My struggle with routines, change, and unpredictability is probably my most obvious autism-related issue to friends and family.
Autistic brains are (amongst other things) hard-wired for structure and order. Unfortunately, the world rarely conforms to this! After my diagnosis, I saw more clearly how this was impacting my day-to-day. For example:
I regularly broke down in tears after becoming stuck and agitated on Saturdays. The structure of the workweek had suddenly disappeared and I did not know what to do with an empty schedule.
I could spend hours and hours rehearsing simple routines… Like how I would get to the shop five minutes’ walk away, exactly what I would do between getting up and starting work in the morning, when I would use up which vegetables in my fridge.
When living with a partner, I could easily end up in a meltdown when they wanted to change something arbitrary. Like when to go out for a walk on a completely plan-free day, or which TV show to watch.
So, what to do?
Knowing what to expect is extremely important for me. Of course, things will sometimes change (I’ve got a separate article on handling change). But there are things I can do to ensure that what is within my control feels less chaotic. Freeing up a valuable bit of brain space for the rest of what life throws my way.
Here are seven things I’ve tried, the impact, and what I’m going to do with them in future. I don’t have any affiliation to anything linked below, it’s just what I use.
Experiment 1: Having set routines for repeated activities
What is it? Idea stolen from Christine Lion’s book, I chose set routines for repeated activities. I started with one each for waking up, coming home, and going to bed. I put them on my whiteboard. In the book, Christine also suggests having variations of these for when e.g. you only have five minutes to complete it, when you are travelling, when there are other people around. At the time, I was working from home during a lockdown, so variation did not apply!
What happened? With tweaks, these have been really helpful for grounding me in moments where before I often got anxiously stuck (in the morning) or frantic (coming home). I ditched the going to bed one, because I found that I was unable to follow the exact same routine every night. Not following it was stressing me out, so I removed the expectation. However, the others have been great. I especially noticed this when staying in a new place for a few days. One morning I woke up and felt completely lost and upset and stuck. Then I remembered the routine on my whiteboard at home, “pressed play” on that, and off I went. Much better.
Experiment 2: Planning everything that can be planned for travel
What is it? Perhaps self-explanatory(!) I was doing this in an uncontrolled way before. That ended up taking loads of brain space over a long period of time. Now, when I find out that I have to go somewhere new, I let myself stop. Straight away. And make a plan. A really detailed one… If it’s a big journey and I’ve booked e.g. a particular train seat, I’ll look up the train seating plans online for the type of train I’m taking (only recently discovered these exist, they’re great) so I know what to expect when getting on the train. I’ll work out my leaving time and my backup leaving time and add the journey times, bus routes, etc. to my calendar. I’ll look up street-view and inside pictures of the place so I know what I’m dealing with.
Once, for a work party, I asked the organiser for some more information about the venue. She was able to send videos and pictures, showing where loos / food / drinks would all be. It really helped put me at ease. The main thing for me is to allow space for all the planning to happen in a more deliberate way.
What happened? This has helped minimise travel stress a lot. Don’t get me wrong, travel itself can still be extremely stressful and overwhelming… but the amount of brain space taken up before the journey is smaller now because of this. Before, I could go over journeys on an almost daily basis for weeks before they happened. Which was exhausting. Now, I get all the planning out of the way in one go, deliberately, and then I know I’m “safe” to stop thinking about it until the day arrives.
Experiment 3: Having a visual daily schedule
What is it? Every morning I put some magnetic whiteboard cards (like these) on my whiteboard to show what I’ve got coming up through the day. I have the full set lined up on my radiator so can pick and choose, or edit them if I need to. They’re colour coded, so I can quickly see if I’ve got a very people-heavy day that I might need to balance out later.
What happened? This too has saved a lot of brain space. I used to spend a lot of time mentally rehearsing what was going to happen. If it was an “unusual” day this could happen hundreds of times on repeat, which was exhausting and distracting. As an extra experiment, I did try two days without this, having done it consistently for a few months. It was awful! I felt so confused all day about what was going to happen. And went straight back to the constant rehearsal. Having a visual reminder, outside of my brain, helps take some of the computing away.
Experiment 4: A visual reminder of the day of the week
What is it? On a whiteboard, every day I write “Today is [whatever day it is]”.
What happened? I felt weird starting this, it seemed too basic. But again, it’s freed up a surprising amount of brain space. I later started to add any times that I have to be somewhere too, as an extra visual reminder on top of the rough schedule mentioned above. One day I noticed that I’d been feeling really confused and disorientated about the day, and had been running my week through in my head a lot. It wasn’t until the evening that I noticed I’d not written any day on the board that morning…
Experiment 5: Learning to be flexible based on interoception clues
What is it? Sort of the reverse of everything else I’ve said. Because I am so rigid about sticking to a plan and needing certainty, sometimes this works against me. I can ignore tiredness, illness, strong emotions, for the sake of avoiding change and uncertainty. I’ve started paying more deliberate attention to interoception clues (more on that here), so that I can take that into account. I will now sometimes change (e.g. cancel) my plans depending on how I am feeling.
What happened? Well, I do a bit less now… but what I do do is far more sustainable. It’s been relatively straightforward to switch from e.g. spending an evening writing to spending an evening watching TV if I’m too tired to keep thinking. It’s less easy to say no to social plans because I’m too drained to face people. But I’m getting there. And it is worth it, because I know how much energy it saves. Socialising is tiring at the best of times, but when I’m already running on empty, the impact is even bigger.
Experiment 6: Fortnightly meal plans
What is it? Working out how I would use up the food in my house used to take up a lot of brain space. Getting everything in the right order so that nothing went out of date. While still getting a good balance of nutrition across the weeks. I decided to get a food delivery every two weeks and have a meal plan for everything in advance.
What happened? Having a plan helped a lot. But my issues with taste/texture meant that sticking to a particular order caused anxiety. Some things would just be too difficult to eat on days when I was feeling overwhelmed (more on that here). So I am more flexible now. Instead of a fixed meal order, I list out the proteins I have in the house on a whiteboard and wipe them off as I go. I also get more frozen or cupboard things so that the proportion of things that have to be eaten in a certain order is minimal. I still get anxious about fresh veg going out of date on weeks when I’ve not been able to eat too much of it. But I have budgies now, who get veg every day… That means less waste and less guilt about me not being able to eat it!
Experiment 7: Asking for plan details sooner
What is it? When I’m making plans with someone, I won’t leave things tentative for very long. If I’m not sure what’s happening, or I need more details, I ask. I used to feel bad about doing this, as though I would be annoying someone. But usually (a) no one actually minds, and (b) they understand why it matters to me so it’s not an issue anyway. And anyone who does have a problem with it… well. We’re probably best off not spending too much time together.
What happened? Doing this has made lots of social situations much easier. When I know what to expect, I can picture how it will be, how it will feel. And I don’t waste brain space planning for ten million possibilities. There are work socials that I have only been able to attend because I have started doing this. In the past, I would have dropped out. But taking time to ask the organiser exactly what will happen (who will be in a group with me, exact timings, what the ice-breakers will be) has taken away a huge chunk of anxiety and made these events accessible.
Lauren x