“A perfect storm”: Autistic experiences of menopause and midlife

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

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Brady, M. J., Jenkins, C. A., Gamble-Turner, J., Moseley, R. L., Janse van Rensburg, M. G., & Matthews, R. (2024). “A perfect storm”: Autistic experiences of menopause and midlife. Autism, 28(6), 1405-1418. https://doi.org/10.1177/13623613241244548

Publication date: 15 Apr 2024 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
6
Publication authors identified as autistic
3 / 6 (50.0%)
  1. Miranda J. Brady
  2. Christine A. Jenkins *
  3. Julie Gamble-Turner
  1. Rachel L. Moseley *
  2. Margaret G. Janse van Rensburg
  3. Rose Matthews *

Abstract

Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada ( n = 13) or the United Kingdom ( n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada ( n = 13) or the United Kingdom ( n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

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 16:12.

Cited references
70
With a DOI
64
Without a DOI, from raw bibliography text
5
25 / 70 (35.7%) cited references include at least one author identified as autistic.
References with data to complete
5 / 70 (7.1%)
References with detected author names
67 / 70 (95.7%)
Without detected author names
3
Without a structured title
5
Without a stable identifier
5
References with raw author names still to review
3
References with external metadata lookup issues
1
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
317
From DOI or external metadata
317
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
212 / 317 (66.9%) names are linked to an author already present in AutiHub. 105 / 317 (33.1%) names are not yet linked.
Names linked to a person identified as autistic
49 / 317 (15.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 49 / 212 (23.1%). Distinct people identified as autistic: 36 / 264 (13.6%).
  2. Autism Network Scotland. (2020). Autism and ageing report summary. http://www.autismnetworkscotland.org.uk/pages/ANS-Reports
    Type: Other
    Crossref
  4. J. Taffe , L. Dennerstein (2000). Retrospective self-report compared with menstrual diary data prospectively kept during the menopausal transition . Climacteric, 3(3), 183-191. Informa UK Limited.
    Type: Article DOI: 10.1080/13697130008500099 OpenAlex: https://openalex.org/W2048136325
    Crossref OpenAlex OpenCitations
  5. Sheena K. Au‐Yeung , Louise Bradley , Ashley Robertson , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). Experience of mental health diagnosis and perceived misdiagnosis in autistic, possibly autistic and non-autistic adults . Autism, 23(6), 1508-1518. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318818167 OpenAlex: https://openalex.org/W2905534692
    Crossref OpenAlex OpenCitations
  6. Tatja Hirvikoski , M. Boman , Qian Chen , B. M. D'Onofrio , E. Mittendorfer-Rutz , P. Lichtenstein et al. (2020). Individual risk and familial liability for suicide attempt and suicide in autism: a population-based study . Psychological Medicine, 50(9), 1463-1474. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291719001405 OpenAlex: https://openalex.org/W2954025049
    Crossref OpenAlex OpenCitations
  7. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    Crossref OpenAlex OpenCitations
  9. Melissa Maye , Brian A. Boyd , Frances Martínez-Pedraza , Alycia Halladay , Audrey Thurm , DAVID S. MANDELL (2022). Biases, barriers, and possible solutions: Steps towards addressing autism researchers’ under-engagement with racially, ethnically, and socioeconomically diverse communities . Journal of Autism and Developmental Disorders, 52(9), 4206. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05250-y OpenAlex: https://openalex.org/W3199775238
    Crossref OpenAlex OpenCitations
  10. Laura Foran Lewis (2016). Realizing a diagnosis of autism spectrum disorder as an adult . International Journal of Mental Health Nursing, 25(4), 346-354. Wiley.
    Type: Article DOI: 10.1111/inm.12200 OpenAlex: https://openalex.org/W2290256687
    Crossref OpenAlex OpenCitations
