Designing for autistic people

by Daniel Gill and Paul Curzon, Queen Mary University of London

What should you be thinking about when designing for a specific group with specific needs, such as autistic people? Queen Mary students were set this task and on the whole did well. The lessons though are useful when designing any technology, whether apps or gadgets.

A futuristic but complicated interface
A futuristic but complicated interface with lots of features: feature bloat?
Image by Tung Lam from Pixabay

The Interactive Systems Design module at QMUL includes a term-long realistic team interaction design project with the teaching team acting as clients. The topic changes each year but is always open-ended and aimed at helping some specific group of people. The idea is to give experience designing for a clear user group not just for anyone. A key requirement is always that the design, above all, must be very easy to use, without help. It should be intuitively obvious how to use it. At the end of the module, each team pitches their design in a short presentation as well as a client report.

This year the aim was to create something to support autistic people. What their design does, and how, was left to the teams to decide from their early research and prototyping. They had to identify a need themselves. As a consequence, the teams came up with a wide range of applications and tools to support autistic people in very different ways.

How do you come up with an idea for a design? It should be based on research. The teams had to follow a specific (if simplified) process. The first step was to find out as much as they could about the user group and other stakeholders being designed for: here autistic people and, if appropriate, their carers. The key thing is to identify their unmet goals and needs. There are lots of ways to do this: from book research (charities, for example, often provide good background information) and informally talking to people from the stakeholder group, to more rigorous methods of formal interviews, focus groups and even ethnography (where you embed yourself in a community).

Many of the QMUL teams came up with designs that clearly supported autistic people, but some projects were only quite loosely linked with autism. While the needs of autistic people were considered in the concept and design, they did not fully focus on supporting autistic people. More feedback directly from autistic people, both at the start and throughout the process, would have likely made the applications much more suitable. (That of course is quite hard in this kind of student role-playing scenario, though some groups were able to do so.) That though is key idea the module is aiming to teach – how important it is to involve users and their concerns closely throughout the design process, both in coming up with designs and evaluating them. Old fashioned waterfall models from software engineering, where designs are only tested with users at the end, are just not good enough.

From the research, the teams were then required to create design personas. These are detailed, realistic but fictional people with names, families, and lives. The more realistic the character the better (computer scientists need to be good at fiction too!) Personas are intended to represent the people being designed for in a concrete and tangible way throughout the design process. They help to ensure the designers do design for real people not some abstract tangible person that shape shifts to the needs of their ideas. Doing the latter can lead to concepts being pushed forward just because the designer is excited by their ideas rather than because they are actually useful. Throughout the design the team refer back to them – does this idea work for Mo and the things he is trying to do? 

An important part of good persona design lies around stereotypes. The QMUL groups avoided stereotypes of autistic people. One group went further, though: they included the positive traits that their autistic persona had, not just negative ones. They didn’t see their users in a simplistic way. Thinking about positive attributes is really, really important if designing for neurodivergent people, but also for those with physical disabilities too, to help make them a realistic person. That group’s persona was therefore outstanding. Alan Cooper, who came up with the idea of design personas, argued that stereotypes (such as a nurse persona being female) were good in that they could give people a quick and solid idea of the person. However, this is a very debatable view. It seems to go against the whole idea of personas. Most likely you miss the richness of real people and end up designing for a fictional person that doesn’t represent that group of people at all. The aim of personas is to help the designers see the world from the perspective of their users, so here of autistic people. A stereotype can only diminish that.

