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“Living in a world that’s not about us” Rachel Groves et al. 

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“Living in a world that’s not about us” Rachel Groves et al. 

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Making research more ethnically inclusive  

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Making research more ethnically inclusive  

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Scope

The INCLUDE Ethnicity Framework aims to help trial teams think specifically about which ethnic groups should be included in their trial for its results to be widely applicable, and what challenges there may be to making this possible. Having identified potential challenges, the trial team can then consider ways to reduce those challenges. For this to work, the Framework needs to be used at the trial design stage before funding is in place. Ethnicity is a complex matter that can influence personal identity and group social relations. The specific ethnic groups that a trial should involve depends on many things, including the geographic location of the trial, and the disease or condition targeted among others.

Why is it important for trials to be ethnically diverse?

Trial teams need to do everything possible to make their trial relevant to the people for whom the results are intended to apply (often patients) and those expected to apply them (often healthcare professionals). Ensuring that a trial is designed so that the people in the trial reflect those who might benefit from the results, or be spared harms, is key to the potential benefits of the trial reaching all they should. However, this does not always happen due to narrow eligibility criteria, reliance on recruitment strategies that work only for some, assuming everyone has the same trust in health research, and a perception that some groups are more difficult or costly to recruit. Ethnic minority groups are often under-represented in trials despite being 1 in 8 of the UK population and frequently having most to gain clinically.

The INCLUDE initiative

INCLUDE is an initiative from the UK's National Institute for Health Research (NIHR) that aims to improve trial delivery for under-served groups. This will improve the applicability of the trial results and be in line with Principle 13 of the Declaration of Helsinki ('Groups that are underrepresented in medical research should be provided appropriate access to participation in research.')

Read a blog on INCLUDE- The forgotten, the ignored and the under-served - trials cannot continue to fail large parts of society.

An article describing how the INCLUDE Ethnicity Framework was developed has been published in the journal Trials. An evaluation of the Framework has been published in Trials too.

Finally, our 2022 Trial Forge Guidance 3 gives practical help on how to recruit and retain participants from ethnic minority backgrounds.

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The INCLUDE Ethnicity Framework - Trial Forge

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The INCLUDE Ethnicity Framework aims to help trial teams think specifically about which ethnic groups should be included in their trial for its results to be widely applicable, and what challenges there may be to making this possible. Having identified potential challenges, the trial team can then consider ways to reduce those challenges.

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Research by Dr. Rachel Moseley

The warmest of welcomes to my page!

I am a scientist whose research focuses on understanding the challenges faced by autistic people, primarily around mental health.

I am passionate about conducting research which improves lives and/or reduces suffering. Often, research does this by contributing to a body of knowledge which is drawn on by policy-makers, practitioners, and professionals from different spheres. Other times, research may improve someone's life by making them feel seen, understood and less alone.

But in order for research to have any positive impact at all, it needs to be accessible - especially to the people it aims to help. On this site you will find video and plain English summaries of all my published, peer-reviewed research. You'll also find a repository of autism-related resources and links - the best books, articles, and helpful online spaces that I've come across in my work in this sector.

Being a researcher is an immense privilege. It comes with huge responsibility to the people who participated in these studies, the people the research suggests to be 'about' and for. We owe it to this audience to constantly strive for inclusive practice, recognise our mistakes and keep learning so that we can do the best work possible. This site will also be a place for me to engage in that kind of critical reflection around my work.

I deeply hope that you will find the research and resources meaningful, interesting and valuable. Thank you so much for reading.

​

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Autistic Autism Research | Science On The Spectrum

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I am Dr Rachel Moseley, a scientist whose research centres on mental health in autistic adults. 'Science on the Spectrum' contains written and video summaries of my research for non-scientific and/or neurodivergent audiences; you'll also find links to further autism-related resources.

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Bridging the Silos: Autistic Menopause Study 

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Bridging the Silos: Autistic Menopause Study 

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Autistic identity: A systematic review of quantitative research. Jade Davies et al. 

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Autistic identity: A systematic review of quantitative research. Jade Davies et al. 

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"A perfect storm": Autistic experiences of menopause and mid-life. Miranda Brady et al.  

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"A perfect storm": Autistic experiences of menopause and mid-life. Miranda Brady et al.  

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Autism from menstruation to menopause. Longitudinal study. Aimee Grant et al. 

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Autism from menstruation to menopause. Longitudinal study. Aimee Grant et al. 

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About Us — Autism from Menstruation to Menopause (autismmenstruationtomenopause.com)

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Cartoon images of members of the research team 

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Living with autism without knowing. Stephen Stagg and Hannah Belcher. 

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Living with autism without knowing. Stephen Stagg and Hannah Belcher. 

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The night I lost my freedom, and got it back again. Rose Matthews. (Preprint of Autism in Adulthood publication)

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The night I lost my freedom, and got it back again. Rose Matthews. (Preprint of Autism in Adulthood publication)

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The night I lost my freedom and got it back again

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An account by a late diagnosed autistic person of being detained by the police overnight after a meltdown, prior to having been assessed for autism. This personal narrative explores barriers to being recognised as autistic later in life, and intersectional issues that increase risk for some autistic individuals.

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"When my autism broke": A qualitative study spotlighting autistic voices on menopause. Rachel Moseley et al. 

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"When my autism broke": A qualitative study spotlighting autistic voices on menopause. Rachel Moseley et al. 

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A conceptual analysis of autistic masking. Amy Pearson and Kieran Rose. 

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A conceptual analysis of autistic masking. Amy Pearson and Kieran Rose. 

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For full functionality of this site it is necessary to enable JavaScript. Here are instructions for enabling JavaScript in your web browser.

Abstract

Research into autistic masking has recently started to gain traction, showing that masking is related to late/missed diagnosis, and a selection of negative outcomes including burnout and suicidality in autistic people. Though masking is described as a social strategy, the application of social theory to understanding masking is sparse. In this analysis we review literature so far in light of the historical deficit focussed narrative of autism and make suggestions for how we can use social psychological theory to better understand what masking is. We discuss the role of stigma on identity expression, and how social theory can be applied to understanding which aspects of contextual identity shifts are harmful to autistic people. We also discuss issues around a gendered narrative of masking, including the exclusion of non-binary autistic people, and those whose autistic characteristics do not fit within a binary narrative. Finally, we make suggestions for future research, including the use of a multidimensional conceptualisation of masking that takes into account the role of internal and external aspects of masking, in interaction with the role of time as a developmental factor.

License

CC0 1.0 Universal

Disciplines

Psychology Social and Behavioral Sciences Social Psychology

Original publication date

2020-11-21

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A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice

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Research into autistic masking has recently started to gain traction, showing that masking is related to late/missed diagnosis, and a selection of negative outcomes including burnout and suicidality in autistic people. Though masking is described as a social strategy, the application of social theory to understanding masking is sparse.

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Occurrences and predictors of lifetime suicidality... in autistic adults. Jael van Bentum et al.  

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Occurrences and predictors of lifetime suicidality... in autistic adults. Jael van Bentum et al.  

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Stepping into who I fully am: A creative exploration of Autistic menopause. Rose Matthews et al 

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Stepping into who I fully am: A creative exploration of Autistic menopause. Rose Matthews et al 

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Stepping into Who I Fully Am: A Creative Exploration of Autistic Menopause

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Research suggests that perimenopause can compound existing struggles for some Autistic people, with potentially catastrophic consequences. Barriers to self-expression due to communication differences are also well-documented. Acknowledging this, our neurodiverse research team invited creative submissions themed around Autistic experiences of menopause, receiving works from six Autistic participants including paintings, poetry, and graphic works. Engaging with the six creative submissions, Autistic Community Researchers on our team produced reflexive, polytextual response works. Creative exploration of Autistic menopause encouraged emotional catharsis, self-understanding, and activism/artivism. Autistic Community Researchers noted transcendent, almost “magical” dimensions of connecting with other Autistic people’s lived experiences. Our creative emancipatory approach enabled Autistic, multimedia responses which traditional research methods would not have elicited. To our knowledge, no other studies to date have used arts-based research to explore Autistic people’s experiences of menopause and inclusive research practices.

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Autistic experiences of menopause: Curated collection of curiosities. Rose Matthews. 

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Autistic experiences of menopause: Curated collection of curiosities. Rose Matthews. 

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I recently came across an old cryalog that I kept during the month of April in 1998. 'C' stands for the fact that I cried, the number of C's represents the number of times I cried, and 'NC' indicates that I did not cry on that day.

The saddest thing is, I now find the cryalog very funny, and laugh when I look at it.

But when I kept it, I wanted to die. Literally, to kill myself - with an iron, a steaming hot turned-on iron.

This was not depression, this was menopause.

Reading this, or any other thing ever written about menopause, will not help you in any way, for how you respond to menopause is not up to you, it is up to your body, and though you believe now that you can control your body (such is your strength after all that yoga) you cannot.

Of course, you may be lucky: I know a woman who experienced menopause in no way whatsoever except that one day she realized it had been a couple of years since her last period, which was indeed her last.

You hear a lot about hot flashes, but hot flashes are the least of it, totally inconsequential in every way: you get as hot as a steam iron at odd moments - so what? The media would have you believe that hot flashes are the single most significant symptom toward which you should direct your attention and businesses their products, but when I think of menopause I don't think of hot flashes; I am not here to talk about hot flashes.

Except to tell you that they do not cease even after you have completely gone through menopause; they become a part of your life the way periods were, they are periodic and, after a while, you stop talking about them.

No, I am here to tell you that one woman, a woman who is the most undepressed, optimistic, upbeat person I know, awoke one morning and walked straight into her kitchen and grabbed a butcher's knife (she is a world class cook) with the intent of driving it through her heart. That was menopause.

If you take the time to peruse the annals of any nineteenth century asylum, as I have, you will discover that the 'cause of admittance' for all women over forty is listed as 'change of life'.

In other words, you go crazy. When you go crazy, you don't have the slightest inclination to read anything Foucault ever wrote about culture and madness.

It may be that you recall your thirteenth year on earth. Menopause is adolescence all over again, only you are an adult and have to go out into the world every day in ways you did not have to when you were in school, where you were surrounded by other adolescents, safe, or relatively so, in the asylum of junior high.

You are a thirteen-year-old with the experience and daily life of a forty-five-year-old.

You have on some days the desire to fuck a tree, or a dog, whichever is closest.

You have the desire to leave your husband or lover or partner, whatever.

No matter how stable or loving the arrangement, you want out.

You may decide to take up an insane and hopeless cause. You may decide to walk to Canada, or that it is high time you begin to collect old blue china, three thousand pieces of which will leave you bankrupt. Suddenly the solution to all problems lies in selling your grandmother's gold watch or drinking your body weight in cider vinegar. A kind of wild forest blood runs in your veins.

