Managing energy levels with Aspergers

A lot of people commented on my post about Asperger Syndrome and Fatigue, saying they really identify with what I was describing. And I’ve had a couple of comments asking me more about how I manage fatigue, so I want to talk more aobut that. One person, gabygarzalinde, has asked:

I was hoping to hear if your “battery” goes up and down, with regards to the amount of stuff you can do without getting fatigued? Or have you found some kind of baseline?

I found this an interesting way to think about it – I’ve never seen my energy levels as a battery before. But certainly my energy levels do vary. These are not random variations, but rather they are based on a combination of factors. This is similar to everyone, I would imagine – varying energy levels is certainly not purely an autistic thing. Those of us on the autism spectrum are  simply are more vulnerable to fatigue because of the huge amount of energy we expend in trying to process the world with oversensitive brains which don’t automatically process and filter.

I have come up with a list of things that cause my energy ‘battery’ to go down, and a list of things that cause it to go up. I will call these ‘energy drainers’ and ‘energy boosters’, respectively. Some of these will no doubt be the case for most people, regardless of whether or not they are on the autism spectrum. Others may be very specific to me. I can only share my list, and recommend that people come up with their own lists – the more you are able to monitor your reactions to things, the more you can form strategies to maximise your energy levels.

Energy drainers

  • doing a lot of different things in one day, which require constant switching of attention
  • interacting with a lot of people
  • being in a noisy environment
  • being in an environment with fluorescent lighting
  • being in a new situation, or meeting new people – this requires a lot more mental processing
  • not having enough sleep
  • eating a lot of processed foods with artificial additives
  • simply eating too much – more than one’s body needs
  • having had an unpleasant interaction with someone
  • a miscommunication that wasn’t sorted out
  • an unresolved problem in one’s life that one is thinking about
  • feeling confused about something
  • being in a hot environment

Energy boosters

  • being able to focus on the same thing for an extended period of time
  • spending time alone, in a quiet environment with natural lighting
  • having a bath, or going swimming
  • going for a walk alone in the woods
  • having enough sleep
  • having a duvet day – where you are alone and don’t go out
  • reading a novel
  • drawing a picture
  • talking to a friend who understands
  • burning scented candles

For me, a really important thing has been simply recognising that I can’t compare myself with other people. I used to feel constantly inferior, thinking to myself: ‘Why is it that other people have the energy to go to work, hang out with people after work, and then go out in the evening and stay up till 2, and then be able to get up for work the next day? What am I doing wrong?’

Actually, a nice thing about getting older is that after a while, one’s peers are also no longer able to do such things either! But when I was a teenager and young adult, so many people my age could stay up all night and seemed to have endless energy for chatting and partying!

I’ve found helpful to look at it in terms of threshholds. Things like not enough sleep, and unhealthy food, are bad for everyone, but different people have different threshholds of tolerance. There are people who can get only five hours sleep each night for a week, (or a month, or a year) and still be functioning and able to go out socialising in the evenings, and come across as full of energy. They may still feel tired, but their tiredness isn’t disabling – they can still function with it. If I had only five hours sleep for a week, I would not be able to function. My tiredness would be a completely different level from theirs, and I would become unwell.

Sadly, there is a prevalent view in society that ‘if you think you can, you can’, so the people who are thriving on, say, very little sleep, or a very busy lifestyle, are seen as being more positive thinkers than those of us who get exhausted and ill. We are apparently just not trying hard enough, not being positive enough, not embracing the ‘mind over matter’ mantra! We’re giving up too easily! When in fact, we are actually constantly expending way more energy and effort than a non-autistic person, simply to function and survive.

Interestingly, people don’t apply this same logic to those who have physical disabilities. With someone who has a bad leg, or a bad hip, people generally understand that this person won’t be able to walk so far as someone with no mobility difficulties, and that they will tire more quickly. It is not seen as a character flaw, or laziness. Same with someone with cancer – society understands that someone with cancer will easily be tired. I suppose the difficulty with autism is that it’s not a physical disability or an illness. It really isn’t understood very well at all, and fatigue generally isn’t listed as a ‘symptom’.

I had an interesting conversation with someone I met recently. We both have difficulties with fluorescent lights – hers is because she has lupus, she told me, so I told her that mine is because I have Aspergers. Her response was one that I imagine many people with Aspergers will be familiar with:

‘But you don’t seem like you have Aspergers.’

‘Well, no,’ I said, ‘but then that’s because the media portrays it in a very stereotypical way, and it’s different for everyone.’

