Sensitivities and food intolerances

I’ve decided in this entry to answer two questions which are sort of related:

1. Do you have any allergies to metal? by Shawna

2. I’m really interested in your food intolerances: what kinds they are, when and how they occurred, whether you have some medicines that help, etc. And I’m interested if you can tell something about it in general, because I didn’t find any details, I just heard somewhere that malabsorption is a symptom of Asperger’s. by Noemi

Regarding metal, I am guessing that means if I touch or wear metal, as opposed to consuming foods with, say, iron in. I am not aware of any specific allergies, either in eating or in touching, but I actually find it very uncomfortable to wear anything hard, like metal, against my body. So I decided several years ago so stop wearing jewellery or a watch – not that I wore them very much anyway, but when I wore them, I was always uncomfortable. I also find it very distracting – if I wear a necklace, or a bracelet, I fiddle with it constantly. I don’t seem able to simply forget that it’s there.

I think this is quite common with the autism spectrum – it’s part of not being able to filter things out, and as a result being hypersensitive. I try to wear clothes that are comfortable and even – exerting even pressure on my whole body, as opposed to having tight bits around the edges. I also avoid wearing belts if I can – I prefer trousers or skirts that are elasticated.

Regarding food sensitivities, I do have quite a lot of them, although I’ve never had them officially tested. I tend to experiment to see how different foods affect me. I’ve heard that the safest foods – the foods that are the least likely to cause an adverse reaction – are lamb, pears and rice, and that it’s a good idea to start with those and then add other foods one at a time, to see how your body reacts.

 

I find it can be hard to keep track of, because my body has a lot more sensitivity in the two weeks before my period – a lot of foods then cause me severe abdominal pain. But, at that time, lamb, pears and rice are indeed okay, so I buy a lot of them! I find eggs and bananas and avocados are good too.

 

But there is a different sort of sensitivity that happens all the time – a more low-level type, that can easily get mixed up with other sensory sensitivity, because it has the same sort of effect. Things like my mind feeling fuzzy or overwhelmed or having difficulty focusing, my body feeling like it’s full of electricity, as if it’s buzzing and quivering inside. It’s taken me a long time to realise that this is affected by the food I eat, but I realise now that it definitely is.

 

I don’t yet have all the answers – it’s something I still experiment with to some extent. But here is what I’ve found. In order for my mind to feel calm and alert and focused, and for my body to feel calm and non-quivering, I need to observe the following dietary principles:

 

1. Try to avoid food with artificial additives and processed food
2. Eat a lot of fresh, natural food – such as fruit, veg, eggs
3. Eat raw, unsalted nuts and soak before eating them
4. Eat small portions

The bit about eating small portions is something I’ve come to realise only more recently. I enjoy the sensory pleasure of eating, and I can easily eat too much. I know it’s very common for people to eat more than they need – but my body and mind really do seem to function significantly better on a minimum amount. 

It can actually be hard for me to know when I’m full or when I’m hungry. This is quite common for people on the autism spectrum – to find it difficult to recognise bodily cues. As a child, for instance, I used to often not realise I needed the loo until I was about ready to burst, and then I would often wet myself, because it was too late. I learnt to simply go to the toilet at regular times, to avoid this happening. Often, too, it’s not until I’m sitting quietly writing my thoughts and feelings in order to process them that I realise I’m tired, for instance. I think this is to do with the difficulty the body has filtering things out – I feel everything. My body is full of sensations, so it’s hard to filter out which ones are meaningful, and what they mean. However, I notice that when I eat less, it’s much easier to identify when I’m hungry and when I’m full – my mind and body feel clearer, somehow.

I know I have to be careful saying this, because eating too little can also be harmful. When I say eating less, I don’t mean eating less than the body needs. For me, it’s been more a case of trying to work out how much my body needs. If I am feeling tired and weak, that is not a good thing. But I can feel tired in a different way from eating too much, so I need to find a balance.

I also find it helpful to occasionally have a day or two of fasting, or eating only fruit and veg. This might be seen as strange, as it’s not a common thing in our culture, but it’s something that has been done traditionally in various cultures and religions, and I notice that it gives my body a rest and helps me sleep more deeply, so it is something I like to do occasionally.