This, and other behaviors, will horrify you. You will seek medical help because you are intelligent, and none of the help will help.

You will feel as if your life is over and you will be absolutely right about that, it is over.

No matter how attractive or unattractive you are, you have been used to having others look you over when you stood at the bus stop or at the chemist's to buy tampons. They have looked you over to assess how attractive or unattractive you are, so no matter what the case, you were looked at. Those days are over; now others look straight through you, you are completely invisible to them, you have become a ghost.

You no longer exist.

Because you no longer exist, you will do anything for attention. You may shave your head or dye your hair or wear striped stockings or scream at complete strangers. You've seen them, haven't you, the middle-aged women screaming at the attendant in the convenience store?

You are a depressed adolescent who sweats through their clothing and says terrible things to everyone, especially the people they love.

You begin to lie. You have the urge to shoplift and if you drive an automobile you have the urge to ram your car into the car in front of you.

Nothing can prepare you for this.

The one thing no one will tell you is that these feelings and this behavior will last ten years. That is, a decade of your life. Ask your doctor if this is true and she will deny it.

Then comes a day when you see a 'woman' who is buying tampons and you think of her as a girl. And she is; anyone who has periods is a girl. You know this is true and it is very funny to you.

You are a woman, the ten years have passed, you love your children, you love your lover, but there are no longer any persons on earth who can stop you from being yourself, you have put your parents in the earth, you have buried the past. Of course in the meantime you have destroyed your life and it has to be completely remade and there is a great deal of grief and regret and nostalgia and all of that, but even so you are free, free to sit on the bank and throw stones and feel thankful for the few years or one or two decades left to you in which you can be yourself, even if a great many other women ended their lives, even if the reason they ended their lives is reported as having been for reasons having nothing to do with menopause, which is thankfully behind you as you would never want to be a girl again for any reason at all, you have discovered that being invisible is the biggest secret on earth, the most wondrous gift anyone could ever have given you.

If you are young and you are reading this, perhaps you will understand the gleam in the eye of any woman who is sixty, seventy, eight, or ninety: they cannot take you seriously (sorry) for you are just a girl to them, despite your babies and shoes and lovemaking and all of that. You are just a girl playing at life.

You are just a girl on the edge of a great forest. You should be frightened but instead you are eating a lovely meal, or you are cooking one, or you are running to the florist or you are opening a box of flowers that has just arrived at your door, and none of these things are done in the great spirit that they will later be done in.

You haven't even begun. You must pause first, the way one must always pause before a great endeavor, if only to take a good breath.

Happy old age is coming on bare feet, bringing with it grace and gentle words, and ways which grim youth have never known.

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'Nothing can prepare you for this.' Mary Ruefle on menopause.

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Everything you need to embrace the change. Deborah Jermyn. 

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Everything you need to embrace the change. Deborah Jermyn. 

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Everything you need to embrace the change. Deborah Jermyn.

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The .gov means it's official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you're on a federal government site.

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

doi: 10.1016/j.jaging.2023.101114.

Affiliation

¹ School of Arts & Digital Industries, Sir David Bell Building, University of Roehampton, Roehampton Lane, London SW15 5SL, UK. Electronic address: d.jermyn@roehampton.ac.uk.

Free article

Free article

doi: 10.1016/j.jaging.2023.101114.

Affiliation

¹ School of Arts & Digital Industries, Sir David Bell Building, University of Roehampton, Roehampton Lane, London SW15 5SL, UK. Electronic address: d.jermyn@roehampton.ac.uk.

Abstract

In recent years, the UK has witnessed an unprecedented period of pronounced public cultural conversation and promotion around a newly inflected era of menopause awareness. Importantly, this 'menopausal turn', as I term it, can be identified in operation throughout multiple and intertwined cultural spaces, including education, politics, medicine, retail, publishing, journalism, and more. While this invigorated conversation might be welcomed at many levels, this article examines how it would be both naive and indeed hazardous to conflate the amplification of cultural attention to menopause and demand for greater provision of menopause support currently seen in the menopausal turn, with greater inclusivity. This shift in UK media discourse has been nowhere more apparent than in the preparedness of a significant number of high-profile women celebrities and public figures ready and willing to share their stories and lend their names to confessional menopausal disclosures of one kind or another. Adopting an intersectional feminist media studies approach, I particularly examine how understanding of menopause is being envisioned and bolstered through this celebrity prism as primarily the terrain of White, cisgendered, middle-class affluence - even aspiration at times - and insist this movement be identified and acted on by all those engaged in studying or shaping menopause in the media as a pressing matter of consequence, in order to advocate for more intersectionally-conscious accounts of menopause.

Keywords: Ageing; Celebrity; Media representation; Menopause; Whiteness.

PubMed Disclaimer

Conflict of interest statement

Declaration of Competing Interest None.

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national center for biotechnology information

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'Everything you need to embrace the change': The 'menopausal turn' in contemporary UK culture - PubMed

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In recent years, the UK has witnessed an unprecedented period of pronounced public cultural conversation and promotion around a newly inflected era of menopause awareness. Importantly, this 'menopausal turn', as I term it, can be identified in operation throughout multiple and intertwined cultural s ...

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Barriers to healthcare for autistic adults. Mary Doherty et al. (Autistic Doctors International)

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Barriers to healthcare for autistic adults. Mary Doherty et al. (Autistic Doctors International)

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Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study

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Objectives Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences.

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"Autism research is all about the blokes and the kids" Rachel Moseley et al. 

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"Autism research is all about the blokes and the kids" Rachel Moseley et al. 

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Blood, bone, crone: the menopause experience from the inside out. Karen Ross. 

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Blood, bone, crone: the menopause experience from the inside out. Karen Ross. 

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blood, bone, crone: the menopause experience from the inside out

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We are proud Autistic women. Kristy Forbes. 

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We are proud Autistic women. Kristy Forbes. 

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Menstruation and menopause in autistic adults: periods of importance? Annabeth Groenman et al.  

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Menstruation and menopause in autistic adults: periods of importance? Annabeth Groenman et al.  

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My vision is to amplify the voices of autistic women* nonbinary and autigender people and create a sense of community.
This is why I created SquarePeg - starting with the SquarePeg podcast, which launched in October 2020, the Patreon (that now includes our community chat group - new for 2024) and the THRIVE program, which began as a series of workshops in March 2022 and is now a 12-week self-study, group and 1:1 program.
It's my goal to build a resource to help other autistic adults like you find a sense of community, navigate diagnosis, discover your true self again afterwards, and imagine and create a life which fits around being autistic, rather than being at odds with it.

Lives in which we can be our true selves, without feeling we have to fit ourselves into boxes shaped by society's expectations.

*Trans women are women

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This is why I created SquarePeg - starting with the SquarePeg podcast, which launched in October 2020, the Patreon (that now includes our community chat group - new for 2024) and the THRIVE program, which began as a series of workshops in March 2022 and is now a 12-week self-study, group and 1:1 program.

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How my autistic life experience inspires me to help others. Lara Schaeffer.  

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How my autistic life experience inspires me to help others. Lara Schaeffer.  

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The Photo That Captured My Autistic Life Experience

Cracks reveal the mossy inside of the statue of a woman, embodying both the imperfections and resilience explored in this piece.

The Hidden Challenges of My Autistic Life Experience

The Late Discovery of My Autistic Life Experience

The Photo That Inspires My Autistic Life Experience

That is why I decided to use this photo to coordinate with a similarly personal aspect of my advocacy: a recent interview with Tanja Aebischer , a journalist and an autism advocate who runs Autism Stories, a platform where she interviews autistic people from different backgrounds and perspectives.

Conclusion

The Photo That Captured My Autistic Life Experience

Cracks reveal the mossy inside of the statue of a woman, embodying both the imperfections and resilience explored in this piece.

The Hidden Challenges of My Autistic Life Experience

The Late Discovery of My Autistic Life Experience

The Photo That Inspires My Autistic Life Experience

That is why I decided to use this photo to coordinate with a similarly personal aspect of my advocacy: a recent interview with , a journalist and an autism advocate who runs Autism Stories, a platform where she interviews autistic people from different backgrounds and perspectives.

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How My Autistic Life Experience Inspires Me to Help Others

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The Photo That Captured My Autistic Life ExperienceBeing an autistic individual means a life full of discovery, challenges, and wonder. But it also means a life full of struggles, misunderstandings, and isolation.

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Adjusting to recent autism diagnosis. Old lady with autism. 

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Adjusting to recent autism diagnosis. Old lady with autism. 

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a few things can make the adjustment easier

adjusting to our new understanding: 5 things that might help!

Finding out we are autistic throws "everything" we thought we knew and understood about our selves, others, our past, our nature, our lives right up until we are finally diagnosed late in our lives, into new perspective.

Suddenly learning how autism has been working within us all these years without our knowing can be stunning, disconcerting, upsetting, exciting, a huge relief and also a huge disappointment causing grief for our past self, time we now see as lost, and shaking us to the core because of new self perceptions.

The longer we have gone without knowing our diagnosis, the more there is to sort!

Here are things I have figured out that helped me through the rough days following my self identification and 3 years later professional confirmation of my autism diagnosis.

Learn as much as you can about autism: This helps with self understanding , we can figure out exactly what our neurology is doing through autism, figure out our best strengths and help support our worst weaknesses, once we understand our own neurological "wiring".

Books, blogs, online videos, articles from groups and organizations, reading studies "about" autism can help us see ourselves both as we are now and as we were in childhood, young adulthood, middle age, etc. Knowing more helps us understand all those "whys" of our lives, helps us see ways we can make our current lives better by making adjustments in the way we do things every day. Information is power we can use !

Find emotional and social support : There are many online autism support groups, they can be local or international, the culture and intent of each group will be different and you may have to try several over time to find a group that is right for you. There are groups for parents, groups for those with multiple diagnoses, groups for gender identities, groups for those with autistic parents, groups for those who do not speak, for those with interests in certain topics, etc.

Joining such a group provides support and assurance that we are not alone, that others have gone through similar struggles, had similar issues, needed certain specific explanations, and reassurance that if they have got through this, you can too!

These support groups are generally especially for problem solving and asking questions about personal struggles. They are generally private, closed groups, so you may have to sign in. sign up, agree to abide by the group rules and stay within the group guidelines. It might take several tries to find your on line home, but it is worth it!

Where else would we find insights and experience, and the combined years of wisdom got from living autistic lives to help us find solutions to our problems? If we live in a higher populated area there are also often local "in person" support groups , which again feature special focus on support, information, recreation, specific age groups or other limits and rules we will need to be aware of.

Seek counseling or therapy:: if we have emotional pain or struggles with anger, self injuring behavior, addictions, eating disorders, multiple diagnoses, destructive behaviors around food or other bad habits or if we have constant depression or anxiety. We can figure out where we can change things.