‘No, but I know about Aspergers,’ she insisted. ‘I know a child with Aspergers, and he’s nothing like you. He doesn’t know how to interact with people. He has challenging behaviour, he fights with the other kids, he screams, the teachers don’t know how to deal with him.’

‘Ah yes, it was the same with me when I was a kid. But I’m forty now – I’ve had many years to learn strategies. My brain doesn’t automatically process a lot of things, so I’ve had to teach myself how to do it deliberately and consciously, working out strategies.’

Her response to this indicated an awareness and insight that I can only say I wish more people demonstrated. She said, ‘Wow, that must be really tiring for you.’

‘Yes,’ I said. ‘Yes, it is.’

It is rather ironic that the more a person is able to find strategies to deal with the difficulties their disability may present, the more they are seen as not really disabled. But the difference – and it is a huge difference – is the effort and energy that person is constantly expending to enable them to function on this level. Never forget that just because someone else is doing something that you find effortless, doesn’t mean they are also finding it effortless – it could be taking every ounce of energy they have. And if sometimes they are not doing it, this doesn’t mean they are being lazy or not caring – they could be simply be taking a much needed rest to restore their energy.

This can apply to socialising, and also to many other things. Spelling everything correctly, for instance, for people with dyslexia – if someone is making spelling errors in an online interaction, never assume they are being stupid or lazy. Spelling does not come equally effortlessly for everyone, and people are not obliged to use up all their energy to do something that happens to come naturally to most people. I am fortunate enough to find spelling and grammar comes naturally to me, but I am aware that this is through no particular virtue of my own, and am constantly amazed at how it’s seen as totally acceptable to judge people for whom this isn’t the case.

What if I compare it to walking with a limp? For example, if you hurt your foot, it can sometimes be possible, with a lot of effort and pain, to walk normally, without a limp, as if nothing was wrong. But that doesn’t mean you are being lazy if you limp, or that you should be judged for simply ‘not trying hard enough’ to walk like everyone else.

Managing one’s energy levels means having to be strategic – prioritising what is most important, simply so you don’t crash. For those of us on the autism spectrum, this can sometimes mean allowing ourself not to fully focus on social skills and social etiquette skills every second of the day. So we may find we have neglected to smile at someone, or to say thank you, and this can really bother people – but actually, it really isn’t the end of the world. This is sometimes what we need to do. And it is something that friends who care about us and want to be understanding should be able to accept. Not that it’s okay to use this as an excuse to be rude to them – it is of course vital that friendships are two-way, with both sides valuing and respecting each other and trying to understand each other. But it’s so important to be able to have that conversation with friends, where you explain that you care about them, but you need time alone, and that you will sometimes make social errors, and that you don’t always have the energy to maintain social skills. Friends who are able to understand this are true friends, and together you can find ways to understand each other and value each other.

Processing, organising, and 750 words

I talked in my last post about how difficult it is to know how you are feeling when you are on the autism spectrum. It’s commonly said about autistic people: ‘Oh, they can’t express their feelings’. I would argue that it is a lot more complex than that. In fact, those who know me well would say that I’m very eloquent in expressing my feelings. But learning to express my feelings has been a long and complicated process. When your body and mind are hypersensitive, and take in every detail, you feel a lot of things very intensely and simultaneously, which can easily lead to overload. And that makes it  pretty much impossible to know at a particular moment what you are feeling – to be able to break down every feeling and the reasons for it. You’re too busy just trying to survive! And if you don’t know what you are feeling, it is of course impossible to express it in words. So part of my journey has been learning to process and know what I’m feeling – then I can express it.

I’ve written before about how writing helps me to process my feelings. I often don’t know what I’m feeling until I write. It’s like my thoughts and feelings bypass the ‘inside my head’ processing, and go straight from being an unprocessed mess inside me to being an organised, clear description on the page. It’s as if my fingers themselves are doing the thinking as they type or write! I can’t explain this, other than to say it happens, and continues to happen, each time I write. From the simplest things like realising I’m tired or hungry (so many times I’ve written ‘I’m hungry’ and then realised at that moment that, yes, I am hungry – the writing had to come first, before I realised it!) to more complex things like writing about my feelings when someone dies.

I find the more overwhelmed I am, the more necessary it is to write – although ironically it’s when I’m most overwhelmed that I find it hardest to discipline myself to sit down and write. It is a discipline – and when one is busy with lots of other essential things, it’s easy to not bother. But as I have grown older, I’ve realised that writing, while it may seem like an optional extra, is really a necessity for me, and is the major way I’ve grown and developed and learnt to understand myself and the world around me, and to function and thrive.