People on the autism spectrum can have difficulty with sleeping. I find I sleep very lightly, and can wake up just as tired as when I went to bed. However, when I eat simple, natural food, and eat small portions, I sleep a lot better and am more refreshed when I wake up.

I know that it is quite common for people on the autism spectrum (especially children) to have a gluten-free diet, and sometimes casein-free too, so I should say something about this. My diet is not gluten-free or casein-free. I tried gluten-free once, a couple of years ago, just to see if it would help. I didn’t do it for very long – only a month or two – but what I noticed was that I was still getting abdominal pain with the gluten-free processed foods, and that I didn’t like the texture of gluten-free pasta, and that in general, I found myself feeling grouchy and irritable. I didn’t feel more well or more alert or anything like that. And I found it quite exhausting and depressing to be checking everything I wanted to eat to see if it had gluten in it. Perhaps if I’d done it for longer I might have seen good effects, but I have actually found much better effects on my well-being by simply eating simple, natural foods, including some food with gluten, such as pasta and bread. I am not of course saying my experience will be the same for every autistic person – I can just report on my own experience.

Regarding casein, I actually cut out milk from my diet years ago, simply because I never liked milk, and so it occurred to me in my early twenties that now I was an adult, I didn’t have to drink it any more. And I observed I felt a lot more well in myself once I cut milk out of my diet. However, I continue to eat cheese and yogurt, and have never observed any bad effects from them. I find yogurt helps my digestion, and as for cheese, I simply love cheese.

Something that helps me when I get bad abdominal pains from food is to drink hot water with a couple of drops of peppermint oil. I regularly buy little bottles of peppermint oil from Holland and Barrett.

I have actually started another blog, over on ‘Blogger’ (I wanted to try a Blogger blog, to see how they compare to WordPress) about my attempts to eat simply, and to live simply and frugally. It’s still very much in its initial stages, and is probably more useful to me than to anyone else so far, because it’s helping me track the food I buy and what I eat, and experiment with what works and what doesn’t work. But if anyone’s curious to have a look, the link is http://simplicityandsolitude.blogspot.co.uk/.

As you will see, I don’t always stick strictly to my own rules – I do eat processed food sometimes, especially when it’s on special offer. I find it hard to stick very strictly to a very simple, natural diet. I love crisps (potato chips), for largely sensory reasons, and I’m very aware they don’t have a good effect on me, so it’s a constant struggle for me. Therefore, I try to be a bit flexible in my diet, and not too strict, because I know from experience that if I’m too strict with myself, then I’ll end up rebelling and eating lots and lots of crisps! So I try to be realistic too.

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!

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.

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.

On being approached by an autism fundraiser

The other day, I was in the city centre, and ahead of me I saw a young woman who was literally leaping out at people with outstretched arm to shake their hand, and saying with forced cheeriness: ‘Hi! How are you today?’ Of course people were leaping out of her way, so she looked rather like a frog leaping about from one person to another and being rejected each time.

Seeing that she leapt at every single person passing her, I realised my turn was approaching, and was about to leap out of her way myself. However, then I saw that her t-shirt said ‘National Autistic Society’. So I felt some affinity for her, or at least for the cause she was representing. So I changed my mind and took her outstretched hand and shook it when she leapt at me with her forceful ‘Hi! How are you?’

‘I’m okay thanks,’ I said. ‘How are you?’

There was a pause, as she looked rather taken aback that someone had actually taken her hand and replied to her greeting. Then she said, ‘Hello. Er… have you heard of the National Autistic Society? You probably haven’t, because most people haven’t, but-’

Her voice had taken on the tone of a person reciting a long chunk of information that they have to convey, so I interrupted, ‘Yes, I’ve heard of it. I have Asperger Syndrome.’

She paused, looking rather taken aback, and then, in amazed tones, she replied, ‘Oh wow! That’s so amaaaaazing! Because you, like, actually approached me and shook my hand!’

In retrospect, I am amused that she interpreted my not leaping out of the way as she leapt towards me as my ‘approaching her’, but at the time I didn’t even think of this – I was too busy trying to work out what was amazing about my shaking her hand. Plenty of autistic people shake people’s hands – it’s a formal social convention that is quite a bit easier to understand than all the more informal nuances of small talk. So I just replied, ‘Yes.’

‘Did you have support to learn how to do that?’