Living a life of distress and frustration, filled with misunderstandings and emotional hardships seems to be more likely than not for most adults who have made it to old age before discovering our autism.

We may have learned to cope with our struggles in many unhealthy ways. Therapy can teach us new ways to communicate, help point out things we might not have understood in our history or present lives and help us substitute healthier ways of living and "doing life".

Due to our autistic rigidity, we may not be able to see we have choices and alternatives. We may have to try several therapists before we find one we can communicate with, but they do not have to have experience with autism, only the willingness to work with us to find solutions to our day to day struggles, our trauma, or other problems that need better solutions.

If what we are doing is not helping, we can learn to do something else instead.

There is almost always a "better way" and therapists are there to help us find those ways.

Give yourself time! It has taken all our lives to get here, it will probably take some time and lots of emotional "homework" to sort it all out with our new perspective, to figure out how to make our lives better, to find new ways to "do life" with our new understanding. Your best life starts now. Take good care of yourself, keep trying, consult others who have "been there- done that" , get advice, consider options, we will find that although our basic struggles have not changed, our ability to cope, our self understanding , our new insights to others and our own personal history will begin to grow and change as we move forward to our new lives as "actually autistic".

Make a "safe place" or a haven, a nest, at home: . We need a place where we can refresh our minds and souls in safety and comfort. It can be a quiet corner anywhere, a special chair, a bedroom hideaway. a den, a place that is filled with things we can find comfort in.

We almost always need a refuge/retreat or a sheltered space where we can re charge our emotional and physical "batteries" after a hard day, an argument, a meltdown, any upset. The nature of autism makes this important for self regulation and self care. You can make mini-safe places while on the road, at the office or workplace, and find new ways to give yourself comfort and escape or rest when you need it. Try brainstorming with others in your household, group, or those online problem solving forums. The ideas that others have come up with can be so useful!

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a few things can make the adjustment easier adjusting to our new understanding: 5 things that might help! Finding out we are autistic throws "everything" we thought we knew and understood about our selves, others, our past, our nature, our lives right up until we are finally diagnosed late in our lives, into new perspective....

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My dog has just come in and jumped up on the bed to see me - I can smell the weather on her. It feels exciting to be able to tell that autumn is approaching, just by smelling my dog!

We take the same walk every day, down the track and across the field to the little piece of woodland that looks out over the meadows to the distant river and castle. I've walked this route for 20 years - either with Blaze, or with my previous dogs. I never get bored of it though, and I take such delight in how it is always a different experience. A good, solid, natural, different experience each time; a difference that is meant to be. Rather than a man-made, enforced, upsetting of the natural order, type of different experience, that makes people think I'm typically autistic and "don't like change".

I notice the tiny insects; I hear the far away birds; I smell which animals have passed by. This means I have a whole world open to me that others miss - it is like a great, exciting secret between me and the Universe. It feels special and precious, and an honour. Sometimes my interest and curiosity are stimulated, and I observe and study and wonder at the natural world. Sometimes I just let my senses take it in and I don't engage my thinking brain at all. The power of my senses gives me respite from the endless mental processing I have to do in order to function the rest of the time.

The physical power of music moves me. I can reset my dysregulated body with just one, single, repeated noise that has the power to rebalance me. I can listen to an orchestral piece and take in the enormity of it, like an overwhelming wall of sound - or I can follow the different instruments, interweaving and passing the melodies and harmonies back and for between them. No tune ever sounds the same twice. Music creates in me something that can't be captured in words. I see musical chords in colour - and when I see these colours in nature, I hear them in my soul.

My senses work differently to many people's. I can feel pain and fear from sights and sounds that others find mundane or inconsequential. This can be overwhelming - and other people frequently don't notice the extent of my suffering. But I can also become overwhelmed by the joy and beauty I discover through my senses. Sometimes I secretly smile inside because I know that I may look calm, bored, or even detached to a casual observer; but in my soul I am full of joy, I am experiencing psychedelic colours; orgasmic noise; and fragrances that cleanse and purge my body and mind.

I can heal my painful and distressing sensory experiences.

I can listen to music; I can walk; I can smell lavender to calm me, or sandalwood to help me think.

I can crunch on pickled onion crisps and allow the astringent flavour to cut through my brain fog and overwhelm - and reconnect me to the world again.

I can listen to the same glissando and allow it to lift my mood, exactly in tune with the rising pitch.

I can move my body so that I know it is me and I am in control and there is something predictable and safe that I have agency over. It makes me be "me" again - I fit back in to the world that so often overwhelms and alienates me.

I am privileged to have a sensory system that can bring me such joy and healing.

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I can experience joy and healing through my senses that feels like a secret between just me and the Universe.

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How to be a great ally to the Autistic community. Reframing Autism.   

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How to be a great ally to the Autistic community. Reframing Autism.   

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How to Be a Great Ally to the Autistic Community - Reframing Autism

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If you're here, chances are that you're wondering how you can be a great ally to the Autistic community - [...]

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Resources for women and people with ovaries at menopause. Julie Gamble-Turner and Rachel Moseley (for Autistica).   

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Resources for women and people with ovaries at menopause. Julie Gamble-Turner and Rachel Moseley (for Autistica).   

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Narrating the many autisms. Identity, agency, mattering. Anna Stenning. 

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Narrating the many autisms. Identity, agency, mattering. Anna Stenning. 

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narrating the many autisms anna stenning

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Autism is a profoundly contested idea. The focus of this book is not what autism is or what autistic people are, but rather, it grapples with the central question: what does it take for autistic people to participate in a shared world as equals with other people?

Drawing from her close reading of a range of texts and narratives, by autistic authors, filmmakers, bloggers, and academics, Anna Stenning highlights the creativity and imagination in these accounts and also considers the possibilities that emerge when the unexpected and novel aspects of experience are attended to and afforded their due space. Approaching these narrative accounts in the context of both the Anthropocene and neoliberalism, Stenning unpacks and reframes understandings about autism and identity, agency and mattering, across sections exploring autistic intelligibility, autistic sensibility, and community-oriented collaboration and care.

By moving away from the non-autistic stories about autism that have, over time, dominated public conception of the autistic experience and relationships, as well as the cognitive and psychoanalytic paradigms that have reduced autism and autistic people to a homogeneous group, the book instead reveals the multiplicity of autistic subjectivities and their subsequent understandings of well-being and vulnerability. It calls on readers to listen to what autistic people have to say about the possibilities of resistance and solidarity against intersecting currents and eddies of power, which endanger all who challenge the neoliberal conception of Life.

A stirring and meaningful departure from atomized accounts of neurological difference, Narrating the Many Autisms ponders big questions about its topic and finds clarity and meaning in the sense-making practices of autistic individuals and groups. It will appeal to scholarly readers across the fields of disability studies, the medical humanities, cultural studies, critical psychology, sociology, anthropology, and literature.

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Narrating the Many Autisms | Identity, Agency, Mattering | Anna Stenni

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Autism is a profoundly contested idea. The focus of this book is not what autism is or what autistic people are, but rather, it grapples with the central

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Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults. Seb Shaw et al (Autistic Doctors International). 

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Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults. Seb Shaw et al (Autistic Doctors International). 

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Perceptions of healthcare provision throughout the menopause in the UK. Nayra A. Martin-Key et al.  

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Perceptions of healthcare provision throughout the menopause in the UK. Nayra A. Martin-Key et al.  

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Perceptions of healthcare provision throughout the menopause in the UK. Nayra A. Martin-Key et al.

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Abstract

The UK healthcare system faces a shortage of high-quality menopausal care. The objective of this study was to understand perspectives of menopause care in the UK. An online survey was delivered. Data from 952 respondents were analysed. Descriptive statistics were calculated for quantitative data overall and per menopause stage. Thematic analysis was calculated on qualitative data. 74.47% sought help for the menopause. Oral (68.83%) and topical medication (17.21%) and lifestyle changes (17.21%) were the most common treatment approaches. Consistent integration of mental health screening into menopausal care was lacking. Open-ended data from women who reported poor care quality revealed six themes: consequences of poor care, dismissive or negative attitudes from healthcare professionals (HCPs), poor treatment management, symptom information and misattribution, poor HCP knowledge, and the need for self-advocacy. The findings underscore the importance of improving HCP knowledge, providing empathetic and supportive care, and involving women in decision-making.

Introduction

The menopause marks a substantial milestone in a woman's life, which is characterised by the halt of menstruation owing to the decline of ovarian follicular function1 (throughout the current study, we refer to a woman as anyone assigned female at birth). It tends to occur naturally between the ages of 44 and 55 years2, but can be brought on earlier due to surgical procedures, medication, or severe illness3. The perimenopause, also referred to as the menopause transition, is defined as the phase leading up to menopause and is distinguished by a decline in ovarian function, leading to less frequent menstrual cycles. The perimenopause phase can be divided into two stages: the early perimenopause stage, which is characterised by a significant change in the length of menstrual bleed or the time between periods that is not due to pregnancy or breastfeeding, stress, or a medical condition, and the late perimenopause stage, which is defined by no menstrual bleeding in three to 11 months not due to pregnancy or breastfeeding, stress, or a medical condition. The perimenopause phase is estimated to last a median of four years4.

Although every woman's experience of the menopause is unique, the symptoms that come with it and the transition leading up to it can be incredibly challenging. As many as 80% of women report difficulties during this time, with 25% rating these difficulties as severe5. Women who go through the menopause and its transition naturally may experience a range of vasomotor symptoms, such as hot flushes and night sweats, physical symptoms, including tiredness and bone and joint pain, as well as sexual symptoms, including loss of libido and vaginal dryness during intercourse. Though it has also been posited that only vasomotor symptoms are specific to the menopause, while other symptoms may be more strongly associated with socio-demographic variables6.

Of note, numerous studies have found a connection between menopausal symptoms and decreased quality of life, with a greater number of symptoms generally resulting in lower overall quality of life7,8,9,10,11,12. There is also evidence to suggest that, relative to natural menopause, women with medically induced menopause experience more severe menopausal symptoms and worse quality of life13,14. In turn, medically induced menopause has been associated with a range of long-term health consequences, including early onset cardiovascular disease, osteoporosis, dementia, and increased risk of mortality (or early death)15.

The menopause, and particularly the menopause transition, also present a period of heightened vulnerability for mental health issues16 especially depression17,18. Notably, perimenopausal women tend to report different symptoms of depression compared to premenopausal women, such as increased anger and irritability, sleep disturbances, fatigue, as well as a range of non-specific somatic complaints19. Interestingly, a systematic review involving over 10,000 menopausal women has revealed a bidirectional relationship between depressive and vasomotor symptoms20, with women experiencing moderate to severe depressive symptoms being nearly twice as likely to report vasomotor symptoms compared to those with no or mild depressive symptoms21. This suggests a potential aggravating effect of vasomotor symptoms on depressive symptoms22,23, although some propose that depression precedes hot flushes rather than being caused by them24.

