‘I just assumed she was lazy’

When I was 13, I changed school. Well, I changed school many times in my childhood, but what was significant about the change at age 13 was the English teacher. The English teacher at my new school was not like any teacher I’d had before.

Everyone said she was their favourite teacher, but I wasn’t so sure. She would spend a large portion of the lessons chatting to us. Chatting about the sorts of things that the girls in the class wanted to talk about – it was a girls’ school, so this included chats about periods and boyfriends and make-up. I didn’t like this much because it seemed to have no structure, and didn’t seem to have anything to do with English. In retrospect, I see how she added the curriculum in subtly, and tried to make it as relevant and interesting as possible, but at the time, I had no idea of what we were supposed to be learning in these classes.

Then she set us a project to do. We each had to put together a project entitled ‘Me’ – it could include pieces of writing, and photos, and anything that gave information about us. No deadline was given. It was just something we were to work on throughout the term.

I wasn’t happy with this. Firstly, I came to school to be taught information, not to give private information about myself to a teacher who didn’t know me. ‘Me’ was none of her business. And secondly, I had no idea what she wanted. This project was incredibly vague. ‘Me’ is such a huge topic – there were all kinds of aspects about myself, and I had no idea where to start or what she wanted. So I simply didn’t do it.

Each week, in the English lessons, the teacher would ask how people were getting along, and they’d show her what they’d done. She would set aside time in the English lessons for us to get on with our projects – but she was always so vague and didn’t say we definitely had to spend the time doing it, so I simply didn’t. She would come along and ask me how I was coming along with my project, and I would tell her that I hadn’t started it yet because I was busy. She was understanding at first (after all, I’d just started a new school, so had lots of catching up to do) and then got a little impatient. But she never actually told me directly that I had to do it, or gave a deadline or anything. So I simply didn’t do it.

Then, in the middle of the term, when everyone was still doing their ‘Me’ projects, she gave us another piece of work. Two simultaneous pieces of work was very confusing to me! But the new assignment was a bit clearer. We had to write a short story, entitled ‘The Mask’. And we were given a deadline. The teacher gave us lots of different examples of the kinds of social masks people could wear – it could be a literal mask or a figurative mask, she told us. She was very much one for giving us as much freedom as possible, but this confused me. I needed to know exactly what I had to do. After she’d spent the lesson talking about this assignment, she asked if we had any questions.

I put up my hand. ‘I don’t understand what we have to write about.’

Her smile faded and she said ‘I don’t know what to say. I’ve just been spending the whole lesson telling you.’

‘Is it that the story is about a person who is pretending to be something she is not?’ I asked. She hadn’t actually said this – all she’d done was give examples of masks – and so I needed the assignment question clarified, in these specific words.

‘Yes, it can be,’ she said, looking relieved. ‘See, you do understand it.’

I focused my energy on this assignment. We didn’t have exercise books for English, so I wrote the story on A4 paper. This was in the days before computers were the norm, so I handwrote it, in my best fountain pen, with a calligraphy nib. I created covers for the story, made out of coloured paper, with the words ‘THE MASK’ cut out and stuck on.

I still have this story, all these years later. It reads pretty much as an Enid Blyton story. Although the plot was my own, it used the techniques, ideas and style of Enid Blyton, who was my favourite author in my childhood. I hadn’t deliberately based the story on her writing – it just happened, because she was the author I read a lot of. This also meant that my grammar and spelling was perfect, because I observed grammar and spelling from what I read, and learnt the patterns. My story was old-fashioned, and out-of-place next to the other girls’ stories of unfaithful boyfriends and teens with self-esteem problems. It was about a girl in a boarding school who stole pretty things because she had no money, and pretended to agree with everyone because she wanted them all to like her. There was a strong moral at the end, just like in Enid Blyton books.

Although old-fashioned and out-of-place, with a rather archaic style, it was a very good story for a 13-year-old to have written. I got an A. The teacher’s comments were ‘Marvellous: a story that ideally illustrates the title; extremely well written with a wide vocabulary; and beautifully presented. What more could a teacher want?!’

Now, as I write about this, I realise there are all kinds of things I could use from this story to illustrate aspects of Aspergers. I could talk about how people on the autistic spectrum are more comfortable with structure, or how we need assignments and expectations to be explained in a direct and specific way. I could talk about how role changes (such as when a teacher acts more as a chum than a teacher to the class) can be disorientating and unpleasant. But I was actually intending to use this story to illustrate something completely different – that is, the problems with organisation that people on the spectrum often have.

