'A perfect storm': Autistic experiences of menopause and midlife

Added on 10/11/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Miranda Brady , Christine Jenkins * , Julie Gamble-Turner , Rachel Moseley * , Margaret Janse van Rensburg , Rose Matthews *
'A perfect storm': Autistic experiences of menopause and midlife published in the journal "Autism" n°28, vol.6, 14 pages , doi: 10.1177/13623613241244548

*Three co-authors had publicly identified as autistic. [Learn more about this mention]

=> Unrestricted access and free

Summary/Presentation

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.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • Autism Network Scotland (2020). "Autism and ageing report summary". (Source)

  • S. Bargiela, R. Steward*, W. Mandy (2016). "The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype". Journal of Autism and Developmental Disorders, 46(10), doi:10.1007/s10803-016-2872-8

  • V. Braun, V. Clarke (2021). "Thematic analysis: A practical guide". Sage.

  • E. Cage, Z. Troxell-Whitman (2019). "Understanding the reasons, contexts and costs of camouflaging for autistic adults". Journal of Autism and Developmental Disorders, 49(5), doi:10.1007/s10803-018-03878-x

  • L. Camm-Crosbie, L. Bradley, R. Shaw, S. Baron-Cohen, S. 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), doi:10.1177/1362361318816053

  • M. A. Cascio, J. A. Weiss, E. 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), doi:10.1007/s40489-020-00204-z

  • S. A. Cassidy, L. Bradley, H. Cogger-Ward, J. 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), doi:10.1186/s13229-021-00449-3

  • K. Corden, R. Brewer, E. 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, doi:10.1007/s40489-021-00263-w

  • M. de Broize, K. Evans, A. J. O. Whitehouse, J. Wray, V. Eapen, A. Urbanowicz (2022). "Exploring the experience of seeking an autism diagnosis as an adult". Autism in Adulthood, 4(2), doi:10.1089/aut.2021.0028

  • H. Gellini, M. Marczak (2023). "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. doi:10.1007/s40489-023-00356-8

  • J. Gould, J. Ashton-Smith (2011). "Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum". Good Autism Practice (GAP), 12(1), 34–41.

  • E. Gowen, R. Taylor, T. Bleazard, A. Greenstein, P. Baimbridge, D. Poole (2019). "Guidelines for conducting research studies with the autism community". Autism Policy & Practice, 2(1), 29–45.

  • S. Grant, S. Norton, R. F. Weiland, A. M. Scheeren, S. Begeer, R. A. Hoekstra (2022). "Autism and chronic ill health: An observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults". Molecular Autism, 13(1), doi:10.1186/s13229-022-00486-6

  • A. P. Groenman, C. Torenvliet, T. A. Radhoe, J. A. Agelink van Rentergem, H. M. Geurts (2021). "Menstruation and menopause in autistic adults: Periods of importance?" Autism, 26, doi:10.1177/13623613211059721

  • M. Harmens, F. Sedgewick, H. Hobson (2022). "Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being". Women’s Health, 18, doi:10.1177/17455057221137477

  • C. Harrop, B. Tomaszewski, O. Putnam, C. Klein, E. Lamarche, L. Klinger (2023). "Are the diagnostic rates of autistic females increasing? An examination of state-wide trends". The Journal of Child Psychology and Psychiatry. Advance online publication. doi:10.1111/jcpp.13939

  • 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), doi:10.1007/s10803-017-3185-2

  • A. Hillier, N. Gallop, E. Mendes, D. Tellez, A. Buckingham, A. Nizami, D. OToole (2020). "LGBTQ+ and autism spectrum disorder: Experiences and challenges". International Journal of Transgender Health, 21(1), doi:10.1080/15532739.2019.1594484

  • T. Hirvikoski, M. Boman, Q. Chen, B. M. D’Onofrio, E. Mittendorfer-Rutz, P. Lichtenstein, S. Bölte, H. Larsson (2020). "Individual risk and familial liability for suicide attempt and suicide in autism: A population-based study". Psychological Medicine, 50(9), doi:10.1017/s0033291719001405

