Trade secrets from the autistic mind: How autistic people think, and what we can learn from them.
What is cognitive access? And what does it look like from the point of view of someone like me who’s autistic?
We better start at the beginning.
Back in the 80’s, a group of people invented the World Wide Web. Of course, they didn’t know they’d invented the WWW, and it took some time to really understand what they’d invented but off we went. In all directions. At once. It didn’t take long for these early pioneers to realise that we needed some order to this free-for-all and thus, back in 1994 was born the World Wide Web Consortium (W3C), established by the “father of the Web”, Tim Berners-Lee.
The creation of the W3C led to the introduction of the first standards. They weren’t rules as such, and you weren’t going to get a slap across the knuckles for not following them. On the other hand, no-one wants their site not to work, so the idea behind these standards was that visitors to a site saw what the designer intended.
Around this time and in parallel, there was a growing interest in applying computer technologies to the needs of the disabled. So we saw the development of early screen readers and text to speech devices such as the Perfect Paul synthesised voice made famous by Stephen Hawking.
In the mid 90’s these two streams came together in the creation of the W3C’s Web Accessibility Initiative (WAI). As Tim Berners-Lee said at the time:
This eventually led to (drum roll), the Web Content Accessibility Guidelines (WCAG), version 1.0 of which was published by the W3C in May 1999. These were further developed with the release of version 2.0 in 2008.
The WCAG are a set of recommendations for making digital content and technologies accessible to people with disabilities. Over the 20-odd years since their first publication, they have become not just a reference but the basis for a number of regulatory standards, such as the European Union’s Web Accessibility Directive (2016). It’s also worth noting that though they’re called the Web Content guidelines, they’re not limited just to the Web and are applied across the whole field of Information and Communications Technology (ICT). So what I’m talking about here doesn’t just apply to the Web, it also includes (for example) mobile phone apps or displays on the back of aeroplane seats.
WCAG Guidelines are founded on four principals: perceivable, operable, understandable, and robust. Perceivable means making content and interfaces perceptible to our senses. Operable covers (e.g.) input methods such as keyboard-only navigation. Understandable is what it says but also covers making content and functionality predictable. Robust mainly refers to compatibility across different platforms and devices.
From the beginning, the focus of these measures was on people with physical and sensory disabilities, and in particular, the visually impaired. Back in 2008 Joe Clarke noted: “Blind and visually-impaired people top the list for the simple reason that the Web is a visual medium.” Accordingly, much of the early work on accessibility focused on screen reading technologies or technology to convert text documents to braille.
But Web access difficulties are not just limited to those with visual or even physical impairments. There also those who face barriers in accessing ICT because they think, reason or process information in non-typical ways. Thus far in our story, this group had largely been ignored:
“the needs of the largest disability group in our community, those with cognitive disabilities and learning difficulties, appear to have slipped through the cracks to a large extent when it comes to website accessibility.” Roger Hudson in 2004
Which gets us to the idea of cognitive accessibility (CA), even though there were references to it all the way back in WCAG 1.0. The need to address this led to the formation of a W3C advisory body, the Cognitive and Learning Disabilities Accessibility Task Force (COGA). Their aim is: “to produce techniques, understanding, and guidance documents that address the cognitive space”. Which eventually resulted in the all-singing, all-dancing WCAG 2.1 in 2018 with its focus on CA (amongst other things - the world had moved on since WCAG 2.0 in 2008).
So briefly, that’s how we got here. But where are we? To answer that, I want to look at firstly, what cognitive accessibility is and secondly, who it applies to. Because on both counts there are some fundamental misunderstandings which are leading to lots of confused designers and inaccessible web sites.
There’s an increasing amount of info on CA out there, and most explanations are somewhat similar. For example, The Coleman Institute defines CA in these terms:
“Environments, technology, and materials that are “cognitively accessible” are those which incorporate design features to ensure that people with limitations in cognitive abilities - including language ability, auditory reception, reasoning and idea production, memory and learning, visual perception, cognitive speed, and knowledge and achievement - are able to access those environments and use the technology and materials.”
