anxiety banking – What We Need

New and Improved: how changing your platform or product creates problems for autistic consumers

“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.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

We welcome comments, which will be moderated in accordance with our code of conduct. We especially invite insights from people with similar needs, or different needs relating to similar situations. And from organisations who are able to meet these needs (sharing how they do so) or who would like to consider how they might do so.

If you would be interested in contributing to this blog, please email info@whatweneed.support. We pay £150 for a post (or can make alternative arrangements such as donations on your behalf if you are not able to receive payment because of the effect on your benefits).

If you are interested in the work we do at WhatWeNeed.Support, please visit our home page. Or contribute to our request for support needs to add to our cross-sector lists, either through the comments on individual list pages, or by emailing info@whatweneed.support.

We also invite you to sign up to our mailing list by clicking this link so that you can find out about the support needs we are discussing, about events we are holding, about ways of getting involved in what we are doing, and about important developments in helping those with support needs.

Finally, if you would like to get involved in WhatWeNeed.Support’s events, as someone who has support needs, or someone who works for an organization that puts support needs into place, we would love to hear from you through our email info@whatweneed.support

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.

The Hidden Difficulty of Forms

“Forms are the bane of my life. They shouldn’t have to be, but they are.”

Forms create layers of accessibility problems, from causing or increasing anxiety, to overloading cognitive capacity, to using more energy than anticipated when the questions keep appearing on every new screen, to putting you into a cycle of stress when you are unable to complete them but must.
Rebecca Markwick, information security professional

About Our Blog Series

Each entry in this series has been written by someone with lived experience of a particular support need.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our third post, from Rebecca Markwick

The Hidden Difficulty of Forms

There are a lot of forms that we have to fill out in our life. And unfortunately for some, there are even more forms that have to be filled out. Whether that’s due to job applications, medical journeys, travel, business, taxes, or just joining clubs and local society groups, forms are everywhere.

There are hidden difficulties to forms however, that can make them almost impossible to complete for some people. I’ll go over a few of the main accessibility issues that give me the most trouble and cause the most stress and anxiety. But first, it’s important to note that there are two types of forms: physical forms that are printed on paper, and digital forms that you complete on the computer. The latter generally cause most difficulty, but the paper ones tend to be for more important things so the difficulty is assigned differently in certain aspects.

First up, we have the worst aspect of forms: poorly written questions. Those vague questions that you know are looking for a super accurate response that don’t come with a handy example or more information section. This causes anxiety in not knowing how to answer, what to answer, how much or how little detail should be included, how important this question is, or what the point of the question even is. They are usually found in the middle of a form so you are already stressed and tired from filling out the previous questions. These forms are the ones where it’s clear no-one has checked the question set for user experience or accessibility. This make me annoyed as well as anxious and tired; the cognitive load required to ‘get the answer right’ can be huge.

Next we have online forms that don’t say how many pages or questions there are up front. They don’t say how long they anticipate it will take you to fill out either, or whether you can save and come back later or not. The worst examples of these are the forms that not only don’t show progress status, but suddenly ask you to supply additional documentation that they didn’t warn you about at the start and also don’t let you save your progress. This means that if the additional documentation is a surprise and you don’t have it to hand, you have wasted all the effort taken in filling out the form so far. This is a horrifying realisation as it becomes clear you will have to redo the questions you’ve spent time working through already and find the documentation. Plus, there may be more documentation you need on the next page but you just don’t know. This, to my mind, is very poor form design that has once again skipped user experience and accessibility checks.

Weirdly, there is one form that is practically perfect in not doing this. And that is a high stakes, high stress form that you need to complete to renew a shotgun or firearms license. The first page tells you exactly what documentation you need to attach and in what format, it tells you what order everything is laid out, it gives you exact file size requirements. It lays out every single piece of information you will be asked to fill out and supply and then gives a rough estimate of how long it takes to fill out. Bonus points for also including a guidance page if you need extra help. If every online form was like this it would be amazing. The only downside is that you can’t save it as it must be completed in one go, but it tells you that up front too.

