The happy aspects of Aspergers

JM has asked me this:

‘You write so lucidly about what it’s like to be different. Atypical, for lack of a better word. Are there ways being different has been advantageous for you? Things you like about it, are glad of?’

This question made me happy, because there are so many truly wonderful things about having Aspergers, but somehow I’ve never written about them, because I’ve been focusing on raising awareness on how to deal with the more difficult things. And then the other day I found out that a group of autistic people on the internet have decided to make 30th April a day for flash-blogging about the positives of being on the autism spectrum – see here. So I decided to coincide my answer to this question with that date, so I could join in.

I actually know a few people who say they wish they didn’t have Aspergers. This has never been something I’ve wished for myself, despite all the difficult aspects, because I actually love being being me. And I see there are many things I experience with so much more richness than people who are not on the spectrum.

Take sensory experiences, for instance. Now, I’ve written quite a bit about sensory difficulties – being hypersensitive to sensory stimuli can be very difficult and overwhelming. But it can also be absolutely heavenly. When I go for a walk in the woods, for instance, the smells, the sounds, the green colours, totally absorb me and exhilarate me. When I walk into a Lush shop (shop that sells handmade soaps with lovely smells) my face actually lights up – I feel myself smiling – and I go round the shop smelling each and every type of soap and bath bomb, in utter delight. Totally absorbed – no thought of anything else but the delightful and wonderful smells.

Today I ate a meringue, filled with cream. Meringues are a multisensory experience for me – there is the taste, which I love, and there is the texture – the crunchy melt-in-the-mouth feel that I love – and there is noise of the crunching, that fills my ears and soothes me. Awareness of anything else vanishes, and all I am aware of is the blissful experience of eating a meringue. It sounds daft as I write it – I can’t begin to explain how delightful it is. Have you ever seen the movie Snow Cake? Signourney Weaver plays an autistic woman, and she is asking a guy who is staying with her if he’s ever had an orgasm. Somewhat taken aback, he replies ‘It has been known’. Sigourney Weaver – or Linda, as her character is called – is lying contentedly in the snow, eating handfuls of snow. She replies blissfully ‘It sounds like an inferior version of what I feel when I have a mouthful of snow.’ Now I don’t eat snow – I live in the south of England, where snow is a rarity – but I know exactly what she means. I’ve never had an orgasm – I’m asexual. No interest whatsoever in sex. But when people describe what it’s like, it pretty much does sound like an inferior version of the sensory pleasures I experience.

A friend of mine recently drew my attention to the fact that I seem to experience things as they are happening – rather than feel pain from things that are not happening, which apparently most people do. And I thought about this, and realised that I can only really feel one thing at a time. I can only truly focus on one thing at a time. Right now I am focused on writing this entry. I am remembering my conversation with my friend, so I can write about it. The words and images are whirling around my mind, and I am putting them here into some kind of order. I am not thinking about other things, and not feeling hurt from unpleasant things that have happened to me. Today was a bad day at work – I remember that now as I find something to illustrate this point – but I am not thinking about that, or feeling bothered about it. I focus on one thing and experience it completely. I could of course focus on my bad day at work, instead of writing this entry, and then I would feel upset, and that upset would be the only thing I was feeling. But instead, I can choose to focus on something positive and my mind becomes totally absorbed by that.

I don’t know if that made much sense, but it’s something I really appreciate, because it allows me to enjoy small pleasures with my whole being. Like a child. I identify more with children than adults, because they seem to enjoy things with the same intensity and whole-heartedness as I do.

And then there is my ability to analyse things in detail. Interestingly, quite a few people criticise this. ‘You should stop analysing and just enjoy life!’ they say (clearly not grasping my enormous capacity to enjoy life). I get a bit irritated when they say this, to be honest, because actually I can’t just stop analysing. I don’t process things instinctively – because of my Aspergers, my brain doesn’t do this. I have to analyse. If I stopped analysing, life would cease to make sense – and not in the superficial way that people might say ‘Oh, but life often doesn’t make sense – just go with the flow.’ People who say this have a deeper capacity to make sense of things even when some things aren’t quite clear to them. Bu for me, life would cease to make sense in a much deeper way. I wouldn’t be able to function. I need to analyse.  Telling me to stop analysing is pretty much like saying to someone in a wheelchair ‘Oh you should chuck away your wheelchair and just enjoy life!’