‘Um, no – I taught myself.’ I wondered what sort of hand-shaking support course she imagined I’d been on!

‘That’s amaaazing. Do you get support?’

‘I’ve taught myself strategies over the years.’

She then returned to her memorised speech. She started telling me about the tragedy of all the autistic children that people aren’t aware of, and how some of them go through school without even making a friend. She made her voice hushed and her eyes look all big and tragic when she said this.

‘Because we all know how important friends are when we’re in school, don’t we,’ she said, looking at me imploringly. ‘I mean, if you think back to your school days, you know friends are essential – we wouldn’t get through school without friends, would we? We all need the support of our friends to get through school.’

I looked at her a bit blankly. I couldn’t exactly nod, as I’d got through school with no friends, so she wasn’t saying anything I could relate to.

‘Did you have lots of friends when you were at school?’ she asked me, in a sort of confiding voice, as if we were best friends.

I didn’t want to be a killjoy, but hey, she’d asked directly, and I don’t do lying. ‘No, I didn’t have friends,’ I said.

She didn’t seem to know what to say to that. There was a pause, and then she embarked on another part of her memorised speech – this time about all the autistic people who were depressed and suicidal, and how autism makes people commit suicide. Again, I looked rather blankly. At this point I wasn’t sure if this was supposed to be a warning to me – that suicide was to be my eventual doom! – or whether she’d once again forgotten that I was on the autistic spectrum too, and was trying to get me to feel bad about all those poor autistic people out there!

I think she eventually realised that her speech wasn’t having a lot of impact on me, so she then said that her main point was that she wanted people to give money to help autistic people, and that I could just give a small amount each month.

I told her that I’m a student and so not in a position to give any money, but that I do my bit for autism awareness in other ways, like writing a blog! She thanked me for my time, and we went our separate ways.

I must confess, I found it rather amusing! I wondered exactly what sort of training these fundraisers are given, and whether the possibiliy that someone they approach may actually be on the autistic spectrum is ever addressed!

Echolalia and hyperlexia as stages of language development

Children with Asperger Syndrome are said to have abnormal language development. ‘Echolalia’ and ‘hyperlexia’ are two ‘symptoms’ that are often mentioned. ‘Echolalia’ means repeating what another person is saying, with no evidence of comprehension, and ‘hyperlexia’ means reading exceptionally well and fluently for one’s age, but with poor comprehension.

Well, although I remember learning to read quite clearly (and I did indeed have a reading age which was way above my chronological age) it’s hard to remember learning language as a whole. I don’t remember learning to understand and speak spoken language, although I remember specific incidents of learning specific words and phrases. My mind has developed now – as an adult I understand what I read and hear, so long as I focus.

So I’ve decided to put myself into the situation of learning language from scratch all over again, by starting to teach myself Italian. Of course it’s different – I already know English (and bits of other languages) so I’m not learning the concept of language from scratch. I understand Italian in the context of what I know of English. And I’m learning Italian in England, where I’m surrounded by English speaking people, so of course it’s artificial. But I’m teaching myself by exposing myself to the spoken and written language, through podcasts and Italian literature, and seeing how much I absorb. I’ve read the pronunciation rules, which are very straightforward compared with English. And I do a few Italian lessons online, or from CDs, but the vocabulary I have so far is very basic.

And here is what I find. When listening to Italian podlasts, I find myself repeating various phrases. I have no idea what they mean – which is quite normal at this point, I think, because I doubt anyone would start understanding a language just by listening. But I automatically repeat the words, because I like the feel of them on my tongue, and the sound I make. I actually have no desire, at this point, to understand. I just like the sound and the feel. I also listen to Italian songs and memorise them, with no comprehension. I just like to sing them. With the Italian novels, I read them aloud. I have got the hang of Italian pronunciation, on the whole, and I love to read Italian out loud and to increase my fluency. Again, I have no idea what any of it means, other than the occasional word, but that is absolutely fine. At this point it would be too confusing to also be grappling with comprehension, because my brain can only focus on one thing at a time.

And so it seems to me that actually ‘echolalia’ and ‘hyperlexia’ are the most logical, efficient ways for an autistic person to learn language. We only process things one at a time. We don’t multitask. And we start from the details and move up to the big picture. Meaning is the big picture. Any ‘between the lines’ meaning is even bigger picture. The actual shapes of the words themselves – the consonants, the vowels, the patterns – this is detail, and this is where we start. While neurotypical people start with the big picture and move towards the details, people on the autistic spectrum work the other way around.