  12. Matthew de Broize , Kiah Evans , Andrew Whitehouse , John Wray , Valsamma Eapen , Anna Urbanowicz (2022). Exploring the Experience of Seeking an Autism Diagnosis as an Adult . Autism in Adulthood, 4(2), 130-140. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0028 OpenAlex: https://openalex.org/W4200092124
    Crossref OpenAlex OpenCitations
  13. Laura Foran Lewis (2016). Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults . Archives of Psychiatric Nursing, 30(5), 575-580. Elsevier BV.
    Type: Article DOI: 10.1016/j.apnu.2016.03.009 OpenAlex: https://openalex.org/W2326293265
    Crossref OpenAlex OpenCitations
  14. Virginia Braun , Victoria Clarke (2022). Thematic Analysis: A Practical Guide . QMiP Bulletin, 1(33), 46-50. British Psychological Society.
    Type: Article DOI: 10.53841/bpsqmip.2022.1.33.46 OpenAlex: https://openalex.org/W4315749638
    Crossref OpenAlex
  15. Elizabeth O'Nions , Irene Petersen , Joshua E.J. Buckman , Rebecca A. Charlton , Claudia Cooper , Anne Corbett et al. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data . The Lancet Regional Health - Europe, 29, 100626. Elsevier BV.
    Type: Article DOI: 10.1016/j.lanepe.2023.100626 OpenAlex: https://openalex.org/W4362579857
    Crossref OpenAlex OpenCitations
  17. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-03878-x OpenAlex: https://openalex.org/W2909219349
    Crossref OpenAlex OpenCitations
  18. Elizabeth Pellicano , Melanie Heyworth * (2023). The Foundations of Autistic Flourishing . Current Psychiatry Reports, 25(9), 419-427. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11920-023-01441-9 OpenAlex: https://openalex.org/W4385663119
    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
  19. Louise Camm-Crosbie , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality . Autism, 23(6), 1431-1441. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318816053 OpenAlex: https://openalex.org/W2902777586
    Crossref OpenAlex OpenCitations
  20. Sari L. Reisner , Renee K. Randazzo , Jaclyn M. White Hughto , Sarah Peitzmeier , L. Zachary DuBois , Dana J. Pardee et al. (2018). Sensitive Health Topics With Underserved Patient Populations: Methodological Considerations for Online Focus Group Discussions . Qualitative Health Research, 28(10), 1658-1673. SAGE Publications.
    Type: Article DOI: 10.1177/1049732317705355 OpenAlex: https://openalex.org/W2610206997
    Crossref OpenAlex OpenCitations
  21. M. Ariel Cascio , Jonathan Weiss , Éric Racine (2021). Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature . Review Journal of Autism and Developmental Disorders, 8(1), 22-36. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00204-z OpenAlex: https://openalex.org/W3025970378
    Crossref OpenAlex OpenCitations
  23. Silvana Unigwe , Carole Buckley , Laura Crane , Lorcan Kenny , Anna Remington , Elizabeth Pellicano (2017). GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study . British Journal of General Practice, 67(659), e445-e452. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgp17x690449 OpenAlex: https://openalex.org/W2614102167
    Crossref OpenAlex OpenCitations
  24. Sarah Cassidy , Louise Bradley , Heather Cogger-Ward , Jacqui Rodgers (2021). Development and validation of the suicidal behaviours questionnaire - autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults . Molecular Autism, 12(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-021-00449-3 OpenAlex: https://openalex.org/W3167453398
    Crossref OpenAlex OpenCitations
  25. Isobel Moore , Gareth Morgan , Alice Welham , Ginny Russell (2022). The intersection of autism and gender in the negotiation of identity: A systematic review and metasynthesis . Feminism & Psychology, 32(4), 421-442. SAGE Publications.
    Type: Article DOI: 10.1177/09593535221074806 OpenAlex: https://openalex.org/W4213344923
    Crossref OpenAlex OpenCitations
  26. S. M. J. Heijnen-Kohl , R. M. Kok , R. M. H. J. Wilting , G. Rossi , S. P. J. van Alphen (2017). Screening of Autism Spectrum Disorders in Geriatric Psychiatry . Journal of Autism and Developmental Disorders, 47(9), 2679-2689. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3185-2 OpenAlex: https://openalex.org/W2624596677