But the fact that I need to analyse doesn’t stop analysing being incredibly enjoyable for me. In the same way as a wheelchair is freeing and empowering for someone who can’t walk, so analysing is freeing and empowering to me. The feeling of analysing is like working out a puzzle, and as the parts start to fall into place, I feel the satisfaction of solving a puzzle – but it’s multiplied greatly because this isn’t just a puzzle one does for a hobby. This is working out life. It’s vitally important, so incredibly rewarding to work out.

And then there is my memory. I have an incredibly detailed memory, which causes people to do a double take and say ‘How on earth did you remember that?’ I remember every book I read – I remember intricate details of the characters, the plot, and even whereabouts on the page something is written. Now when I tell people that this is one of the positive aspects of Aspergers for me, they are quick to point out ‘But not everyone with Aspergers has that sort of memory.’ Yes, I know this. Everyone with Aspergers is different – not everyone has the same sensory difficulties as I do – and oddly no one jumps in to say ‘Ah, but not everyone with Aspergers has those sort of difficulties’ when I talk about my sensory difficulties. It’s only for the positive aspects – as if I shouldn’t be talking about them. But you know what – yes, not everyone with Aspergers has a detailed memory, but I do, and I love it. I may not have developed such a memory if I hadn’t spent all my childhood reading – to be honest, I think the special skills that come with Aspergers are generally created by our hyperfocus and perseveration – spending huge amounts of time on things that non-autistic people simply don’t tend to spend the time on. But as it is, I loved reading as a child, and read all the time, and derived great joy from knowing that once I’d read a book, it was inside my head forever. And now as an adult, although I don’t have the time and the energy to read as much as I did as a child, I still read, and I still remember, and I still love it.

Something I’m very aware of is that the way I write sounds quite methodical and unemotional. This is not because my entire experience of life is like this, but it’s because when I write, I am using the left side of my brain, which is methodical and rational. That is the side of the brain that language is on. The emotional, intuitive side doesn’t use language. And while non-autistic people have a lot of links between the left and the right side, so that emotions can come through their writing, people on the spectrum don’t have so many links – the links are disrupted. So, when I’m having a deeply emotional experience, or a deeply sensory experience, there are no words. That’s why it felt weird trying to put these experiences into words – I’m selecting words like ‘wonderful’ and ‘bliss’ and realising these words don’t come close to what I experience. And I realise that, because of this, it’s actually incredibly hard to put these happy aspects of Aspergers into words.

However, I have tried to do so, and hope this makes some sense. The things I have written about are some of the reasons I love being me – love having Aspergers. My enthusiasm and focus might make me seem strange to non-autistic people, but I wouldn’t want to switch.

Thank you – and invitation for questions

I would just like to write a quick post to say that I have not abandoned this blog. I’m aware it’s been eight months since I updated, and it seems like the longer I leave it, the harder it is to update. I have so much I’d like to write about, but I have found it hard to find the energy and focus, because my life has been very busy and full of change lately.

Thank you to all who have left comments. I really appreciate knowing that people have found this blog useful, and  feel surprised and grateful that people are still reading this blog when I haven’t updated for so long. This make me feel very motivated me to keep writing. I have several topics in mind to write about at some point, but right now, because I want very much for what I write to be relevant and helpful to those reading, I would also like to invite readers to ask any questions you want to ask, or suggest any topic within Aspergers you want me to write about. I’ve not done this before, so I’m not sure exactly how it would work, but, depending on the response, I might write an entry where I post people’s questions and try to answer them, or devote an entry to a topic that someone wants me to write about.

The day the world turned green: thoughts on theory of mind

One thing that can be frustrating about having Aspergers is the stereotypes people associate with it. People on the autism spectrum apparently don’t have ‘theory of mind‘ – that is, we are apparently not able to realise that others have different minds from ours and might see things differently from how we see them. This is pretty daft – if we were really unable to realise this, we would never bother speaking to anyone, because the very act of speaking to someone assumes that the person we’re speaking to does not already have the knowledge that we are sharing. And there are plenty of people on the autism spectrum who speak, and who want our voices to be heard.

Our minds do work differently, but it’s more subtle than this. Multitasking is difficult, and switching from one mindset to another doesn’t come automatically. So we may not automatically think about the fact that other people see things differently when we speak to them – this is a skill that we learn differently from how neurotypical people learn it. But this doesn’t mean we don’t know in theory that others have different minds. This knowledge can be worked out by logical deduction.

