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
- too much going on around me
- interaction with others, particularly those I don’t know well
- 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!