That wasn’t the plan!

In a society that celebrates spontaneity, flexibility and trying new things, being autistic can be profoundly uncomfortable. If I’ve planned to do something and I can’t – for whatever reason – I can feel very unsettled. It’s something about the discomfort of surprise as well as loss of control – and if your life is generally pretty stressful and uncomfortable you may depend on controlling as much as possible in order to cope. I also have a sort of feeling of failure if things change, which I realise is odd. I noticed it recently and I’m still working it out.

I had planned to see a group of friends one afternoon to play music together. When it came to the day, though, I was unwell. During the morning I agonised about that – was I really unwell? Given that discomfort is something I usually have to just manage in the neurotypical world, was there really a problem or was I just being less effective at coping than usual? If I dropped out, I would have to explain to my friends why – that would be difficult. There might be emotions I’d have to respond to such as concern, interest, disappointment, feeling let down… Having to handle those would be potentially stressful. Wouldn’t it just be easier to grit my teeth, pretend to be fine, and carry on? It’s definitely an autistic trait to be a bit poor at recognising when you’re ill or in pain and I nearly decided that managing the physical symptoms would be the easiest option.

Eventually I accepted that I was ill and it was best not to go. I rationalised this by deciding it was best not to risk infecting anyone else with an illness, rather than doing what was right for me – given the mental muddle described above. It was a relief not to have to go out, because I really did feel a bit rotten. My friends were very understanding when I cancelled by email and text message (to avoid having to speak to anyone). There were no difficult emotions to cope with – they didn’t say I’d let them down – even though I had slightly messed up the musical plans by not being there. But I still felt really anxious, stressed and unsettled, without really knowing why.

Reflecting on it, I realised that doing something other than what I’d planned to do – even when it was 100% the right decision for all kinds of reasons to change plans – made me feel like a failure. I don’t mean I felt a failure for being ill – on mulling it over I realised I felt as though “going to my friends’ house to play music” was the thing I was supposed to have “delivered” that day (office jargon – sorry), and I had failed to do it. Again – it wasn’t that the trip was a duty or work that I needed to do – I just felt that I’d had a list of activities to tick off in the world that day and I had Failed To Do One. It was a very strange feeling.

The best articulation of the autistic need to stick to plans I’ve encountered comes from the Geek Girl series of books for teenagers by Holly Smale. The main character – Harriet Manners – is never actually identified as autistic in the books although the author has subsequently said that she is. Harriet relentlessly over-plans everything, to frequent comic effect when things go wrong, and to the occasional annoyance of her friends. Harriet’s need for plans to be fixed and unchanging is reflected in her tendency to laminate them, and her discomfort every time things alter comes through her first-person narration of the stories beautifully.

Contrary to the stereotype, though, Harriet Manners (and I) cope reasonably well when plans change as a result of other peoples’ actions. Maybe a plan changing because of things that are outside my control doesn’t have that weird edge of failure to it that oppresses me if I have had to make a change myself. For example, if plans change at work – and they have frequently during the last few years for obvious reasons to do with Covid and changes of Prime Minister – I just adapt. I think I’ve internalised the idea that while “not sticking to the plan” may feel like a bad thing, so long as it’s caused by something or someone other than me, that’s OK.

I haven’t (yet) worked out where this fear of failure comes into changing plans – in addition to the autistic desire to avoid sensory and social surprises. But the discomfort of things going not to plan as a result of me is real – after all, in the example I gave I very nearly forced myself to do something totally unnecessary when I was ill out of a feeling that a plan must be stuck to. That’s a really strong driving force. Other autistic peoples’ experience may vary but there does seem to be some strong emotional loading to the idea of change and going off-plan, and I can’t account for it. This may take more thought than I’d planned…