AutSPACEs and Citizen Science
Creators: name: Aitkenhead, Georgia
name: Batchelor, Sophia
name: Smith, Otis
name: Fantoni, Susanna
Publisher: name: Zenodo
Year: 2022
Subjects: autism, sensory processing, citizen science, participatory science, open science, open souce, FAIR data

description: Presentation to be delivered at the Autistica Festival 2022 <strong>Academic abstract</strong> AutSPACEs is a collaborative, citizen science research project investigating sensory processing differences between autistic people and the non-autistic population, with the aim of understanding how this affects the daily lives of autistic people. The research project is supported by a web-based platform that has been co-created by an autistic community, in collaboration with The Alan Turing Institute and Austistica. This session will present the methods for conducting inclusive, participatory citizen-science as developed for the AutSPACEs project, and demonstrate how embedding community involvement throughout the research process makes for more impactful outputs. It will cover the project’s inception, and present the citizen science framework used by AutSPACEs, illustrated by practical examples. This will include showing how community recommendations have been used to prioritise and inform the accessibility and design requirements for AutSPACEs, and giving a use case for how open source tools can be used to support an open and inclusive research project. The presentation, and project itself, aims to demonstrate how research is better served by the active inclusion of autistic communities, so that it may better represent the priorities, needs, and concerns of autistic individuals. With this presentation we hope to showcase a new resource for autistic people, advocate for the importance of autistic inclusion in research to other autism researchers, and provide a practical example of participatory citizen science in action. We will describe the future uses of the citizen science platform, and how this approach can support research having a positive impact for autistic people, including how participatory citizen science can inform policy and lead to the creation of accessible public spaces. We will also show how a citizen science platform like AutSPACEs can be managed and sustained as a welcoming and inclusive space for promoting understanding of autistic people’s lived experiences. <br> <strong>Lay-person Abstract</strong> Approximately 90% of autistic people experience everyday sensory information (sound, smell, sight, and touch) differently than non-autistic people. Lights may seem brighter, sounds louder, and daily spaces such as schools, hospitals, and public transport can become overwhelming. However, it is not well understood what causes these differences, or what can be implemented at a society-wide level to make the world easier to experience for autistic people. The AutSPACEs project is a research community. Together we design and develop a web-based platform where autistic people can share stories, strategies, and recommendations with other autistic people and researchers in order to better understand the relationship between sensory process and autism. This presentation will cover how the AutSPACEs research community has been set up and how we make sure that the decisions made about the platform, and the research it supports, represent the needs of autistic people. We will cover how the project was designed so that austistic people were involved in every stage from the outset, and how this evolved into a citizen science approach that has created an inclusive and open research process where autistic people in this project are not just research subjects, but are co-creators, decision makers, and leaders. We will give examples of how recommendations from autistic collaborators have become design features of the platform, and show how autistic people’s input has been used as the basis for research activities, as well as demonstrating how autistic community members have led on research tasks. We will describe how the AutSPACEs project can be used for positive impact for autistic people in the future by making environments more accessible, providing a welcoming inclusive space for sharing knowledge and experiences, and increasing our understanding about sensory processing.