I’ve realised something new about this recently. I discovered a site called 750 Words. The idea is that you write 750 words a day, and the site gives you ‘badges’ for writing a certain number of days in a row, and there are graphs that show your writing speed, and also your mood and attitude while writing (based on the words you use – it’s not always accurate, but it’s quite fun, at least if you’re someone who likes graphs!). So I’ve been doing this, and have found that the graphs and badges have motivated me like nothing before has – and I got so carried away with wanting to write lots of words that I decided to write 5,000 words a day. On the free 30 day trial, you can only write up to 1,000 words a day, but if you buy a ‘cup of patronage’, which is $5 (around £3 in UK money) you can write unlimited words. So I did this, because I was finding the site so very useful and wanted to see what it would be like if I wrote a much greater number of words. I then started writing 5,000 words a day, and sometimes more – sometimes 10,000.

This is way more than I normally write, and I figured I’d probably dry up and not know what to write and get bored – but instead, I found that I was writing all sorts. Lots of pointless things – just any observation that occurred to me – but also things that were important. Not only was I writing thoughts and feelings, but I was writing things I had to do as they occurred to me. And I found the act of writing them down like this actually got me to do them – far more effectively than a ‘to do’ list, which always overwhelms me. I have always had a difficulty with organisation (‘executive dysfunction’, it’s called, and is a common problem for autistic people), and have experimented with all sorts of strategies, but this actually helped me get things done. I can’t explain why, and can’t say it will necessarily help others on the autism spectrum, but the simple act of remembering and writing down things I have to do, as part of the process of writing down my thoughts in general, has made me organised than I’ve ever been. I’d write about it and then do it.

I’ve also found that the extended writing, of several thousand words a day, has got me beyond simply just expressing how I’m feeling, to finding solutions to things that bothered me. I was quite upset that the 750 words site was only free for 30 days, and then I’d have to sign up and pay monthly, when I don’t have an income at the moment. I wrote a lot of upset feelings about this, but then, as I kept writing, I found myself moving on to exploring solutions – such as maybe joining up each month with a different email address, or finding another site, or looking for software that I could use without even having to connect to the internet. And then it occurred to me that maybe there was another way to get membership without paying, even though the site didn’t say so – thinking of other sites, where I’ve written articles, or volunteered as staff on the site, in order to get a membership.

So – and this is partly the reason for this blog post! – I decided to ask if I could earn some membership by writing a blog post about the site, telling people how useful it is for people on the autism spectrum.  To be honest, I’d kind of wanted to write a blog post about it anyway – I like to share things that are useful – but I figured this could make it a ‘win-win’ situation. Once I’d thought of this idea, I went to the ‘help’ section, and actually found there was a category of request called ‘plea for membership’ – which immediately made me realise that the site owners are open to granting membership to people with no money. So I asked. And was granted four months membership, even without having written a blog post.

I’m glad – because I feel a bit awkward recommending a site which is a paid site, knowing that not everyone can afford a monthly payment. What I was originally going to say – and which still is the case, really – is that I’d recommend doing the 30-day trial, if you think that writing daily could help processing your feelings and thoughts. And then, if you find it helpful, you can go to the ‘help’ page and do a plea for membership. I recommended it to a friend of mine with Aspergers, who doesn’t normally write (he’s dyslexic), but who wanted a way to understand himself and how his Aspergers affects him. He’s been using it every day since I recommended it, and is finding it helpful – so that makes me realise it’s not just me. And I’ll say here what I said to him – it doesn’t matter if you spell things wrong or write with wrong grammar. It’s just the idea of getting your thoughts and feelings out, in whatever mess they are in – a sort of brain dump. And if you are a visual person, it can be helpful to see your thoughts written out, rather than have them all in a muddle in your head.

Another thing I realised, through asking questions in the help section (all answered by Kellianne, who is very helpful) is that a ‘cup of patronage’ on this site is the same as a month of membership. So as well as buying myself the ability to write more than 1,000 words a day, I had also bought myself a month of membership. It isn’t clear on the site that membership and patronage are the same – at least, it wasn’t clear to me – so I am explaining this here, because it’s something I would have liked to know from the start. Membership is when you start a standing payment that is taken from your account every month, and patronage is a one off payment. Also, you can ‘use up’ your patronage by writing a ‘note of inspiration’ instead of having a month of membership.

