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From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research

Gemma Williams Orcid Logo

Research for All, Volume: 4, Issue: 2

Swansea University Author: Gemma Williams Orcid Logo

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DOI (Published version): 10.14324/rfa.04.2.13

Abstract

The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary ai...

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Published in: Research for All
ISSN: 2399-8121
Published: UCL Press 2020
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URI: https://cronfa.swan.ac.uk/Record/cronfa63312
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first_indexed 2023-05-21T20:45:17Z
last_indexed 2023-05-21T20:45:17Z
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spelling v2 63312 2023-05-02 From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research c457f01f621c5274656e591f782f52a8 0000-0002-5162-0440 Gemma Williams Gemma Williams true false 2023-05-02 PHAC The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary aim, from an initial need to acquire naturalistic conversation data for my linguistic PhD research investigating a theoretical reframing of autistic language use as ‘different’ rather than ‘deficient’. The desire to make the data collection a meaningful experience for the participants in its own right was central to the research design, and so the Talking Together loneliness project was devised as a way to achieve this. However, it was not until the research was under way that the potential for valuable, immediate impact became apparent. This article reflects on the successes and challenges of the Talking Together pilot as a piece of autistic-led participatory research, and explores how the principles of engaged, participatory research can be applied so as to maximize impact, even where engagement may not be a primary aim. It also explores the ‘participatory’ nature of participatory research where the researcher belongs to the marginalized stakeholder group. Journal Article Research for All 4 2 UCL Press 2399-8121 22 9 2020 2020-09-22 10.14324/rfa.04.2.13 http://dx.doi.org/10.14324/rfa.04.2.13 COLLEGE NANME Public Health COLLEGE CODE PHAC Swansea University 2023-06-09T15:07:57.8718864 2023-05-02T12:51:19.1301365 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Gemma Williams 0000-0002-5162-0440 1 63312__27792__2e6a5bfe9e774ed993c0c52419191239.pdf 63312.pdf 2023-06-09T15:06:51.2382048 Output 240498 application/pdf Version of Record true This is an open-access article distributed under the terms of the Creative Commons Attribution Licence (CC BY) 4.0 https://creativecommons.org/licenses/by/4.0/, which permits unrestricted use, distribution and reproduction in any medium, provided the original author and source are credited. true eng https://creativecommons.org/licenses/by/4.0/
title From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
spellingShingle From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
Gemma Williams
title_short From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
title_full From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
title_fullStr From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
title_full_unstemmed From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
title_sort From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research
author_id_str_mv c457f01f621c5274656e591f782f52a8
author_id_fullname_str_mv c457f01f621c5274656e591f782f52a8_***_Gemma Williams
author Gemma Williams
author2 Gemma Williams
format Journal article
container_title Research for All
container_volume 4
container_issue 2
publishDate 2020
institution Swansea University
issn 2399-8121
doi_str_mv 10.14324/rfa.04.2.13
publisher UCL Press
college_str Faculty of Medicine, Health and Life Sciences
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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
url http://dx.doi.org/10.14324/rfa.04.2.13
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description The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary aim, from an initial need to acquire naturalistic conversation data for my linguistic PhD research investigating a theoretical reframing of autistic language use as ‘different’ rather than ‘deficient’. The desire to make the data collection a meaningful experience for the participants in its own right was central to the research design, and so the Talking Together loneliness project was devised as a way to achieve this. However, it was not until the research was under way that the potential for valuable, immediate impact became apparent. This article reflects on the successes and challenges of the Talking Together pilot as a piece of autistic-led participatory research, and explores how the principles of engaged, participatory research can be applied so as to maximize impact, even where engagement may not be a primary aim. It also explores the ‘participatory’ nature of participatory research where the researcher belongs to the marginalized stakeholder group.
published_date 2020-09-22T15:07:56Z
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