I remember working it out when I was five years old. I was lying in bed early one morning. I’d woken up, but the rest of my family hadn’t, so I was lying and thinking about the world, as I often did. I was thinking about other people, visualising people as lots of dots in space, and realising that I was one of these dots – just one dot in many. And I was thinking about how, if I was one of those other people, I would not have the inner landscape that I had – I would have a completely different inner experience. It was all visual to me – I didn’t know the word ‘mind’, but I was visualising my inner experience, as a sort of vast landscape inside me, and visualising everyone else having separate ones. And realising that no one else would ever experience my inner landscape – they each had their own. That I would never switch to be someone else and experience theirs, and they would never switch to me and experience mine. I didn’t have words to express these pictures and patterns in my mind – the words that I used to express it to myself were ‘I’m me and everyone else is them, and this will never change’. I kept repeating this to myself, and my mind felt like it was hurtling into some vast infinity that was exciting and terrifying and too vast to grasp fully.

There were many things I was somehow sort of aware of, through images in my mind, but had never put into words. Many people on the autism spectrum say they always knew they were different. I was definitely always different, but it was not something that I had defined as a concept, or put into words. Mostly in my mind was confusion about other people and how they operated.

And really, if you experience life very differently from others, and you don’t have the ability to consciously conceptualise and define this feeling, ‘theory of mind’ is going to be rather different for you from how it is to neurotypical people. More challenging.

I found a story I wrote when I was 9 years old. Our teacher had told us to write a story, entitled ‘The day the world turned green’. So I wrote a story, just making it up and not thinking much about it, but as I reread it now, I see the concepts my mind was somehow unconsciously grappling with as a child – if you are experiencing life differently, is it because there is something wrong with you, or is it because there really is a reality out there that others aren’t seeing? Two separate realities? How can you convince others of this when their minds don’t see it? And wouldn’t it be lovely if one day it all changed and we all saw things the same. I have decided to post my story here, in the hopes that it might shed some light into the way a child on the autism spectrum can experience life. For confidentiality, I’ve changed the names of my sisters to Amy and Lucy (which are not their real names). And for authenticity, I’ve left the writing exactly as it was, complete with two spelling errors.


The day the world turned green

One morning, when I woke up, everything was green. I was very surprised and a bit scared. I got up and looked out of the window and everything was green, even the sky. I thought that I was dreaming. I got dressed and went downstairs. Mummy was making breakfast. I asked her why everything was green and she said that everything was not green. I was very surprised and told mummy that I really must be dreaming but mummy said that I was not. I began to be really scared. I went upstairs and woke Amy up. She was cross at first but when she saw that everything was green she was surprised and asked me why everything was green. I said that I did not know. I woke up Lucy and she started to cry. I asked her why she was crying and she said that she had something wrong with her eyes because everything was green.

We all went down for breakfast but Amy ran upstairs again, screaming. I asked her why she was screaming and she said that she did not want green breakfast. Lucy and I did not want green breakfast either. Mummy thought that we were playing a trick on her and she was cross and made us eat it. “Ugh, it tastes green,” I said and Lucy and Amy agreed. “Mummy it’s true,” said Lucy. In the end mummy believed us and took us to the optition. But he said there was nothing wrong with our eyes at all. “But everything is green,” I said. Mummy slapped us and said that we told naughty fibs. When we were going home I noticed a green thing in the sky. When we got home mummy switched on the television and told us to watch it and not to tell more fibs. On the news it said that a green flying saucer was flying around making some people see green and not others. We told mummy and she was sorry she had not believed us. The next morning the flying saucer gone and we could all see propely.

Just to add, apologies for such a long break before updating this blog. I’ve been incredibly busy with college, and also rather exhausted and unwell, due, interestingly enough, to college staff not realising/believing that my sensory experiences are different from the norm, and that I really do need a few reasonable adjustments! The idea that some people have a completely different sensory experience is quite alien (no pun intended!) to quite a lot of neurotypical people, it seems – and it does make me wonder… if we Aspies were the majority, we may well be questioning their theory of mind abilities!