Temple Grandin points out that driving a car is only multitasking when you are learning to drive. Once you’ve learnt, then it’s automatic, and you can focus on the road. And I think the same is true of language to some extent. With the English language, when I read, I don’t have to sound out each phoneme as I did as a very young child. I recognise words automatically. Listening can be harder, because of all the variance in how how people produce words in different contexts and with different accents, but when I focus, I can do it. I don’t have to analyse each phoneme to grasp the word, nor do I have to analyse each word to hear meaning. Most of it is automatic, and what my brain actively work on is the overall meaning, and any meaning in between the lines (as this is not automatic). But with Italian, nothing is automatic yet, and so I can only concentrate on one aspect at a time. I hope, as I continue to learn, that the details will become automatic, and I will eventually learn to grasp the big picture and understand what I read and hear.

So I don’t believe that hyperlexia and echolalia are, in themselves, negative things. They are stages in language development for many people with Asperger Syndrome, and essential stages, I believe. It’s possible to get stuck in a stage – and particularly for people on the autistic spectrum, for whom switching from one thing to another is very difficult – but that doesn’t mean that the stage itself is bad. In fact, I’d speculate that trying to hurry a child out of a stage, by making him focus on comprehension before he’s ready, could be harmful.

So I will continue learning Italian by listening, repeating and reading without comprehension, and I will observe what happens.

A night out on the town

Yesterday I voluntarily subjected myself to sensory overload. Otherwise known as a night out pubbing and clubbing.

I have never learnt the appeal of this choice of enjoying oneself, but I occasionally go when invited, because I think it’s important to share in celebrations with friends and fellow students, to show myself friendly and happy for them. I know that probably sounds a bit stuffy or disparaging, because that’s the kind of language people use when making fun of certain activities, but making fun or being stuffy is not my intention. I’m struggling to find words to express why I choose to do something so unnatural to me. I care about the people around me and want to show this – and am aware that I can find it very hard to show this. It’s very easy for me to inadvertently seem distant and aloof, and I am not good at banter, which is the way that people often show affection for each other. So choosing to go along to a social event is a concrete way of showing myself wanting to be part of the group and caring.

First we went to a pub. I had decided in my mind beforehand that I would buy the first round of drinks – because I know buying rounds is what is done when groups of friends go to the pub, and sometimes I forget or get confused as to when to do it, and if you don’t buy a round that is considered rude and looks like you’re taking advantage of people, whereas buying a round of drinks shows you’re friendly and being part of the group. I decided I should do it first, to get it over with, so I wouldn’t be worrying all night about when to do it and whether I wouldn’t get chance. So it was all clear in my mind what I would do – we would get to the pub and I would ask everyone what they wanted. I know from observation that this is how poeple buy rounds – they don’t declare it, but just ask everyone what they want. So this is what I would do.

It was all clear in my mind until we got to the pub. And then I took in the crowds of people gathered around the bar, people standing, people moving around in all directions with no clear destination, people moving then stopping, people standing then moving, people talking, shouting, laughing, and my mind felt swept away by a sense of chaos. I forced my mind to focus and realised the first step was how to actually get to the bar through the people.

The music was loud and rhythmic. I didn’t dislike it, as such, but it seemed to be pervading my body, taking away my clear sense of myself as an individual, so the boundaries between me and the music were not clear. I tried to focus on the bar, and my companions, trying to see what they were doing and following their lead. I would sometimes feel someone touch my back, to move me aside as they walked by. Every time this made me jump and took a while to process – why was a total stranger touching me? I knew it wasn’t rude. When I was younger I thought people were being rude and intrusive and it made made me angry, but I have since learnt that this is simply what people do in pubs and bars, because of the crowds, and the reduced inhibition from alcohol. They do it to everyone. People brush past people, or touch them to move them slightly, and it’s seen as normal and people don’t mind. But for me, each time it happens, I jump or freeze, momentarily shocked and distracted, losing my focus on getting to the bar.

