How to change the world

It’s all too common for autistic people to be victimised, which is an extremely bad thing, but how to change it? Autistic people can be total prats ourselves, and we’re capable of bigotry and just as many bad things as any other human. So it’s not that we’re poor little people who need the world to look after us like helpless children. It’s easy to get very angry about the ways in which the world is cruel to people who are different and that anger can be absolutely right. But anger may not be the best way to change things right now.

I get very angry about a lot of things – including how my fellow autistics get treated all too often. But in order to change that I (we) need to persuade the world to see us as fully human. Boring, normal and ordinary. And shouting angrily at people may not be the most persuasive way to do that. We’re approaching the season of the Christian year when people thing about how their lives could and should be better: the season of Lent. It’s a big trait in Christian thinking that rather than telling other people off, you should sort yourself out first. Being an example of how the world ought to be is more effective than wagging a finger. And I’m fully aware that Christians are not always particularly good at doing that and self-righteously wagging a finger at other people is sooo much more fun than being a better person yourself. So much, so human.

Imagine being an autistic refugee

Early in the morning of 24 February 2022 Vladimir Putin announced a “special military operation in Ukraine” which actually meant an invasion. It’s a year since then and Ukraine has survived, held out and succeeded far more than most people had thought was possible. Many countries – including the UK – have sent help and support to Ukraine and also welcomed Ukrainian families fleeing the warfare.

Statistically, some of those Ukrainians fleeing the war must be autistic (assuming 1%+ of the population are autistic). Imagine what that would be like – if you needed certainty to function and feared change – suddenly to lose everything you relied on. Many people find moving house extremely stressful (second only to bereavement for stress levels, apparently). My autistic brain finds moving house incredibly traumatic – as an illustration, my stress dreams are about packing up to move house and I haven’t moved house for more than ten years. If you’re still have nightmares more than ten years on, that was a trauma. But those were house moves that were chosen, and planned. Imagine having just a few hours to pack up and leave everything you had ever known. An autistic person might have been relying on all kinds of “scaffolding” to function – a particular room, cup, view, sound – and that would be gone forever. You’d be fleeing your country with what you could carry, having to cope with next to none of the things you needed around you.

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.