    Crossref OpenAlex OpenCitations
  27. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people . Review Journal of Autism and Developmental Disorders, 9(3), 386. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00263-w OpenAlex: https://openalex.org/W3163025874
    Crossref OpenAlex OpenCitations
  28. Will Mandy (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8), 1879-1881. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319878559 OpenAlex: https://openalex.org/W2975468007
    Crossref OpenAlex OpenCitations
  29. Brenna Maddox , Valerie L. Gaus (2019). Community Mental Health Services for Autistic Adults: Good News and Bad News . Autism in Adulthood, 1(1), 15-19. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0006 OpenAlex: https://openalex.org/W2802972396
    Crossref OpenAlex OpenCitations
  30. Ousseny Zerbo , Yinge Qian , Thomas Ray , Steve Sidney , Steve Rich , Maria L Massolo et al. (2019). Health Care Service Utilization and Cost Among Adults with Autism Spectrum Disorders in a U.S. Integrated Health Care System . Autism in Adulthood, 1(1), 27-36. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0004 OpenAlex: https://openalex.org/W2802980590
    Crossref OpenAlex OpenCitations
  39. Georgia Lockwood Estrin , Victoria Milner , Debbie Spain , Francesca Happé , Emma Colvert (2021). Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review . Review Journal of Autism and Developmental Disorders, 8(4), 454-470. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00225-8 OpenAlex: https://openalex.org/W3095823263
    Crossref OpenAlex OpenCitations
  40. Hannah Gellini , Magda Marczak (2024). “I Always Knew I Was Different”: Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood—a Meta-Ethnographic Systematic Review . Review Journal of Autism and Developmental Disorders, 11(3), 620-639. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-023-00356-8 OpenAlex: https://openalex.org/W4321435731
    Crossref OpenAlex OpenCitations
  41. Anne V. Kirby , Amanda V. Bakian , Yue Zhang , Deborah A. Bilder , Brooks Keeshin , Hilary Coon (2019). A 20‐year study of suicide death in a statewide autism population . Autism Research, 12(4), 658-666. Wiley.
    Type: Article DOI: 10.1002/aur.2076 OpenAlex: https://openalex.org/W2911505910
    Crossref OpenAlex OpenCitations
  42. Gould J. (2011). bibr18-13623613241244548 Good Autism Practice (GAP), 12(1), 34.
    Type: Other
    Crossref
  43. Ashleigh Hillier , Nicholas Gallop , Eva Mendes , Dylan Tellez , Abigail Buckingham , Afreen Nizami et al. (2020). LGBTQ + and autism spectrum disorder: Experiences and challenges . International Journal of Transgender Health, 21(1), 98-110. Informa UK Limited.
    Type: Article DOI: 10.1080/15532739.2019.1594484 OpenAlex: https://openalex.org/W2941421950
    Crossref OpenAlex OpenCitations
  44. Gowen E. (2019). bibr19-13623613241244548 Autism Policy & Practice, 2(1), 29.
    Type: Other
    Crossref
  47. Gary Yu Hin Lam , Sujay Sabnis , Maria Migueliz Valcarlos , Jennifer R. Wolgemuth (2021). A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults . Autism in Adulthood, 3(1), 61-71. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0053 OpenAlex: https://openalex.org/W3129551381
    Crossref OpenAlex OpenCitations
  48. Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood . Autism, 24(1), 135. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319853442 OpenAlex: https://openalex.org/W2947577397
    Crossref OpenAlex OpenCitations
  49. Annabeth P Groenman , Carolien Torenvliet , Tulsi A Radhoe , Joost A Agelink van Rentergem , Hilde M. Geurts (2022). Menstruation and menopause in autistic adults: Periods of importance? Autism, 26(6), 1563-1572. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211059721 OpenAlex: https://openalex.org/W3166746716
    Crossref OpenAlex OpenCitations
  50. Miriam Harmens , Felicity Sedgewick , Hannah Hobson (2022). Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being . Women's Health, 18, 477. SAGE Publications.