The site also has monthly challenges – these just involve writing at least 750 words a day for each day of the month. If you sign up for a month’s challenge and complete it, then you get a ‘cup of patronage’. So, the most logical way to organise being able to use this site is to start a trial membership on the first day of a month that has 30 days. Then you can complete the challenge in your 30 day trial and have a free month, and if you join up for the month challenge each month, and complete it, then you’ll keep getting another free month. This is a way both to use the site for free and to be strongly motivated to write every day!

Of course, if you can afford it and if you like the site, you might want to donate as well. Which was part of the reason I wanted to buy a cup of patronage – as well as wanting to write more than 1,000 words, I was getting a lot out of the site, and wanted to give to it. I just couldn’t commit to doing that every month at the moment.

I will add, because this is always an important consideration of mine when finding sites to write on, that you can customise the writing page – change the font, the background colour, etc. Which is very important for those of us with visual processing difficulties (Irlen Syndrome).

There are of course lots of other sites where you can write too. Penzu is a favourite of mine, and I use that for more structured writing, like writing blog posts (I’m using it right now, in fact!). You can get a free account or pay for a Pro account. The Pro accounts are $19 a year – maybe I could try asking the Penzu people for a free Pro account in exchange for writing about them here! I had a Pro account once for a year, from someone using my link to get a Pro account. It’s a thing they do – so if anyone wants a Penzu Pro account, and wants 20% off, use this link: http://penzu.com/r/86ed2f7e – and then I get a free year of Penzu Pro. And you would also get a link where you could do the same. Penzu Pro is good because it lets you have several journals and you can customise the page to different colour backgrounds (again, so important if you have visual processing difficulties).

But the most important thing, I think, is just to write. I have written in all sorts of ways over the years, with pencil or pen in paper note books, typing in Word documents, in diary software, etc. At the moment, my favourite way to write my thoughts and feelings is the 750 words site – the badges and the graphs are amazingly motivating and fun, and the site owners seem friendly and helpful, which I think is important. I’ve only been using the site for 19 days so far – I was trying to put off writing a blog post until I’d used it for longer, but I guess I can always write another one in a year’s time if I’m still doing it, and then I’ll have a better idea of the longterm effects of such intense writing every day. But in the 19 days, I have written 104,000 words altogether, which I’m quite amazed by! And so far I’m feeling more organised in my thinking and more positive and strategic. So I’d definitely recommend giving it a try.

The horrors of getting a haircut

Something that I’ve become more and more aware of in recent years is that I hate getting my hair cut. Really hate it – in much the same way as many people hate going to the dentist.

It may seem odd that I’ve only recently become aware of this – surely you know if you hate something, after all! But as I grow in self-awareness, I am realising that that the simple act of knowing how one feels about a certain activity is not so simple when you’re on the autism spectrum. Being hypersensitive to so many things, you are often simply in a state of overwhelm. You are generally feeling a whole lot of things at any one time, and can’t automatically distinguish what they all are, let alone what caused these feelings in the first place.

I began to realise that I hate getting my hair cut when I became aware that I was putting off going to the hairdresser. I would know I needed a haircut – my hair was getting more and more uncomfortable as it grew longer and the style grew out, and I really wanted it to be cut – but somehow I would find excuses not to go. I would hate thinking about it. I would finally go into town, find a hairdresser, ask if they had an appointment at that time, and if they did, I would go for it, and get it over and done with – and then go home and cry. A few years ago, I found a hairdresser I was comfortable with, and it was such a relief. I saw her each time I went, but then she moved to Australia. And I was devastated – feeling terrifed about finding another one. Clearly these were rather extreme reactions, so you’d think I’d realise from this what a big deal it was. But these things would flit from my awareness – they would bother me greatly at the time and then I would forget about them, and so I didn’t build up any awareness of a pattern for a long time. Nor did I analyse exactly what it was that I hated.

I think part of it is that logically there didn’t seem any reason to hate it. I knew a haircut was supposed to be a nice thing – a treat, a pampering. And when society tells you that something is wonderful, it can be hard to actually process the fact that you don’t share that feeling. Going to the dentist was fine – I knew that was supposed to be horrible, so I was prepared and could easily process my feelings of dislike and go ahead anyway. But the idea of having my hair cut elicited lots of conflicting and confused feelings that I’d never really thought to analyse.

