Design Your life: giving agency to the neurodiverse
SITUATION
Empowering autistic people in their daily lives
Worldwide, an estimated one out of every 100 people have been diagnosed with autism. Despite this prevalence, the design of modern technology rarely takes into account the unique challenges of the autistic experience. This can include communication differences, social interaction issues, and increased or decreased sensitivity to stimuli — including auditory or visual. The Design Your Life (DYL) methodology is seeking to change this.
Developed by researchers of the HAN University of Applied Sciences and the University of Twente, the goal of DYL is to develop a design framework autistic people can use to create their own innovative products and technologies.
Based on Stanford’s d.school design-thinking process, DYL uses a participatory approach that relies fully on the experiences and knowledge of autistic individuals. This gives them complete freedom to develop personalized, supportive technological solutions that help them lead more fulfilling and independent lives.
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We came up with Design Your Life to see if we can put design tools into the hands of the people who will actually use [the products]. So instead of the designers or engineers designing or developing these technologies, [autistic people] could, in a simple way, design their own tools or technologies to help them in their lives.
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CHALLENGE
Meeting the unique needs of autistic people
Engaging non-designers in a design process can be difficult, but this challenge is even more pronounced when accounting for the particular needs of autistic people. Specific sounds, such as the beeping of a phone or the sound of an app, can be very disturbing, while even certain colors can be distracting. This meant the researchers had to consider the full context of how they were presenting the design session to each participant.
To solve this challenge, the DYL team needed a way to:
Intuitively present a multi-stage design methodology
The DYL process encompasses six design stages: understand, define, ideate, prototype, test, and evaluate. These stages are iterative and each is associated with a specific goal, such as defining a purpose for a solution or stimulating creativity. While this type of process is well-known within the design world, it could be confusing or overwhelming to those unfamiliar with it, especially to those with autism. The researchers needed a way to make this as straightforward and intuitive as possible.
Minimize environmental challenges
Not everyone involved in the study had the luxury of a comfortable and private space to work through the DYL process. Some were located in healthcare settings, while others lived in group homes. The technological and design literacy of their caretakers, who were closely involved in the research, had to be taken into account as well. All this made it necessary to choose a solution that was simple enough to be used in potentially challenging situations.
Conduct design sessions remotely
The research began in early 2020, at the onset of the pandemic, which meant it had to quickly pivot from in-person sessions to virtual ones. However, the researchers still wanted to use physical toolkits, consisting of various tools (such as cards), in order to help prompt and encourage the autistic users to follow the design process. This required a solution that would be able to both accommodate remote sessions and work alongside low-tech, physical tools.
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It’s called autism spectrum condition, so that already says something about the different challenges people face. It can be very broad. But what it comes down to is communication difficulties, social interaction, and also sensory integration as we call it. That means essentially that sensory information is processed differently. And this can be information like audio but also visually. [...] You have to really be aware that visual information and specific colors can be very disturbing. The same goes for auditory notifications.
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SOLUTION
Creating new paths toward independence
The DYL team incorporated Mural into their research process and made it a part of the review sessions they held afterward. Despite the challenges they faced, doing so allowed them to successfully engage with a number of autistic people and further refine their design methodology. Here’s what they did:
Broke out each design stage into its own Mural environment
To increase accessibility, the researchers took extra care to ensure each subject would be able to successfully engage with the material. For instance, rather than sending lengthy instructions, the team isolated each of the six design stages into a separate Mural template, then wrote out simple instructions beside each step. They also included a link to the Mural in advance so that subjects could view the material beforehand if they wished.
Provided additional layer of interaction between autistic person and caregiver
With simple and accessible templates in place, the researchers were able to more clearly instruct both the autistic people and their caregivers on how to use the physical toolkits they sent out. Despite their unfamiliarity with the design process, as well as the unique needs of the autistic experience, this method helped make the research process clearer by bridging the physical and digital tools.
Involved multiple stakeholders to analyze and refine results
After conducting multiple research sessions, the process of consolidating and reviewing the information the researchers collected was simple. The team simply created a new Mural, inserted their findings, then invited researchers, autistic people, caretakers, healthcare workers, and other stakeholders to identify what is and is not working. This process helps ensure the DYL methodology remains fully collaborative, from initial research to final review.
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The DesignLab at the University of Twente was already using Mural. So it was already available to me there and that was the reason I started using it. When we actually started collaborating with autistic participants, I wondered to what extent MURAL took into account accessibility for neurodiverse users. It turned out that the Accessibility team at MURAL takes this very seriously, and that was the reason why we seriously considered MURAL as a tool in our research project.
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IMPACT
Results
Increased focus on specific tasks
With the ability to create custom environments that reduce unnecessary distractions, simplify instructions, and integrate well with physical toolkits, Mural proved strategic for helping focus each stage of the DYL process. In turn, this helped researchers encourage active engagement from both autistic people and their caregivers.
Streamlined research process
Apart from enabling the team to continue their work remotely after the onset of the pandemic, Mural also helped make the research process more efficient. For instance, instead of physically creating the materials for each session, Mural's digital templates can easily be duplicated, revised, and distributed to different participants. Any work is then automatically recorded for analysis, while research results can be quickly aggregated and discussed — both in real-time and asynchronously — in separate murals among distributed groups of stakeholders.
Inspiring further ideas around improving neurodiverse accessibility
Since establishing Mural as a useful platform for helping autistic people communicate and interact with technology, the DYL researchers have begun working with the Mural accessibility team to brainstorm and explore further ideas for improving accessibility. Potential solutions include simplified controls for creating and editing templates, additional tools for helping participants communicate with facilitators, and even custom-built hardware that can make it easier to interact directly with Mural. While still early, these ideas are vital for designing equitable technology.
You can learn more about the Design Your Life project by clicking here or follow its progress on Twitter. If you have any questions on this research, please email Thijs Waardenburg at thijs.waardenburg@han.nl.
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Something I truly believe in is that universally accessible products are actually better products for everyone. When you really think about how you can provide information or support about using products [...] then in the end it will be better for everyone to use.
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Take Action
Design your life
The DYL template uses Stanford d. School's design-thinking method to enable people to develop their own innovative and assistive technologies that can improve their lives. This template was designed in conjunction with Thijs Waardenburg for their Design Your Life research project. It can serve as a virtual template to facilitate the design process with the goal of individuals finding what independence means to them and what they need to achieve it.