  • M. G. Janse van Rensburg, C. Weaver, C. Jenkins*, M. Banister, E. King, S. Bell, Ottawa Adult Autism Initiative (2022). "Using an advocacy practicum to establish a framework for virtual community consultations in the Ottawa adult autism community". In J. L. Drolet, G. Charles, S. M. McConnell, M. Bogo (Eds.), "Transforming social work field education". University of Calgary Press. (Source)

  • M. Karavidas, R. O. 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, doi:10.1007/s10803-021-05010-y

  • A. V. Kirby, A. V. Bakian, Y. Zhang, D. A. Bilder, B. R. Keeshin, H. Coon (2019). "A 20-year study of suicide death in a statewide autism population". Autism Research, 12(4), doi:10.1002/aur.2076

  • M. C. Lai, S. Baron-Cohen (2015). "Identifying the lost generation of adults with autism spectrum conditions". The Lancet Psychiatry, 2(11), 1013–1027.

  • G. Y. H. Lam, S. Sabnis, M. Migueliz Valcarlos, J. R. Wolgemuth (2021). "A critical review of academic literature constructing well-being in autistic adults". Autism in Adulthood, 3(1), doi:10.1089/aut.2020.0053

  • L. F. Lewis (2016a). "Exploring the experience of self-diagnosis of autism spectrum disorder in adults". Archives of Psychiatric Nursing, 30(5), doi:10.1016/j.apnu.2016.03.009

  • L. F. Lewis (2016b). "Realizing a diagnosis of autism spectrum disorder as an adult". International Journal of Mental Health Nursing, 25(4), doi:10.1111/inm.12200

  • S. Lipinski*, K. Boegl, E. S. Blanke, U. Suenkel, I. Dziobek (2022). "A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum". Autism, 26(6), doi:10.1177/13623613211057973

  • G. Lockwood Estrin, V. Milner, D. Spain, F. Happé, E. Colvert (2021). "Barriers to autism spectrum disorder diagnosis for young women and girls: A systematic review". Review Journal of Autism and Developmental Disorders, 8, doi:10.1007/s40489-020-00225-8

  • B. B. Maddox, V. L. Gaus (2019). "Community mental health services for autistic adults: Good news and bad news". Autism in Adulthood, 1(1), doi:10.1089/aut.2018.0006

  • C. A. Maitland, S. Rhodes, A. O’Hare, M. E. Stewart (2021). "Social identities and mental well-being in autistic adults". Autism: The International Journal of Research and Practice, 25(6), doi:10.1177/13623613211004328

  • K. M. Malone, J. N. Pearson, K. N. Palazzo, L. D. Manns, A. Q. Rivera, D. L. Mason Martin (2022). "The scholarly neglect of black autistic adults in autism research". Autism in Adulthood, 4(4), doi:10.1089/aut.2021.0086

  • M. I. Martini, R. Kuja-Halkola, A. Butwicka, E. Du Rietz, B. M. D’Onofrio, F. Happé, A. Kanina, H. Larsson, S. Lundström, J. Martin, M. A. Rosenqvist, P. Lichtenstein, M. J. Taylor (2022). "Sex differences in mental health problems and psychiatric hospitalization in autistic young adults". JAMA Psychiatry, 79(12), doi:10.1001/jamapsychiatry.2022.3475

  • D. Mason, B. Ingham, H. Birtles, C. Michael, C. Scarlett, I. A. James, T. Brown, M. Woodbury-Smith, C. Wilson, T. Finch, J. R. Parr (2021). "How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians". Autism, 25(3), doi:10.1177/1362361321993709

  • D. Mason, B. Ingham, A. Urbanowicz, C. Michael, H. Birtles, M. Woodbury-Smith, T. Brown, I. James, C. Scarlett, C. Nicolaidis, J. R. Parr (2019). "A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults". Journal of Autism and Developmental Disorders, 49(8), doi:10.1007/s10803-019-04049-2

  • D. Mason, G. R. Stewart, S. J. Capp, F. Happé (2022). "Older age autism research: A rapidly growing field, but still a long way to go". Autism in Adulthood, 4(2), doi:10.1089/aut.2021.0041