Interestingly, when I first started reading about autism, many years ago, one thing I kept coming across was the idea that autistic children hate getting their hair cut because it actually hurts them. These (very old-fashioned and dated!) articles would claim that while cutting hair doesn’t hurt a ‘normal’ person, it actually hurts an autistic person – they can actually feel their hair getting cut and it hurts. So I’d read that and took a pair of scissors and cut one of my hairs, just to see if it hurt. No, my hair was normal hair, I realised – not autistic hair. It doesn’t hurt. Same as fingernails. So I’d concluded that getting my hair cut doesn’t hurt.

More recently, I’ve realised it does hurt – but not in the simplistic way that those articles seemed to be suggesting (or possibly I was misinterpreting, taking them too literally! A difficulty with being autistic is never quite knowing if a misunderstanding is due to your autism – it can be, but certainly isn’t always). It’s not that I have feeling in my hair – rather, it’s the pulling of my hair that comes with brushing and combing and tying bits up. My head hurts afterwards. And the blowdrying always causes me distress, because the hairdryers are put so very close to my head and they are too hot, and feel intrusively close. And the smells of the various stuff sprayed in the room (even when not sprayed at my head) overwhelms me. It’s just an overwhelming, painful experience in general.

And there’s the fear of the unexpected – not knowing quite how it will look at the end. Will it be okay? Will the sides be the same length? I’ve had many a hairdresser get annoyed with me in the past because I said that one side was longer than the other, and I wanted them even! A main reason I was comfortable with the hairdresser who went to Australia was that she would simply laugh in a friendly way when I explained I wanted the sides even – she was totally laid back about it and that made such a difference. It can be a frightening feeling when someone is irritated with you. Also, she didn’t chat to me, which also made a difference. It’s not that I can’t make myself do small talk when necessary, but having to make small talk to a stranger while on complete sensory overload is very exhausting. Especially when they ask: ‘What are you doing today?’ or ‘What are your plans for today?’ – and you think in a panic: ‘Gosh, what do I say? Am I supposed to have plans beyond this? I have no idea what I’m doing – I’ve mustered all my energy to get my hair cut and haven’t thought beyond that! This is what I’m doing! Getting my hair cut! Then I’ll go home and recover!’ But of course, one can’t say that, so I generally say something vague like ‘Oh, I’m going shopping’, and hope they don’t ask what I’m buying!

I’ve been wanting to write about this for a couple of years now – each time I’ve been to the hairdressers and come back home feeling quite traumatised, I’ve thought to myself: ‘I must write a blog post about this. I’m sure there must be others on the autism spectrum who are the same.’

Actually, now is probably the best time for me to be writing about it, because I have finally come up with a solution, which seems so simple I don’t know why I didn’t come up with it years ago. There are hairdressers who come to your home. And there are hairdressers who let you go to their home. And it’s so much simpler that way. You’re not in a noisy, smelly environment. You don’t have to have your hair blowdried in a certain way (in theory you don’t in a hair salon either, but no matter how many times I’ve asked the stylist to keep the hairdryer at a distance from my hair and not touch it, and they’ve agreed, they always end up doing it the way they always do it!). It’s more peaceful and more personal and easier to process. It’s cheaper too, which is always a bonus.

The difference with home hair stylists is that often it’s through word of mouth that you hear about them – and many of us on the autism spectrum don’t tend to be very chatty, and often we are not in the know about the various social things that people talk about. I realised I’d have to make the effort to ask colleagues about where they get their hair cut, and whether they knew any home stylists. But once I did that, I realised it was much easier than I thought. A lot of women love talking about such things and have all sorts of connections! One of my colleagues has a daughter who is a hair stylist and cuts hair in her own home as well as in a salon, so I went to her home. Much less stressful than going to a salon! Much quicker too. And now I’m at the stage where my hair really needs cutting again, and for the first time, I’m not the slightest scared about making an appointment.

One thing occurs to me to mention before I end. Those of us on the autism spectrum are often thought to have an irrational fear of change. And if I weren’t able to express myself in words, it would be very easy for people to see my distress at having my hairdresser move to Australia as a typical example of this. It’s not a big deal for most people to have to change hairdresser, after all. But if you see it in terms of sensory hypersensitivity, and having extreme difficulty with a certain type of experience, it starts to seem a lot less irrational – of course if something generally causes pain and discomfort, it is incredibly important to find someone who can do it in a way that minimises these feelings – and when finding such a person is difficult, you want to keep the one you’ve got! The same can be applied to all sorts of things – when you see an autistic child who wears the same clothes over and over and gets distressed at having to buy new clothes, it may well be that the clothes he’s got used to are the ones that cause least discomfort. Having to start wearing new clothes potentially causes a great deal of pain and discomfort.

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.

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.

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.