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.