Furthermore, women who have a history of depression or pre-existing physical health conditions are at a heightened risk of developing a depressive illness during this transitional phase25, and previous research has found a higher prevalence of depression among women with medically induced menopause compared to women who experience natural menopause26. Taken together, these findings pose important implications for healthcare professionals (HCPs) regarding the identification and management of mental health symptoms in women during the menopause and menopause transition, with routine mental health screening being crucial for early identification and intervention.

Undoubtedly, the menopause is a multifaceted phase that encompasses not only physical changes but also significant psychological challenges. Recognising the holistic nature of menopausal experiences is crucial for providing comprehensive care. In a systematic review examining perceptions of healthcare among immigrant women, most were dissatisfied with the care they had received27. Indeed, it is disheartening to note that menopausal care provision remains inadequate, even in high-income countries24. For instance, despite the monumental launch of the 2015 National Institute for Health and Care Excellence (NICE) guidelines for menopause care provision in the UK, the healthcare system continues to grapple with a lack of comprehensive and high-quality care for women28.

Critically, there is a notable gap in research regarding women's first-hand experiences with menopausal care provision in the UK general population and it remains uncertain whether care experiences in the UK differ based on the specific stage of the menopause (i.e., early or late perimenopause stage versus the menopause) or for those experiencing medically induced menopausal symptoms. By gaining insights into women's perspectives and challenges at different stages of the menopause and for those with medically induced menopause, we can develop a more patient-centred approach to menopausal care in the UK.

To this end, we set out to explore experiences with care provision throughout the menopause transition and the menopause offered via healthcare services in the UK using a mixed-methods approach. The key objective of this study was to understand women's perspectives regarding the availability and quality of menopause care services in the UK, including care provision specifically for mental health concerns that may arise due to the menopause. In addition, we explored whether experiences with care provision vary across the perimenopause and the menopause, as well as for individuals with medically induced menopausal symptoms. The findings from this study have important implications for the development of future healthcare policies and guidelines and the improvement of the quality of care for women experiencing menopausal symptoms in the UK.

Results

Sociodemographic characteristics

Respondents' sociodemographic information across the entire sample can be found in Fig. 1 and Supplementary Table 1A (Supplementary Materials). A total of 1154 participants commenced the survey, of which 82.50% ( n = 952) completed at least 97% of the survey: early perimenopause stage (48.21%, n = 459), late perimenopause stage (17.54%, n = 167), post-menopause (26.05%, n = 248), and medically induced menopause (8.19%, n = 78) (Fig. 1A).

A Participant subgroup, B Education, C Employment, and D Household income. Key. A level, Advanced level qualification; GCSE, General Certificate of Secondary Education; IB, International Baccalaureate. a Percentages add up to more than 100% as respondents could select multiple options; b includes full-time employment ( n = 450), part-time employment ( n = 256), and self-employment ( n = 105); c includes having an income of £15,000 or less ( n = 69), between £15,001 and £25,000 ( n = 76), and between £25,001 and £35,000 ( n = 108); d includes having an income between £35,001 and £45,000 ( n = 100), between £45,001 and £55,000 ( n = 106), and between £55,001 and £65,000 ( n = 90); e includes having an income between £65,001 and £75,000 ( n = 90), between £75,001 and £85,000 ( n = 65), and £85,001 or above ( n  = 137).

The average age across the entire sample ( N = 952) was 50.01 (SD = 5.27, range=24-69), with the majority of respondents identifying with the female gender (98.00%, n = 933), being white (97.27%, n = 933), having at least an undergraduate degree (59.98%, n = 571), and being married or in a civil partnership (61.97%, n = 590) (Fig. 1B). Regarding accommodation characteristics, living with a partner and children (44.96%, n = 428) or living with a partner (33.82%, n = 322) were the most common arrangements. 85.19% ( n = 811) were employed (Fig. 1C) and 61.76% ( n = 588) had a household income of at least £35,001 before tax (Fig. 1D).

For a summary of between-group comparisons (i.e., early perimenopause stage, late perimenopause stage, post-menopause, medically induced menopause) on sociodemographic information see Supplementary Table 1A (Supplementary Materials). There was a significant between-group difference in age ( F(3, 948) = 139.97, p < 0.001, η 2 = 0.31), with those in the early perimenopause stage being younger (M = 47.16, SD = 4.21) than all other groups, and both respondents in the late perimenopause stage (M = 51.37, SD = 3.96) and medically induced menopause group (M = 51.18, SD = 6.20) being younger than the post-menopause group (M = 54.01, SD = 4.32). There was also a significant group difference in education level ( H(3) = 10.21, p = 0.017). Respondents in the early perimenopause stage were more highly educated than the post-menopause group ( U = 46030, p = 0.003, r = 0.11). Furthermore, there was a significant group difference in employment ( χ²(3, N = 952) = 19.76, p  < 0.001, φc = 0.14), with respondents in both the early perimenopause stage and post-menopause being less likely to be retired relative to those in the late perimenopause stage. No other significant group differences were found.

Healthcare provision throughout the menopause

Respondents' healthcare provision across the entire sample can be found in Fig. 2 and Supplementary Table 1B (Supplementary Materials). Overall, the majority (74.47%, n = 709) of respondents had discussed their menopausal symptoms (e.g., hot flushes, mood changes, night sweats, irregular or absent periods, decreased sex drive) with a HCP (Fig. 2A), most frequently a National Health Service (NHS) GP (90.41%, n = 641), followed by a NHS gynaecologist (13.68%, n = 97), a private HCP (13.68%, n = 97), and other HCP (12.13%, n = 86; Fig. 2B). Of these, 78.56% (n = 557) expressed that they were aware that these symptoms were related to the menopause prior to their appointment with a HCP. For those who had visited a HCP for their menopause symptoms, the most common treatment or support options were oral (68.83%, n = 488) and topical medication (e.g., vaginal oestrogen creams) (17.21%, n = 122), as well as lifestyle changes (17.21%, n = 122) (Fig. 2C), with the majority (55.29%, n = 392) being prescribed these treatment or support options by their HCP (Fig. 2D). 18.76% ( n = 133) of those who had visited a HCP for their menopausal symptoms had not received any treatment or support options (Fig. 2C). In terms of overall perceived quality of care for menopausal symptoms, 36.95% ( n = 262) stated that they had received very good or good care, while 27.65% ( n = 196) experienced acceptable care, and 35.40% ( n  = 251) expressed that they had received poor or very poor care.

A Consulted HCP for menopausal symptoms, B HCPs consulted, C Recognised menopause as cause of symptoms, and D Treatment or support for menopausal symptoms. Key. GP general practitioner, HCP healthcare professional, NHS National Healthcare Service. a Includes those who had visited a HCP for their menopausal symptoms ( n = 709); b percentages add up to more than 100% as respondents could select multiple options.

For a summary of between-group comparisons (i.e., early perimenopause stage, late perimenopause stage, post-menopause, medically induced menopause) on healthcare provision throughout the menopause see Supplementary Table 1B (Supplementary Materials). There was a significant group difference in the proportion of respondents who had seen a HCP for their menopausal symptoms ( χ²(3, N = 952) = 18.61, p < 0.001, φc = 0.14), with respondents in the early perimenopause stage being less likely to have visited a HCP than both the post-menopause and medically induced menopause groups. In addition, there were significant differences in the type of HCP seen for menopausal symptoms between the groups, specifically with regard to seeing a NHS gynaecologist ( χ²(3, N = 709) = 30.90, p < 0.001, φc = 0.21) and a private HCP ( χ²(3, N = 709) = 9.48, p = 0.024, φc = 0.12). The medically induced menopause group was more likely to have seen a NHS gynaecologist relative to all other groups, and to have seen a private HCP in comparison to those in the early perimenopause stage. For those who had visited a HCP for their menopausal symptoms, there were significant group differences in the use of oral and topical medication (oral medication: χ²(3, N = 709) = 12.60, p = 0.006, φc = 0.13; topical medication (e.g., vaginal oestrogen creams): χ²(3, N = 709) = 15.20, p = 0.002, φc = 0.15). Respondents in the early perimenopause stage were less likely to have used oral medication relative to all other groups, as well as topical medication (e.g., vaginal oestrogen creams) in comparison to the medically induced menopause group. There was also a significant group difference in the proportion of respondents who had received no treatment or support for their menopausal symptoms ( χ²(3, N = 709) = 9.88, p = 0.020, φc = 0.12), with respondents in the early perimenopause stage being more likely to have had no treatment or support than the post-menopause group. Finally, there was a significant group difference in perceived overall quality of care for menopausal symptoms ( H(3) = 11.44, p = 0.010), with the medically induced menopause group expressing significantly lower satisfaction relative to those in the late perimenopause stage ( U = 3182, p < 0.001, r  = 0.24). No other significant group differences were found.

Mental healthcare provision throughout the menopause

Respondents' mental healthcare provision throughout the menopause can be found in Fig. 3 and Supplementary Table 1C (Supplementary Materials). Overall, the majority of respondents (86.76%, n = 826) expressed that their menopausal symptoms had negatively affected their mental health (Fig. 3A), with 61.26% ( n = 506) of these stating that they had visited a HCP to discuss their mental health symptoms since the onset of the menopause transition. Only 28.49% ( n = 202) reported that they felt the HCPs involved in the management and treatment of their menopausal symptoms were aware of the (peri)menopause impact on their mental health, and only 24.40% ( n = 173) were provided with mental health information by their HCP (Fig. 3B). In addition, 33.99% ( n = 241) respondents expressed that they had been asked about their mental health by a HCP involved in the management and treatment of their menopausal symptoms (Figs. 3C), and 7.85% ( n = 58) had been asked to complete a mental health assessment (Fig. 3D). Overall, in terms of perceived quality of care for mental health symptoms, 36.36% ( n = 184) of respondents expressed that they felt their mental health symptoms related to the menopause were not taken at all seriously by their HCP, while 63.64% ( n = 322) stated that their mental health symptoms related to the menopause were taken at least slightly seriously by their HCP (Fig. 3E). 43.70% ( n = 416) of respondents expressed that the best method to provide information on mental health symptoms related to the menopause would be at first contact with a HCP for any menopausal symptom (Fig. 3F). This was closely followed by providing information via text or post to anyone approaching the average age for the menopause transition (42.86%, n = 408) (Fig. 3F).

A Menopause symptoms affected MH, B Provided with MH information by HCP involved in menopausal care, C Asked about MH by HCP involved in menopausal care, D Asked to complete a MH questionnaire by HCP involved in menopausal care, E MH symptoms related to the menopause taken seriously, and F Best method to provide information on MH symptoms related to the menopause. Key. HCP healthcare professional, MH mental health. a Includes those who reported that their menopausal symptoms have negatively affected their mental health ( n = 826); b includes those who have visited a HCP for their menopausal symptoms OR their mental health symptoms related to the menopause ( n  = 739).

