Autism and Fear of Uncertainty

As an autistic person I often wish I could know the future – then I could psyche myself up for it. But of course I can’t, and that leads to worry and uncertainty. Given uncertainty, my autistic brain tends to default to the worst possible option. So I like to know what’s going to happen next. That might be prior warning about a small thing like what’s going to be for lunch or making a plan for what I think it is going to happen. I don’t like surprises – particularly sensory or social surprises – so if I don’t know what’s going to happen I try to work out all the options of what could happen. That can quickly lead to being overwhelmed by far too many options to work with. And that’s a recipe for paralysis.

What happens next?

As an autistic person I often wish I could know the future – then I could psyche myself up for it. But of course I can’t, and that leads to worry and uncertainty. Given uncertainty, my autistic brain tends to default to the worst possible option. So I like to know what’s going to happen next. That might be prior warning about a small thing like what’s going to be for lunch or making a plan for what I think it is going to happen. I don’t like surprises – particularly sensory or social surprises – so if I don’t know what’s going to happen I try to work out all the options of what could happen. That can quickly lead to being overwhelmed by far too many options to work with. And that’s a recipe for paralysis.

Pulling the rug from under me

A colleague used the expression “the dreaded rug-pull” in a seminar I was in for Neurodiversity Celebration Week and it struck me as a wonderful expression for incapsulating part of my autistic experience. There are times where I fail to pick up a coded message or an implication, and later realise I’ve been getting everything wrong. It’s particularly humiliating when the thing I’ve failed to pick up is a criticism or a rejection. I’ve also had several managers who were so subtle or nuanced in giving constructive feedback that I had no idea they wanted something to be done differently until they criticised me for ignoring their feedback all year. Possibly as a result of a lifetime of experiences like that I can now have self doubt so extreme that my automatic assumption is that I’m wrong, leading to me setting aside everything I’ve ever believed in a split second because I trust what I’ve just heard more than myself. It’s a bit like having the scaffolding that I rely on to cope with the world knocked away, but in mental rather than physical terms.

“The Dreaded Rug-Pull”

Have you ever had the rug pulled from under you? If you’re autistic like me you may well be visualising a cartoon scene of a character literally pulling away a carpet from under another, but what I’m meaning is those moments when it feels like everything has changed and the world has shifted on its axis. For example – you might have been feeling that things were going basically OK at work, when a colleague says “we’ve been putting up with you for years but we don’t really like you”. In that moment, the whole landscape of how you thought the people around you related to you (and each other) shifts, you’ve lost your figurative footing, and are lost, fallen over and humiliated. I’ve used an extreme example but my autistic life has been full of moments when I’ve felt as though everything has suddenly rearranged itself in a new shape and I doubt everything I previously thought I knew.

Change limericks

It ought to be possible to build reasonable adjustments for autism into change management. But that probably sounds very difficult, doesn’t it? It does to me and I AM autistic. But it needn’t be, I hope. As an autistic staff member, the things I fear about change are loss of the scaffolding around me that I need to function, and humiliation that I may miss messages that everyone else picks up. It’s often the case that change management communications are couched in hints and nuances that “those in the know” will pick up. That might feel like a good way to do communication fitted to multiple levels of understanding, but it excludes autistic colleagues and leaves us feeling that we’re fools for not “reading between the lines”.

Literal Change

Many people believe that autistic people can’t cope with change or uncertainty, but I think in fact the issue is that we struggle with how neurotypical people communicate change. We don’t understand hedging around the issue or hints, and so are in a constant state of stress about what it is we’re missing. It’s also common that what a neurotypical colleague will think important isn’t what we think important, so we may not get any communication on what matters most to us. If change is communicated clearly and literally, then I think we’d all do much better.

Change Clarity

It’s a common misconception that autistic people like me can’t cope with change or uncertainty. I don’t think that’s the case, or it needn’t be. Change can be terrifying for many people, and for autistics in particular, but that might be because of poor communication or failure to understand that what matters to most people isn’t automatically what matters to us. We depend on “scaffolding” to cope with the world, and change can make that scaffolding fall away until it can be rebuilt. But that problem can be mitigated with some fairly simple steps.

Autistic-friendly Change

Change is terrifying for many people, and for autistics in particular. We depend on “scaffolding” to cope with the world, and change makes that scaffolding fall away until it can be rebuilt. It can also be particularly difficult to cope when the scaffolding needed to hold us up is something the rest of the world sees as silly or inconsequential. How CAN having the right mug for your coffee make all that much difference? So change means fear of loss of the things you need to cope and likely inability to get them back. And that’s even before we’ve looked at the new “scripts” for dealing with the world that will have to be re-written for the new circumstances (imagine having to write yourself a new phrase book for every job change), and the ever present anxiety and fear of rejection. So broadly speaking autistics fear change. But it OUGHT to be possible to do change in a way that works for autistics oughtn’t it? I’m trying to work out how.

“Silly” little things matter

As an autistic professional I’ve built up some very careful “scaffolding” around how I operate that makes things possible. The scaffolding is a range of little things that might appear totally insignificant to someone neurotypical. Examples might be always having the same drink, sitting in the same place, tackling tasks in a certain order, taking a break at a particular time. Those little things – which seem silly – make it possible for an autistic person to function. Take them away and, like taking away scaffolding, things become wobbly, difficult and dangerous. The whole structure of the person’s mental health may collapse.

Change is terrifying

The professional world we live in is full of change – evolution, development, occasional revolution. I was talking about this with a wise senior colleague and I pointed out that autistic people find change disconcerting at best and terrifying at worst. This colleague asked a very simple but profound question: why? I realised I had no idea so I thought I’d try and think it out. Please do tell me if you agree or disagree with what I’ve come up with.

My experience of being an autistic professional is that I’ve built up some very careful “scaffolding” around how I operate that makes things possible. Change means losing that scaffolding and having to rebuild it, and until it’s rebuilt I feel very unsteady and liable to fall over. No-one else can see the scaffolding, and I can forget it’s there, so it’s only when it’s unexpectedly taken away that I notice. But having forgotten that I have scaffolding I’m depending on (because I’m so used to it), I don’t necessarily see the effect of change coming until it comes. So it’s a nasty shock.