As a child, I would often wet myself. Not because I didn’t know how to use the toilet, but because I simply didn’t realise I needed the toilet until I was so busting I couldn’t hold it in any longer. This happened quite a lot until the age of seven, and even occasionally continued until the age of ten. At the age of ten, though, I was so ashamed of doing such a thing, that I very strictly made myself go to the toilet regularly, even when unaware of needing to go.
I never associated this with Aspergers until I read Donna Williams’ autobiography Nobody Nowhere, and she described a similar pattern of not realising she needed the loo and so wetting herself. So I then figured that this must somehow be an ASD trait, but I had no real understanding of why, or where it fit in to the various differences of the autistic brain.
However, lately it has come to my mind again, and I think I understand it better. I have realised that a similar unawareness is still manifest in my life, for all kinds of sensations. As an example, I will describe what happened this morning.
I woke up at 7:00am and I felt awful. I didn’t want to get up. However, I wasn’t fully aware of this, and habit compelled me to turn on my laptop and go onto Twitter. I tweeted, and as I wrote, I realised how tired and unwell I was feeling. The act of writing alerted me to the fact that I could do with some more sleep, and reminded me of what I’ve been intermittently aware of over this past week – the fact that I have done more than I usually do, and have spent a lot of time with other people, and been exposed to various sensory stuff that I find difficult, such as fluorescent lights, the motion of travelling by bus, various loud noises, etc.
However, throughout the week, I have not really been fully aware of feeling tired or unwell. I sometimes get a fleeting awareness, but the feeling passes as I get absorbed in other things. So the awareness that I’m tired and need a rest isn’t a constant, because I am unable to keep several things in my mind at once. Whatever I focus on occupies my whole mind. So I don’t know I’m tired unless I stop and think about it. And the moment I think about something else, the awareness of my tiredness disappears.
I slept again until 8:30am, and then I woke up and went onto the internet again. I still felt awful, but this time I became absorbed in the internet, because I saw I had comments on my blog, and I’d been retweeted, which immediately took all my attention. So then I stayed on the internet. As I updated Twitter, again I realised I was tired, and then I could bring my mind to the fact that it had been a tiring week and that really I needed a day at home. Fortunately I have become aware in the past couple of months that I need at least one day a week at home – a ‘hermit day’, as I call it – so I do this without feeling guilty and it has made a positive difference to my life.
I took a look at my ‘101 things in 1001 days’ blog and realised I had no motivation for it at all. My mind felt unfocused and confused and a little zoned out. I then had an impulse to write about the fact that I was feeling like this – so although I had never before done this on my 101 things blog, I wrote about having no motivation, and how that doesn’t mean I will never have any motivation, but it just means what I am feeling right now – I logically worked through my feelings, and by the end of it, my mind no longer felt confused, and I felt more rested.
At about 11:00am, I went to the toilet, and saw the bath, and was thus reminded that I like to have a bath every morning. So I then had a bath. It was the fact of being in the bathroom that reminded me. It isn’t something that stays in my mind. As I walked back to my bedroom, I saw my incense stick holder, and I remembered how calming I find it to burn incense sticks, and I realised I wanted to burn one. However, the matches weren’t in my room, so I went downstairs to find them. I couldn’t see them in the living room, so I went into the kitchen. Then I saw my eggs that I bought the other day, and realised I was hungry. So I boiled an egg. While it was boiling, I realised that I needed to wash dishes from yesterday, so I did that. I then realised I’d cooked the egg for too long. I ate the egg and then went upstairs again. Once I’d got to my room I saw the incense stick holder again and was reminded that I want to burn an incense stick, and that the matches were still downstairs. So I went down again to find them. I then saw my packet of green tea leaves and decided I’d like a cup of tea.
As you can see from this description of my morning, I am often unaware of my bodily needs unless I am prompted by something external. I’d say there are two reasons for this.
Firstly, my mind is ‘mono’ – that is, I can only focus on one thing at a time. If I am absorbed in doing something, I will not notice my bodily needs. This is one reason why I try to write my thoughts and feelings every day – it focuses me on being aware of what I am feeling and what I need to do.
