‘Design Your Life’ – it is something we do on a regular basis. It is that one tool you’ve created for yourself that makes your life easier, that one strategy that makes that horrid chore an easy or even fun job instead. These are tools that make your life easier, more enjoyable or less stressful. Within the Design Your Life research project, we are creating a toolkit for young autistic adults with which they can create their own, personalized solutions. Making your own thing, that works just for you, in the way you want it to do is, we believe, a very positive force for increasing your sense of autonomy.
The autistic experience
In this project we foreground what it is like to be autistic, not as a problem, but as a way of being that differs from the average person. The toolkit takes as a starting point how an autistic person experiences the world and how the one can develop personal solutions to deal with the various demands of day-to-day life.
These demands are especially important in the life of an autistic person growing into adulthood. Like all people, autistic people go through many changes in life, such as puberty, finishing education, starting a job and becoming more independent. But the pace at which they do so may be slower and the hurdles to overcome more challenging, especially when an existing network of support breaks down and new stable configurations need to be found.
These changes are accompanied by increasing demands on the young autistic adult. This can lead to them needing new strategies to support their growing independence. This is where the Design Your Life-toolkit comes in.
This toolkit has co-design at its core: it is developed to support a co-design process, but it is also being developed through co-design. We use co-design to give the young autistic adult the tools to express themselves and advocate for their needs.
The toolkit offers the participants an iterative design cycle that is derived from the Stanford d.school Design Thinking method (Doorley et al., 2018), guiding them through the following stages:
- My situation (‘Mijn situatie’): during this phase the participant investigates which technologies they already use and what their opinion of that technology is.
- My focus (‘Mijn focus’): the participant determines what they are designing their technology for.
- My ideas (‘Mijn ideeën’): the participant generates ideas to create their ideal technology.
- My thing (‘Mijn ding’): the participant picks one idea and creates a prototype.
- My test (‘Mijn test’): the participant tests the prototype.
- My insights (‘Mijn inzicht’): the participant draws insights from testing their prototype and their design process. This step offers input for a second design cycle.
The participants will not work by themselves, but with a co-design partner. This partner is someone who knows the young autistic adult well and can support them during the design process.
Research through design
The project uses a research-through-design approach: during several design cases different forms of the toolkit are being tested with a young autistic adult and their co-design partner. The insights from these cases are then used to create a new iteration of the toolkit.
A more in depth explanation of the Design Your Life method can be found in the paper by Waardenburg et al. (2021).
The Design Your Life project runs from February 2020 till September 2024. Currently, we are developing the toolkit, and to do so we are running many case studies where we trial various options and materials and get feedback from autistic young adults and their care-givers, as well as from health-care organisations and autistic advocacy organisations.
Doorley, S., Holcomb, S., Klebahn, P., Segovia, K., & Utley, J. (2018). Design Thinking Bootleg. https://dschool.stanford.edu/resources/design-thinking-bootleg
Waardenburg, T., van Huizen, N., van Dijk, J., Magnée, M., Staal, W., Teunisse, J.-P., & van der Voort, M. (2021). Design Your Life: User-Initiated Design of Technology to Support Independent Living of Young Autistic Adults. In M. M. Soares, E. Rosenzweig, & A. Marcus (Eds.), Design, User Experience, and Usability: Design for Diversity, Well-being, and Social Development (Vol. 12780, pp. 373–386). Springer International Publishing. https://doi.org/10.1007/978-3-030-78224-5_26