Co-Designing for inclusion: Lessons from the AutSPACEs project

A poster presented by the AutSPACEs project at the 2023 Citizen Science 4 Health conference.

Abstract

Historically, research on Autism has often been performed on autistic people, rather than with them. With AutSPACEs – an open and participatory online citizen science project that focuses on sensory processing in built environments – we are exploring how co-created citizen science can lead to more inclusive and applied research. By combining co-design of research methods; co-leadership for decision making; and using open source philosophies we aim to guarantee the equitable co-ownership of all our outputs. 

In our poster we will reflect on the challenges that we have encountered throughout this process that has been going on since 2019 – including the barriers to creating inclusive online communities, technical challenges, and the building relationships between historically distrusting communities. Beyond those challenges we will also share our success stories and how we managed to overcome many of these challenges: through on-going relationship building, providing diverse engagement pathways for contributors and by taking a long-term view on real-world impact rather than focusing on short-term academic impact.

We expect that this sharing of our learned lessons can support and inspire others that aim to develop co-led research efforts with diverse communities and in particular those which typically have been marginalized by academic research to avoid some of the issues we encountered. Furthermore, we hope that we will be able to learn from others that have already tried similar approaches within their own fields or domains, sparking mutual learning.