Alongside that, there’s also a broad agreement on what difficulties cognitive accessibility is attempting to address. Lists of the main issues often look something like this:
• being overwhelmed by too much information
• too much or too complex text
• problems with data entry and form-filling
• issues with log in and authentication
• confusing or ambiguous content or layout
• difficulties with multi-step processes.
These are the kinds of issues that WCAG guidelines are attempting to respond to. For example, in the COGA recommendations under 2.3 Writing Style, you’ll find:
• use short clear sentences
• use simple, clear words
• do not miss out steps
• do not assume users can guess what you mean
• leave plenty of space between lines
• use unambiguous language
All of which is fairly straightforward and would help someone like me. So far so good, more or less.
The full W3C working document on CA covers objectives, examples, guidelines, technologies, testing and research. But while generally excellent, it’s some 50,000 words long, which in itself presents serious accessibility issues. There’s a more manageable break-down of good CA practice at Mozilla, and I’ve included other links below.
What runs through a lot of these recommendations is the need to avoid having too much information, and information which is unclear or confusing. This covers content, layout and functionality. If I had to sum all this up as a single guiding principal it would be this: reduce cognitive load.
That is, reduce the amount of work your brain has to do. Reduce the number of decisions users have to make or questions they have to ask: “is this clickable?”, “what do I do now?”, “what does this icon mean”, “how do I return to where I was?”, or in the immortal words of David Byrne “how did I get here?”
In considering cognitive load, we also have to take into account that it’s cumulative. Someone may be able to complete individual tasks but run into difficulty once they’re put together. Imagine all the steps involved in preparing and submitting a CV as part of a job application: from composing and preparing the text, perhaps with a specific layout, to managing your files, to exporting your document, even having to convert it to a different format, to logging onto an intranet platform where you might have to navigate a non-intuitive log-in, to finding your saved file (you did remember to save your file?), to executing a final transfer … cumulative cognitive load.
How to reduce cognitive load is perhaps best summed up by the title of Steve Krug’s book on Web design: “Don’t Make Me Think”. It’s about making actions such as clicking on buttons and navigating web pages mindless. Users should be able to “get it” without having to think too much. Or at all. ICT should be intuitive and easy to use and understand.
But how intuitive? And where’s the line between easy and difficult, especially as it’s all so subjective? This is what the WCAG guidelines attempt to answer, where to place that line. A could create difficulties, B probably won’t. C is intuitive, D isn’t. E will be comprehensible, F isn’t going to be, and so on.
As with what we saw above, there’s a kind of orthodoxy at to who we’re talking about here, and most of what you’ll find is along similar lines. The W3C refers to “people with cognitive and learning disabilities” which for them includes “intellectual disabilities, developmental disabilities; attention deficit hyperactivity disorder (ADHD), autism, dementia, dyslexia, and more”. (As an aside, you might like to check up on what some of these terms mean because they can have different meanings in different cultures. See below.)
Other sources might refer to cognitive difficulties, neurological disorders, or even the catch-all cognitive limitations. Wherever you look though, the categories are generally much the same and for most discussions around cognitive accessibility, these are the groups we’re focusing on.
However, this view is problematic, and in order to understand why we once again need to dive back into a little history.
The notion of accessibility for people with disabilities isn’t limited to digital or ICT accessibility. My local two-platform train station has a ramp and elevators, large displays, signs in Braille, tactile floor markings and a button to announce train information. It wasn’t always so, every one of those accessibility components has been added over the last 15 years.
In the UK, the movement towards improved access started with the Union of the Physically Impaired Against Segregation (UPIAS) in 1972. Their focus was “ways of changing our conditions of life, and thus overcoming the disabilities which are imposed on top of our physical impairments by the way this society is organised to exclude us” (Parallel movements arose in other countries.)
Eventually, this led to what we now recognise as the disability rights movement and with it the development of the social model of disability. This situates disablement in society and the environment rather than the individual. The social model:
“sees ‘disability’ as the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that these must change to enable people living with impairments to participate in society on an equal basis with others.”
Declarations such as the UN Convention on the Rights of Persons with Disabilities (CRPD) are built on the social model framework. As are the WCAG guidelines.