For a summary of between-group comparisons (i.e., early perimenopause stage, late perimenopause stage, post-menopause, medically induced menopause) on mental healthcare provision throughout the menopause see Supplementary Table 1C (Supplementary Materials). No significant group differences were found.

Experiences regarding poor or very poor menopausal care: thematic analysis

Of the 251 (35.40%) respondents who reported having received poor or very poor quality of menopausal care by their HCP, 170 provided (optional) open-ended response data regarding whether they had received any comments about the menopause from a HCP that had seemed unusual or inappropriate and how that made them feel. Of these, 159 open-ended responses were included in a thematic analysis as two respondents only responded 'no' and nine responses could not be categorised and were therefore excluded. Thematic analysis revealed six themes: consequences of poor care experiences, HCP was dismissive or negative, poor perception of treatment management, lack of symptom information and misattribution, HCP knowledge, and self-advocacy (see Fig. 4 for a summary of the sub-themes and themes generated).

The size of the segments correspond to the frequency of the themes and sub-themes in the dataset. Key. HCP healthcare professional, HRT hormone replacement therapy, MH mental health, QOL quality of life.

Consequences of poor care experiences was a key theme generated, with respondents expressing feeling unsupported by their HCP, stating that they "felt dismissed" [late perimenopause stage, age 50] and as if they were "just another person and not listened to or understood" [early perimenopause stage, age 51]. Poor or very poor experiences of menopausal care resulted in some respondents feeling negative emotions, including feeling "hopeless" [post-menopause, age 56] and " unimportant, disregarded" [medically induced menopause, age 41]. Respondents also expressed that the poor quality of their menopausal care had resulted in years lost, such that "after 7 years of being given the wrong treatment, [they were] told there was nothing more they could do" [post-menopause, age 55] and that they were told they "had to suck it up... for 6 years [by] multiple gps" [medically induced menopause, age 41]. In turn, poor care experiences resulted in respondents feeling discouraged from further formal help-seeking, including feeling "entirely put off seeking any further help" [post-menopause, age 55] and that "there's no point going back to ask for HRT [hormone replacement therapy]" [early perimenopause stage, age 43]. Furthermore, respondents expressed being made to feel as if they were a burden by their HCP when seeking help, for example "I felt like I had wasted his [HCP] time and just to 'get on with it'" [post-menopause, age 56], and "...was made to feel like I was being unreasonable in raising it with the GP, and that I was wasting her time" [post-menopause, age 55].

The second theme identified regarded HCPs being perceived as dismissive or negative. Respondents expressed that their menopausal symptoms had been dismissed due to their age, for instance one respondent was told they were "too young for perimenopause at 41" [late perimenopause stage, age 47] and another that they "too young to be going through menopause, despite only having one ovary and with both [their] mum and sister going through menopause in their early 40's" [early perimenopause stage, age 42]. Some respondents felt their menopause symptoms had been dismissed as being a natural aspect of aging, including being told that the "menopause is a natural process that the majority of women go through with no need for support" [post-menopause, age 55] and that there are "women in 3rd world countries without medication so [they] should be able to" deal with it too [early perimenopause stage, age 44]. Others expressed that their symptoms had been ignored following a hormonal blood test result, for instance: "I have been told that because the blood test result I received was normal it was unlikely that my symptoms related to the menopause" [early perimenopause stage, age 53] while another was told that their "hormone levels were normal and [their] symptoms would probably go away" [late perimenopause stage, age 47]. Some respondents' mental health symptoms related to the menopause were dismissed, with one expressing that "no mental health support was recommended even though [their] symptoms included depression and anxiety" [early perimenopause stage, age 47] and another respondent stating that their HCP had told them that "the menopause is not a reason to be off work... [despite] having a week to 10 days with full blown depression like symptoms" [medically induced menopause, age 54]. Similarly, respondents reported that symptoms related to poor sexual functioning or reduced libido had been ignored or dismissed, with one respondent expressing the following: "I told GP I had lost my sex drive which was effecting [sic] my relationship. They ignored what I'd said and offered me antidepressants and advised CBT" [early perimenopause stage, age 51]. Others expressed that the impact of the menopause on their quality of life had been dismissed, resulting in "...the effect on [their] life [being] diminished at best and ignored at worst" [early perimenopause stage, age 41]. Medical gaslighting was also identified, such that HCPs made patients feel as if they were "a neurotic mess" [post-menopause, age 57] or that they must be "imagining the symptoms" [medically induced menopause, age 41]. In addition, respondents stated that they had received a rude or inappropriate comment, such as "all women in their 40 s are miserable" [early perimenopause stage, age 41] and that they "needed to 'get a life' and forget [they were] ill" [post-menopause, age 58].

The third major theme concerned respondents' perceptions of treatment management. One respondent expressed that "there is a tendency to jump very quickly to antidepressants rather than HRT" [post-menopause, age 46]. Another respondent stated that they were "offered antidepressants repeatedly until [they] thought [they were] actually depressed" [early perimenopause stage, age 51]. Respondents also felt that their treatment had been poorly managed by their HCP. This included a lack of monitoring of treatment efficacy and response, for instance a respondent said: "she [HCP] started me on hrt then left me a year till she reviewed my regime then changed my current regime and said I'd have another review in about a year again, it's not acceptable to be left struggling like this with no funds to go private" [early perimenopause stage, age 49]. Respondents also expressed feelings of not being involved in decision-making regarding their treatment, such that when one respondent mentioned side effects, they were not "offered alternatives, just stopping" [late perimenopause stage, age 53]. Another respondent stated that their "1 st doctor was male and wouldn't prescribe HRT as his wife had gone thru [sic] menopause naturally and he recommended the same even though [they] asked for HRT to be prescribed he still refused" [medically induced menopause, age 45]. Respondents expressed having received no signposting to additional information or sources of help, for instance one respondent expressed that they were "unable to go on HRT due to many reasons and wasn't given any advice or help about how to source any other help" [post-menopause, age 53], while another was given "no advice... from GP when [they were] first told [they] were probably perimenopausal" and that they "would've liked some information or to be directed where to get reliable information" [early perimenopause stage, age 54]. Finally, respondents with medically induced menopause expressed having received no treatment: "no proper review or discussion about options to manage menopausal symptoms post hysterectomy" [medically induced menopause, age 55] while another was "told by GP its [sic] to be expected that [their] symptoms were due to surgery" but received "no treatment despite symptoms for 2 years" [medically induced menopause, age 57].

Another major theme identified regarded the lack of information regarding the symptomatology of the menopause and issues surrounding misattribution of menopausal symptoms to other health conditions or lifestyle factors. Respondents expressed that their HCP had not provided them with any information on the menopause or menopause transition, including treatment options or directing them to reliable sources of information. In this regard, one patient stated that they were "mystified why menopause was never mentioned or suggested" when they went to see a HCP about their "low mood, hot flushes, [and] fatigue" [late perimenopause stage, age 44], while another stated that there had been "no mention that what [they were] experiencing was perimenopause" [late perimenopause stage, age 51]. In addition, some respondents stated that their menopausal symptoms had been attributed to other health conditions such that "it's probably just long covid" [early perimenopause stage, age 38] or "just depression and anxiety" [late perimenopause stage, age 46]. Similarly, respondents also commented on the fact that their menopausal symptoms had been trivialised as being due to their weight or lifestyle factors, such as being told " to loose [sic] weight and [they] would feel better" [post-menopause, age 54] or that their symptoms were "due to stress" [early perimenopause stage, age 44].

Respondents also commented on HCPs' knowledge, noting that their HCP was uneducated about the menopause. For instance, one respondent expressed that their "GP was unable to answer [their] questions about effects of hormones on [their] symptoms as she did not have enough knowledge herself" [early perimenopause stage, age 52]. Another expressed that "the doctor did not have a clue, kept saying erm and I could tell he was reading off the internet" [late perimenopause stage, age 52]. Related to this, respondents also provided comments that they had received about the menopause and its treatment that were incorrect, such that because they "didn't have hot flushes, HRT wouldn't help" [late perimenopause stage, age 61] and that "there's no evidence that depression and anxiety are symptoms of menopause" [medically induced menopause, age 56].

The final theme regarded self-advocacy. Some respondents expressed that they felt that they had to take responsibility for the identification of the menopause symptoms and management options and share this with their HCP, with one respondent stating "after my own research I went to GP and told them it was perimenopause and I was prescribed HRT which made a big difference suggesting I was correct" [early perimenopause stage, age 49]. Another respondent stated that they "had to print out information from the NHS website to show [their] GP" [post-menopause, age 62]. Similarly, some respondents commented on the fact that they had to insist on being prescribed HRT medication, such that one respondent "suffered for nearly 10 years before demanding HRT from [their] GP" [late perimenopause stage, age 54]. Another respondent expressed that "it took 3 years of [them] insisting and for [their] periods to stop completely for a year for the gp to prescribe hrt" [late perimenopause stage, age 46].

Discussion

Healthcare provision throughout the menopause

The vast majority of women in the current study had disclosed their menopausal symptoms to a HCP, primarily relying on NHS GPs for assistance. Notably, help-seeking behavior varied between women with medically induced menopause and those experiencing natural menopause, with the former group being more likely to have discussed their symptoms with NHS gynaecologists or private HCPs. The findings also revealed that the majority of women who sought HCP advice had awareness prior to their appointment with a HCP that the menopause could be the underlying cause, indicating a reasonable level of knowledge and understanding regarding the hormonal changes during this life phase.

It has been previously suggested that women with higher education levels tend to have greater menopause awareness29. Given that a significant proportion of the women in this study were highly educated, it is possible that their awareness levels may not be representative of the general population in the UK, which is likely to have lower menopause awareness overall. Importantly, menopause awareness plays a critical role in shaping women's perception of symptom severity and their overall quality of life30, with research highlighting that a better understanding and awareness of the menopause and its transition allow women to feel more empowered to make better healthcare decisions during this phase of life31,32.

When it came to treatment or support options, the most commonly reported approaches were oral medication, vaginal oestrogen creams, and lifestyle changes. Notably, women in the early perimenopause stage were less likely to receive any treatment or support compared to women in the post-menopause group. This could be due to a lack of awareness or understanding among HCPs regarding the potential impact of early perimenopause symptoms and the benefits of early intervention. Indeed, there exists evidence that the early perimenopause stage may hold particular significance when it comes to the success of hormone-based treatments for menopausal symptoms33,34. Furthermore, addressing menopausal symptoms during the early perimenopause stage can have broader health implications, such as improved cardiovascular health and bone density35,36,37,38, as well as reducing the risk of Alzheimer's disease39,40.

