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.

What it’s like to receive an Asperger diagnosis as an adult

Today I want to write about something a bit different. So far, my method of writing about what it’s like to have Aspergers has been by interpreting situations that were confusing at the time in the light of what I now know about Aspergers. I’ve been analysing and interpreting my life, in the hopes of helping others with Aspergers understand their own lives, or the lives of those they know with Aspergers.

Today I want to write Aspergers from a different perspective. To write about what it’s like, as an adult in one’s thirties, to receive a diagnosis, to disclose it, and to thus suddenly have the label of ‘Asperger Syndrome’ and consequently ‘disabled’ attached to oneself.

It is a strange experience. A couple of weeks ago I gave a short presentation on ‘What it’s like to live with Aspergers’, as part of an autism awareness training thing that the NAS were doing. And when I was planning my presentation I realised that what the question really meant, for me, was simply ‘What is it like to be me?’ And then it was a question of differentiating which parts of me are different from ‘normal people’ and which parts are just parts of being human – which is quite an impossible task.

Some people are born with an obvious disability, and grow up knowing they’re disabled. Other people may have an accident at some point in their life, and then become disabled – with a clear differentiation of what life was like before and what it is like now. Neither of these apply to me. I’ve grown up being simply me. I’ve felt a bit weird, and found life confusing, and found other people hard to understand – but my understanding was simply that life is tough, and maybe tougher for some than for others. So I never understood these things in terms of me being disabled in any way. In my mind, disabled people were a category which didn’t include me.

I actually first read about Asperger Syndrome when I was about 19. It was just starting to get media attention as a form of autism. I read an article in the Times newspaper, and felt indignant. I knew it was describing me. I knew that some people didn’t like me being the way I am, and that they wanted me to be more sociable, just because they were sociable. I thought it was most egocentric of them to want everyone to be like them, and I was highly indignant that an even bigger ‘they’ had now decided (as I saw it) to define people who were different from them as having a ‘syndrome’.

So I dismissed the article with contempt and didn’t think about it any longer. At least not for several years. Then, as I worked in health care jobs and in schools, I came more in contact with the idea of autism and started to read about it. And I realised from what I read that I clearly had Asperger Syndrome. But it still didn’t mean anything to me – because although what I read described me perfectly, I didn’t actually have a diagnosis, and therefore the label didn’t apply to me. And it didn’t have to, because I didn’t need a diagnosis.

However, there came a point where I realised I actually did need a diagnosis. I’d gone back to college, and realised that it was very different from what it was like when I was 18. Partly because teaching styles are different, partly because rules are different, partly because of intense fluorescent lighting, and partly because I was doing a very different sort of degree from the one I did at 18. I found myself becoming unwell with sensory overload and stressed with confusion, but when I tried to ask lecturers to alter things a bit for me – such as to have one row of lighting turned off, and to put the powerpoints on the intranet ahead of time so I could read them beforehand, and to let me have regular appointments with them where I could ask questions to make sure I understand exactly what I was supposed to be doing – they were very unwilling, and saw me as being difficult and demanding. And so I got a diagnosis, got it approved by the NHS, and suddenly I was a disabled student, and I could get a needs assessment, and a disabled students allowance.

And in many ways it was great. The lecturers were more understanding of my needs, I was allowed to switch to part time attendance, they put powerpoints up ahead of time, I got a support worker who I could see every week to help me with organisation, and I got Irlen lenses and a laptop with software that makes the screen easier to read. All that was fantastic, and made a huge positive impact on my experience of college. I began to enjoy it, to understand what I was learning, to do consistently well in assignments and exams. I no longer felt constantly overloaded and exhausted. All that was wonderful.

But in other ways it was not quite so great. In smaller, less immediately noticeable ways, that sort of creep up on you. Although I’d known for ages that I’d had Aspergers, a diagnosis somehow makes it more real. Also, observing how the support I got made such a difference to me made me realise that actually, yes, I am kind of disabled. I didn’t know things could improve this much – and the improvement really highlights to me how bad things were before, even before I was studying. The amount I was struggling was not normal. And this makes me more aware of my weaknesses, my difficulties, my vulnerability. And that is a bit scary – especially when I think of the future, and how I will cope with old age, when I may not have the energy to maintain all my coping strategies.

