AutSPACEs: a co-created &amp; open source citizen science project for sensory processing in autistic people
Creators: name: Tzovaras, Bastian Greshake
name: Aitkenhead, Georgia
name: Duncan, Helen
name: Mole, Callum
name: Stoffel, Martin
name: Llewellyn-Jones, David
name: Taylor, Robin
name: Fantoni, Susanna
name: Scott, James
name: Smith, Otis
name: Whitaker, Kirstie
Publisher: name: F1000 Research Limited
Year: 2023

description: Around 90% of autistic people process sensory information differently to non-autistic people. As a result, many public spaces are not well designed for autistic people. For example, they may be too bright, busy or loud. Prior research on sensory processing and autism has mostly been conducted in laboratory settings and has overlooked the lived experience of autistic people, thus failing to generalise to real world environments. With AutSPACEs – short for <i>Autism research into Sensory Processing for Accessible Community Environments </i>– we are running a community-led, online citizen science project that aims to fill this data gap in order to make environments more accessible for autistic people.<br> <br> While an open-source web platform for collecting qualitative data on sensory processing experiences is at the technical heart of the project, the real power of AutSPACEs lies in its implementation of the disability rights movement’s motto “Nothing about us, without us”. To that end, the project is co-designed by autistic people with the expressed goal to empower autistic people throughout the process. Starting out from the plan to have an online citizen science platform that enables autistic people to share their experiences around sensory processing in day-to-day life, we engaged in rigorous co-creation through scoping sessions, focus groups and co-working. This input by autistic people expanded the scope by an important factor: the community wished to also record recommendations of what could have made sensory processing experiences better. These recommendations could be personal coping strategies that may be useful to others, or recommendations to the designers/architects of spaces about what could make the environments more accessible and inclusive. Based on this community recommendation, AutSPACEs has adapted to become a joint repository of qualitative data on both sensory processing experiences and strategies for how to improve them. <br> <br> Since the initial goal setting, AutSPACEs implemented a co-creation and co-leadership model for the development of its citizen science platform: beyond being based on and following open source practices itself, the AutSPACEs commitment to openness and transparency includes monthly community meetings for open discussion and coworking on the platform. Additionally, all data collected by AutSPACEs – including from focus groups/workshops as well as the actual experiences recorded through the platform (where consented for research) – are shared in anonymised form, following FAIR principles.<br> <br> Our collaborative work has been key in supporting the needs of an autistic community, and addressing the gaps in current research. One powerful example is how to handle the reporting of experiences being submitted by others on behalf of an autistic person. Often, research has centred on second-hand experiences, with non-autistic people speaking for autistic people (e.g. parents/caretakers), leading to inaccurate and biassed results that do not accurately reflect the experiences of autistic people. As a result, such reports are contentious, with some people preferring to support only first-hand experiences being recorded. At the same time, the role of a carer is critical in supporting non-verbal autistic people to write and share their experiences. Collaboratively, the community made the trade-off to allow second-hand reports, and implemented a Code of Conduct to guide second-hand reporters in sharing experiences. This Code of Conduct was co-developed with the community, and also addressed issues around content moderation and how to store and display experiences that are potentially distressing, while not putting readers at risk. This working group developed customised moderation guidance and designed a set of trigger warnings established to safeguard an online autistic community. <br> <br> In our presentation we will highlight how the open and collaborative design process behind AutSPACEs has helped us to enable an inclusive citizen science project that supports a diverse range of participants, and share goals and ideas about how other research projects can profit from these lessons.