Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol

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Grant, A., Williams, G., Axbey, H., Wilkins, A., Firth, E., Lim, H., Cave, H., Williams, K., Ribbons, K., Sinfield, M., Craine, M., Caemawr, S., Holloway, W., Brown, A., Nicolaidis, C., Kara, H., & Ellis, R. (2024). Participatory longitudinal qualitative interview study to understand Autistic gynaecological and obstetric health: the Autism from menstruation to menopause study protocol. BMJ Open, 14(12), e088343. https://doi.org/10.1136/bmjopen-2024-088343

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

Publication authors
17
Publication authors identified as autistic
8 / 17 (47.1%)
  1. Aimee Grant *
  2. Gemma Williams *
  3. Harriet Axbey *
  4. Abigail Wilkins
  5. Ellen Firth
  6. Hazel Lim
  1. Helen Cave
  2. Kathryn Williams *
  3. Kay Ribbons
  4. Madeleine Sinfield
  5. Monique Craine *
  6. Selena Caemawr *
  1. Willow Holloway *
  2. Amy Brown
  3. Christina Nicolaidis
  4. Helen Kara
  5. Rebecca Ellis *

Abstract

INTRODUCTION: Autism is a lifelong minority neurotype present from birth. There is a dearth of credible evidence to suggest gender variation in Autism prevalence, despite historical under-diagnosis of women. Autistic people Assigned Female At Birth (AFAB) have worse physical and mental health compared with non-Autistic peers. To date, the reproductive health experiences of Autistic AFAB people have been under-investigated. METHODS AND ANALYSIS: This study aims to co-develop a quality improvement intervention to improve the reproductive health of Autistic people. The study uses Community Partnered Participatory Research (an approach similar to Community-Based Participatory Research), largely through a Community Council that co-governs the study. To understand reproductive health needs, a longitudinal qualitative investigation using creative methods will be undertaken with 100 Autistic AFAB people with 10 waves of data collection over 5 years (interview n=500-1000). Participants will be purposively selected to include harder-to-reach members of the Autistic community, including those who are non-speaking or semi-speaking, have a learning disability and those from marginalised ethnicities. Data will be analysed thematically with Community Council involvement. Intervention development will be undertaken from 2029 onwards. ETHICS AND DISSEMINATION: We are an Autistic-led team that adopts a social model of disability. However, this study raises ethical issues relating to sensitive topics and marginalised populations. Accordingly, we have robust procedures in place to assess capacity to ensure informed consent and to allow participants to take part without opting into data sharing. Ethical approval has been awarded by the Swansea University School of Health and Social Care Research Ethics Committee. We will publish our findings as open access articles in peer-reviewed journals.

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Cited references
56
Total cited references integrated for this publication.
Cited references with an identified autistic author
16 / 56 (28.6%)
Cited author occurrences identified as autistic
39 / 212 (18.4%)
Among occurrences linked to AutiHub author records: 39 / 94 (41.5%). Distinct cited authors identified as autistic: 22 / 181 (12.2%).
Cited author occurrences linked to AutiHub author records
94 / 212 (44.3%)
Distinct linked cited authors: 63 / 181 (34.8%)
Linked cited-author occurrences not identified as autistic
55 / 94 (58.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 55 / 212 (25.9%). Distinct linked cited authors not identified as autistic: 41 / 63 (65.1%).
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