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

Autism, Volume: Special Issue: Autistic rights movement and social model in autism research and practice

Swansea University Authors: Gemma Williams Orcid Logo, 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 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa66078
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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 – 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: Qualitative Research; Autism; Participatory Research; Participatory Action Research; Community Based Participatory Research; Action Research
College: Faculty of Medicine, Health and Life Sciences
Funders: This paper relates to a project funded by the Wellcome Trust PBR1033-100