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.

Flexibility and ‘common sense’

In looking at the topic of rigidity of mind in people on the autistic spectrum, Temple Grandin gives the following example:

I heard about a case where an autistic boy had a severe injury but he did not leave the school bus stop to get help. He had been taught to stay at the bus stop so that he would not miss the bus; he could not break that rule. Common sense would have told most people that getting help for a severe injury would be more important than missing the bus. But not to this young man.
(The Way I See It, p. 37)

This immediately rang bells of recognition in my mind. When I was five years old, my class teacher at school would sit on a chair at the front of the class while we were getting on with our work, and we had to line up in front of her chair to ask her anything. As I’ve mentioned before, when I was a young child I wouldn’t realise I needed the toilet until I was totally busting. I remember realising I was busting for the loo, and getting up to queue up behind the other children who were waiting to ask the teacher something, so that I could ask the teacher if I could go to the toilet. After a little while, I couldn’t hold it in any longer, and I’d made a little puddle on the floor.

The teacher leapt up to deal with this, and asked me why I hadn’t told her I needed to go for a wee. I told her in bemusement that I’d been queuing up to tell her. She tried to explain to me that when I am busting for a wee, I do not need to queue up – I can then just call out and ask her, or even just get up and go to the toilet without asking. My mind couldn’t compute this at all. She’d always told us that we need to queue up to ask her anything and that we weren’t allowed to shout out or leave the classroom. And if I left the classroom, how would she know whether it was to go to the toilet or to run off?  (Another situation where, in retrospect, coloured tickets would have been handy! I could have waved a blue ticket whenever I needed the loo!)

I remember a similar situation when I was six. I was queuing up to ask the teacher I didn’t feel well. As I stood in line, I realised I felt even worst standing up than sitting down. It was hard to stay standing. I felt dizzy and shaky and was seeing black spots. I wanted to inform the teacher of this right away, but I knew I wasn’t allowed to shout out, and that I had to wait my turn. Suddenly my legs gave way and I heard myself make a strange groaning noise, and I ended up in a crumpled heap on the floor. The teacher leapt up and scooped me into her arms and carried me to what I assume was the sick room (I’d never been there before, so it wasn’t familiar to me), and then called my mother to take me home. But what I remember most clearly was how kind and concerned the teacher was. I was expecting her to tell me off, because children were supposed to stand quietly in the queue, not to make a strange noise and fall on the floor. I actually thought I’d done something wrong, because in general I was often getting told off for doing things that weren’t the norm, and which weren’t ill-intentioned.

The issue of ‘common sense’, which Temple Grandin talks about, is an interesting one. You would think it’s common sense to know that if you’re about to wet yourself, or feeling so ill that you’re about to collapse, that it’s okay to see this as an exception to the rule and not remain quietly in the queue. But I had no automatic sense of priorities – I’ve had to work those out by logic over the years. I had no idea that exceptions to rules could happen.

I have often been told I don’t have common sense. But at the same time, in different contexts, I’ve also often been told that I have a lot of common sense. I wonder whether the issue isn’t so much one of common sense, but the ability to switch from one way of thinking to another.

When I’m in common sense mode, my common sense is brilliant. I’ve learnt a lot of common sense from working in care homes – listening to colleagues say aloud their thinking process in making decisions has been brilliant in showing me how thought patterns can work. I’ve learnt through this how important it is to look at different perspectives, and at the potential overall results of various actions. So when I know I need to be thinking of something from a ‘holistic’ view, having the overall result as the priority, then my common sense thinking is great, because that is my focus.

Also, what others call common sense in me is often simply the result of my having analysed something logically, being unconstrained by the conventions of what is ‘normal’. Actually from that angle I’m at an advantage, common-sense-wise, because the ‘normal’ is never ingrained in me to begin with. I think ‘outside the box’ purely from never having been able to find the box, and half the time being unaware that a box even exists! But this way of thinking outside of the normal constraints can also lead to thought processes that are considered lacking in common sense, because I may totally fail to take something quite obvious into consideration. So it can either lead to unusual common sense or unusual lack of common sense!

But going back to learning from other people voicing their thought processes, this has been incredibly useful for me in all kinds of areas. I lived in Canada for a few years, and I find (as a sweeping generalisation!) that Canadians talk about their feelings a lot more than Brits do. For me this was enlightening to hear people put their feelings into words and to explain openly what they are feeling and why. This has been a major contributing factor to my own ability to put my feelings into words. I would hear others do it and I would realise that they had enabled me to understand my own feelings.

In general, people don’t put a lot of their thought processes into words – at least, not into spoken words that they share with others. But for the person on the autistic spectrum, hearing thought processes and feelings being put into words is incredibly helpful, for several reasons:

  • It helps in understanding one’s own thoughts and feelings
  • It helps in understanding of the sorts of priorities it’s important to make
  • It helps in learning how exceptions to rules are reached
  • It helps in understanding how other people think and feel

And so, for parents or teachers of people on the spectrum, I would really recommend saying aloud your thought processes in everyday decision-making, when you are with people on the spectrum.

For me, it’s more helpful when people are explaining something in retrospect, because then the thoughts are all arranged neatly in their brain, and they don’t go off at tangents. So, for instance, you can explain why you decided not to do something you were going to do – explain how you went through the various pros and cons in your mind, and the overall result you considered in making your decision. Here is a possible example:

I’d thought of going to the supermarket yesterday afternoon at 3 o’clock, because I had some free time, but then I remembered that’s the time when the schools are closing and the supermarket gets really busy and crowded with parents and children. I find it puts me in a bad mood to be in a big crowd, and I don’t like to be in a bad mood. And it takes far longer to do any shopping when it’s crowded, so it wastes time. So I decided that going at 7:00pm would be easier and quicker, and I could have a nice relaxing evening, without being stressed from having been in a crowd.

That might seem like a daft example, and unnecessary information to share, but for myself it has been ever so helpful when people have voiced such thought patterns and decisions. It has enabled me to see that plans do not necessarily have to be followed rigidly, and that there are various perspectives to think about. It has taught me to be aware of the overall result – not just (to use this example) the result of getting the shopping, but also the result of how it affects my mood, and my day. I find that when considering getting something done, I do not automatically think of the effect it will have on me as a person, so I can be so focused on getting something done that I forget to eat or sleep. I see this not so much as lacking common sense, but lacking the flexibility of thought to remember to look at the overall effect of something on me as a whole person (eg. the ability to stand back and say: yes, I want to get this done, but is it more important than my health?).

Therefore, learning how to make decisions with the final overall outcome in mind is essential for me – and I have learnt this by other people modelling it by saying aloud their own decision-making processes. I need concrete examples to understand something – and many concrete examples, so that I can see the ways in which something can vary.