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.

The First of April – a Rant

The first of April is a deeply annoying day to me, as an autistic person. There are two reasons – one is the aggravating fact of April Fools’ Day pranks. My life is full of the potential for misunderstandings and I have to concentrate very hard to avoid making a fool of myself. The pleasant frisson of wondering which news stories and social media posts are real and which are jokes (that you’ll feel silly if you fall for) is one day a year of fun for the neurotypical. And some April Fools’ jokes have been extremely funny. But the novelty for most of potentially being caught out, is the day to day reality of trying not to seem foolish to me. I could do without extra things trying to catch me out.

But the second reason for aggravation is about the well-intentioned, but sometimes harmful, use of April as “World Autism Awareness Month”. I haven’t suffered too much myself but I know of many autistic people who just disappear from social media in April because seeing all the kindly-meant but patronising incomprehension about autism is just too painful. A piece of “awareness raising” for us but not with us, that has the effect of making our lives harder, is not a good thing.

Why is my autistic staff member so difficult??

I’ve written about the autistic experience of feeling bullied and coming to realise it may not be your fault. If that happens, the first priority is to look after yourself – to recognise the emotions you’re feeling and to seek help. But in order to get some change in the world it’s worth reflecting on what it feels like from the other side. A neurotypical manager may simply find an autistic staff member really difficult to deal with. Acknowledging that doesn’t meant putting the blame on the autistic staff member – if you’re autistic you have a disability that is protected in legislation, and the effects of your disability cannot conceivably be your fault. It might help the manager, though, and other leaders in the organisation, to reflect on how and why a they are getting wound up. For example, I’ve had an experience in the past when I was finally told what a manager had been reading in to my words – it wasn’t what I’d meant at all – but it was a great breakthrough for me in understanding what had gone wrong.

I find myself talking to autistic professionals from all different organisations and types of jobs and one thing has come out consistently at all levels when things have gone wrong. Where a manager lacks confidence, or possibly even competence, they can find an autistic staff member difficult to take.

“I’ll just pop round…”

Are you one of those colleagues who loves to “pop round” to someone’s desk to “have a chat”? It’s a way of showing informality and equality, and of being spontaneous, isn’t it? Well yes, it can be, but it can also be quite disruptive for someone who relies on not having too many unexpected things to deal with when they’re trying to concentrate. Of course there’s nothing inherently wrong with popping round to a colleague’s desk – we all do it and it’s one of the reasons working in the office can be particularly productive. But there are some colleagues who use it as their only way of communicating. The danger is that in doing something that feels comfortable to you, you’re doing something that makes a colleague feel uncomfortable. Some kind of flexibility on both sides is probably needed.

It’s really simple… provided you understand the unspoken instructions…

Suppose you want to give someone a nice simple instruction – you don’t want to confuse them and you do want it to be really really clear. You might say “always do THIS” mightn’t you? If you get the end of a sentence, always put a full stop. When you get to a road, always stop, look and listen. When you get up in the morning, always make your bed. Sounds helpful doesn’t it? But you’re presupposing a lot of neurotypical responses that an autistic person might not have. A neurotypical person will be able to read “except when it doesn’t make sense” into your words. An autistic person may not.

If I were going to be autistic at you (as opposed to masking, which I do most of the time) I’d interpret your three instructions thus. If I always need to put a full stop at the end of a sentence, then, since they come and the end of a sentence and shouldn’t be followed by a full stop, question marks and exclamation marks must be forbidden. If I should always stop, look and listen when I come to a road, then I must do that even though I’m in the countryside, there isn’t any traffic for miles, and I’m being chased by a bull. I will only feel compelled to make my bed if I get up before midday (“in the morning”), and I will also carefully rearrange the pillows and duvet before leaving even if I’ve been woken by the fire alarm because the house is on fire. (Provided it’s the morning.)

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.

The First of April – a Rant

The first of April is a deeply annoying day to me, as an autistic person. There are two reasons – one is the aggravating fact of April Fools’ Day pranks. My life is full of the potential for misunderstandings and I have to concentrate very hard to avoid making a fool of myself. The pleasant frisson of wondering which news stories and social media posts are real and which are jokes (that you’ll feel silly if you fall for) is one day a year of fun for the neurotypical. And some April Fools’ jokes have been extremely funny. But the novelty for most of potentially being caught out, is the day to day reality of trying not to seem foolish to me. I could do without extra things trying to catch me out.

But the second reason for aggravation is about the well-intentioned, but sometimes harmful, use of April as “World Autism Awareness Month”. I haven’t suffered too much myself but I know of many autistic people who just disappear from social media in April because seeing all the kindly-meant but patronising incomprehension about autism is just too painful. A piece of “awareness raising” for us but not with us, that has the effect of making our lives harder, is not a good thing.

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.

Autism Acceptance Week

This week – 27 March to 2 April – is widely recognised as Autism Acceptance Week by charities such as the National Autistic Society and many others worldwide. Using the term “Autism Acceptance” is a huge step forward from “Autism Awareness” – because what we need is for autistics, and our autistic behaviours, to be accepted rather than just noted. I am “aware” of a lot of things – being “aware” of something does not mean one welcomes or even tolerates it. By contrast “acceptance” moves things on towards a time when autism will be less something to be remarked upon – which is definitely a step in the right direction. A lot of excellent work happens around this time of year, and I’d like to highlight that today, while reserving the right to have a rant about some sub-optimal areas of autism campaigning later in the week.

“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.