But there’s a key word in all that. If we go back to where this started, the “P” in UPIAS stands for “physically”.
From the very beginning, notions of accessibility have been modelled on physical or sensory disabilities. This has had major consequences for how we understand cognitive accessibility, leading to a number of misconceptions. These include:
• There are so many different cognitive disabilities, how can we support them all?
• People with cognitive disabilities can only be supported through CA measures.
• Cognitive Accessibility only applies to those with cognitive disabilities.
• The only specific group that CA applies to is those with cognitive disabilities.
• Cognitive impairments are fixed and constant.
In the physical disabilities model, each physical impairment has its own specific accessibility requirements: sign language for the deaf, braille for the blind etc. If we take this model and transpose it to cognitive disabilities, we end up with this first misconception, which goes something like:
It’s an argument that has often been used to put cognitive access measures in the “too hard” basket, delaying both their development and implementation.
But as we saw above, rather than being about particular groups or impairments, cognitive access focuses on cognitive capacity and functionality: thinking, remembering, reasoning etc. It’s about the how rather than the who. So the place to start here is with cognitive function, as opposed to trying to find unique solutions for each disability or condition.
“Clinical diagnoses may be useful from a medical perspective, but for the purposes of web accessibility, classifying cognitive disabilities by functional disability is more useful. Functional disabilities ignore the medical or behavioural causes of the disability and instead focus on the resulting abilities and challenges.”
So if you have a difficulty with short-term memory, it doesn’t matter which impairment is causing it or why, anything that helps short term memory will be beneficial.
We can see how this plays out in the COGA example I gave above with its recommendation to “use short clear sentences”. COGA explain that this helps “people with intellectual disabilities, receptive Aphasia and acquired dyslexia, those with general cognitive learning disabilities, those who have Dementia and/or acquire cognitive disabilities as they age.” They should also have included those of us who are autistic, as we’re constantly looking to cut down on the amount of information we have to deal with. (One of my criticisms of the COGA and WCAG recommendations is that I don’t know that they’re receiving enough input from the populations concerned. You can even see that in what I’ve just quoted: there’s no such thing as a “general cognitive learning disability”.)
In other words, in contrast to the single-disability/matching-solution model, cognitive access recommendations often work across multiple cognitive disabilities. I’m not suggesting that one-size-fits-all, far from it, but CA doesn’t have to be viewed through the lens of “there are too many different disabilities to cover”.
This misunderstanding is another consequence of the “each disability has a matching access solution” model where, for example, we don’t propose sign language to someone who’s blind. But it doesn’t work like that with cognitive disabilities because once again, we’re considering access in terms of functionality rather than impairment. Even assistive technologies developed for those with physical or sensory disabilities can facilitate cognitive access. We don’t need to limit ourselves just to “cognitive” solutions.
For example, text-to-speech is designed for the visually impaired. But both autists and those with dyslexia use it - though for different reasons: dyslexics because it can be easier to manage spoken rather than written language, autists because it collapses multiple sources of information into a single stream and you’re parsing information one element at a time. Similar story with the use of focus technologies such as the magnifying glass (hover zoom). Designed primarily to help with visual impairments, it can benefit dyslexics by isolating words or phrases, and those with ADHD or autism by reducing the number of elements competing for attention. In my own case, I’ll often turn the sound off video content and use captions because like a lot of autists I’m sensitive to noise.
In practice, people with cognitive disabilities are often good at hacking some of these physical and sensory access technologies to meet their own needs - though that’s not an excuse to not implement specific CA measures.
I probably should have put this first, because for me it’s the single biggest misconception about who cognitive accessibility is for, or even what it is. Once again, it arises because we’re basing our understanding of CA on physical and sensory models of disability.
We’ve seen that cognitive accessibility is as much as anything about managing cognitive capacity and in particular, reducing cognitive load. Given that’s the case, in looking at who it applies to we don’t need to limit ourselves to those with cognitive disabilities, or to any specific group.
Let’s go back to the submit-your-CV example above, with its longish series of steps. Many of you are probably thinking “not a problem, I could do that in my sleep”. But could you? Try doing it while jet-lagged after a long-haul flight from Sydney to London (via Frankfurt) where you might have over-sampled the free drinks and you’re sitting in a noisy baggage hall trying to log on to the airport wi-fi.