On the paper form side, the additional burden of importance comes in as these are generally only used for things like driving licenses, medical things, passports, and other serious information gathering purposes. When in the situation of filling these out, the questions are often very specific and can be confusing which leads to additional cognitive load. If you fill these out incorrectly it actively inhibits your ability to get access to what you need and often means you have to pay again to submit a fresh form. There are many many questions across multiple pages. The space to write can be small and cramped. Many of those questions may not even be relevant to you, but it’s hard to know in some cases. The guidance that comes with them is also complex and not written very accessibly.

But overall, my biggest concern with filling out forms is that the amount of energy required, the unnecessary complexity or poorly written questions, and the anxiety induced, which can mean those of us with accessibility needs that are struck by ‘filling out forms’ may not ever fill out the form.

Not filling out the form can cause all sorts of issues, from the smaller not joining that club you wanted, all the way to not being able to move your pension money or get a new passport. Some forms being filled out badly can lead to fines, such as the self employed tax return online form system which gets more complex and has more questions added every year.

Forms create layers of accessibility problems, from causing or increasing anxiety, to overloading cognitive capacity, to using more energy than anticipated when the questions keep appearing on every new screen, to putting you into a cycle of stress when you are unable to complete them but must.

There are things form builders can do to make them more accessible. Get a user experience expert to review, get an accessibility review, write a list of all the documents needed up front before even having to start the form. Check that your questions are clear and that you show a progress monitor on forms that require you to click ‘next’. Add useful guidance for complex questions.

Forms are the bane of my life. They shouldn’t have to be, but they are.

Support needs covered in this piece

If you need me to provide documentation during a process, please let me know in advance.

I need more time to complete and return paper based forms.

Key elements of Accessible Design covered in this piece

When creating an online journey, tell people how for through the journey they are at a given moment.

Tell people at the start how long they should expect the journey to take.

Ask questions to which there is a clear answer.

Ensure online forms have a “save and return later” function.

Give clear guidance in an accessible format in the “more information” section.

When creating paper-based forms, leave people sufficient room to write their answers.

About Rebecca

Rebecca works in information security in the Biotech area and has a passion for making security as low friction and accessible.as possible. She is a keen advocate for disability and diversity in technology and information security, and a passionate writer, speaker, and podcaster.

Rebecca is a rider, reader, knitter, crocheter, and collector of cats named after characters in Tolkien.

You can find out more about Rebecca and her work at InfoBex.

Useful links

FIDO Alliance (building secure, password-free authentication)

“A Single Point of Contact”

With the benefit of five years’ hindsight, I can identify the support needs that speak to these issues, which boil down to two things: paper trails and a designated point of contact.
Clara Oliver, 37, Administrator (name changed)

About Our Blog Series

Welcome to the first 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.

Get Involved

We invite any service provider, from retailers to delivery firms; from financial services to utilities and everything in between, to consider how their service meets the needs presented.

With that, here is our first post, from Clara Oliver (not her real name), a 37 year-old administrator.

A Single Point Of Contact

There is a large padded envelope in a box in the storage space under my bed that has been there, unopened, for five years. I’m not a hoarder by nature, but I am unable to throw this envelope away; I also find myself unable to open it. It remains there, sealed like a fly in amber, perpetually held in a moment of stasis.

The envelope contains physical and electronic copies of documentation and phone calls I was given after I submitted a subject access request (SAR) to my bank. It is the only tangible evidence of one of the most distressing periods of my adult life; vindication and solidity after more than six months of being gaslit and humiliated. I made the SAR in the hope that I would one day be able to review it all in service of processing the trauma, but I don’t think that day will come soon. I have tried instead to funnel my energies into contributions to the broader good, like this blog post.

