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Participatory design with autistic adults – involving, supporting and empowering communities

By Marc Fabri. Leeds Beckett University, a member of the Editorial Board of the Journal of Enabling Technologies [https://www.emerald.com/insight/publication/issn/2398-6263]


In this post, Dr Marc Fabri from Leeds Beckett University shares his thoughts on participatory design with autistic adults based on his experiences from two European-funded projects: Autism&Uni (www.autism-uni.org) which focuses on supporting autistic students during the transition into university, and the IMAGE project (www.imageautism.com) which focuses on the transition out of university, into employment.

When designing digital tools for autistic people, their needs, preferences and characteristics must be considered. We know that autistic people typically welcome structure, both in their daily routines and their social interactions. In a recent research paper (https://link.springer.com/chapter/10.1007/978-3-319-40355-7_15) we argued that digital tools for autistic people should equally be designed in a well-structured, clear and uncluttered way, thereby reducing complexity and distractions.

These insights came from our experience of creating the Autism&Uni toolkit (www.autism-uni.org/toolkits), an online resource that helps autistic students navigate the transition from school to university. Through a series of participatory design workshops, the toolkit gradually took shape - both in terms of its content and its presentation. The co-creation journey is reported in the Journal of Assistive Technologies (https://www.emerald.com/insight/content/doi/10.1108/JAT-02-2016-0008), and the final toolkit is now in use at several universities in the UK and Ireland.

By involving end users in this way, we hoped to avoid the trap designers often find themselves in: creating tools they would like to use themselves, but which are not necessarily fit for the intended audience. Steve Jobs summarised the pitfalls of a “feature-driven” design approach quite nicely in 1997 (https://youtu.be/FF-tKLISfPE). The importance of end-user participation in the design process has been widely acknowledged in the research literature (https://www.tandfonline.com/doi/full/10.1080/10447318.2018.1550181), in the creative industry profession (https://uxmag.com/articles/participatory-design-in-practice) and also in public service design (https://www.innovations.harvard.edu/blog/design-thinking-better-government-services-human-centered).

When running our participatory design workshops, a few assumptions we made were challenged: previous research suggested that autistic people tend to think visually, find it difficult to imagine future scenarios, and would feel uncomfortable in workshops with strangers. But not so!

In fact, it was refreshing and reassuring how wrong we were, how well the design workshops ran, and how enthusiastically participants contributed. Autistic students were keen to share their stories and shape the Autism&Uni toolkit. They appreciated being listened to and wanted to make a difference for the future community of autistic students. We later surmised that our early assumptions were based on participatory design literature on autistic children, whilst our end-user group were young adults who were generally very articulate, studious, and able to advocate effectively for themselves. A different kettle of fish.

The next major transition for autistic students is from university into the workplace, and for our current project (see www.imageautism.com) we’re co-designing an employability toolkit for students to use during the final stage of their studies. It will cover areas such as work placements, interview preparation, sharing an autism diagnosis and accessing careers advice. Involved in the co-creation are not just designers and autistic students, but also academics, careers advisors and employers. By bringing together these different groups we hope to tap into the full and diverse pool of experiences and explore the challenges autistic students face from a number of perspectives. But the real value of bringing everyone together, we believe, is the mutual empathy that develops when participants find out about others’ experiences, barriers and success stories.

Participation is about involving, sharing, learning and evolving. It is also about the absolution of power: when done effectively, it fundamentally shifts who is in charge, who sets the agenda, and who makes the decisions. Max Krüger wrote about this in a recent article in ACM Interactions (http://interactions.acm.org/archive/view/may-june-2019/what-is-participation) where he reflects critically on the role of the Designer. I touched upon it in a recent editorial to a special journal issue:

The ultimate goal, in the guest editors’ opinion, is to help researchers and designers reflect on their position of power and privilege in the design process, and increasingly to step aside to let autistic end users become true co-creators of the products that are ultimately meant for them to use, enjoy and sometimes greatly rely on.
(https://www.tandfonline.com/doi/abs/10.1080/10447318.2018.1550181)

Ideally, designers become facilitators and coaches, rather than leaders of the process. This power can be hard for designers to let go off. But by absolving it, and seeing the end users as equals in the process, it becomes much more natural to build trust and mutual respect and thereby empowering communities to direct the way technology and services are designed not just for them, but with them.