My awareness and sense of self and general meaning became more and more fragmented. I was no longer a distinct being in my own space, with my thoughts clear. I was somehow merged with crowds and noise – invaded, violated, confused. I knew this was a pub and that people were here to have a good time, but the overall meaning of it eluded me. I didn’t – and still don’t – understand the appeal. My thought process was as follows:

Must buy a round of drinks. Must buy a round of drinks. How does that work again? Must find out what everyone wants. Where are they? How many of them are there again? Are they all here? Can I distinguish them from the many other people? They are all merging in, rather than a separate group. Okay, let me count in my mind – oh! My arm – who touched my arm? Who is moving past so quickly? Was I in the way? Must I move? Where are my friends? One’s over there – talking to someone I don’t know. Let me count – yes, I see all of them. Must ask them what they want to drink. Who to ask first? How will I remember all those drinks in my mind? It’s too loud – can’t focus, can’t hear myself think, can’t keep drinks in my mind. What if I forget and turn round to ask them again and I can’t find them, or I can’t remember whose I’ve forgotten?

To my utter relief, one friend said ‘Shall we buy rounds or just buy our own individual drinks?’ and it was agreed to buy individual ones. I focused on reaching the bar, ordering a drink, and taking it to a table with my friends.

Sitting at a table is good. Once I have a seat, I have a spot, which is my space, and no longer being invaded by strangers.  A wave of relief came over me as I sat down. I put my drink on the table and focused on my drink.

But then comes socialising. Socialising is hard anyway, but when your body and mind feel invaded by noise, and your ears are so full of noises of music and crowds that you can’t actually distinguish the separate noise of what your friends are saying, socialising reaches whole new levels of difficulty. My instinct is to zone out, because nothing makes sense, and the effort of making it make sense is exhausting, so it would be much easier to go with the flow and zone out. Then everything could just flow over me, as fragmented pieces of the world, making no sense, and not needing to make sense. But that would be rude – and defeat the whole purpose of going out with friends. So I make myself focus.

I know it’s important to make it look like I’m having a good time, to make people feel comfortable around me, and free to enjoy themselves without worrying about me, so I try to arrange my face in a sort-of smile. Not a huge smile, because to fix one’s face in a huge smile would look unnatural and creepy. So just a general happy sort of look. Even then, I’m aware of its fixed-ness, and try to alter it a bit, so it looks like I’m reacting to what people are saying. When others laugh, I laugh. I focus hard on their lips and try to lip-read. When people look at me to address me specifically, I concentrate extra hard and often say ‘pardon?’ because I didn’t understand.

I remember eye-contact. My eyes more naturally look down lower than the face – there’s too much information in the face, so when someone is not specifically talking, it’s easier to look at their clothes, which are neutral. But eye contact is important, so I make myself look at the faces, and in the eyes. As I am easily zoning out, I must avoid just staring at the eyes – must look at eyes for a few moments, then look away, then look back at eyes, then at forehead. Am I doing it right? How are people mentally responding to my eye contact attempts? I have no idea. I am sometimes aware of eyes fixating for too long, and make myself switch.

Some guy I don’t know comes to stand next to where I’m sitting, to the left of me, and talks to the girl next to me. She chats to him and they banter, not knowing each other, but able to banter. He is young and enthusiastic and fun, and she makes her eyes go big and look up at him. I try to analyse it, to make sense of it. It’s sort of a mating game, these whole bar interactions, where men come over and talk to women, and banter. Some kind of sexual thing – but yet not quite the mating game, because no one seems to be looking for a long-term mate. Just a sort of taste of it – maybe practice for future, or maybe to make them feel attractive and sexy.

My thoughts are brought short by sudden cold wetness! What happened? Everyone is shrieking with laughter. A drink has fallen over, and liquid is all over the table and all over my lap. The bantering man is apologising to the girl next to me, promising to buy her another one, while she’s saying that it’s fine. The drink is dripping from the table. I move my chair away, so the drips don’t go onto me. Everyone is still laughing and chatting about it. I remember that this drink was Southern Comfort and lemonade, and there is some satisfaction – some sense of order in chaos – identifying the exact type of liquid that is on my leggings and my legs.