Also, telling people I have Aspergers can be an odd experience. Quite a few people get a sympathetic look in their eyes – as if I’d told them I was dying or something! I do not want sympathy – I’m just trying to explain who I am and how my mind works, so people can understand me. The sympathy seems to create a ‘them and us’ feeling, which makes me a bit uncomfortable.

With people who’ve known me for years, such as family, then a different sort of issue arises. They’ve always known me as a non-disabled person (weird, yes, but not disabled) and I haven’t changed, so the conclusion that some of them draw is that clearly ‘Asperger Syndrome’ doesn’t really exist, because I’ve gone all these years without the label. Some see it as a potential ‘excuse’ – my dad told me quite openly that he didn’t want me to have the label of ‘Asperger Syndrome’ because I would use it as an excuse not to tidy my house. This quite bewildered me; I replied to him ‘Dad, in all these years that I haven’t had a diagnosis, my house has always been untidy. So, even if I did use it as an excuse, how is my label of Asperger Syndrome going to change anything?’

Then there are the people who have known me a little, and to whom I’ve always seemed quite ‘normal’ (I’m fairly good at faking ‘normality’ when I don’t know people well) so they refuse to believe I could possibly have Asperger Syndrome, because in their mind people with Asperger Syndrome sit in a corner and rock, or have a certain air about them that I don’t have.

And there are the people who say ‘Oh, what you are describing is normal – I get that too. Everyone gets it.’ I’m not quite sure what to make of that one – I mean, of course my experiences won’t be totally alien to non-autistic people, because we are all human beings and so we share the human experience, so it’s surely a matter of degree, and the fact that I have to rely more on certain mental processes because the others don’t work so well. Or are they saying that I am describing normality and pretending it’s a disorder? In which case, surely they’d have to write to the people who write up the DSM, as they are the ones who define disorders, not me.

Of course, not everyone responds in these ways. Many respond in a positive, open way, and want to learn more about Aspergers to understand me. A few, who already had quite a bit of experience with people on the autistic spectrum, have told me that they’d guessed that I had Aspergers, or that it doesn’t surprise them in the slightest. Everyone responds differently – and that itself can be quite nerve-wracking, because it’s hard to predict how people will respond, or whether I should tell them.

So, although in many ways getting a diagnosis has been a very positive experience, there is also something quite exhausting and disspiriting to be landed with a diagnosis when you’re well into your adult life, when you’ve already developed a whole host of strategies and behaviours to fake ‘normality’, and when people have known you for quite a while without this label attached to you. Particularly as Asperger Syndrome simply wasn’t around as a diagnosis until relatively recently, so it seems to many people to be a newfangled meaningless thing. They see it rather as I saw it when I first heard of it – that people have decided to invent a disorder to explain away people who are different. Except many see it, as my dad sees it, that people have invented a disorder to ‘excuse’ certain behaviours which would otherwise be unacceptable. Which I find rather daft, since I’ve always turned myself inside out trying to figure out what appropriate behaviour is and to imitate it. I make mistakes – but I’ve always made mistakes. It’s not like I suddently started making them because my diagnosis has given me an excuse. I’m making them for the same reason I always did – because I genuinely find it difficult to always understand what to do.

I guess I’ve used this entry to have a bit of a moan! But I wrote it because I realised that I was having a lot of conflicting feelings about my diagnosis, and I wanted to explain them – because it dawned on me that the experience of having Asperger Syndrome isn’t just about the traits of Aspergers, such as taking things literally, having difficulty with multitasking, having sensory sensitivity, etc. It can also be about the whole experience of having a label, how that label influences your self-image, how others respond to that label, the effect of others’ responses on you. And I imagine people with different labels can also relate to what I have written here, particularly labels to ‘invisible disabilities’ – because having Asperger Syndrome doesn’t make me an alien species! I am human, and I write about the human condition, and in particular how it is experienced by me, a person on the autistic spectrum.