, since I’ve switched to part time at college and have a support worker, that I’ve come to realise that I don’t have the same energy levels as most people, and to accept that I need more rest and that it’s okay to have days where I do nothing – in fact, it’s essential. I’ve realised that the following things cause me a lot of fatigue:

  • fluorescent lighting
  • noise
  • too much going on around me
  • interaction with others, particularly those I don’t know well
  • travelling
  • change – different, new situations

Often I don’t notice the fatigue at the time – it’s afterwards, when I’m back home in my house, in the quiet, by myself, that I realise how exhausted I am from a day at college under fluorescent lighting, interacting with others.

Because I am part time now, I am very fortunate that I don’t have to go into college every day, so I can spend the following day resting. And so I can manage my tiredness. I felt horribly guilty about this at first – I would tell my support worker gloomily that I’d wasted a whole day when I should have been studying. But she would tell me that actually it’s good for me to have a day resting, and that this is the reason I am part time, because I don’t have the same energy levels as others, and I need to rest. So I have gradually come to accept this need to rest as part of my life, and I try to make sure I rest so I can manage my fatigue levels.

I do still struggle with all this a bit. There is so much I’d like to do. My brain is very active and full of ideas and curiosity and a desire to learn, and it really feels like a waste of time to spend time doing nothing much. But I know that this fatigue is a real limitation of mine, and I have to accept it and work around it, or I’ll exhaust myself completely and then won’t get anything accomplished at all.

It seems bizarre logic that to achieve more I have to rest more. But, bizarre as it is, I have found it to be the case, so I know it’s something I must go along with. And then, the more I rest, the more I am able to put my entire energy into interactions with people – because it does take a huge amount of energy and focus, to take in all the subtleties as well as the big picture, to express myself in an appropriate way, and then, ironically, to hide the fact that it is taking so much energy (because people don’t like to see the effort – they get uncomfortable if they think you are ‘intense’ or ‘trying too hard’)! Pretending to be normal is a tricky business!

How lack of expression can lead to assumptions of ignorance

Today I was reading a blog post written by a mother of a child on the autistic spectrum. She was saying for several years she thought her child didn’t ‘get’ Christmas, but recently her child said something that made her realise that she had ‘got’ it all along. The child had simply never before expressed the fact that she’d got it, so the mother didn’t realise that she actually had.

This made me think about my life, and how there have been quite a few times when I’ve said something, and people have looked surprised and expressed in some way (either through words or behaviour) that they now realised that I had a lot more understanding and insight than they’d thought.

I imagine it has happened a lot more than I realise, especially when I was a child and I had less awareness of how people were reacting to me. The first example I can think of is when I was 14. I didn’t understand physics lessons at school. We had a rather dithery physics teacher, who was nearing retirement, and who had difficulty explaining physics and difficulty controlling the class. I will call her Mrs Short, which is not her real name.

Mrs Short would spend ages doing experiments which we had to watch, and then nothing would happen, and she would tell us they hadn’t worked. I would be completely confused, because I had no idea what was going on or what I was supposed to be learning. I didn’t pretend to be interested in the class, because such pretending had not even occurred to me at that age.

Mrs Short found me stupid and rude. She’d found a piece of paper on which another pupil and I had been exchanging written notes, and I’d written that I found physics boring. Mrs Short, having found the note, interrupted what she was teaching us and announced to the class that I apparently found physics boring.

‘Is that right?’ she asked me, in a loud dramatic way. ‘Do you find physics boring?’

Totally oblivious to any implications of my answer, I answered truthfully, ‘Yes.’

The class was amused. Mrs Short was not. She said with a tight voice: ‘Well, I’m sooo sorry that the class isn’t interesting enough for you.’

Looking back, I imagine she’d been expecting me to be embarrassed and to deny it and apologise. However, at the time, I was unaware of any such expectations, and also unaware that I’d done anything wrong. I wasn’t embarrassed in the slightest, because I didn’t see any shame in being bored.

After this incident, Mrs Short went out of her way to try to humiliate me in physics lessons. She would mock me whenever I asked questions, whenever I did anything wrong, whenever I didn’t understand what I was doing (which was most of the time). I observed this, and tried to analyse it in order to understand it. I worked out that Mrs Short must hate all students who write notes to each other in her class – but then that didn’t quite make sense, because Mrs Short was being quite friendly to the other girl who had written notes to me. So maybe my note was worse in some way – maybe because my handwriting was messier or something. Or maybe she hated people who didn’t understand physics.

