“Improved” doesn’t mean “better.”
“Improved” doesn’t mean “better.” Improved is change. And change in and of itself is hard for many of us. Even if the new thing is so incredible it does things seamlessly, securely and makes me a cup of tea while it’s at it, it’s still new. I will still need time to get used to it. And I will still feel genuine distress when I realise what I am looking at is not what I am used to looking at.
Chris, teacher and researcher
To coincide with Autism Awareness Month, this month’s blog is from autistic teacher and researcher, Chris, who explains one of the most commonly faced difficulties for autistic consumers: change. Specifically, updates.
Everything we do here is built by lived experience, but if you are reading this representing a company, remember that Autism Awareness Month is a divisive and emotive subject in the autistic community, as awareness days, weeks, and months are in many communities. Be very careful if you are putting events on or using hashtags on your socials. And follow the basic principles. Speak to autistic people. If you are seeking advice, which is always a good idea, make sure you pay people appropriately for their expertise. Read and listen to the community. And don’t talk without acting.
About Our Blog Series
Welcome to the second in our monthly series of blogs looking at the support that would enable people with accessibility needs to use everyday services with as little disruption to their lives as others do (or at least, as little disruption as possible).
Each entry in this series has been written by someone with lived experience of a particular support need.
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With that, here is our fourth post, from teacher and researcher, Chris (name changed)
New and Improved
Most of us will know the feeling of looking forward to a favourite food only to experience a sinking feeling when we find out the recipe is “new and improved”, which we all know means “inexplicably made to taste nothing like it used to.”
For most people, this is disappointing, or briefly upsetting. But for many of us who are autistic, change can be incredibly distressing, and disabling to the extent that we become unable to use things that had previously been available to us.
When the thing that changes is the way the screen looks when you log onto your bank account, then the inability to use things that have changed can have catastrophic effects.
I know that the difficulty I face with change is something that’s almost impossible to explain. People who find change awkward or inconvenient will think “but I manage. Why can’t you?” And people who barely notice, or for whom an improved functionality more than makes up for any unfamiliarity, the reaction, even when not expressed as such is clearly, “Stop being such a snowflake.”
So I don’t expect you to understand what I mean. But I can explain how it affects me. And I can tell you that change causes the kind of distress most people would associate with an extreme loss or with physical pain. I can tell you that even change that makes things objectively better has the same disabling effect as change that makes things worse. And I can ask you to believe me. And to listen to what I say I need as a result, and do your best to meet that need. Even if you don’t understand from the inside why you are making it.
So before I tell you about my bank, I’ll tell you about my cutlery.
I’ve used the same set of cutlery since I was a student 30 years ago. It has red handles and red is my colour. The knife has a nice pointy tip that means I can pick up bits of cheese on it. It’s not expensive cutlery. It’s not posh cutlery. It’s fairly knackered cutlery. But it’s my cutlery. If I go somewhere else, I can eat with someone else’s cutlery. But it feels wrong, and I have to remind myself that it’s just once. That I will be able to use mine next time. If I’m at home and my cutlery isn’t clean, or my spouse brings me food with a different fork, I can’t eat it. Sometimes I sit and look at food I don’t know how to eat and feel confused. Or sob. At times I have thrown the plate, food, and wrong fork onto the floor and screamed. (These are reactions autistic people will recognise as shutdown and meltdown).
Originally the set had 4 of everything (though there’s a small machining error in one of the forks so I can’t use that one). Now there are fewer items. I know that one day it will wear out altogether and I will have no choice but to find a new set.
Of course, I know in my head that this makes no sense. So when people try to explain it to me as though they’re teaching me something I don’t already know they just come across as patronising and not listening. Knowing it in my head doesn’t stop my teeth being set on edge, all my senses feeling wrong, and my mind just going nope. And that doesn’t help me eat.
What I have learned from decades of experience, even before I realised what the reason was when I was diagnosed autistic in my mid 40s, is that I can manage the situation by giving myself a long time to get used to living with something new while I still have the old to use day to day, while slowly (and by slowly I mean over the course of months and years) transitioning what I use.
I bought new cutlery 6 years ago, after months of searching for something that felt “least wrong.” I can now use it once or twice a week.
This isn’t just about cutlery, of course. It’s everything I use on a regular basis. When I needed a new laptop because the old one was so slow I was almost unusable, the new one had to sit by my sofa unused before I could even open it, let alone turn it on and face the new layout.
And that’s where all this is relevant to services. A new layout is just as distressing and difficult to manage as a new thing.