A little later the friend to the right of me says that she’s getting wet. The drink has spread over the whole table and is now dripping onto her legs. The guy who spilt the drink didn’t think to wipe it up when getting a replacement drink. I don’t like uncontrollable liquid all over the table randomly dripping on different people, so I declare I will go get a cloth. I go to the bar and tell the barman that a drink has been spilt and ask for a cloth. He grabs a blue j-cloth and comes and wipes it himself. I watch the liquid get seeped up by the cloth, and also watch him miss bits. As he goes back to the bar, I see the table is no longer overflowing with liquid, but there are random islands of liquid on the table – little rings of liquid, merging together. I watch them, waiting for them to evaporate. They sort of evaporate, but sticky marks are left on the table The barman can’t have used soap. My mind focuses on the circles of stickiness – they are a good focus. Nice orderly geometrical shapes.

The pub closed at midnight, and then we went to clubs. But the description I’ve just given doesn’t really change a great deal for different settings. I had a couple of drinks, but was very careful to control alcohol intake so that I didn’t become dizzy. If I drink too much (and the threshold is pretty low for me!) then sensory overload is even harder to control, and zoning out harder to stop. My friends, however, drank quite a lot, and remained alert and cheerful and able to banter and know what was going on.

Several times I thought about the fact that my friends saw this night as a good, fun, relaxing time after the hard struggle of an exam they’d just had, and I realised that in terms of difficulty – concentration-wise, focus-wise, effort-wise – I would probably find the exam easier. I was amused by the irony of this. And yet I wasn’t unhappy – the people I was with were nice, easy-going people whom I like. Sometimes I’ve been out with people who seem to look down on me a little and can make snide comments, and this creates emotional discomfort as well as sensory discomfort. But this wasn’t the case here. There was friendliness and goodwill. Furthermore, I had made the choice to be there, and I was glad to be there, because I wanted to be with these people, and I was happy for them that they were so happy – and there was no doubt that they were totally enjoying the night out. And I wanted to be part of that – to share that with them, by being there.

I was also aware that, sensory-wise, the pubs and clubs we went to were not the loudest, and they didn’t have the intense flashing lights that make me automatically zone out. I’ve been to clubs that are so loud, with such intense flashing lights, that I’m actually unable to make myself focus, and zoning out no longer becomes an option that I can prevent by concentrating. So it was nice to have a night out where, although there was sensory overload, I was able to keep hold of some kind of focus.

And yet there remains in my mind a complete lack of understanding of the appeal of this sort of night out. Why do people choose this sort of experience as pleasure? And how does it function as a sort of relief from the stress of exams and a way of celebrating? I don’t get it at all. All I do is observe that it clearly does function in this way, and thus I speculate that the actual experience others get from this setting is totally different from the experience I get.

Perseveration and difficulties with change

It’s been a while since I wrote a blog post. It’s not that I don’t have anything to say – I’ve thought of all kinds of topics to write about, and planned them in my mind, but somehow the actual act of getting myself to sit down and writing them seemed hard. Not that I find it hard to actually write blog posts – I like to write them – but what is hard is the actual switch from whatever I’m doing to something different.

As this is a common aspect of Aspergers, I decided I might as well write a post about it – as a way of both explaining my absence and illustrating why people on the autistic spectrum have difficulties with organisation, and why the ‘perseveration’ thing happens.

I’d never actually heard the term ‘perseveration’ until I started reading about autism and Asperger Syndrome, and then I immediately knew what was being described. I can illustrate in by talking about the past couple of weeks.

Once I started doing the ’100 things’ strategy described in my last post, I became focused on organisation. I started planning my meals for the week too, which got me thinking about health, and starting to plan exercise. I started keeping a journal to keep track of all I do each day, dividing my life into various categories, such as ‘house’, ‘food’, ‘exercise’, ‘finance’, ‘relaxation’, etc. This became the focus of my life for a few days – I had to be constantly aware of it for it to work, and in order to be constantly aware of it, I had to focus my mind on it to the exclusion of all else.

Then I started going for walks in the woodlands and in the moors. This seemed a logical way of combining the categories of enjoyment, relaxation and exercise, because I really enjoy such walks. Once I started, I would walk for hours and hours, so walking became the focus of my days. I started taking photographs of the trees, because I love trees – their shapes fascinate me. My days became totally focused on woodland walks and capturing them in photographs, and then collecting these photos onto my laptop, cropping them and resizing them. I completely forgot about all other aspects of organisation, and the journal I was keeping. I just remembered it yesterday, and realised I hadn’t written in it for six days.

