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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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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...

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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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first_indexed 2024-04-18T11:30:18Z
last_indexed 2024-04-18T11:30:18Z
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spelling v2 66078 2024-04-18 ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production c457f01f621c5274656e591f782f52a8 0000-0002-5162-0440 Gemma Williams Gemma Williams true false 8ea1fbb848d05d2f0262c6d03cfc9698 0000-0002-7761-468X Rebecca Ellis Rebecca Ellis true false 2928b8250f9bd7a8b31e105c91ce1c87 Willow Holloway Willow Holloway true false 51ce5e032ed15fb4a68c8493ccec842b MONIQUE CRAINE MONIQUE CRAINE true false 6a1ce3bc54c692c804e858b70d2e4bd2 0000-0001-7205-5869 Aimee Grant Aimee Grant true false 2024-04-18 HSOC 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. Journal Article Autism Special Issue: Autistic rights movement and social model in autism research and practice SAGE Publications 1362-3613 1461-7005 Qualitative Research; Autism; Participatory Research; Participatory Action Research; Community Based Participatory Research; Action Research 17 5 2024 2024-05-17 10.1177/13623613241253014 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) This paper relates to a project funded by the Wellcome Trust PBR1033-100 2024-10-17T14:26:06.1606227 2024-04-18T12:21:51.0830531 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Gemma Williams 0000-0002-5162-0440 1 Rebecca Ellis 0000-0002-7761-468X 2 Willow Holloway 3 Selena Caemawr 4 MONIQUE CRAINE 5 Kathryn Williams 0000-0001-7274-3493 6 Aimee Grant 0000-0001-7205-5869 7 66078__30425__3dd811be63004125a0de40053ca57d7a.pdf 66078.VoR.pdf 2024-05-21T14:49:52.1418249 Output 466043 application/pdf Version of Record true © The Author(s) 2024. This article is distributed under the terms of the Creative Commons Attribution 4.0 License. true eng https://creativecommons.org/licenses/by/4.0/ 245
title ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
spellingShingle ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
Gemma Williams
Rebecca Ellis
Willow Holloway
MONIQUE CRAINE
Aimee Grant
title_short ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
title_full ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
title_fullStr ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
title_full_unstemmed ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
title_sort ‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production
author_id_str_mv c457f01f621c5274656e591f782f52a8
8ea1fbb848d05d2f0262c6d03cfc9698
2928b8250f9bd7a8b31e105c91ce1c87
51ce5e032ed15fb4a68c8493ccec842b
6a1ce3bc54c692c804e858b70d2e4bd2
author_id_fullname_str_mv c457f01f621c5274656e591f782f52a8_***_Gemma Williams
8ea1fbb848d05d2f0262c6d03cfc9698_***_Rebecca Ellis
2928b8250f9bd7a8b31e105c91ce1c87_***_Willow Holloway
51ce5e032ed15fb4a68c8493ccec842b_***_MONIQUE CRAINE
6a1ce3bc54c692c804e858b70d2e4bd2_***_Aimee Grant
author Gemma Williams
Rebecca Ellis
Willow Holloway
MONIQUE CRAINE
Aimee Grant
author2 Gemma Williams
Rebecca Ellis
Willow Holloway
Selena Caemawr
MONIQUE CRAINE
Kathryn Williams
Aimee Grant
format Journal article
container_title Autism
container_volume Special Issue: Autistic rights movement and social model in autism research and practice
publishDate 2024
institution Swansea University
issn 1362-3613
1461-7005
doi_str_mv 10.1177/13623613241253014
publisher SAGE Publications
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
document_store_str 1
active_str 0
description 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.
published_date 2024-05-17T14:26:04Z
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