For autistic people, change is hard. Sometimes good, but always, desperately hard. I’ve written about this before, in terms of how I manage the short term effects. But I wanted to devote some time here to exploring how change actually feels from my autistic perspective.
To understand the impacts of change, you need to appreciate the importance of routine. Routine is a huge part of my existence. All of my “adult functionality” – shopping, cooking, cleaning, paying the bills – is built upon a broad supporting framework of repetitive tasks. My routines are the rocks and scaffolding of my life: stable; affirming; immutable. They’re intrinsically entangled with my sense of external reality. Routines are the tethers that anchor me to the outside world.
Most days when I get out of bed, I follow the same routine. There is always breakfast, with delicious milky coffee. There is always a shower. On weekdays I switch on the radio and listen to the news while I get ready for work.
The job I do has very little formal structure, so I’ve had the space to develop my own routines, which fit me as comfortably as a favourite pair of jeans. I walk to the office by the same route each day, and go up the same stairs to the same desk, which is laid out clearly with everything where I expect it to be. At lunch time I go for a run or gym class, and afterwards eat my sandwiches quietly at my desk while dealing with emails. My evening routine can be different each night, but always involves dinner, planned carefully in advance to be preparable within the time available. It’s hard to make those decisions after a day in the office.
On weekends I try to relax and let things go. I don’t always decide in advance where I’ll be for lunch or what I’ll have for dinner. But I always have breakfast. And there is always some sort of plan.
The days when I don’t plan are empty days. Sometimes I read; more often I write. I lose all sense of time. I eat when I’m hungry and sleep when I’m tired. There is no news, no voices on the radio or phone – rarely does anyone share my empty days. These are the beautiful, lost eternities that I spend in the labyrinth of my own mind. The empty days are the reason I know that routines are just my way of navigating a strange, Escher-like world.
When routines are the tools you use to give shape to the confusion and chaos of life, then change can be dangerous. Not all change, oddly enough; but predominantly the changes that interfere with established routines that keep me grounded and functioning. If I know about a change in advance, I can identify the ways it might disrupt my routines and carefully work through how they need to adapt. Sometimes, though, that doesn’t happen.
The extent of the distress caused by unplanned disruption can be difficult to believe unless you’ve experienced it yourself. I’d like to illustrate with an example. My workplace has made a lot of changes recently, which included within the many details a modification to office protocol advising people not to eat lunch at their desks. This is something I do frequently, since I’ve often been for a run, and I can use the eating time to get focused on what’s coming up that afternoon. And having food on schedule is a big deal for me. But amongst all the other changes I’d meticulously prepared for, even I had completely overlooked this as trivial. So the moment I realised this was an issue was when I sat down at my desk after a run one day. Run ragged and disoriented by the disruption going on around me, it dawned on me that I was hungry and hadn’t eaten. But I wasn’t supposed to eat at my desk. This was email time and food time, but they couldn’t happen at the same time any more. And there were other constraints on my time. Time. Food. Emails. My brain just stalled.
And I actually considered not eating the food. Because that was easier than breaking the physical routine of being at my desk at the right time, checking my emails and trying to herd my scattered thoughts into the space of an afternoon.
(I have some sense. I know how strongly not eating correlates with meltdowns. I ate the food.)
One example, but illustrative. A small change in the wrong place, unexpectedly disrupting a routine, makes everything harder. When the disrupted routine is one involving a basic need – food, rest or sleep – then that basic need is likely to be neglected. In the presence of any external pressures, in a life already warped to fit an alien world, the rapid spiral downward can be hard to control.
I am not averse to change. In fact, I strongly believe that change is necessary. Not for its own sake, but as a part of learning and growing and living life to the full. Whatever I believe, though, it doesn’t make the process any less painful.