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Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project

Aimee Grant Orcid Logo, Kathryn Williams Orcid Logo, Karen Henry, Willow Holloway, Christina Nicolaidis Orcid Logo, Helen Kara Orcid Logo, Amy Brown Orcid Logo

The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies, Pages: 61 - 79

Swansea University Authors: Aimee Grant Orcid Logo, Amy Brown Orcid Logo

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DOI (Published version): 10.1007/978-3-031-66127-3_4

Abstract

Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset...

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Published in: The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies
ISBN: 9783031661266 9783031661273
Published: Cham Springer Nature Switzerland 2024
Online Access: http://dx.doi.org/10.1007/978-3-031-66127-3_4
URI: https://cronfa.swan.ac.uk/Record/cronfa67936
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spelling v2 67936 2024-10-08 Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project 6a1ce3bc54c692c804e858b70d2e4bd2 0000-0001-7205-5869 Aimee Grant Aimee Grant true false 37aea6965461cb0510473d109411a0c3 0000-0002-0438-0157 Amy Brown Amy Brown true false 2024-10-08 HSOC Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset and throughout the research. This includes how Aimee’s online consultation with Autistic people who had been pregnant resulted in a complete shift in the study’s boundaries from considering maternity only, to reproductive health across the life course. Next, we detail the in-depth discussions with Autistic community leaders (Kathryn and Willow) and an Autistic midwife (Karen) that shaped the study’s governance and research design prior to submission. Following this, we report the study’s approach to using creative research methods in an individually tailored way, and how this is an appropriate and ethical strategy when working with a heterogeneous group with differing communication needs and preferences for how they would like to take part in research. Finally, we then identify facilitators that may enable Autism researchers to co-develop ethical and participatory research funding applications. We conclude that participatory approaches which acknowledge Autistic strengths and centre the Autistic community have the best likelihood of the research benefitting Autistic people. Book chapter The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies 61 79 Springer Nature Switzerland Cham 9783031661266 9783031661273 29 9 2024 2024-09-29 10.1007/978-3-031-66127-3_4 http://dx.doi.org/10.1007/978-3-031-66127-3_4 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University External research funder(s) paid the OA fee (includes OA grants disbursed by the Library) Wellcome Trust 225274_Z_22_Z 2024-10-08T13:18:11.8559984 2024-10-08T13:14:52.9175069 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Aimee Grant 0000-0001-7205-5869 1 Kathryn Williams 0000-0001-7274-3493 2 Karen Henry 3 Willow Holloway 4 Christina Nicolaidis 0000-0002-9394-5956 5 Helen Kara 0000-0001-7348-0963 6 Amy Brown 0000-0002-0438-0157 7
title Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
spellingShingle Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
Aimee Grant
Amy Brown
title_short Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
title_full Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
title_fullStr Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
title_full_unstemmed Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
title_sort Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
author_id_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2
37aea6965461cb0510473d109411a0c3
author_id_fullname_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2_***_Aimee Grant
37aea6965461cb0510473d109411a0c3_***_Amy Brown
author Aimee Grant
Amy Brown
author2 Aimee Grant
Kathryn Williams
Karen Henry
Willow Holloway
Christina Nicolaidis
Helen Kara
Amy Brown
format Book chapter
container_title The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies
container_start_page 61
publishDate 2024
institution Swansea University
isbn 9783031661266
9783031661273
doi_str_mv 10.1007/978-3-031-66127-3_4
publisher Springer Nature Switzerland
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
url http://dx.doi.org/10.1007/978-3-031-66127-3_4
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description Within Autism research, many studies fail to meaningfully involve Autistic people. In this chapter, we report on the co-development of a successful funding application where we specifically aimed to involve Autistic people with and without relevant professional experience as partners from the outset and throughout the research. This includes how Aimee’s online consultation with Autistic people who had been pregnant resulted in a complete shift in the study’s boundaries from considering maternity only, to reproductive health across the life course. Next, we detail the in-depth discussions with Autistic community leaders (Kathryn and Willow) and an Autistic midwife (Karen) that shaped the study’s governance and research design prior to submission. Following this, we report the study’s approach to using creative research methods in an individually tailored way, and how this is an appropriate and ethical strategy when working with a heterogeneous group with differing communication needs and preferences for how they would like to take part in research. Finally, we then identify facilitators that may enable Autism researchers to co-develop ethical and participatory research funding applications. We conclude that participatory approaches which acknowledge Autistic strengths and centre the Autistic community have the best likelihood of the research benefitting Autistic people.
published_date 2024-09-29T13:18:10Z
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