Mental healthcare provision throughout the menopause

The majority of women experienced negative effects on their mental health due to menopausal symptoms. Around two-thirds of these women sought help from a HCP specifically for their mental health symptoms related to menopause. However, less than one-third of the women believed that the HCPs involved in their menopausal care had sufficient knowledge about the impact of the menopause on mental health. Additionally, only a quarter of women received information about mental health symptoms related to menopause, and just over a third were asked about their mental health by the HCPs involved in their menopausal care.

Critically, only around 8% of women were asked to complete a mental health assessment as part of their menopausal care, and over a third of women felt that their mental health symptoms related to menopause were not taken seriously by their HCPs. Overall, these findings suggest that mental health symptoms during the menopause are frequently overlooked by HCPs, in spite of their prevalence41,42, and that mental health screening is not consistently integrated into menopausal healthcare. Given that the menopause represents a period of increased vulnerability for mental health issues16, this indicates a missed opportunity to identify and address potential mental health concerns that may arise during this phase of life.

Overall quality of menopausal care provision

Overall, women's satisfaction with menopausal care was mixed. Approximately one-third of women felt that they had received good or very good care. However, a similar proportion expressed dissatisfaction, rating the care they had received as poor or very poor. It is worth noting that women who experienced medically induced menopause reported lower satisfaction rates compared to those in the late perimenopause stage, with the thematic analysis further revealing that menopause symptoms arising following surgery are often not acknowledged or dismissed. This indicates that there is room for improvement in meeting the needs and expectations of women undergoing menopausal transitions, particularly those with medically induced menopause.

The consequences of poor care experiences during the menopause were significant and multifaceted. Thematic analysis revealed that women felt unsupported, not taken seriously, or ignored by HCPs. These findings align with previous research highlighting the importance of available support for menopausal women, with a lack of support often leaving women feeling confused about their symptoms and unsure about how to manage them effectively43. The women in the study also blamed their doctors for showing little interest in the topic and felt let down by the lack of support provided43.

In our study, we observed comparable sentiments, with negative care experiences for the menopause frequently resulting in feelings of hopelessness, as well as feeling disregarded and unimportant. These experiences sometimes even deterred women from seeking further help altogether. Furthermore, HCPs were frequently described as dismissive or negative, with medical gaslighting, where women felt their symptoms were being invalidated or made to feel like they were imagining them, also being mentioned. Some women reported that their menopausal symptoms were disregarded because they were considered too young or a natural part of aging. Notably, some researchers have challenged the idea that the menopause is characterised by a range of vasomotor, psychosocial, physical, and sexual symptoms, positing that only the former are specific to the menopause, while other symptoms are more strongly associated with socio-demographic variables6. While the symptoms of the menopause continue to be debated by clinicians and researchers, it is imperative that HCPs offer empathetic and supportive care during the menopause, ensuring that women feel heard, understood, and validated in their experiences.

Some women expressed dissatisfaction with the management of their treatment options during the menopause. They reported instances where HCPs made potentially inappropriate recommendations for antidepressants or psychiatric medication instead of hormone replacement therapy (HRT; also referred to as menopausal hormone therapy (MHT)). It is important to note, however, that antidepressants are a valid treatment option for mood-related menopause symptoms44. These findings may, therefore, be suggestive of a lack of women's awareness regarding the available treatment approaches for the menopause, and potentially indicates a missed opportunity for HCPs to explain their decision-making in selecting antidepressants for the menopause. Indeed, these women felt that they were not adequately involved in the decision-making process and were not provided with sufficient information about their treatment options. This goes against the guidelines set forth by NICE in 201544, which emphasise the importance of HCPs offering evidence-based information on the benefits and risks of different treatment options, enabling women to make individualised decisions about their care.

A notable finding from this study was that a considerable number of women felt that their HCPs inaccurately attributed their menopausal symptoms to other health conditions or lifestyle factors. They reported instances where their symptoms were mistakenly linked to factors such as COVID-19, depression, anxiety, or weight. This highlights a concerning lack of knowledge or understanding about the menopause among HCPs. It is particularly alarming that some women received incorrect information about the menopause from their HCPs. In the UK, where primary care providers play a crucial role in managing menopause symptoms within the NHS, it is concerning that GPs often feel they lack adequate support to effectively advise and treat women experiencing menopausal symptoms45. Despite efforts to improve menopause training in medical schools, there is still a perceived need for further improvement in equipping GPs with the necessary knowledge and skills to provide comprehensive menopause care45.

Lastly, some women expressed a sense of needing to take personal responsibility for their own menopausal care. They reported having to conduct their own research and advocate for specific treatments, such as HRT. Similarly, previous research has shown that women often perceive their doctors as being too restrictive when it comes to prescribing hormone-based treatments, resulting in having to persuade their doctors to prescribe certain treatments and feeling fortunate if their doctor agreed43. Overall, the findings from the current study suggest a lack of proactive care within the healthcare system, where women perceive the need to take an active role in advocating for themselves to ensure they receive adequate care and treatment. Whilst self-advocacy and increased knowledge can be empowering and improve patient-HCP interactions, it should not be a requirement for the receipt of high-quality care.

Limitations

The study respondents had higher levels of education, a higher household income, and a higher proportion of white individuals compared to the general UK population. Therefore, the experiences and perspective captured in this study may not fully represent the wider UK population, as well as the experiences of ethnic minorities and disadvantaged populations in the UK, who may face additional challenges and negative experiences with menopausal care provision. Additionally, whilst social media recruitment and online survey delivery were chosen to maximise the sample size, this will have resulted in recruitment bias. For instance, it is likely that those who sought help for mental health symptoms related to their menopause will have been overrepresented, and, as such, the care experiences of the current sample may differ from the wider population of menopausal women in the UK. Moreover, individuals with negative experiences of care provision may have been more inclined to participate. These factors should be taken into consideration when interpreting the findings and extrapolating them to the wider UK population.

Conclusion

Taken together, the findings from this study highlight the need for immediate improvements in the delivery of healthcare services for women going through the menopause and menopause transition in the UK. The study brings to light the importance of recognising the unique care requirements of women who have undergone medically induced menopause, as their needs may differ from those who experience natural menopause. Furthermore, it is essential for HCPs to have an understanding of the physiological and psychological changes that occur during the menopause beyond the stereotypically associated symptoms, as well as the available treatment options, including the option of referring women to more specialised women's health services.

The findings from the current study also emphasise the importance of delivering empathetic and supportive care to women during the menopause. Women's experiences and symptoms during this phase of life can be challenging and disruptive, both physically and emotionally. It is crucial for HCPs to demonstrate empathy, actively listen to women's concerns, and validate their experiences. Providing a supportive environment where women feel understood, heard, and respected is likely to improve their overall care experience and contribute to better outcomes.

Furthermore, involving women in decision-making processes regarding their menopausal care is paramount. Women should be encouraged to actively participate in their own care by being provided with comprehensive information about available treatment options, including their benefits, risks, and potential alternatives. By involving women in decision-making, HCPs can ensure that care plans are individualised, taking into account women's preferences and goals. This collaborative approach can help foster a sense of ownership and empowerment, enabling women to make better informed choices about their health and wellbeing.

Methods

Participants

Participants were recruited between January 2023 and March 2023 via email, paid Facebook and Instagram advertisements, organic posts on the Cambridge Centre for Neuropsychiatric Research Facebook and Twitter pages, and Reddit. Recruitment messages were also disseminated by word-of-mouth and through relevant foundations and support groups. Inclusion criteria for the study were: (1) ≥ 18 years, (2) UK residence, (3) must be currently experiencing symptoms of the menopause or menopause transition (e.g., hot flushes, mood changes, night sweats, irregular or absent periods, decreased sex drive) and belong to one of the following groups: (i) early perimenopause stage: significant change in the length of menstrual bleed or the time between periods that is not due to pregnancy or breastfeeding, stress, or a medical condition, (ii) late perimenopause stage: no menstrual bleeding in 3-11 months not due to pregnancy or breastfeeding, stress, or a medical condition, (iii) post-menopause: no menstrual bleeding in 12 months not due to pregnancy or breastfeeding, stress, or a medical condition, or (iv) medically induced menopause: no menstrual bleeding due to hysterectomy with one or two ovaries retained or other medical procedure. Participants were also required to not be currently pregnant or breastfeeding and did not have to have been diagnosed with a mental health condition to take part in the study. There were no other inclusion criteria. Participants were invited to enter their email for the chance to win one of three £50 Highstreet vouchers.

Materials and procedure

Given the uniqueness of the UK's healthcare system and the fact that, to our knowledge, there is no validated measure that can capture the nuances of healthcare experiences and perceptions specific to the menopause, the creation of an anonymous online survey was deemed appropriate for the current study. The survey was created using Qualtrics XM® in order to explore the current state of care provision offered via healthcare services in the UK throughout the menopause and menopause transition. The survey questions and accompanying study materials were designed in consultation with an experienced psychiatrist (SB).

The survey could be completed in 15-20 minutes and comprised eight sections: (1) participant information sheet detailing the rational for the study, (2) electronic consent form, (3) socio-demographic information, (4) healthcare provision throughout the menopause, (5) mental health symptoms and care provision throughout the menopause, (6) menopause-specific quality of life symptoms, (7) experiences and interest in using digital technology for mental health symptoms related to the menopause, and (8) debrief. For the purpose of the current study, data regarding mental health symptoms and data from sections six and seven were not included. The survey was adaptive in nature, such that only relevant questions were asked based on previous responses. It also included an optional open-ended question regarding whether respondents had received any comments about the menopause from a HCP that had seemed unusual or inappropriate and how that made them feel.

Data analytic strategy

Quantitative data were processed and analysed in SPSS version 28.0.1.1. Figures were created using Excel version 2206 and PowerPoint version 2206 (Microsoft Office 365). Group differences (i.e., early perimenopause stage, late perimenopause stage, post-menopause, medically induced menopause) in continuous variables were explored using one-factor ANOVAs, with effect sizes reported as eta-squared (η ²; small = 0.01, medium = 0.06, large = 0.1446). Where appropriate, pairwise comparisons subject to the Bonferroni-correction method for multiple comparisons were conducted. Group differences in ordinal variables were explored using Kruskal-Wallis H tests, with posthoc Mann-Whitney U tests subject to the Bonferroni-correction method for multiple comparisons conducted where appropriate. Effect sizes are reported as r (small = 0.10, medium = 0.30, large = 0.5046). Comparisons on binary variables were conducted using Chi-Square tests (χ²) or Fisher's Exact Test (FET) for low frequency data (i.e., values below five). Effect sizes are reported as Cramer's V (φc; small = 0.10, medium = 0.30, large = 0.5046).