Rounders – the perspective of a 7-year-old with Asperger Syndrome

When I first started this blog, I asked:

Do I take you for a ride inside my mind, with all the odd twists and turns it takes? How uncomfortable would that be? Would it alienate readers who are not on the autistic spectrum? Or do I try to translate myself into language that is easy for people who are not on the spectrum to identify with?

I’ve tended to do a bit of both. I think that now, as an adult, with so much awareness, I’ve learnt to automatically translate myself into NT language.

But today I’ve written something pretty much in Asperger language – it’s a childhood memory, of which I was reminded today, and it occurred to me that it might be useful to write here, to show the Asperger perspective in a situation where people simply don’t ‘get it’ (and where I quite genuinely didn’t ‘get it’ either). Hope it’s not too alienating…

I am seven years old and at school. Mostly school means sitting at a desk and copying things from the whiteboard, which I can’t see very well, so sometimes I write things down wrong. I am slow at writing, so the words get rubbed off before I’ve written them all down, so then I get confused and lost, and I draw pictures instead. Our teacher is a man with a bald head, and when people say ‘That’s not fair’, he says ‘Life’s not fair’. He once hit a boy on the head with a Bible, which means he is a bad man, but he is never bad to me. I don’t think he knows who I am. He never notices that I’m confused and not writing what’s on the board. He only likes to talk to the boys – the clever boys who are good at maths, and have finished all the maths questions from the board, so he thinks of harder maths things to teach them, and they boast about who finishes first.

There is another teacher, who is a woman, an angry ugly woman with a hard face who looks like a bulldog. She likes to make fun of me. She makes us go outside, and it is often cold and always confusing, because I never know what we will have to do, even when she tells us. Often she chooses two people to choose everyone else, in turn. No one wants to choose me but eventually they have to because they run out of people. I don’t want to be chosen. I don’t like this game. It makes no sense. Everyone wants to be on the batter team, but I like to be on the fielder team, because then you get to just stand there and do nothing. Well, you are supposed to do something with the ball sometimes, but I don’t know what.

Being a batter makes me scared because someone throws a ball at me and I have to hit it with a heavy long piece of wood called a bat, but although I move the wood towards the ball, the ball just goes past it. This is called a miss, and people get annoyed with me for missing and they think I’m stupid. I’m supposed to hit the ball, but I can’t. I try, but it doesn’t happen. I can’t see where the ball is going, because it goes too fast, and I don’t have time to make the bat go to the exact place where the ball is going at just the right time. Other people can do it, but I don’t know how.

When I’ve missed the ball three times, I have to run. This is confusing. There are people standing by bits of wood sticking out of the ground, and I have to run to them and hit the wood with my bat. There are rules about running to different bits of wood and then stopping. If you keep running when you’re supposed to have stopped, that’s bad. If you miss the ball, you just run to the first one, which is easy, but the next person after me might hit the ball with the bat and might run to lots of wooden posts, and then I have to run too, but I don’t know when to stop. If I do it wrong, people shout at me. If the person behind me runs fast, I have to run fast, and I am not a fast runner, and I get scared because it’s like I’m being chased and people shout at me to run faster.

So I like being a fielder. Well, I don’t like it, but it’s better than being a batter. I don’t stand by a piece of wood in the ground. I stand far away in the field (that’s why it’s called a fielder). They make me stand far away, because then I don’t have to do anything, and then I can’t get it wrong and make them lose points. They all want to win, and they get upset if they don’t win. If I do things wrong, they won’t win. It doesn’t make any difference, though, who wins, because then we all go back and get changed and have to go back into the classroom and sit at our desks again and write things from the board. It is the same if you won or if you lost.

Sometimes, if you are a fielder, even if you are far away, you might have to do something with a ball. The angry bulldog teacher tells us that just because we are fielders, that doesn’t mean we always do nothing. The ball might come to us. This is confusing and I always hope that I will not have to do anything.

One day, I am a fielder, and the ball lands near me. I don’t care about the ball, and I don’t know what to do with it, but everyone else cares and everyone else knows what to do with it, so I let them get it. But they run around looking and they can’t find it. I don’t know why they can’t find it – I know exactly where it is, hidden there in the grass but you can see it in between the blades of grass. Why aren’t they finding it? They run around and look and shout. Sometimes they think they find it but they don’t. They say it’s lost. Then someone says to me, ‘Did you see it?’

