Perseveration and difficulties with change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Forgetting to eat and remembering facts

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.