is change a problem for autistic people?

Content Note: in this article I answer the question “is change a problem for autistic people?” by talking about coping with unexpected situations and how and why that impacts my capacity to complete tasks.

They say Autistic people don’t cope well with change and unexpected events, insist on routine, and can be oppositional if they don’t get what they prefer.

It’s just not that simple.

On Tuesday night, as I often do before I go to bed, I made myself a list of the things I’d like to get done the next day.

My list had a few things on it- some errands to run after taking children to school, some housework tasks, some writing for my website, and a fairly important phone call. I also had a client to meet with in the evening.

I knew I could get through the list in a day, as long as I slept reasonably well (a subjective statement! I don’t sleep well by most people’s standards) and as long as nothing unexpected happened.

I didn’t sleep particularly well, not even by my standards. I started Wednesday feeling wonky and knowing I wouldn’t get through the whole list. So I modified it by removing the housework tasks and writing.

I created an energy budget that would allow me to complete the most pressing tasks on the list and still have sufficient reserves for my client in the evening. I scheduled space for two rest periods in the day instead of my usual one.

I set out. Took children to school. Ran my errands. I could feel myself struggling with some decision making. I decided to bring my first scheduled rest forward in the day.

And then, my car wouldn’t start.

It turned out to be something uncomplicated and easy enough to resolve. It took two hours to get the car back on the road, be finished with the necessary follow up to ensure I didn’t have the same problem again, and to get myself back home.

But, during those two hours I had to make two phone calls, interact in person with 4 people I hadn’t expected to, sit in a noisy uncomfortable environment for an hour, make some significant financial decisions, and delay the rest and sensory regulation I needed during the whole process.

I used all of my energy budget for the day in those two hours.

Back to my opening statement.

Sure I’d have preferred not to deal with a car issue. No one likes that. The unexpected nature of the situation isn’t great for anyone, I’d expect. My routine was thrown out, yes. But those things weren’t the problem.

The problems were needing to process a whole heap of challenges to my sensory processing and executive function resources that I didn’t have energy budgeted for.

If I’d had someone with me who understood my needs and could support and help me it would have been much easier. If I’d had my noise canceling headphones with me, I’d have managed better. But I had neither.

So I dug deep and got through it, because I had to. I didn’t cry, I was polite, I kept a calm appearance, talked to the people I needed to, and I masked like a boss.

Then I went home and got into bed with my heavy blanket and heated wheat bags and tried to get regulated enough to continue my day.

I forgot to eat and drink. I didn’t realise I needed to use the bathroom.

I didn’t sleep, but my brain shut down for a while. It’s a feeling a bit like dozing for me but not quite the same.

When I had to get up to collect children from school I badly needed to pee and eat. I ate so quickly I made myself feel ill.

I didn’t get any house work done, any writing done for my website, or make the phone call I needed to.

I did get the children collected from school.

I made it through the afternoon with the help of another rest. I went to work and did my job competently. I came home and even wrote a post for Facebook (which was good because it freed up some energy by unblocking my brain thought processes).

Why do I tell you all of this?
Two reasons.

1. I am an adult. I can articulate my experiences. I have had a fair bit of practice at living with myself and understanding my needs and making sure they are met. Autistic children are children, can’t articulate their needs well a lot of the time, and need practice living well. I want you to understand that their needs are very similar to mine. It is vulnerable and uncomfortable sharing with you how I struggle, but it is important for you to understand the challenges the Autistic children in your life live with.

2. If you’d seen me last week for two days speaking at a conference and running a whole day workshop the next day, you’d have been tempted to think about “high functioning”… if you’d seen me in bed yesterday afternoon you’d have been tempted to think about “low functioning “… Fact is I’m both and functioning labels are a load of irrelevance. There are so many factors at play in how well any of us function at any given time and Autistic people are the same. I hope that sharing with you today helps you understand this, the complexity of Autistic children’s needs, and why consistent and appropriate support is so important even for Autistic people who can make it appear they are doing well.

And now to address the question in the title of this article.

Autistic people do struggle with change and unpredictability. But it’s not just because we don’t like change.

We struggle with change because of what it costs us in terms of increased demand on our sensory system, executive function resources and how it impacts on our energy budget.

If we are well supported during a change or unexpected event we find it much easier to navigate and to manage the increased demands the new situation places on our bodies, our processing and our emotional responses to all that.