Later on in that term at school, there was a parents’ evening. My mother went to it, and she told me afterwards about her conversation with the English teacher. Apparently the English teacher had told my mother that she was finding it hard to figure me out. When I hadn’t handed in any work for the project, she had assumed I must be lazy. And then I’d handed in a story which totally astonished her. She raved to my mother about how good the story was, and also how much work I’d clearly put into it to make it nicely presented.

I have found, over the years, that this is a common reaction people have to me. When I don’t know what to do and thus don’t do anything or appear confused, people think I’m lazy or stupid – and then when I know what to do and do it, they are amazed at how good it is and how much work I’ve put into it. Then they don’t know what to do with their previous assumption about me being lazy and stupid, because the new evidence contradicts this. People see me as two extremes, and find it very hard to figure me out.

So I decided it might be helpful to explain it, from my perspective. I am not lazy. I am not stupid. However, my brain has a lot of difficulty making overall sense of something unless it explained clearly and specifically, and furthermore, if it is a huge task, requiring many different things, it’s as if my brain freezes.

One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload. So, for instance, when I saw I had to do a project about ‘me’, I saw in my mind every aspect of myself, every moment of my life, and I knew it was impossible to cover all this, and so I got overwhelmed by it and switched off my mind from it.

Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.

Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.

I’m now going to give the very different example of tidying my house. Actually, it was this example of tidying my house that first prompted me to write this entry. Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.

I have tried telling myself I will tidy one room, or one corner of a room, or one drawer, but whenever I do this, I seem to get stuck on certain objects, not knowing what to do with them or whether I need to keep them, not really wanting them but afraid to throw them out in case I need them, not having the prioritisation powers to know if something is important or not. So I frequently find myself sitting on my floor surrounded by stuff, feeling helpless and overwhelmed.

People generally think I’m lazy with regard to my house. I’ve been told that if I really wanted to tidy it, I would. I’ve been told that it’s easy and that there’s no reason why I can’t keep it tidy other than bone idleness. I find these assumptions frustrating. I know I’m not lazy. I know I will work on something for hours and hours, forgetting to eat, forgetting to sleep, paying attention to every little detail, if I know what I’d doing. But the messiness of my house somehow communicates to people that I’m lazy, in the same way as my not doing the ‘Me’ project communicated to my English teacher that I was lazy. These assumptions used to make me angry, but now I’ve pretty much accepted them as inevitable. People assume other people are like themselves. Even if you explain how your mind works to someone, if they haven’t experienced it personally, they never really get it. I think a particular difficulty with this house tidying thing is that many people have difficulty keeping their house tidy, so their reaction to my difficulties is ‘Me too!’ – with an added assumption that what works for them will work for me.

I have put a lot of time and effort into trying to find strategies to help me organise my life and tidy my house. It’s an ongoing struggle and causes a lot of frustration and unhappiness, because I’m atually very highly motivated in many ways, and so it makes no sense to me that I can want something so much, be able to intricately plan ways to achieve it, know that I have the intelligence and diligence to achieve it, but somehow be unable to make myself do it. In fact, I can sort of understand why people say I can’t really want it, even though this is not the case, because there doesn’t seem to be a logical explanation.

But there is one strategy that does work for me, when I employ it (actually making myself put it into action is another struggle!). And that is what I call the ‘ten things’ strategy. Rather than saying I will tidy a certain part of my house, I tell myself I will pick up ten things – these may be things to throw away or recycle or put away, but the point is that I pick them up and do with them what needs doing. Because the ‘ten things’ are unspecified, I can avoid things that I am unsure about. There is also no need to prioritise or sequence –  I can pick up whatever I want in whatever order I want. The only thing I have to focus on is the number ten. So I am collecting ten things – and it’s fun to work towards a number. Once I’ve done the ten things, the aim is to do ten lots of ten things – so 100 things. Again, there is a number to aim towards, and the things can be as small and varied as I like – a scrap of paper on the floor to put in the bin, a cup in the draining rack to put away, a bottle to put in my recycle box.

In some ways it seems like cheating when I avoid the more confusing things that I don’t know what to do with – but I find that the more small things I deal with, the less cluttered and overwhelming my house becomes, and then the easier it is to focus on bigger things. It occurs to me that this ‘ten things’ method could be applied to all sorts of things, and could be used with children on the autistic spectrum who are overwhelmed when told to tidy their bedroom, for instance. It can also be used by people who are not on the autistic spectrum, if it is helpful.

Anyway, I used this method today, which is what prompted this entry. I picked up ten lots of ten things downstairs and ten lots of ten things upstairs, and then fifty more things – so 250 things altogether. My house is still a mess, but not so much of a mess as it was. If I could use this method every day for a week, it will be interesting to see how tidy my house becomes.

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.