Secondly, I ‘perseverate’ – this is the word people use to describe the continuous focus on one thing that people on the spectrum have. As with difficulty multi-tasking, it seems to me that this is to do with the disruptions in brain connections. People on the spectrum have difficulty switching from one task to another – which includes switching from doing nothing to doing something, which is also known as ‘initiating’. To me ‘switching’ and ‘initiating’ a task are pretty much the same – they involve a change of focus. A change of focus involves a kind of multitasking – being aware of what you are doing right now, being aware of what you plan to do instead, and to then take the various steps to switch, while still being simultaneously aware of both. It’s not that it’s physically hard to stop one thing and start another, but it’s more that the mind resists it – even when my logical brain is saying ‘this is silly – I need to stop this now and go do so-and-so’, still there is a great internal resistance, which defies logic, and frustrates me greatly. Partly it’s because that logical voice can’t stay constant in my mind – at each moment I must choose to focus on one thing or the other, and once I’ve focused on one thing, then the other disappears.
I see a very visual illustration of this in the fact that objects in my house remind me of what I need to do. I have started putting a glass of water in my kitchen, so that when I come down in the morning, I see it and drink it. I always refill it, so that whenever I see it, I drink it. Whenever my dad visits, he is always telling me I need to tidy my house and ‘put things away’, and he gets very annoyed by the mess – but the truth is that having things all out on display is actually a really helpful strategy for me. I have learnt not to put things in the closed drawers of my fridge, for instance, because I forget they are there. When I open my fridge, I eat things that I see. It’s not that I don’t know, at an abstract level, that there are drawers with food in them – obviously I know that, and I can remember putting the food in them – but it’s more that I don’t think of it while I’m focusing on something else.
Similarly, I have a TV which I barely ever watch. The few times I watch it is because I’ve read online that something good will be on TV in a few minutes, or because my sister has phoned and told me something is on that she thinks I’ll like. It’s not so much that I dislike TV – there are TV shows that I really like – but just that I forget it’s there if I’m not thinking about it.
So lists are important. My ‘101 things in 1001 days’ list is great, because in actually writing down the things that pop into my head that I’d like to do, I have an external prompt and so I won’t forget.
I’ve talked a lot about forgetting, which strikes me as a bit odd, as I actually have an extremely detailed memory. I remember my childhood in detail, and I remember what I read in books in detail, and I generally do very well in exams, even if I don’t study. If I just glance through the notes beforehand, I remember it all. But the kind of forgetting I do – it’s a different sort of memory. It’s not really forgetting, as the information never leaves my brain, and is always there if I am prompted to recall it, but it is temporarily forgotten from my conscious awareness, I guess.
I will try to come up with an analogy. If you imagine my whole memory as a kind of library full of books, and then imagine that to function each day, I need to refer to five of these books. Referring to these books means they must be open on the desk – I can’t refer to them otherwise. So my ‘working memory’ – what I am using to function – can be the desk of the library, on which I look at these five open books. Most people have a desk big enough for the five open books to fit, but for me, I can only fit one book at a time. The other books are all stored away, where I can’t see them or work from them. So, while other people are looking at all five open books together and seeing how they fit together, and working them all into their lives, I am looking at one open book, and focusing totally on that.
To get another book would mean going all the way to the back of the library to find it amongst all the other books. It would also mean putting the present book back away, so I can’t use it any more for the time being, and I don’t know when I’ll remember it again. I don’t want to put the present book away, because it’s important and absorbing. I can make a list of the five books, so that I remember to keep switching them, but they are never integrated. I can only look at one at a time. Thus I never have a sense of being in control of my life as a whole – only one part at a time. Life seems to me to be in fragments rather than an integrated whole.
My ‘five books’ could be eating, exercising, sleeping, studying and blogging. Of course there are many more than that, but this is just a simple analogy to explain how ‘perseveration’ happens.
I suppose, to continue the analogy, when I write my thoughts and feelings, that is giving me the opportunity to see which ‘book’ is the most essential and to select it, rather than just selecting the book that I happen to see first. It gives me more control with awareness of needs and consequent prioritisation, but it doesn’t actually help with switching ‘book’, unless I then take a break from the ‘book’ and write down more of my thoughts – but of course that in itself requires a kind of switching of activity.
I hope this blog post shows that being unaware of bodily needs, perseverating, having difficulty multitasking, and having difficulty organising, are all linked together, rather than being a bunch of separate, unrelated ‘symptoms’ of autism. Everything I have described is why I have such difficulty organising my life. It is also why, when I focus on one thing, I often do exceptionally well at it. So it’s both a curse and a blessing.