Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing

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Visser, R. d., Moseley, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint, C., Freeman, E., & Karavidas, M. (2024). Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing. Autism, 29(4), 934-944. https://doi.org/10.1177/13623613241290628

Publication date: 15 Oct 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Richard de Visser
  2. Rachel Moseley *
  3. Julie Gamble-Turner
  4. Laura Hull
  5. Felicity Sedgewick
  1. Charlotte Featherstone
  2. Chella Quint
  3. Eloise Freeman
  4. Marianna Karavidas

Abstract

Autism can make menstruation and menopause and other aspects of reproductive and sexual health (RSH) more difficult. However, healthcare professionals (HCPs) often fail to provide autism-aware care, and often lack the skills or confidence to discuss RSH with patients. This study explored whether autistic people experience particular difficulties and have unmet needs when seeking RSH care. Online surveys consisting of forced-choice items and free-text boxes were completed by 136 autistic adults in the United Kingdom. Quantitative data were analysed using standard parametric and non-parametric tests. Qualitative data underwent thematic analysis. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH. The quantitative data and qualitative analysis revealed that respondents felt: (a) uncomfortable discussing menstrual issues, menopause and sexual wellbeing; (b) that HCPs rarely accommodate their sensory needs and communication preferences; and (c) that HCPs rarely demonstrated awareness of how autism can affect RSH. This novel study highlighted widespread unmet needs for appropriate RSH care for autistic people. Effort is required to enhance HCPs' ability to provide autism-aware care for RSH. The findings could inform the development of resources and training to improve healthcare for autistic people.Lay abstractAutistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people's experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs' knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.

Bibliography cited by this reference

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
39
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 39 (20.5%)
Cited author occurrences identified as autistic
18 / 158 (11.4%)
Among occurrences linked to AutiHub author records: 18 / 82 (22.0%). Distinct cited authors identified as autistic: 16 / 149 (10.7%).
Cited author occurrences linked to AutiHub author records
82 / 158 (51.9%)
Distinct linked cited authors: 73 / 149 (49.0%)
Linked cited-author occurrences not identified as autistic
64 / 82 (78.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 64 / 158 (40.5%). Distinct linked cited authors not identified as autistic: 57 / 73 (78.1%).
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