    Type: Article DOI: 10.1177/17455057221137477 OpenAlex: https://openalex.org/W4309363025
    Crossref OpenAlex OpenCitations
  51. Sarah Murphy , Rebecca L. Flower , Rachel Jellett (2023). Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder . Autism, 27(3), 808-821. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221117911 OpenAlex: https://openalex.org/W4292179992
    Crossref OpenAlex OpenCitations
  52. Emma Gowen , Rachel Taylor , Thomas Bleazard , Anat Greenstein , Peter Baimbridge * , Daniel Poole (2019). Guidelines for conducting research studies with the autism community . Autism Policy Pract., 2(1), 29.
    Type: Article OpenAlex: https://openalex.org/W2987130266
    OpenAlex
  54. Jane Ussher , Alexandra Hawkey , Janette Perz (2021). Myths and Misconceptions: . In Musings on Perimenopause and Menopause (pp. 39-54). Demeter Press.
    Type: Book chapter DOI: 10.2307/j.ctv1kz4g9t.7 OpenAlex: https://openalex.org/W4240823324
    Crossref OpenAlex OpenCitations
  55. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2022). Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia . Journal of Autism and Developmental Disorders, 52(7), 2984-2996. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05169-4 OpenAlex: https://openalex.org/W3178785782
    Crossref OpenAlex OpenCitations
  57. Marianna Karavidas , Richard de Visser (2022). “It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions . Journal of Autism and Developmental Disorders, 52(3), 1143-1155. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05010-y OpenAlex: https://openalex.org/W3154308695
    Crossref OpenAlex OpenCitations
  58. Eric Rubenstein , Sarah Furnier (2021). #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online . Autism in Adulthood, 3(2), 120-128. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0031 OpenAlex: https://openalex.org/W3102111285
    Crossref OpenAlex OpenCitations
  59. Priscilla Samuel , Rui Ying Yew , Merrilyn Hooley , Martha Hickey , Mark A. Stokes (2022). Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review . Archives of Gynecology and Obstetrics, 305(2), 299-311. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00404-021-06109-4 OpenAlex: https://openalex.org/W3165860750
    Crossref OpenAlex OpenCitations
  61. Cameron A Maitland , Sinead Rhodes , Anne O’Hare , Mary E. Stewart (2021). Social identities and mental well-being in autistic adults . Autism, 25(6), 1771-1783. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211004328 OpenAlex: https://openalex.org/W3160089913
    Crossref OpenAlex OpenCitations
  63. Ged Williams , Anastasia Gunn , Amy Sweeny (2021). Nursing in the time of COVID-19: exploring nurse preparedness early in a global pandemic . Australian Journal of Advanced Nursing, 38(3). Australian Nursing and Midwifery Federation.
    Type: Article DOI: 10.37464/2020.383.238 OpenAlex: https://openalex.org/W3194072319
    Crossref OpenAlex OpenCitations
  66. Miriam I. Martini , Ralf Kuja-Halkola , Agnieszka Butwicka , Ebba Du Rietz , Brian M. D’Onofrio , Francesca Happé et al. (2022). Sex Differences in Mental Health Problems and Psychiatric Hospitalization in Autistic Young Adults . JAMA Psychiatry, 79(12), 1188. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapsychiatry.2022.3475 OpenAlex: https://openalex.org/W4307339206
    Crossref OpenAlex OpenCitations
  68. (n.d.). National Health Service. (2017, October 23). Hormone replacement therapy (HRT). https://www.nhs.uk/conditions/hormone-replacement-therapy-hrt/
    Type: Other
    Crossref
  69. (n.d.). National Institute for Health and Care Excellence. (2015, 12 November). Menopause: Diagnosis and Management. https://www.nice.org.uk/guidance/ng23
    Type: Other
    Crossref
  70. Natalie Yau , Sonia Anderson , Ian C. Smith (2023). How is psychological wellbeing experienced by autistic women? Challenges and protective factors: A meta-synthesis . Research in Autism Spectrum Disorders, 102, 102101. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2022.102101 OpenAlex: https://openalex.org/W4317535181
    Crossref OpenAlex OpenCitations