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

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Grant, A., Williams, K., Henry, K., Holloway, W., Nicolaidis, C., Kara, H., & Brown, A. (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 (pp. 61-79). Springer Nature Switzerland. https://doi.org/10.1007/978-3-031-66127-3_4

Publication date: 1 Jan 2024 Added to AutiHub: 5 Jul 2026 Type: Book chapter Article language: English
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Authors

Publication authors
7
Publication authors identified as autistic
3 / 7 (42.9%)
  1. Aimee Grant *
  2. Kathryn Williams *
  3. Karen Henry
  4. Willow Holloway *
  1. Christina Nicolaidis
  2. Helen Kara
  3. Amy Brown

Abstract

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.

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Cited references
69
Total cited references integrated for this publication.
Cited references with an identified autistic author
27 / 69 (39.1%)
Cited author occurrences identified as autistic
54 / 270 (20.0%)
Among occurrences linked to AutiHub author records: 54 / 150 (36.0%). Distinct cited authors identified as autistic: 20 / 191 (10.5%).
Cited author occurrences linked to AutiHub author records
150 / 270 (55.6%)
Distinct linked cited authors: 90 / 191 (47.1%)
Linked cited-author occurrences not identified as autistic
96 / 150 (64.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 96 / 270 (35.6%). Distinct linked cited authors not identified as autistic: 70 / 90 (77.8%).
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