Participatory citizen science to improve autistic people's lives

Slides for Kirstie's talk at the Center for Research and Interdisiplinarity on 27 April 2020 More information: https://events.cri-paris.org/e/649/cri-research-seminar-kirstie-whitaker-participatory-citizen-science-to-improve-autistic-peoples-lives Abstract: Autistica and the Alan Turing Institute are working together to build a participatory, citizen science platform to gather data on how sensory processing affects autistic people’s navigation of the world. Numerous studies have confirmed that autistic people experience sensory processing differences, and that this can significantly impact their lives. One aspect which is not yet fully understood is how these differences affect the ways in which autistic people navigate different environments. In this talk, I will showcase the team's process of building a project that is participatory from the ground up. We ensure that all aspects of the project are designed and developed in collaboration with members of the autistic community through focus groups and user testing in the design phase. In close collaborations with the Open Humans community, we are developing a platform for which the software, design, process and governance documentation are all open source. We give the individual contributors control over how their data is used on the platform. Flipping the traditional scientific study on its head, our goal is to give a voice to autistic citizen scientists and educate neurotypical people. We seek to empower everyone in supporting autistic people and their families in living long, healthy, happy lives. Combining open science, participatory design, transparent governance, inclusive community management, and collaborations across academia, industry and the third sector requires a diverse, interdisciplinary community of contributors. CRI audience members will leave knowing how they can join the team and contribute to the project that same day, starting from information at our website and GitHub repository, or reuse the processes we've developed for their own citizen science research. Bio: Kirstie Whitaker is Programm Lead for Tools, Practices and Systems at the Alan Turing Institute (London, UK). Her work covers a broad range of interests and methods, but the driving principle is to improve the lives of neurodivergent people and people with mental health conditions. Dr Whitaker uses magnetic resonance imaging to study child and adolescent brain development and participatory citizen science to educate non-autistic people about how they can better support autistic friends and colleagues. She is the lead developer of The Turing Way, an openly developed educational resource to enable more reproducible data science. Kirstie is a passionate advocate for making science "open for all" by promoting equity and inclusion for people from diverse backgrounds, and by changing the academic incentive structure to reward collaborative working. She is the chair of the Turing Institute's Ethics Advisory Group, a Fulbright scholarship alumna and was a 2016/17 Mozilla Fellow for Science. Kirstie was named, with her collaborator Petra Vertes, as a 2016 Global Thinker by Foreign Policy magazine. You can find more information at her lab website: whitakerlab.github.io. Get involved Anonymously, publicly share suggestions via the "always open" google form: https://bit.ly/AutisticaTuringCitSciForm Say hello in our gitter channel: https://gitter.im/alan-turing-institute/AutisticaCitizenScience Subscribe to our mailing list for monthly project updates: https://tinyletter.com/AutisticaTuringCitizenScience Join the discussion in our issues and pull requests on GitHub: https://github.com/alan-turing-institute/ AutisticaCitizenScience Visit our project website and share the links with your colleagues: https://alan-turing-institute.github.io/AutisticaCitizenScience Useful links Autistica: https://www.autistica.org.uk/about-us/about-us #UnderstandMore YouTube video: https://youtu.be/rP1S8ip4VVE Autistica research priorities: https://www.autistica.org.uk/our-research/our-research/your-research-priorities Social model of disability animation: https://youtu.be/9s3NZaLhcc4 Open Humans: https://www.openhumans.or