Designing a toolkit to empower young autistic adults to create personal products that promote independence : a case study

How do you create tools that empower young autistic adults (YAAs for short) to create personal solutions by themselves, which contribute to their independence? That is the central question in the Design Your Life project. The toolkit is used in different case studies by the YAA and people close to them to go through a design process. This thesis explores one case study within this project, where the toolkit is set up in such a way that the toolkit itself functions as the design facilitator – as opposed to having a human design facilitator present. Additionally, the following question was researched: How do you support communication between an autistic and neurotypical participant during a co-design process, without the designer/researcher being present? For the communication process, the embodied enactive approach as described by De Jaegher (2013) is taken as a basis. The toolkit is created using a theoretical framework incorporating the embodied enactive approach, as well as theories on co-design, communication in co-design and co-design with people with autism. Then the toolkit was tested in a case study with one YAA and their caregiver. The communication between the YAA and the caregiver was supported using different strategies. The first strategy was through accommodating the needs of the YAA in communication and in co-design settings. A second strategy was through assigning roles to the YAA and the caregiver in the toolkit: the YAA was given the role of main designer, the caregiver that of co-designer. Finally, different activities were aimed at letting the participants get to know each other in a new way. The relationship between the YAA and the caregiver was enriched through the toolkit activities. The different design activities aimed at getting to know each other better had this effect. The design goal allowed the caregiver to get to know a new side of the YAA. In this particular case study, the design goal played an important role, as it changed dramatically during the course of the case study. The new design goal placed the participants in different roles in comparison to their roles in relation to the old design goal. The old goal was already interfered in by the caregiver and the YAA’s mother, projecting their opinion on the goal. However, the YAA had his own way to going about achieving his goal, creating a design impasse. The new design goal was very personal to the YAA and also in a whole new domain. Because the caregiver is not familiar with that domain, she was able to become an unbiased inquisitive co-designer. This gave the YAA much more ownership over the design goal and possible design outcomes. Though the toolkit was developed to be used by itself, the participants preferred the presence of the designer/researcher, as she guided the participants through the activities by offering more extensive design knowledge than was present in the toolkit. The designer/researcher helped the participants make confident design decisions and enrich the activity output, in addition to helping them realise the prototype, that being creating a summary of Simon’s world and contacting a mentor to teach Simon how to use Unreal Engine. The toolkit can be improved by further accommodating the YAA, e.g. by offering more options for personalisation in the offered activities. The support in the design domain can be enriched with explanations on how one activity output supports the input for another activity, as well as explaining the design rationale.