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

This publication is included in the Autistic Autism Scholarship Project. nine authors of this publication are identified as autistic in the project.

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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
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
17
Publication authors identified as autistic
9 / 17 (52.9%)
  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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 11:54.

Cited references
56
With a DOI
50
Without a DOI, from raw bibliography text
5
18 / 56 (32.1%) cited references include at least one author identified as autistic.
References with data to complete
5 / 56 (8.9%)
References with detected author names
51 / 56 (91.1%)
Without detected author names
5
Without a structured title
5
Without a stable identifier
5
References with raw author names still to review
5
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
212
From DOI or external metadata
212
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
10
102 / 212 (48.1%) names are linked to an author already present in AutiHub. 110 / 212 (51.9%) names are not yet linked.
Names linked to a person identified as autistic
47 / 212 (22.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 47 / 102 (46.1%). Distinct people identified as autistic: 28 / 180 (15.6%).
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