‘Yes.’ I point to it. ‘It’s there.’ I am pleased to share my knowledge and do something useful in the game. They will be happy now, to know where it is, and that it isn’t lost.

People look at me and shout at me. They shout at me, angry, because I was standing there and I knew where it was and I didn’t tell them and I didn’t pick it up. They tell me this was wrong and bad. They ask why I was standing there. Because I am a fielder and fielders stand there. They ask why I didn’t tell them the ball was there. But I did tell them. They ask why didn’t I tell them before when I could see they were looking for it. Because they didn’t ask. I thought they would find it. They tell me I should have thrown the ball. That I should have picked it up and thrown it as hard as I could. I didn’t know that. Next time pick it up and throw it hard, they say. Well, some of them say that. Others mutter ‘Idiot!’

A few weeks later, I am a fielder again. The ball lands near me. This time I know what to do. I pick it up and throw it very hard. I don’t care about the ball, but I want to do the right thing, and I don’t want to be shouted at. I am pleased that I know what to do now.

People are shouting at me again. I don’t know why. I threw the ball. What were you doing, they ask. I was throwing the ball. I’m supposed to throw the ball. The ugly teacher says to me in her hard voice, making fun of me: ‘Where did you think were you throwing the ball to?’

‘I don’t know,’ I say. I was throwing it. How could I know where it was going to go?

Now people are telling me where I should have thrown it. It makes no sense to me. It’s about the pieces of wood in the ground. This piece of wood? I ask. Or that one? No, it will be different each time. It is about the person running.

This is too complicated. I don’t understand.

Next time the ball lands in the grass near me, I ignore it. I won’t help them this time. It’s a silly game.

 

It’s odd – obviously now as an adult it makes more sense to me, but I can clearly remember the confusion I felt. And even though I now understand intellectually, I still can’t understand emotionally the enthusiasm people feel about hitting a ball and running around, or why people get so emotional about winning or losing when there are no rewards.

Anyway, I also wanted to say I’m aware I haven’t updated this blog in a long time. I am very busy with college, and find multitasking hard, and so at the moment updates are infrequent. I hope to make them more frequent when I am less busy.

Strategies for dealing with sensory overload

Happy New Year to all.

I have decided to write about strategies that I use – strategies that I have found effective in dealing with some of the challenges of Asperger Syndrome. Everyone has strategies for dealing with life and its challenges, because everyone has their own difficulties, but the challenges for people with Asperger Syndrome can be different from those of people who are not on the autistic spectrum. Also, because our minds work differently in some ways, the strategies that work for us might be different from the strategies that work for most people.

In the past I spent a lot of time reading self-help books for dealing with certain difficulties, and would get quite frustrated that the methods they suggested weren’t helpful for me, or that their explanations for the cause of certain difficulties simply didn’t apply to me. So, since I started reading about Aspergers, I started trying to work out strategies that would specifically suit the way that the autistic brain works, and I have experimented with all kinds of strategies for myself.

I must point out that what works for me will not work for everyone on the autistic spectrum. We are all different. But maybe some of the strategies will work for some people, or will give people ideas for finding their own strategies.

At first I was thinking of doing a big list of all the strategies I use, but then I decided it would be more organised to divide Aspergers up into the different sorts of challenges it presents, and the strategies I have for each of them. Recently I did a talk on what it’s like to live with Asperger Syndrome, and I found it useful to divide it up into three categories as follows:

  1. Sensory integration difficulties
  2. Difficulties with multi-tasking
  3. Difficulties with organisation

I will write a separate entry for all three. This entry shall be about the first challenge. For me one of the biggest challenges of Asperger Syndrome is difficulties with sensory integration, which can result in sensory overload. Some examples of this are:

  • I am hypersensitive to noise, so that too much loud noise can actually feel painful, and feel like it is intruding into me.
  • When lots of people are talking around me, at the same time, such as in a pub, I get overwhelmed and start to zone out, and can’t make sense of any of it.
  • Fluorescent lighting makes me feel dizzy and unwell, and I can start to shake and sweat. When the lights are turned off, I can feel a tangible difference – my whole body relaxes, and I feel a huge sense of relief, even if I hadn’t been consciously aware of the fluorescent lighting.
  • I have a hypersensitive vestibular system – I could never go on merry-go-rounds as a kid without feeling very unwell. I would fall on the ground after getting off the merry-go-round and be unable to stand up for a while. As an adult, I get this feeling to a lesser extent in buses and sometimes in cars, from the motion, particularly in areas with winding roads.