Then one day, in a physics lesson, a girl from the other science group knocked on the door and asked if I could be excused and come to the nurse’s room, because my sister was there and asking for me. Mrs Short said yes, so off I went. This girl told me that my sister’s best friend had died, and my sister was upset, and she had wanted me to sit with her. So I went and sat with my sister for a while, and talked to her and said things to help her calm down and to comfort her. And then, when my sister was calmer and had stopped shaking, then I was sent back to the physics class. I went back into the classroom and sat down in my seat. It didn’t occur to me that anyone would want an explanation, but then everyone was asking if my sister was all right. So I explained to them what had happened, and that my sister was upset, but that I had spent some time with her and she was doing a bit better now.

And after that, Mrs Short stopped making fun of me, and was friendly to me. Not just in that lesson, but in all subsequent lessons. I observed this change in behaviour and tried to work it out logically. My first logical deduction was that Mrs Short liked people if their sister’s best friend died. But I observed too that she was extra nice to a girl in the class whose mother had died, so I expanded this interpretation and wondered if having some connection to death made Mrs Short like you more. Maybe she was quite a morbid person, I decided. (See how it is very hard to understand people when you are on the autistic spectrum and you have to analyse each behaviour like this to work out a pattern! As an adult you have more understanding from more experiences, but as a child, you have no wider context from which to understand such things.)

Then, on parents evening, I found out the reason for Mrs Short’s change in behaviour. My mother went to parents evening and reported back to me what the different teachers said. Mrs Short apparently told my mother that she’d originally thought I didn’t care about anyone or anything, and that there wasn’t much going on in my head, but then something had happened which surprised her and showed her that I was a responsible, caring person, and she was very impressed with me.

I was quite astonished by this. I didn’t understand why my behaviour was so surprising – of course I would go and sit with my sister when she was upset. And besides, my relationship with my sister had nothing to do with physics lessons. So I still had a lot of confusion with cause and effect here.

But in retrospect I realise that it was one of many occasions where people assume that I lack understanding or feeling, because I haven’t actually explicitly expressed to them this understanding or feeling. With Asperger Syndrome, body language and facial expression tend not to be very revealing of what is going on inside – I know for myself, I have to make a conscious effort to express appropriate reactions and feelings in my face and voice. And this is something that for many years I simply didn’t know I had to do.

So if my face and body are not expressing anything, and I’m not verbally telling people what I’m thinking and feeling (because it doesn’t occur to me that they want to know unless they ask a specific question) then people may assume that not much is going on inside my head. And if an autistic person never realises this, then the assumptions can last their whole life.

In fact, recently I’ve really been coming to understand more clearly the importance of expressing my awareness and understanding and feelings to people, because people feel more comfortable with you and can trust you if you have conveyed who you are and what you are thinking and feeling, and how you make decisions. I will probably write more about it in future blog posts, because there are many more examples.

I realise that this example here actually illustrates more Asperger issues than I’d originally realised. These are different from the main issue I was trying to illustrate, but I’ll list these too. I think this example also shows that people with Aspergers can have difficulty with:

  1. realising that people don’t always want you to tell the truth (it took me a long time to work this one out, because no one actually ever admits that they don’t want you to tell the truth)
  2. understanding why being bored could offend people (how I saw it was that being bored was simply an experience inside my head – the idea that anyone would take it personally was beyond me)
  3. trying to understand other people’s behaviour and motivations when they don’t explicitly tell you (if Mrs Short had taken me aside and explained exactly why she was upset with me – well, if she’d explained numbers 1 and 2 of this list – then things would have been much easier for both of us)

So there are a lot of potential confusions when you are on the autistic spectrum.

On the one hand, if I don’t let people know in some way what I am thinking and feeling, they will assume that I am not thinking or feeling, or that I am thinking and feeling something quite different, and potentially quite sinister.

On the other hand, if people don’t let me know what they are thinking and feeling (and in a far more explicit way than they may think necessary) then I get confused. I don’t assume, which is the difference. I try to work out logical patterns.

So in conclusion, I’m realising that there is actually a need for both sides to be more explicit. But since I am the ‘different’ one, I probably have to take the initiative, and as well as sharing my own thoughts and feelings, I also need to explain to others that they need to be more explicit and direct than usual in explaining their thought processes to me, and not to assume I will understand things that they haven’t said.

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.