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‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production

Gemma Williams Orcid Logo, Dr Rebecca Ellis Orcid Logo, Willow Holloway, Selena Caemawr, MONIQUE CRAINE, Kathryn Williams Orcid Logo, Aimee Grant Orcid Logo

Autism, Volume: 29, Issue: 9, Pages: 2205 - 2215

Swansea University Authors: Gemma Williams Orcid Logo, Dr Rebecca Ellis Orcid Logo, Willow Holloway, MONIQUE CRAINE, Aimee Grant Orcid Logo

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Abstract

This paper describes and reflects on the first six meetings of a newly-established Autistic Community Council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings – involv...

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Published in: Autism
ISSN: 1362-3613 1461-7005
Published: SAGE Publications 2025
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URI: https://cronfa.swan.ac.uk/Record/cronfa66078
Abstract: This paper describes and reflects on the first six meetings of a newly-established Autistic Community Council, founded to steer a participatory, longitudinal qualitative study investigating the reproductive health of Autistic people with wombs. The two key aims of these initial six meetings – involving four Autistic community leader members and three Autistic researchers – was to (i) guide the start of the project and the development of accessible recruitment materials for the future eight lay members and (ii) establish a safe space and a model of accessible communication.We draw on extracts from transcripts made during meetings, member ‘field’ notes and a reflexive co-writing practice to identify the ways in which a sense of safety was built during these first Community Council meetings. We explore what it means to be an insider-only Community Partnered Participatory Research Council and reflect on the praxis we developed to facilitate Autistic knowledge production.
Keywords: action research, autism, community-based participatory research, participatory action research, participatory research, qualitative research
College: Faculty of Medicine, Health and Life Sciences
Funders: This paper reflects on a project funded by The Wellcome Trust (Grant ID: Wellcome-225274/Z/22/Z).
Issue: 9
Start Page: 2205
End Page: 2215