Grant, Aimee, Williams, Kat, Henry, Karen, Holloway, Willow, Nicolaidis, Christina, Kara, Helen and Brown, Amy (2024) Co-developing an autism research funding application to facilitate ethical and participatory research: the autism from menstruation to menopause project. In: The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies. Palgrave Macmillan, London, England, pp. 61-79. ISBN 9783031661266

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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 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.

Item Type:	Book Section
Uncontrolled Keywords:	autism, autism research, intellectual and developmental disability, participatory research, participatory action research, community-based participatory research, accessibility, research ethics, grant application, research funding
Subjects:	H Social Sciences > H Social Sciences (General)
Divisions:	Faculty of Health & Science > School of Nursing, Midwifery & Public Health
Depositing User:	Karen Henry
Date Deposited:	30 Sep 2024 10:04
Last Modified:	30 Sep 2024 10:04
URI:	https://oars.uos.ac.uk/id/eprint/4284

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