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.

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.

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.

Overloaded: what it feels like

Right now I’m feeling sensory overload, and my head feels all scrambled. I really do not feel like writing a blog entry – I feel like hiding under my duvet – but it occurred to me that it would be good to try to write about it when I feel like this, because it’s immediate and I can explain what I am feeling. If it’s a bit jumbled, I apologise, but it will hopefully show how my mind works when I feel like this.

The kind of overload I get is not just sensory. It’s also an overload from too much information in general – doing too much, spending too much time with people (and of course ‘too much’ is a relative term, and will be different for each person, and will depend on all sorts).

I’ve spent quite a bit of time with people lately, and right now I’m thinking I do not want to spend any more time with people. So I thought I would like to explain why this is, because often people have a stereotype that people with Aspergers aren’t interested in people, don’t care about people, etc. And this is really not the case. So I will explain.

I find people fascinating. From a very young age, I read novels, because to me they were a great way of understanding people. There is also a stereotype that people with Aspergers don’t read novels, and while this may be true of some people with Aspergers, it is not true of all, and certainly not true of me. To me, people have always been a fascinating puzzle (you know how people depict autism as a missing jigsaw puzzle – well, to me, autistic people are the easiest to understand! It’s the other ‘normal’ kind who are the puzzle!).

The puzzle was much more manageable in novels – there was no sensory overload, no auditory processing issues, no multitasking oftrying to read body language, words, and meaning. Just words on a page. I learnt a great deal about people by reading. As a child and teenager, I didn’t speak much to people – I found them too overwhelming and confusing – but as I reached adulthood, I decided to try getting to know people. I wanted to understand people, and to talk to them and spend time with them. I made myself do this.

And here is the result. I found that being with people could be very rewarding. I could enjoy their company and find them fascinating to talk to. Obviously some I felt more comfortable with than others, and some I felt uncomfortable with. Small talk confuses me. I prefer talk that goes beneath the surface. So with people I know a bit better and can talk about more meaningful things with, then I feel more comfortable. But at the same time, being with people is extraordinarily exhausting.

If I don’t know the people well, then the unsureness of what to say and how they are interpreting me, and the attempts to analyse this, are very tiring. But even if I know people well, and am comfortable with them, being with other people requires an extra layer of awareness that being alone doesn’t. You are always aware of the presence of the other person as well as your own presence. You’re aware of the other person interpreting you, and your effect on the other person. If you are close to the other person, it’s not so much a question of anxiety obout being wrongly interpreted, but more simply a multi-tasking thing. It’s so much easier to have no other person to keep track of in my mind. When it’s just me, I can lose myself in whatever I’m doing.

So, while I enjoy the company of others, I also need a great deal of time alone.

Some other things that affect me are weather, diet, and exercise. While sitting out in the sun can be nice for a while, it leaves me exhausted afterwards. As for diet, all kinds of things affect me badly – processed food, caffeine, sometimes wheat. Exercise is a difficult balance – the right amount gives me more energy, but a bit too zaps all my energy. Another factor which applies to females is the menstrual cycle. I understand that one is not supposed to talk about such things, but quite frankly, I think it could be useful to talk about this, in case others are affected in the same way. In general, for all women, not just those on the spectrum, PMS causes the body to be more sensitive to sensory stuff, and more fatigued, and also causes an inner feeling of mental tension. For someone on the spectrum who already has sensory sensitivities, is easily fatigued, and also easily feels mental tension, then this time of the month can be quite disabling.

Right now I have PMS and I have also been out in the sun for a walk with other people, and have in the past few days spent quite a bit of time with other people (whose company I enjoy). The effect on me right now is as follows: My head feels like it’s all over the place. I am finding it hard to concentrate and I feel hot and prickly and unsettled. I am sitting on my bed, but a while back when I was standing up and on the phone, I was pacing back and forth, feeling a strange unsettled feeling. I want to shut my eyes and stop writing this. The laptop is hot on my lap, and my neck aches and my eyes ache and I half want to scream and half want to hide under my duvet. I can’t tell if my body wants sensory stimulation or lack of it. I felt the need to turn on music (which I don’t like to do very often) but as soon as I was listening to my favourite music, I realised my body was at a heightened intolerance to it – the music seemed to be prodding my head and somehow intruding uncomfortably into my body. And this is quiet relaxing music.

I am very tired. And hot and cross and not wanting to write this blog post, but not really wanting to go to bed, because I’m not feeling settled, but still my body is heavy and tired and my eyes are closing. I feel dizzy and my tummy hurts – sharp stabbing pains. My mind wants to focus but darts back and fro. My eyes are closing so much I have to sleep right now, but I want to post this. I’m trying to find a way to end the post, to tie up the loose ends and give some good advice, but my mind can’t focus and I’ve lost track of the entry as a whole, and how it began, and I feel too tired and unfocused to read it through.

So this is me in ‘overload’ state. The solution for me, right now, is to go to sleep!

Sensory differences – both good & bad

The concept that my experiences of sensory things are different from other people’s is one that simply never occurred to me until I started reading about Aspergers. In the same way that one assumes that, for instance, everyone sees the same colour for what they call yellow, I assumed my senses were the same as everyone else’s.

I have vivid memories of being in department stores and supermarkets as a child, with my family. I would feel a horrible feeling, which became worse and worse and I would then sit down on the floor because it was uncomfortable to stay standing, and I would scream that I wanted to go home. My mother would get angry with me because she thought I was throwing a tantrum out of boredom or impatience. I would say I didn’t feel well and she didn’t believe me, because I didn’t have a fever or look ill in any way.

