I am checking my diary for the following week. In the corner of Tuesday’s box, I noticed a little “R” and I know what that means: it means that on Tuesday I will contact my friend Rochelle. Perhaps I will text her, or send her a WhatsApp message with a picture of Loretta. I have a couple of days to formulate something suitably chatty and, above all, informal.
Is it odd that I schedule my social interaction? My friends don’t seem to notice. In fact, they consistently describe me as a considerate and thoughtful friend. I am the one who remembers birthdays and anniversaries, who asks about that doctor’s appointment they had a fortnight ago, or whether their mother has recovered from the nasty cold they told me about. They think that I am sweet to remember; to ask. But would they think that I was as considerate if they knew that, instead of acting on spontaneous social impulses, I was in fact responding to a prompt carefully pre-arranged with myself?
My diary is full of little initials like this. In fact, my diary is full in general, far fuller than an average neurotypical person’s diary. But whereas a neurotypical person’s diary will be full of social engagements, mine is full of reminders to do things that they do without having to be reminded.
I would love to say that it is just the time and particular friend that I schedule, but unfortunately, I would be lying. There are other lists – in my diary, on the notepad that I keep beside the phone, on one of the many, many notepads spaced at regular intervals around my house so that I can jot something down. A good example of these lists is one that I recently compiled for an email I was about to send to my friend Victoire. It ran as follows:
-How did the school play go – did she survive?
-Joke about my mum’s book club
-Portugese citizenship thingy
– Has she seen The Witcher, thoughts?
Yes, that was a conversation list compiled over the space of a couple of weeks for my future e-mail. I would be making lasagne, or playing squeaky piggy with Loretta and suddenly have a great idea of what to talk to Victoire about. I would rush to my Victoire conversation list and get it down in writing before I forgot. Victoire – a school teacher in Brunei – would probably receive that email and interpret it as a spontaneous chat, little knowing that it was carefully structured over a period of weeks.
Before I learnt that I was autistic, I knew that I was super organised. The term “fail to prepare – prepare to fail” didn’t even mean anything to me because I simply could not imagine my life without lists. I cannot shop without a list. I cannot do my laundry without a list, I have to note when it is time for the bed linen, when it is time for the towels, etc. I make mental lists, I make typed lists, I make handwritten lists that veer off to one side or squish along the side of the paper. Slightly more worryingly, I make lists in order to interact with other people – conversation topics, bits of news, schedules for contacting them. Well – I say “slightly worryingly”, and actually I am not that worried. Even when I thought that I was neurotypical, I was fairly accepting of my own rigidity, of the need to plan every last detail of my life. I didn’t know why back then, but I knew that the only way I could function was to organise myself with military precision. That organisation made me clean, neat, punctual and superficially very considerate.
Now, of course, I know that rigid adherence to routine and list compilation are two prime symptoms of Autism. And I am forced to investigate my compulsive list making on a deeper level. Yes, I admit that for me the constant bullet points are still the only way to navigate life and are therefore a coping strategy, but what is there behind the lists?
The fact is that if you took away my lists – the grocery ones, the future purchase ones, the house d.i.y ones, there would be….nothing. If any of my neurotypical friends made a list and then it was taken away from them, they would be annoyed perhaps, or exasperated, and then they would promptly continue with whatever they were doing. They would free-style, or wing it, or wait and see – all of those expressions that strike fear into an autistic girl’s heart. I simply don’t have the option to live without extreme levels of organisation. Life without lists wouldn’t even be chaos, it would be inertia. I have no other way of knowing what food to buy, when to do my laundry and how often to get in touch with my friends because none of that knowledge can be acquired sub-consciously or naturally.
There are those rare times when I live without a list, and they are the moments when I am overwhelmed. I have fairly frequent shutdowns, retreating to my room to sleep away the jarring, over-wrought feeling of having to cope with society and everyday pressures. This is pretty much the only unlisted time that I can think of, when I am curled in a ball in bed, trying to forget all the overstimulation whirring around in my head and take refuge in sleep. I know that shutdowns are the only way that I can remove myself from stress and are therefore healthy in a way, even if they look as though they are not, and I am also aware that the lists have only been postponed until I have recovered my equilibrium.
Like any coping strategy used by someone who needs a coping strategy, I sometimes wonder whether I stay in control by using lists, or whether they are in fact in control of me. Every day I journey through a series of things needing to be ticked off before I can move onto the next thing. And the next day? Well, the list starts all over again. If I manage to get through everything on my list, then the day has largely been successful. But if I have forgotten something, or not managed to tick something off then the day has failed. I have failed. This dependence of lists not only to get things done but also as a marker for my levels of self-esteem is why Autism can feel so suffocating. Suddenly I am a prisoner in my own routine, desperately scrambling to fulfil self-imposed tasks and beating myself up if I can’t.
Making lists is often prescribed in self-help books as a way of providing focus. But sometimes I deliberately change things up on my list or tell myself that I will make a plan much nearer the time and leave things for now. Lists are all very well, but I am prepared to be at the mercy of them most, rather than all of the time.