In those conditions you’d probably struggle because you will have reached the limits of a reduced cognitive capacity. But this doesn’t just happen to people who are jet-lagged or sleep-deprived such as long-haul travellers, new parents or shift workers. If you’re suffering from an illness, including mental illness, if you’re taking medication or recreational drugs or have had too much to drink, if you’re stressed, anxious, preoccupied or distracted, if you’re in pain, if you’re grieving or in a state of shock or depression … in short, if you’re in any situation where your cognitive function may be compromised, you’ll benefit from the reduction in cognitive demand that cognitive access measures bring.
Designer Chris Atherton wrote about her experience of a bad dose of the flu and her realisation that: “this is what people mean when they talk about cognitive difficulties. The inability to hold the thread of a detailed conversation. The lack of extra bandwidth for things like tact and precision. The time fog. The sensation of being overwhelmed by input that isn’t yours to control.”
Cognitive accessibility isn’t just for those with specific cognitive disabilities. We may not all need it all the time, but everyone will need it some of the time.
This is a spin-off of the above, that CA isn’t only for people with cognitive disabilities. But rather than being general, in this case it concerns a specific group. It differs to what we just saw in that the access difficulties that this population faces aren’t situational, they’re persistent, often permanent, even though these are not people with cognitive disabilities.
A recent UK government report estimated that in 2018, 8% of UK adults (4.3 million) had zero basic digital skills, while a further 12% (6.4 million) had only limited abilities. This 20% of the population are people who fall on the wrong side of what’s being called the digital divide. They’re people who might be able to participate in a limited way on social media, but wouldn’t be able to accomplish the compose/save/upload your CV process outlined above. This is a world-wide phenomenon, independent of age or education, though one that is rarely mentioned in discussions about cognitive accessibility.
The access support requirements for this population are much the same as for those with cognitive disabilities: reduce cognitive demands through clarity, ease of use, and by making the content and interface self-evident, understandable, etc. Once again, cognitive accessibility isn’t only for the cognitively disabled.
I left this till last because it’s the misconception that’s probably the most difficult to grasp - and explain. Our starting point is again that notions of accessibility are largely based on sensory or physical disabilities where:
“in general, Web Accessibility is relatively straightforward: it either works with a screen reader or it doesn't; a video or audiocast has captions or it doesn't; a person with mobility limitations can move through a site or can’t.” Heather Mariger
In other words, it’s fairly black and white, it works for you or it doesn’t. And if it doesn’t work for you on a Monday, it’s not going to work for you on a Tuesday because physical disabilities are generally long-term if not congenital. As Joe Clark writes in his book on building accessible Web sites:
We tend to understand cognitive impairments in the same way. If you’re “insert-cognitive-disability-here”, then you will always have these kinds of characteristics and need these kinds of accommodations.
Now this is true for many people with cognitive and learning disabilities. But, it’s not true for all. Not only does it not take into account individual variations within each condition, it ignores the variability within the same person. As an autist, I can have one set of access requirements one day, and a different set the next. Designer Shell Little has ADHD and notes: “The barriers I find difficult at 11 am are oftentimes the ones that leave me in tears at 10 pm.” I know of autistic people who lose their speech as the day progresses, or can hold down a job through the week but as a result are non-verbal on the weekend.
To help understand what’s happening here, Christine Miserandino’s Spoon Theory is a useful metaphor. It explains that as a disabled person you have both fewer resources (spoons) and greater costs. In the physical realm, this results in situations where, because of the energy demands, you can take a shower or cook dinner - but not both. With cognitive disabilities, this plays out in the cognitive space. Ann Memmott, who’s autistic, describes using up your spoons as “running out of ability to keep our brain operating”. I can make phone calls in the morning, but because of the demands of those kinds of interactions, may not have enough spoons left to navigate an online bank transfer in the afternoon. Is the online banking system accessible or inaccessible? Well, it’s … both. We’re a world away here from “either it has captions or it doesn’t”.
