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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
,
Rebecca Ellis ,
Willow Holloway,
Selena Caemawr,
MONIQUE CRAINE,
Kathryn Williams ,
Aimee Grant
Autism, Volume: Special Issue: Autistic rights movement and social model in autism research and practice
Swansea University Authors:
Gemma Williams , Rebecca Ellis , Willow Holloway, MONIQUE CRAINE, Aimee Grant
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DOI (Published version): 10.1177/13623613241253014
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...
| Published in: | Autism |
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| ISSN: | 1362-3613 1461-7005 |
| Published: |
SAGE Publications
2024
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| Online Access: |
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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. |
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| 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 |