Qualitative data were analysed following the recommended six stages of thematic analysis47. These data comprised (optional) open-ended responses regarding comments about the menopause from a HCP that had seemed unusual or inappropriate and how that made them feel. Given that this question aimed to gather in-depth views of negative experiences regarding menopausal care provision, only responses from those who had reported having received poor or very poor quality of menopausal care by their HCP were included in the analysis. The following steps were conducted: (1) The second author (EF) became familiar with the data by reading and rereading the open-ended responses and noting down ideas. (2) The second author (EF) generated initial codes, and a codebook was produced, including a brief descriptions for each code. (3) The first two authors (NAM-K, EF) performed a blinded allocation of codes to each of the open-ended responses using the codebook. (4) Following this, any inconsistencies in coding were discussed until a consensus was reached. (5) The codes were then condensed into broad themes, with the first and second authors generating themes separately. (6) These were then discussed until a consensus was reached.

Acknowledgements

We are most grateful to all the survey respondents for their participation. This study was funded by Stanley Medical Research Institute (grant number 07R-1888). The funder played no role in study design, data collection, analysis and interpretation of data, or the writing of this manuscript.

Author information

Authors and Affiliations

Cambridge Centre for Neuropsychiatric Research, Department of Chemical Engineering and Biotechnology, University of Cambridge, Cambridge, UK

Nayra A. Martin-Key, Erin L. Funnell, Benedetta Spadaro & Sabine Bahn

Contributions

N.A.M.-K., E.F., B.S., and S.B. conceived the study focus and materials. E.F. coordinated and conducted participant recruitment. Data analysis was performed by N.A.M.-K.. N.A.M.-K. and E.F. prepared the manuscript with revisions from B.S. and S.B. All authors contributed to the article and approved the submitted version.

Corresponding author

Correspondence to Sabine Bahn.

Ethics declarations

Competing interests

Author S.B. holds shares in Psyomics Ltd but declares no non-financial competing interests. Author E.F. is a paid consultant for Psyomics Ltd but declares no non-financial competing interests. Authors N.A.M.-K. and B.S. declare no financial or non-financial competing interests.

Ethical approval and informed consent

The study was approved by the University of Cambridge Human Biology Research Ethics Committee (approval number PRE.2022.110). All participants provided informed consent electronically to participate in the study.

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Martin-Key, N.A., Funnell, E.L., Spadaro, B. et al. Perceptions of healthcare provision throughout the menopause in the UK: a mixed-methods study. npj Womens Health 1, 2 (2023). https://doi.org/10.1038/s44294-023-00002-y
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DOI: https://doi.org/10.1038/s44294-023-00002-y

# data[].attributes.attachment_link.title
Perceptions of healthcare provision throughout the menopause in the UK: a mixed-methods study - npj Women's Health

# data[].attributes.attachment_link.description
The UK healthcare system faces a shortage of high-quality menopausal care. The objective of this study was to understand perspectives of menopause care in the UK. An online survey was delivered. Data from 952 respondents were analysed. Descriptive statistics were calculated for quantitative data overall and per menopause stage.

# data[].attributes.headline
Queer / LGBTQIA+ menopause. Tanya Glyde.

# data[].attributes.subject
Queer / LGBTQIA+ menopause. Tanya Glyde.

# data[].attributes.attachment_link.title
Tania Glyde - About — Queer / LGBTQIA+ Menopause

# data[].attributes.headline
Personal identity after an autism diagnosis: relationships with self-esteem, mental well-being and diagnostic timing. Kirsten Corden at el.    

# data[].attributes.subject
Personal identity after an autism diagnosis: relationships with self-esteem, mental well-being and diagnostic timing. Kirsten Corden at el.    

# data[].attributes.wish_content.attachment_props.alternative_text
Personal identity after an autism diagnosis: relationships with self-esteem, mental well-being and diagnostic timing. Kirsten Corden at el.

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doi: 10.3389/fpsyg.2021.699335.

Affiliations

¹ Department of Psychology, School of Life Sciences and the Environment, Royal Holloway, University of London, Egham, United Kingdom.

² Department of Psychology, Faculty of Natural Sciences, University of Stirling, Stirling, United Kingdom.

doi: 10.3389/fpsyg.2021.699335.

Affiliations

¹ Department of Psychology, School of Life Sciences and the Environment, Royal Holloway, University of London, Egham, United Kingdom.

² Department of Psychology, Faculty of Natural Sciences, University of Stirling, Stirling, United Kingdom.

Abstract

Adults are increasingly seeking autism diagnoses, although less is known about their experiences of diagnosis and personal identity (i.e., autism as part of "me"), and how this relates to self-esteem and wellbeing. One-hundred and fifty-one autistic adults completed an online survey including measures of self-esteem, psychological wellbeing, and autistic personal identity, which considered whether participants took pride in or were dissatisfied with being autistic. Fifty-four participants answered a qualitative question about the impact of receiving an autism diagnosis on their sense of self. Regression analyses found that greater time elapsed since diagnosis related to less dissatisfaction with autistic personal identity. We also found that more dissatisfaction with autistic personal identity predicted lower self-esteem, and more autism pride predicted higher self-esteem. Content analysis of participants' experiences supported the quantitative findings and was suggestive of an emotive post-diagnostic adjustment process. Future research should aim to identify ways to promote the development of a positive autistic personal identity post-diagnosis in adulthood.

Keywords: autism diagnosis; autism spectrum conditions; autistic identity; psychological wellbeing; self-esteem.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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national center for biotechnology information

# data[].attributes.attachment_link.title
Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing - PubMed

# data[].attributes.attachment_link.description
Adults are increasingly seeking autism diagnoses, although less is known about their experiences of diagnosis and personal identity (i.e., autism as part of "me"), and how this relates to self-esteem and wellbeing. One-hundred and fifty-one autistic adults completed an online survey including measur ...

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Turning down the flame on medical gaslighting.  Shravani Durbhakula and Auguste H Fortin VI.  

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Turning down the flame on medical gaslighting.  Shravani Durbhakula and Auguste H Fortin VI.  

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Turning down the flame on medical gaslighting.

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Turning Down the Flame on Medical Gaslighting

"Gaslighting" refers to a person of power psychologically manipulating another into questioning their own reality. The origins of the term date back to the 1944 film Gaslight, set in Victorian London, in which a husband leads his wife to the brink of insanity by insisting that she is imagining, among other events, the gas lamp flames wavering when he is out of the house. In actuality, the husband manipulates the flow of gas during his absences and intentionally deceives her. Use of the word "gaslighting" has recently become mainstream. The Merriam-Webster dictionary chose it as "word of the year" in 2022, citing the New York Times' coverage of patients who used the expanded term, "medical gaslighting", to describe feeling discounted or doubted by their physicians. The reality that patients feel psychologically manipulated by their physicians is deeply concerning and requires equally deep inquiry which, to date, has not been done.

According to the New York Times,1 the term "medical gaslighting" gained traction on the social media platform Instagram; the hashtag has nearly 20,000 posts to-date. In the medical literature, the term "medical gaslighting" debuted in September of 2020 when JAMA2 published a first-person account of a patient who believed she was gaslighted when her symptoms were repeatedly discounted; she was ultimately diagnosed with long COVID. In October of 2020, Hoffman et al.3 described the dismissal or downplaying of gynecological pain and symptoms in women as medical gaslighting. References to medical gaslighting in the media have eclipsed references to the topic in medical journals. In fact, a recent search for "medical gaslighting" in the National Institutes of Health's PubMed database yields only 4 references regarding patients' healthcare experience (in the medical literature, most articles about "gaslighting" refer to healthcare providers feeling manipulated by the healthcare system).

In this void, the popular press is shaping the definition of medical gaslighting, often through accounts of patients who felt dismissed by doctors and faulting physicians as the primary cause of negative healthcare outcomes. Reports frequently cite the context of structural racism, cultural and gender discrimination, and biases-real threats to health equity with a troubled history-as significant contributors to patients' feeling written-off and manipulated. The New York Times4 attempted to explain the term in an article on July 29, 2022, entitled, "Feeling Dismissed? How to Spot 'Medical Gaslighting' and What to Do About It." The article correctly acknowledged areas for improvement, such as the tendency of physicians to interrupt patients. However, it added a concerning new dimension to the term by asserting that a sign of gaslighting is when "your provider will not order key imaging or lab work to rule out or confirm a diagnosis." Patients-particularly women and people of color-feeling that their concerns are minimized is a serious concern for the medical profession, but not ordering potentially unindicated tests in response to patient requests is another thing entirely.

Public awareness campaigns such as Choosing Wisely, a partnership between the American Board of Internal Medicine Foundation and specialty societies have developed clinical recommendations to discourage unnecessary care and instead promote value-based care. Although diagnostic diligence is critical, lab tests and imaging studies are not always the "key" to a diagnosis, and patients are not always aware of the right therapies. A common example is patients asking for antibiotics to treat a virus, and feeling unheard when requested drugs are not prescribed. The campaign promotes doctor-patient conversations about frequently-used tests that may "do more harm than good."

It appears that a lack of such conversations, rather than a lack of testing, is creating gaslighting perceptions. Patients who feel heard, understood, and cared-for will not feel gaslighted; and with proper dialogue, it is more likely that physicians will order the right tests and therapies when they are indicated. Over 40 years of research have shown that using relationship-centered communication skills achieves this, and more5,6. These skills are linked with improved health outcomes and better patient experience. Importantly, these skills can be incorporated into practice with modest effort. Key evidence-based skills include collaborative agenda-setting for the encounter, allowing patients to describe their symptoms without early interruption, eliciting the emotional context of that story, and responding with verbal empathy.

Many gaslighting anecdotes focus on physicians attributing patients' symptoms solely to stress, poor nutrition, mental health, lack of exercise, or obesity. Since Dr. George Engel conceptualized the biopsychosocial model in 1977, an abundance of evidence has substantiated that biological disease is influenced by complex mind-body linkages as well as social determinants of health. For instance, we know that feelings of hope can improve cancer outcomes; cognitive behavioral therapy can reduce centralized pain; studies of drugs are confounded by placebo and nocebo effects; and adverse childhood experiences increase the probabilities of cardiac disease. Despite this, conversations about the psychological and social dimensions of health and illness leave some patients feeling accused of having an illness that is "all in their head".

We must do a better job of exploring the biopsychosocial model with patients, and collaboratively untangling its relevance to the illness experience and clinical outcomes for each individual patient. Relationship-centered communication trainings that focus on the biopsychosocial model, such as those offered by the Academy of Communication in Healthcare, may improve physicians' skill in discussing the mind-body connection. These trainings must be modified for the digital age to account for communication challenges caused by telemedicine visits, cumbersome electronic medical records, and a general reliance on technology for communication as opposed to face-to-face relationship-building.

