Design Your Own Supportive Lifeworld: An Enactive Approach

Background Supportive technologies for autistic young adults are promising in principle, yet their uptake remains limited. Critics argue that many supportive technologies have their origins in healthcare and thus are designed to teach autistic people – children, usually – skills that they supposedly lack. Overall, there is a strong focus on functional limitations, with little attention to the real-life experience that users have with these technologies. This may evoke a sense of disempowerment and result in the rejection of valuable supportive technology. Objectives Lived experience has recently gained attention in enactive psychiatry, which foregrounds a holistic understanding of autism. Treatment rationale should consider the real-life physical and social environments in which autism manifests itself, other than only its pathological features as a ‘brain disorder’. By focusing on the lived experience of autistic people within their unique environments, it also becomes easier to tailor effective therapeutic interventions. Inspired by enactive psychiatry, the aim is to bring the lived experience of autistic individuals also to supportive technology design. In the on-going Design Your Life-research project (DYL), we are developing a toolkit that helps young autistic adults design supportive technologies based on their unique preferences. The toolkit should help (1) users to explore and map their physical and social environment, (2) understand the supportive role that technology can play in that environment and (3) bring technology to fruition. Method Over the course of two years, the DYL-toolkit was developed at the intersection of design research and psychiatry. First, we investigated which design tools and techniques could be used for the collection and analysis of experiential data. Second, we investigated how the context of design - context-mapping, idea generation, idea selection, testing, evaluation, reflection - could help young autistic adults learn more about themselves and their personal support needs. To answer these questions, we initiated eleven design case studies with autistic young adults - including their caregivers, if applicable -, each time trying out a different version of the toolkit. Data was analysed using a grounded theory approach. Results The toolkit was completed in October 2022, consisting of twenty six design tools. Among others, the Think-Tell-Recognize-tool helps users to reflect on sensory, sensorimotor, social and emotional components of supportive technologies they are already using. At the end of the design process, the My Solution in My Lifeworld-tool helps users to investigate how these components can be further enhanced or improved in a follow-up design iteration. For these and other tools, the emphasis is on experiential knowledge. Conclusions From the case studies, we observed that the toolkit was indeed used to develop supportive technology going beyond only functionality: users considered aesthetics and existing routines and social networks in which the technology would interfere. Whenever the user was asked to clarify their design decisions, this seemed to provoke delicate discussions about one’s situation – regarding existential, family or domestic affairs –, yet shifts ‘responsibility’ from the autistic person themself to their surroundings. Design empowers a person to reflect on their own lifeworld and personal, pragmatic support needs therein