I had no way of being able to explain sensory overload, and people weren’t aware of such a thing back then. What I was feeling was a sense of being overwhelmed by noises, lights, too many things around me, not having any sense of where I was going or what I was doing, and a dizziness that made it hard to stay standing. I can explain this in retrospect, and I also know in retrospect that the fluorescent lights affect my vestibular system and make me dizzy. As a teenager and adult, there were many experiences in supermarkets where I would become dizzy and start blacking out and have to sit down.

I also have vivid memories of loving to have my back tickled gently. I think it started when my mother did it once, when I was about four, and then I told her to keep doing it, and every evening I wanted her to do it. She wouldn’t always do it, so I tried to get other people to do it. When I started school, I would ask anyone and everyone in my class to tickle my back. Some did it once, but most stopped after a couple of minutes. One girl would do it whenever I asked, for as long as I wanted, until eventually she would say ‘Can I stop now? My arm is tired.’ I would reluctantly let her stop.

However, her tickling sessions were brought to an abrupt end one day.  One day in assembly, as she had her hand on my back, tickling away, the head mistress said in a loud, horrified, angry voice: ‘Stop that at once.’ I remember I had no idea that she was talking to us or what she was talking about, but the head mistress then said ‘You know what I’m talking about!’ I didn’t have any idea, but I guess the girl who was tickling my back knew, because she stopped.

As my younger sisters grew older, I would get them to tickle my back, and I would sometimes give them my toys and pocket money in exchange for a tickle. I remember, once when I was six, my mother was tickling my back and I didn’t want her to stop, and she said jokily ‘I need to get a machine that tickles your back forever.’ I didn’t realise this was a joke, and I thought it was a wonderful idea. To me the experience had nothing to do with any kind of intimacy (I imagine in retrospect that the head mistress thought that it was something sexual – that I and the other girl were engaging in lesbian activities at the age of four!). Whether it was a machine or a person would have made no difference. I just loved the feeling on my back.

I give the two very different examples of supermarkets and back tickling to illustrate how, as Donna Williams says, the sensory issues of autism can either be like a private heaven or a hell. This is definitely true of me. Sensory sensitivity can either be overwhelmingly awful, or utterly amazing.

Another example of a good sensory experience is the feeling of sand – lying on sand, pushing my hands and feet into the sand, feeling it’s pressure and it’s fluidity. I have a photo of myself as a child in which you can see how much I enjoyed this.

Whereas normally I would get bored if I had nothing specific to do, I could lie for ages on the sand, just enjoying the feel of my body against it.

An example of a negative sensory experience is bright light. In the next picture, my sisters and I were having our photo taken with our dad, and the sun was in our eyes. This is an unpleasant experience for everyone, but, rather than shielding my eyes or looking away as my sisters did, I became overwhelmed and held up my arms, not knowing what to do. You can see me on the far left, with my arms raised up and my hands stiffened. Somehow my instinct is to push away the light, as if it’s something physical, because it feels like it’s intruding on me, so my arms create a barrier around me. It’s the same even now if there is a flash of bright light or a loud unexpected noise. I know it is illogical, but it is how my body reacts, because it doesn’t integrate the senses very well and have an instinctive sense of what to do.

As an adult, since I have read a lot about Aspergers and difficulties with sensory integration, I have some strategies in place to help. For instance, I have Irlen tints on my glasses, which are very soothing and stop light being so intrusive. I wear a cap to limit how much I see, and to shield my eyes a little from light. The more overwhelmed I am, the more I push down my cap, so my field of vision is smaller, and so there are fewer things to overwhelm and distract me. When I go into a supermarket, I make sure to go through it very quickly, and I try to be aware of my dizziness levels, and if necessary to pay for my groceries and leave before I’ve picked up all I planned to buy. I have some groceries delivered, to save trips to the supermarket. I make sure to have at least one day a week where I stay at home and rest. I am aware that I’m a lot more sensitive to sensory stimuli when I’m tired, so I make sure to have enough sleep. All these things help reduce unpleasant sensory experiences.

I also find ways to create good sensory experiences – not only because they feel good, but because they help with sensory integration in general and they help to reduce the discomfort of unpleasant sensory experiences. I have massages and also I have cranial osteopathy. I also used to go to a flotation tank where I used to live, but there isn’t one where I live now. All these things are quite expensive, so I have to budget and I can’t do them as often as I’d like. As a cheaper alternative, I buy aromatherapy oils and massage myself. I also burn my aromatherapy oils in an oil burner, because I love certain smells, especially the smell of lavender. As a child I used to pick lavendar all the time and put it in a bag and spend a lot of time smelling it.  It’s a lot more convenient as a smell in the air from an oil burner.

I have realised that I like a slight pressure all over my body – in the same way that Temple Grandin likes a ‘squeeze machine’. So I tuck my duvet into my bed very tight (you can also get weighted blankets, but that is expensive and I don’t have much money, so I tuck in my duvet as an alternative way to exert pressure on my body). Somehow it is calming. It also makes me more aware of my body boundaries – where my body is in space. A common aspect of Aspergers is poor proprioception – difficulty perceiving exactly where one’s body is and where the boundaries are.  I also like to wear clothes that exert a gentle pressure which is the same all over, rather than some parts that are tighter. I really like to wear soft tights or leggings – and I make sure to get a size too big for me, so they aren’t uncomfortably tight.

I could say a lot more about sensory issues, as they affect me quite a lot, but this is just a general introduction, giving some examples to give a sense of what it’s like and the variety of sensory experiences one can have. I will write more entries on sensory issues in future.