There’s another important consequence of all this, because navigating digital content is in itself something that eats up spoons, especially with more complex tasks or a site that has poor accessibility. (If you want to see this in action, visit my The Cognitive Experience page, where you’ll see me getting through spoons at a rapid rate.)
Take my phone call/banking example. I could have reversed the order and done my complicated bank transfer first - but then I would have struggled with the phone calls. I also wouldn’t have been able to do a second bank transfer, even though I’d managed it earlier. An accessible process has become inaccessible through the demands of the process itself.
You might say that this is just another form of cumulative cognitive load. Well, yes. But it's occurring with people for whom "difficulty managing cognitive load" is a defining characteristic of their condition. It exacerbates impairment. This is very different to the “fixed disability” model: a visually impaired person does not become more visually impaired through poor page layout.
In short then: a website may pass an accessibility audit and get a thumbs up from cognitively disabled testers … when presented in isolation. Add a convoluted authentication process beforehand, or test in the evening as opposed to the morning, and it can be a very different story. Cognitive accessibility is context and situation-dependent, not just across different populations, including the general population, but within the same individual.
How to design for cognitive accessibility in the digital environment?
My short answer is: don’t. Don’t see cognitive accessibility as a separate category or yet another sub-group you have to please or a checklist you have to tick off. In fact, don’t think about accessibility at all. No-one who designs a chair thinks especially about accessibility.
Just design for your users and focus on usability. The basic principals of Universal Design are also the basic principals of cognitive accessibility, so following those will get you a long way towards what we need. It doesn’t have to be rocket science either. Look at the terms that COGA use in their recommendations: clear, obvious, understandable, familiar, easy-to-find, consistent.
After that, you have to test test test, and involve users with cognitive disabilities from the outset. Because no matter how hard you try, you can never put yourself in our shoes, think the way we think, understand or reason the way we do. You may have done all you can to “use unambiguous language”, but only a user with a cognitive difference will be able to confirm if you’ve succeeded or not.
To sum up: cognitive accessibility isn’t yet another add-on or bonus feature. It’s at the heart of Universal Design, and you can’t have one without the other. Designing for cognitive accessibility is designing for everyone. Just make it work. For all of us.
A bit of a minefield for the unwary, but regarding a few terms you’ll find above:
Impairment: “an injury, illness, or congenital condition that causes or is likely to cause a loss or difference of physiological or psychological function.” Be aware that not all people see their cognitive condition or disorder as an impairment.
Disability: I’ve included a definition in the text, but from the same source as impairment: “the loss or limitation of opportunities to take part in society on an equal level with others due to social and environmental barriers.”
Learning Disability: This is a thorny one, as there are different meanings depending on where you are. In the UK it refers to “a reduced intellectual ability and difficulty with everyday activities” (Mencap). In the US, this is known as an Intellectual Disability. Learning Disability covers what in the UK are known as Learning Difficulties: dyslexia, ADHD for example. There may also be a “general” thrown in there somewhere and in some instances you’ll see “disorder” in place of “difficulty”. As I said, a bit of a minefield. e.g. as I mentioned above, the term “general cognitive learning disability” as used by COGA doesn’t actually exist.
Other Disorders: There are a number of conditions that are rarely mentioned in terms of cognitive access but can have associated cognitive disfunction. These include Parkinson’s Disease, ME/Chronic Fatigue Syndrome and Motor Neurone Disease.
For concrete suggestions, quotes in the text link to articles and sites, but I’ve added some more below. And as I mentioned above, if you want to see what cognitive (in)access feels like, pop over to my The Cognitive Access Experience and join me as I hack my way through a troublesome web page.
Cognitive Accessibility 101 Jamie Knight
Because no article on CA would be complete without a reference to Jamie and Lion.
Great article on designing for Cognitive Disabilities by Shell Little, who’s one of us and who I quoted above.
Ireland’s Centre for Excellence in Universal Design, is both comprehensive and accessible, with separate sections for Developers, Designers and Content Providers.
Design Principals for Reducing Cognitive Load Jon Yablonski
Reducing Cognitive Overload For A Better User Experience Danny Halarewich
Digital Accessibility and Cognitive Impairment System Concepts