Multicolour jigsaw ribbon
Image by Oberholster Venita from Pixabay

Another core lesson of the module is the importance of avoiding feature bloat. Lots of software and gadgets are far harder to use than need be because they are packed with features: features that are hardly ever, possibly never, used. What could have been simple to use apps, focusing on some key tasks, instead are turned into ‘do everything’ apps. A really good video call app instead becomes a file store, a messaging place, chat rooms, a phone booth, a calendar, a movie player, and more. Suddenly it’s much harder to make video calls. Because there are so many features and so many modes all needing their own controls the important things the design was supposed to help you do become hard to do (think of a TV remote control – the more features the more buttons until important ones are lost). That undermines the aim that good design should make key tasks intuitively easy. The difficulty when designing such systems is balancing the desire to put as many helpful features as possible into a single application, and the complexity that this adds. That can be bad for neurotypical people, who may find it hard to use. For neurodivergent people it can be much worse – they can find themselves overwhelmed. When presented with such a system, if they can use it at all, they might have to develop their own strategies to overcome the information overload caused. For example, they might need to learn the interface bit-by-bit. For something being designed specifically for neurodiverse people, that should never happen. Some of the applications of the QMUL teams were too complicated like this. This seems to be one of the hardest things for designers to learn, as adding ideas, adding features seems to be a good thing, it is certainly vitally important not to make this mistake if designing for autistic people. 

Perhaps one of the most important points that arose from the designs was that many of the applications presented were designed to help autistic people change to fit into the world. While this would certainly be beneficial, it is important to realise that such systems are only necessary because the world is generally not welcoming for autistic people. It is much better if technology is designed to change the world instead. 

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Front cover of CS4FN issue 29 - Diversity in Computing

EPSRC supports this blog through research grant EP/W033615/1,

Gadgets based on works of fiction

Why might a computer scientist need to write fiction? To make sure she creates an app that people actually need.

Writing fiction doesn’t sound like the sort of skill a computer scientist might need. However, it’s part of my job at the moment. Working with expert rheumatologists Amy MacBrayne and Fran Humby, I am helping a design team understand what life with rheumatoid arthritis is like, so they can design software that is actually needed and so will be used and useful.

A big problem with developing software is that programmers tend to design things for themselves. However, programmers are not like the users of their software. They have different backgrounds and needs and they have been trained to think differently. Worse, they know the system they are developing inside out, unlike its users. An important first step in a project is to do background research to understand your users. If designing an app for people with rheumatoid arthritis, you need to know a lot about the lives of such people. To design a successful product, you particularly need to understand their unfulfilled goals. What do they want to be able to do that is currently hard or impossible?

What do you do with the research? Alan Cooper’s idea of ‘Personas’ are a powerful next step – and this is where writing fiction comes in. Based on research, you write descriptions of lots of fictional characters (personas), each representing groups of people with similar goals. They have names, photos and realistic lives. You also write scenarios about their lives that help understand their goals. Next, you merge and narrow these personas down, dropping some, creating new ones, altering others. Your aim is to eventually end up with just one, called a primary persona. The idea is that if you design for the primary persona, you will create something that meets the goals of the groups represented by the other personas it replaced.

The primary persona (let’s call her Samira) is then used throughout the design process as the person being designed for. If wondering whether some new feature or way of doing things is a good idea, the designers would ask themselves, “Would Samira actually want this? Would she be able to use it?” If they can think of her as a real person, it is much easier to make decisions than if thinking of some non-existent abstract “user” who becomes whatever each team member wants them to be. It helps stop ‘feature bloat’ where designers add in every great idea for a new feature they have but end up with a product so complex no one can, or wants to, use it.

As part of the Queen Mary PAMBAYESIAN project we have been talking to rheumatoid arthritis patients and their doctors to understand their needs and goals. I’ve then created a cast of detailed personas to represent the results. These can act as an initial set of personas to help future designers designing apps to support those with the disease.

If you thought creative writing wasn’t important to a computer scientist, think again. A good persona needs to be as powerfully written and as believable as a character in a good novel. So, you should practice writing fiction as well as writing programs.

Read some of our personas about living with rheumatoid arthritis here.

– Paul Curzon, Queen Mary University of London, Spring 2021

See the related Teaching London Computing Activity

Find out more about goal-directed design and personas from its creator in Alan Cooper’s wonderful book “The inmates are running the Asylum” (the inmates are computer scientists!)

Download Issue 27 of the cs4fn magazine on Smart Health here.

This post and issue 27 of the cs4fn magazine have been funded by EPSRC as part of the PAMBAYESIAN project.