When I stand back from this, I feel frustrated, because although I love walking in the woodlands and the moors, I don’t want my whole life to consist of that. I also love reading novels, and had actually planned to do some reading. I always took a book along on my walks, thinking I would sit down at some point and read it. But somehow my mind just wouldn’t switch from walking mode to reading mode. I was walking and I would keep on walking. I would sit down sometimes on the walks, to have something to eat, but I wouldn’t read, because reading seemed like a completely different world. The switch from focusing on the walk and the trees to focusing on a book seemed like a vast chasm.

This isn’t to say that I can’t read when on a walk – but to do that, my whole focus would have to be on reading. I’d be oblivious to the beauty of the woodlands and countryside around me. When I was a kid, my focus was often entirely on reading. Wherever I went, I would bring a book and I would read it – read it while walking along, reading when stopping anywhere, etc. – because reading was what occupied my mind.

I’m trying to think of an analogy so people can understand the difficulty switching from one thing to another. It’s kind of like moving to another country on the spur of the moment. For most people who have lived in the same country all their lives, this would be an enormous and difficult transition – because your mind is accustomed to your own country. You have learnt to take many things for granted which would all change if you moved to another country – it would be a huge transition, and would be very difficult to just switch from your life here to moving there. Not just in practical terms, but in mental adjustment.

Interestingly, I moved to Canada for five years when I was 21, and many people said how brave I was, but to me there was nothing unusual about it, because all changes are huge for me. Moving to Canada was no different. Obviously, in practical terms, the actual act of switching from walking to reading is nothing like the act of moving to Canada. There were all kinds of complicated things involved in moving to Canada, like applying to be a student at the university, getting a student visa, organising accommodation, booking a flight, etc. – whereas switching from walking to reading just involves sitting down and taking a book out of my bag, opening it and reading it. But the difficulty is not in the practicalities of the act itself – it’s in the switching of mindset.

This is why people on the autism spectrum often develop special interests. Once we are focused on one thing, it is so much easier to keep focusing on it than to switch to something else. Something else may arise from it, as a side thing, like woodland walks arising from my focus on organisation, but it arises because of a link. It’s much easier to switch naturally to something that is somehow linked than to switch to something which is unrelated. For instance, when on my walks, I started thinking about how I’d like to read some reference books about trees and flowers and insects and birds. If I were to do that, then I would probably start focusing on reading, and then may well start reading novels again. But if I were to just pick up a novel and read it today, I may enjoy it but it would feel disjointed from the rest of my life, unless there was a central theme of my life to which the book related.

This is why life can feel fragmented for people on the autistic spectrum. We often lack a sense of overall cohesion – ‘central coherence’ – so we find one thing to focus on, and somehow everything else needs to relate to this.

Understanding this can help with devising strategies. For children on the autistic spectrum, who have various activities organised by adults, it would be helpful to find some way of linking the activities, so there is not the uncomfortable jolt of switching from one to the other. For instance, as a kid, I would never want to go to bed when it was bedtime. This was because my mind was focused on whatever I was doing, and couldn’t make the switch to going to bed, which was, to use my analogy, like moving to another country. What would happen is that my mother would get angry, which didn’t help, because it became a fight, which made me even less inclined to relax and quieten for bed.

It occurs to me in retrospect that if instead there had been some kind of link, and routine, it would have been easier. It’s hard to know exactly what would have worked, but it occurs to me that maybe if lights had been dimmed, and soft relaxing music been played, or maybe a scented candle burnt (out of reach, for safety) at a certain time, then this might have somehow prepared my mind to quieten down, and I would have started to associate these sensory cues with going to bed.

I probably could do something like that for myself as an adult too (as I still have a lot of difficulty going to bed at a regular time) – although then I’d be responsible for the cues myself, so I’d have to somehow find a way of making myself do them at the right time. I’m still trying to work this out in my mind, so I have no definite strategies, but I will experiment with trying to find something that works. Maybe having an alarm clock go off at a certain time in the evening when I want to start preparing my mind for bed time – and putting the alarm clock by my aromatherapy oil burner, as a cue for lighting it, and that could act as a cue for dimming lights. I will try this and if it works, I’ll write another post about it.