You’ll see a lot of posts about the “symptoms” of autism that make people uncomfortable, such as visible stimming, alleged lack of empathy (which is, in reality, flatly untrue in most cases) and social awkwardness. However, there’s almost nothing out there about another access need of ours that can really throw a wrench into the proverbial works: a strong need for constant routine.
I can’t speak for all autistics, but I know a lot of people like myself, for whom routine is an absolute godsend. Every night while I’m waiting to fall asleep, I sort of run through how the next day should go in my head. I note things I have to do, things I should do and things I want to do – though not in any kind of tangible way; it all just floats through and adds up to a coherent whole. Everything is there for me to pick and take down from the mental shelf the next day.
While most of you are probably thinking about time frames and specific schedules, that isn’t actually how it works. It doesn’t matter if I write my article for my newest client at noon or at 2am – but it has to get done within the confines of that day, or it may never get done.It’s like snatching a shirt off a never-ending conveyor rack of dry-cleaned clothes (see photo, if anyone has trouble visualizing) – if I miss it, it cycles forward to a place where I can’t reach it, and I have to wait until it comes around again (that is, until I remember it exists) and try to get it then. Sometimes, to continue the metaphor, it will get snagged on an obstruction in the back of the shop – a nail in the wall, or a rogue ball bearing in the gears of the moving rack – and it may fall off the conveyor entirely.
I’m finding this metaphor useful, so I’m going to keep going with it. Imagine, if you will, someone coming into the dry-cleaner’s and throwing some kind of rag into the gears of the conveyor rack. It stops running. A horrible noise might come out of its gears that are straining to move. It’s plausible that the whole thing could fall apart and racks could come tumbling down to the floor. The clean shirts are now dirty and have to be put through again. The dry cleaner’s probably has to close for repairs. And maybe sue the asshole who ruined their works.
That is how my brain reacts when someone changes my routine.
It means that I have to spend spoons reconstructing it (not unlike the money and time the dry cleaner will have to spend to rebuild). It may mean, depending on the change, that something that needs to get done that day may not get done (if a dry cleaner doesn’t finish the work it’s set to be finished in a day, customers get very angry).
Both of these phenomena cause considerable anxiety. If something that needs doing doesn’t get done, I will let someone down (even if it’s only myself) and establish myself as Untrustworthy. If I need spoons to redo my routine, I have fewer spoons to expend on work, which may lead to something necessary not getting done. Either way, I lose focus, which can also impact my ability to work and function.
While I rarely melt down solely because of a change in routine, it can definitely turn my car from Hanging-In-There Street to Meltdown Road. For others, it super-charges their car and sends them all the way to the dead end of Meltdown Road where they crash in a fireball.
You may ask, but why is it such a big deal? Everyone cancels plans, everyone makes mistakes, everyone gets a little scatterbrained.
Yeah, but not everyone is raised with a neurotype that at best allows you to be ignored, and at worst allows you to be treated as a burden and a science experiment.
Even people like me, who were diagnosed late (or have never been diagnosed) have a very long history of being seen as disappointments, or lazy, or just plain “weird.” While the world can be an uncomfortable place for neurotypicals, especially those with a visible “minority” characteristic like being a person of color, it is unremittingly scary and disconcerting in a a different way for autistics. Routine allows us to control part of our lives, and control is safe. Everyone needs safety, literally everyone.
The best thing you can do, if you have an autistic person in your life who gets thrown by this stuff, is to be that person in the back of the shop who frees the things that get caught on that nail in the wall. If you can’t do it, that’s fine, but don’t say that you can. That’s just another part of a routine that can evaporate.
People cancel plans, or things change. That’s a part of life. But for us, it takes extra getting used to, because in addition to the damage control I described up above, I also have to (either consciously or subconsciously) tell myself repeatedly that my life isn’t going to fall apart because of what’s happened. Not going to a movie with a friend, or having a doctor move an appointment up, doesn’t affect my safety or my control over what happens in my own life. Eventually it sinks in. But not right away.