I have had periods of depression and anxiety throughout my adult life. My mental health fluctuates significantly over variable durations of time – I have ‘good spells’ which can last for years, or ‘bad spells’ of a few weeks or months. Perhaps unsurprisingly, the intersections between my mental health and my financial position are significant. I think this is something that most people understand intuitively – nobody thrives when the bailiffs are knocking at the door or the bank is sending threatening letters – but very few people are willing to talk about it.*

In 2019, with the support and encouragement of a colleague, I approached my bank about finding a resolution to an untenable financial position. Put simply, I had acquired a substantial overdraft overnight in order to avoid a CCJ, and I couldn’t dig my way out of the hole. My mental health was poor; I was sleepless, anxious, and hopeless. What I wanted was (to my mind) relatively straightforward: a payment plan, the reduction or removal of interest charges for a fixed period, or some other combination of help and support to enable me to get back on my feet financially. My colleague had advised me to request to speak with the ‘vulnerable customers’ team at the bank, a purported shortcut to a corner of compassion and humanity within a vast and soulless multibillion dollar corporation.

What I got instead was a six-month period of being trapped in a seemingly endless cycle of poor support from my bank, which exacerbated my depression and anxiety, which increased my support needs, which the bank could not meet, which exacerbated my depression and anxiety, and so on. I want to be clear about the distinction between the resolution I was seeking (a plan to resolve my financial situation) and the support needs I had (the ways in which the bank interacted with me during the time it took to develop the plan in question). In the end, the resolution was satisfactory; the way that the bank managed the situation and supported me as a customer was not.

The downward spiral of my mental health during the period I was interacting with my bank could be attributed almost exclusively to having to explain my situation anew to a different person at the call centre every time I called before I could proceed any further, and an unwillingness of anyone I spoke to at the bank to put anything in writing. With the benefit of five years’ hindsight, I can identify the support needs that speak to these issues, which boil down to two things: paper trails and a designated point of contact.

Who does it serve to have a different person dealing with the same customer each time? Who benefits? When the customer is expending valuable mental and emotional energy on the initial hurdle of explaining their situation on the phone and waiting to be directed to the right person, by the time it comes to the substance of the enquiry, they are completely exhausted and ill-tempered. A designated point of contact – even if that means more limited availability – could have prevented my descent into despair. Going through a call centre every time is a demoralizing and dehumanizing experience. If I could have been given the direct line for one person who was managing my case, it would have removed the vast majority of the distress and frustration I experienced. I would have accepted a significant reduction in the window of time in which I could call to discuss my case, if I knew that the person on the other end was well-informed and would be the same person each time.

My anxiety at the time also caused me to be very distrustful of anything anyone at the bank was telling me. I was eventually offered (verbally) a plan to resolve my situation that was acceptable to both me and the bank. I didn’t want to agree to anything, however, until I’d seen the offer in writing, but the bank employees were extremely reluctant to send anything. I had to call three days in a row in order to persuade them to agree to send me the details in writing. I found this to be incredibly poor practice regardless, but for someone who had already declared their anxiety, I found it incomprehensible. From my end there was no official record of all these phone calls, and I couldn’t believe that there wasn’t some ‘catch’ to this offer that was, as it turned out, going to help me out of a sticky situation.

When it came to actually accepting the offer, I had to take the signed paperwork to a local branch and ask them to scan and email it to the relevant team. I did this, but the paperwork was lost by the bank. I only found this out because I was calling every day to confirm whether or not it had been received. I was told – repeatedly – that if I had taken it to the bank, it would have been dealt with appropriately. That turned out not to be the case and I felt gaslit. The ‘no news is good news’ approach is an absolutely terrible one to take for a customer who has anxiety.

A brief summary via email of actions taken or things discussed after each call could have been the difference between a downward spiral and my return to mental health equilibrium. Perhaps if I didn’t now know that the resolution to this issue was within reach of the bank all along – as customer notes, firstly on their internal computer system and now in hard copies as a result of my subject access request – I would be able to contemplate opening that envelope.

*Martin Lewis being the notable exception, of course: https://www.moneyandmentalhealth.org/

Summary of support needs covered in this post

I need a single point of contact when discussing my account
please provide me a summary of what was said following our discussion
please provide me a summary of agreed action points and timeline following our discussion