Here are the strategies I use to help with sensory overload:

  • Plenty of rest – making sure I get enough sleep each night, and taking a whole day to rest (in quiet and darkness) when I’ve had a day which involved a lot of sensory input. I find being tired increases my sensory hypersensitivity, and makes me a lot less able to tolerate it.
  • Baths and swimming – the sensation of water is very helpful to me. I have at least two baths a day, which people tell me is very extravagant and a waste of water, but for me it’s a very helpful strategy so I don’t see it as wasteful. I think it is partly the light pressure of the water on my body and the sensory feeling of the wetness which helps me. Also with swimming there is the positive feeling of doing physical exercise. I like to go in the steam room too, which I find a bit uncomfortable when I’m in there, but it makes me feel very refreshed afterwards.
  • Light pressure – when I realised that light pressure helps, then I found all kinds of other ways to do it. I wear clothes that provide a light even pressure over my body, like leggings, tights, tight-fitting polo-neck tops. I find the pressure that is right for me, and I find it has to be even – if an item of clothing is tighter in one area, then that is uncomfortable. I also tuck my duvet tightly into my mattress, so that it creates a light pressure over my body, and this helps me sleep better. I got this idea from reading about weighted blankets – weighted blankets are expensive, but tucking your duvet into your bed is free. But it’s important to get a duvet that is a size bigger than your mattress for this to work effectively – I have a double size mattress and a king size duvet.
  • Massage – this is another form of pressure. I occasionally go for massage therapy, but this is quite expensive, so more often I will massage myself, as this doesn’t cost any money. I mix aromatherapy oil with olive oil and I massage myself all over when I get out of the bath. I sit on a towel on the bathroom floor and massage myself, starting with my feet and going all the way up to my face and head.
  • Scented candles/oils – I am hypersensitive to smell, which can be a good thing if it’s a smell I like. For instance, I really like the smell of lavender, and find it very soothing, so I like to pour a few drops of lavender oil into my oil burner. I like to get scented candles and incense sticks too, but I always make sure to get a smell I like.
  • Irlen lenses – my glasses have Irlen tints. These are quite expensive, and I was lucky that my disabled student allowance paid for them. However, just ordinary tints on your glasses can be helpful – they are obviously not as specifically tailored to your needs as Irlen lenses are, but before I had my Irlen lenses, I got glasses with ordinary tints on from the optician – the tint cost £10 – and this made a huge difference from having no tint.
  • Cranial osteopathy – this is quite expensive, so I don’t have it very often, but when I do have it, it is really helpful for me, and particularly helps with dizziness.
  • Theta waves and alpha waves – this is something I have recently discovered and which makes a huge positive difference. The brain has different waves:

beta waves – your brain wave frequency when you are alert
alpha waves – your brain wave frequency when you are relaxed
theta waves – your brain wave frequency when you are drowsy/falling asleep
delta waves – your brain wave frequency when you are sleeping deeply

It turns out that there is a theory the autistic brain gets stuck on high beta and is in a state of constant hyper-alertness. Being constantly in high beta can lead to anxiety. Listening to alpha waves or theta waves gets the brain to align to these waves, and can be relaxing and soothing. I discovered this quite by chance, before I’d even heard of all the different waves. I was trying out listening to various hypnotism albums, to see if they could help me become organised. There was one that I liked to listen to every day, even though I thought what the guy was saying was a bit daft – I found it very relaxing because of the pulsing noise in the background, which he said was theta waves. So I listened to this every day for a couple of weeks and found myself feeling a lot more balanced and I noticed I wasn’t getting the acute abdominal pains that I normally get. So then I googled theta waves and found the information about the different types of brain waves. I also discovered that SMR waves (which are low beta) are recommended for people on the autistic spectrum, so I started listening to those too, and I find they help a lot with sensory overload. I found MP3 tracks on Amazon, which turned out to be very good value for money – for 79p you can often get a track that lasts for an hour or longer.

So these are my strategies for sensory overload. I do not understand the science behind them, and can’t say that they will work for all autistic people, and they may indeed cause more overload for some people, but they are what I’ve found to be helpful for myself, through trial and error. If anyone else has other strategies they use, please do share them in comments.

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.