In a world where technology moves incredibly quickly, this makes it almost impossible to keep up with essential updates to the platforms I rely on.
What is really galling is when updates are made that are not essential, and which I have no choice about when or whether to implement. And when those updates come from my bank, it creates the very real likelihood that I will be unable to pay bills on time even though I have the money to do so.
A change happened like this recently, with no notice. I couldn’t access my accounts for several weeks and finally preparing myself to do so and then navigating a layout that felt both alien and utterly unintuitive wiped me out for days before and days after. Fortunately I didn’t miss a vital payment. That was sheer luck of the timing.
Banking is hard enough for me at any time. Other services, like electricity providers, have become unusable altogether. Passwords are already difficult, requiring memory of something that is by its nature not meant to be memorable. That step alone makes using a service hard. When I can’t see what I’m typing that becomes exceptionally hard. When I am asked to change a password for the sake of security both harder still and infuriating because, like the whole of what I’m writing about here, change is distressing. And unexpected change hits me like a deep physical pain. And increasingly firms want even more steps that are almost impossible to juggle and require hours even days of preparing for, like multi factor authentication (which always requires a second device, more than doubling the difficulty, because otherwise the risk of pressing the wrong button is too great). And all the time “helpful” pop-ups and cookie reminders keep pinging and both frying my brain at the very moment I need to concentrate and increasing the chance of a wrong keystroke.
I wish banks understood that sometimes trying to “keep me safe” makes it impossible to access my money. Which takes a tiny risk of who knows what and transforms it into a very high risk I will end up credit blacklisted, even fined. How is that protecting me?
My problem with all this is with executive function. This is a concept that is almost impossible for me to explain. It’s even harder for others to understand (in part because it’s so hard to explain). Whatever I say just makes me sound lazy or difficult. The label ADHD and autistic people like me spent much of our childhoods having being given by teachers and parents and peers alike.
Poor executive function can mean seeing every single step in a process, even the ones that are totally invisible to most people, and having to learn how to do each one of them, and which order to do them in, without understanding why one follows another.
It can mean that things disappear completely from your awareness the moment you can’t see them.
It can mean sitting and looking at something you know should be easy and feeling as though you are staring at an insurmountable obstacle.
It means knowing, much of the time, most days, that people don’t get it, that they don’t see why you can’t “just do…” and it means you don’t know why the thing that should be so easy feels so impossible, and hating yourself for not knowing.
It means devoting much of your life to learning systems and workarounds for things that most people do without a second thought.
On the occasion in question, having finally logged in to my dashboard to move money to my credit cards, I was confronted with something completely unexpected. And unclear. Instead of having the balances and transactions of each account laid out as had always been the case previously, I found I now had to click through to access each. And then click back. Which in itself is an extra layer of complexity. But which I was being expected to do on top of the shock of finding the change in the first place.
If anyone who has a website or a platform is reading this, here’s what I really want you to understand. “Improved” doesn’t mean “better.” Improved is change. And change in and of itself is hard for many of us. Even if the new thing is so incredible it does things seamlessly, securely and makes me a cup of tea while it’s at it, it’s still new. I will still need time to get used to it. And I will still feel genuine distress when I realise what I am looking at is not what I am used to looking at.
It will take me time to adjust. I will have to learn the new thing. I will have to get familiar and maybe, eventually, comfortable with it.
So please don’t update the way things work without a very good reason. And I mean really good.
When you have to change things, give me lots of notice. And give me accurate notice (tell me the date it will change. Do not change before that date).
Ideally, show me the new look long before I have to use it. Let me look around, get used to it. Get familiar with it.
When you do introduce it, I’d love it if you could let me carry on using the old version for a while. Or even let me go back to the old version, with a simple click, if I get distressed and cannot use the new.
Of course, tell me when I will no longer be able to use the old version. And do not stop me using it before then.
And if I miss payments or actions in a window after you have introduced something new, offer people like me an amnesty period. Do not punish us for being disabled by your failure to make changes in an accessible way.
Support needs covered in this piece
If you make changes or updates to your platform, give me notice.
If you make changes or updates to your platform, show me in advance what the new layout will look like.
If you make changes or updates to your platform, allow me to continue using the old layout alongside the new.
Key elements of Accessible Design covered in this piece
Update your platform as few times as possible.
When considering updates to your platform, prioritise function over appearance.
Communicate any changes you will be making well in advance of making them, and always give as accurate a timetable as possible of when changes will occur, including when new layouts and functions will be introduced and when old ones will be withdrawn.
What We Need 