  • M. Maye, B. A. Boyd, F. Martínez-Pedraza, A. Halladay, A. Thurm, D. 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), doi:10.1007/s10803-021-05250-y

  • R. L. Moseley*, T. Druce, J. M. Turner-Cobb (2020). "'When my autism broke': A qualitative study spotlighting autistic voices on menopause". Autism, 24(6), doi:10.1177/1362361319901184

  • R. L. Moseley*, T. Druce, J. M. Turner-Cobb (2021). "Autism research is 'all about the blokes and the kids': Autistic women breaking the silence on menopause". British Journal of Health Psychology, 26(3), doi:10.1111/bjhp.12477

  • National Health Service (2017, October 23). "Hormone replacement therapy (HRT)". (Source)

  • National Institute for Health and Care Excellence (2015, November 12). "Menopause: Diagnosis and Management". (Source)

  • E. O’Nions, I. Petersen, J. E. J. Buckman, R. Charlton, C. Cooper, A. Corbett, F. Happé, J. Manthorpe, M. Richards, R. Saunders, C. Zanker, W. Mandy, J. Stotta (2023). "Autism in England: Assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data". The Lancet Regional Health – Europe, 29, doi:10.1016/j.rasd.2022.102101

  • E.-M. Rødgaard, K. Jensen, K. W. Miskowiak, L. Mottron (2022). "Representativeness of autistic samples in studies recruiting through social media". Autism Research: Official Journal of the International Society for Autism Research, 15(8), doi:10.1002/aur.2777

  • S. L. Reisner, R. K. Randazzo, J. M. White Hughto, S. Peitzmeier, L. Z. DuBois, D. J. Pardee, E. Marrow, S. McLean, J. Potter (2018). "Sensitive health topics with underserved patient populations: Methodological considerations for online focus group discussions". Qualitative Health Research, 28(10), doi:10.1177/1049732317705355

  • E. Rubenstein, S. Furnier (2021). "#Bias: The opportunities and challenges of surveys that recruit and collect data of autistic adults online". Autism in Adulthood: Challenges and Management, 3(2), doi:10.1089/aut.2020.0031

  • P. Samuel, R. Y. Yew, M. Hooley, M. Hickey, M. A. Stokes (2022). "Sensory challenges experienced by autistic women during pregnancy and childbirth: A systematic review". Archives of Gynecology and Obstetrics, 305(2), doi:10.1007/s00404-021-06109-4

  • J. Taffe, L. Dennerstein (2000). "Retrospective self-report compared with menstrual diary data prospectively kept during the menopausal transition". Climacteric, 3(3), doi:10.1080/13697130008500099

  • S. Unigwe, C. Buckley, L. Crane, L. Kenny, A. Remington, E. Pellicano (2017). "GPs’ confidence in caring for their patients on the autism spectrum: An online self-report study". The British Journal of General Practice: The Journal of the Royal College of General Practitioners, 67(659), doi:10.3399/bjgp17x690449

  • J. Ussher, A. Hawkey, J. Perz (2021). "Myths and misconceptions". In H. Dillaway, L. Wershler (Eds.), "Musings on perimenopause and menopause". Demeter Press; JSTOR. doi:10.2307/j.ctv1kz4g9t.7

  • G. Williams*, A. Gunn, A. Sweeny (2021). "Nursing in the time of COVID-19: Exploring nurse preparedness early in a global pandemic". Australian Journal of Advanced Nursing, 38(3), doi:10.37464/2020.383.238

  • N. Yau, S. Anderson, I. C. Smith (2023). "How is psychological wellbeing experienced by autistic women? Challenges and protective factors: A meta-synthesis". Research in Autism Spectrum Disorders, 102, doi:10.1016/j.rasd.2022.102101

  • O. Zerbo, Y. Qian, T. Ray, S. Sidney, S. Rich, M. Massolo, L. A. Croen (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), doi:10.1089/aut.2018.0004

This resource has not (yet) been cited on Bluesky.


 
Summarize/Comment on/Translate this reference?