Certainly, factors beyond physicians' immediate control challenge relationship-centered communication. The proportion of physician time spent on direct patient care has been eroded by escalating administrative and insurance burdens, documentation requirements, and economic models that reward productivity over value. Time-constraints reduce physician and patient confidence in healthcare decision-making, quality, and safety. In a study of primary care medical teams, over two-thirds of respondents felt that time-pressures interfered with screening, diagnosis, or treatment opportunities. Additionally, patients receiving care from time-stressed practices were more likely to report lower levels of support.7 Such feelings of low support likely fuel gaslighting perceptions.

Determining which patient demographics, medical conditions, physician behaviors, and health system pressures are correlated with gaslighting complaints will enable the healthcare system to learn more about gender, class, race, disability, age, and time as factors in medical gaslighting and then create the appropriate solutions. Research using qualitative methods such as focus groups and interviews combined with quantitative methods such as patient surveys can help characterize differential experiences of gaslighting. In addition, data-mining, artificial intelligence, and deep learning algorithms can elucidate patterns and trends in medical gaslighting references in social media posts, although consideration must be given to the biases in such methods.

Gaslighting means deception. Ensuring that physicians have the time and skill to help each patient feel heard, understood, and cared-for will stop this cynical term from being further linked to the practice of medicine.

References

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Authors and Affiliations

1. Division of Pain Medicine, Department of Anesthesiology, Vanderbilt University Medical Center, Nashville, TN, USA

Shravani Durbhakula MD, MPH, MBA

2. Department of Internal Medicine, Yale School of Medicine, New Haven, CT, USA

Auguste H. Fortin VI MD, MPH

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Correspondence to Shravani Durbhakula MD, MPH, MBA.

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Durbhakula, S., Fortin, A.H. Turning Down the Flame on Medical Gaslighting. J GEN INTERN MED 38, 3426-3427 (2023). https://doi.org/10.1007/s11606-023-08302-4
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# data[].attributes.attachment_link.title
Turning Down the Flame on Medical Gaslighting - Journal of General Internal Medicine

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Turning Down the Flame on Medical Gaslighting "Gaslighting" refers to a person of power psychologically manipulating another into questioning their own reality. The origins of the term date back to the 1944 film Gaslight, set in Victorian London, in which a husband leads his wife to the brink of insanity by insisting that she is imagining, among other events, the gas lamp flames wavering when he is out of the house.

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The author of I Belong Here (Bloomsbury, spring 2021), the first in a powerful new nature writing trilogy, Anita Sethi explores ideas of loneliness, solitude, companionship, connection and access to nature.
Solitude is something I have thought about more than ever in recent months, like many people, as the Coronavirus pandemic plunged us into various degrees of isolation, self-isolation and quarantine. More than ever have we had to think about the questions - where is the line between loneliness and solitude? And what is the meaning of true companionship?

Loneliness has often washed over me throughout my life, which I have come to understand arises from a sense of not belonging. The loneliness I felt could be overwhelming and engulfing. I'm sure it's something many of us have felt in recent months. For those who have been self-isolating or living alone, or with those with whom they might have fractious relations, this feeling can be intensified. Loneliness can lead to a sense of disjuncture from the self and world, of dissociation from the body and a heightened sense of stress.

Over the past year I've been moving beyond loneliness to a sense of solitude and feeling how nature can bring a great feeling of companionship. I've found a paradoxical sense of both companionship and solitude in the wild - variously in small pockets of quiet and vast landscapes - and felt the impact it can have mentally and physically.

How does time alone with the elements make us feel? And how does that shape the time we thereafter spend with other people - be it friends or strangers? It can bring a sense of calm and wellbeing. It can help us to fully inhabit ourselves and ultimately better connect with others.

The summer after I was racially abused I made a journey that followed the course of four rivers that run through the Pennines. Spending more time among the elements, I loved the non-judgemental nature of nature - how I can be free of labels, and the harsh words of others, while alone in the wild. I also came to experience what is known as 'blue care'; for not only green spaces but also blue spaces - that is being near, gazing out at, water - can have an amazingly invigorating and restorative effect.
Nature in the city
When lockdown hit, though, I ended up quarantined back in my childhood neighbourhood in inner city Manchester. My daily walks attuned my eyes even further to nature in the city. I savoured those short walks and heightening connection with nearby nature, such as flowers growing between the cracks of the pavement, gazing skywards more than usual to look at nests and marvel at the birdsong, walking through the local park.

Yet I pined after water - for there are no lakes or rivers or streams in the particular neighbourhood in which I was quarantined; as far as water goes, there are often puddles galore from the abundant Mancunian rainfall. I felt loneliness creep in again during lockdown, when spending time immersed in vast wildernesses was not as possible. I felt huge inequalities in access to nature, which is why I have set up the I Belong Here foundation.

I learnt to turn my gaze inwards at my memories of nature - I found that those rivers I had walked by flowed within, they had become a part of my inner landscape. Whilst unable to travel anywhere, I treasured memories of walking near water, of the sound of the sea, and the feel of it upon the skin.

One of the most important aspects of our time spent in nature is how it affects our equilibrium, and ways in which we can then draw on our store of memories of nature when we are unable to be in nature itself. Immersing yourself in a hot bath or even having a shower, for example, can be the perfect time to meditate on such watery landscapes and the power of blue care.
The literature and culture of solitude
When thinking about themes of solitude and company for land&water, I delved deeper into the literature of loneliness, and that of solitude. How many writers throughout the ages have found a certain splendour in solitude... They inspire me on.

"There is a pleasure in the pathless woods,
There is a rapture on the lonely shore,
There is society, where none intrudes,
By the deep sea, and music in its roar:
I love not man the less, but Nature more"
― Lord Byron

I would concur with Byron, and also found society in the sound of the sea, the companionship of other creatures not human, in living things in the wild - grass growing, flowers flourishing.

"I love to be alone. I never found the companion that was so companionable as solitude," sings the line in Walden by Henry David Thoreau, a classic of nature writing. Pushing through loneliness to find a real sense of solitude paradoxically brings companionship. John Milton concurred, writing in the classic Paradise Lost: "Solitude sometimes is best society".

"I love to be alone. I never found the companion that was so companionable as solitude." - Henry David Thoreau

Other great writers of solitude include Virginia Woolf: "How much better to sit by myself like the solitary sea-bird that opens its wings on the stake", wrote Woolf in The Waves, also creating characters such as Orlando who "naturally loved solitary places, vast views, and to feel himself for ever and ever and ever alone". And of course, reading itself - even about solitude - can bring a sense of great companionship.

"The greatest thing in the world is to know how to belong to oneself," wrote the philosopher Michel de Montaigne - which brings a better sense of belonging in the universe. One of the greatest gifts that time alone in the wild has brought me is a reinhabiting of the self - and paradoxically thereafter improved interrelations with the world.

+
Please consider donating to the I Belong Here foundation:
https://www.justgiving.com/crowdfunding/theibelonghereproject
Anita Sethi is author of a forthcoming trilogy of nature writing books, beginning with I Belong Here: A Journey Along the Backbone of Britain. Follow her on Twitter @anitasethi and Instagram @anitasethi

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The author of I Belong Here (Bloomsbury, spring 2021), the first in a powerful new nature writing trilogy, Anita Sethi explores ideas of loneliness, solitude, companionship, connection and access to nature. Solitude is something I have thought about more than ever in recent months, like many people, as the Coronavirus

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How is psychological wellbeing experienced by autistic women? Challenges and protective factors: a meta-synthesis. N Yau et al.   

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How is psychological wellbeing experienced by autistic women? Challenges and protective factors: a meta-synthesis. N Yau et al.   

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N2 - Background: Autistic women are at higher risks of experiencing mental health difficulties and suicidal behaviours than the general population. However, there are barriers to diagnostic assessmentsand mental health support reported by autistic women. To date, there is little research into how psychological wellness is experienced by autistic women. Therefore, the aim of thismeta-synthesis was to explore this.Method: A systematic literature review of existing qualitative studies was carried out. Twelve papers met the inclusion criteria for this review; the findings of which were collated and synthesisedusing a seven-step meta-ethnographic approach from which three themes emerged.Results: Three themes were generated from the 12 qualitative studies: (1) "I tend to fall between the cracks": misunderstood and ostracised; (2) "The hidden hurt"; and (3) having to meet theexpectations of others. There are important findings from the meta-synthesis which suggest there are increased risks of exploitation for autistic women. Furthermore, social camouflaging in addition to societal, cultural, and gendered expectations can have detrimental influences on psychological wellbeing for autistic women. However, mutual acceptance, belonging, and supportwere identified as protective factors of psychological wellbeing.Conclusions: Increased knowledge and training for professionals supporting autistic women is needed, particularly during different life stages such as the peri- and postnatal period and themenopause. There is also a need to promote better awareness of safe relationships to reduce risks of abuse and exploitation for autistic women. Adaptations to communication, cognitive andsensory challenges, and psychological therapy are also suggested.

AB - Background: Autistic women are at higher risks of experiencing mental health difficulties and suicidal behaviours than the general population. However, there are barriers to diagnostic assessmentsand mental health support reported by autistic women. To date, there is little research into how psychological wellness is experienced by autistic women. Therefore, the aim of thismeta-synthesis was to explore this.Method: A systematic literature review of existing qualitative studies was carried out. Twelve papers met the inclusion criteria for this review; the findings of which were collated and synthesisedusing a seven-step meta-ethnographic approach from which three themes emerged.Results: Three themes were generated from the 12 qualitative studies: (1) "I tend to fall between the cracks": misunderstood and ostracised; (2) "The hidden hurt"; and (3) having to meet theexpectations of others. There are important findings from the meta-synthesis which suggest there are increased risks of exploitation for autistic women. Furthermore, social camouflaging in addition to societal, cultural, and gendered expectations can have detrimental influences on psychological wellbeing for autistic women. However, mutual acceptance, belonging, and supportwere identified as protective factors of psychological wellbeing.Conclusions: Increased knowledge and training for professionals supporting autistic women is needed, particularly during different life stages such as the peri- and postnatal period and themenopause. There is also a need to promote better awareness of safe relationships to reduce risks of abuse and exploitation for autistic women. Adaptations to communication, cognitive andsensory challenges, and psychological therapy are also suggested.

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The Foundations of Autistic Flourishing.  Elizabeth Pellicano and Melanie Heyworth. 

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The Foundations of Autistic Flourishing.  Elizabeth Pellicano and Melanie Heyworth. 

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The Foundations of Autistic Flourishing - Current Psychiatry Reports

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Purpose of Review All people—including Autistic people—deserve to live flourishing lives. But what does a flourishing life look like for Autistic people? We suggest that the hidden biases, methodological errors, and key assumptions of autism science have obscured answers to this question. Here, we s…

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"It's not just in my head, and it's not just irrelevant": Autistic negotiations of menopausal transitions. Marianna Karavidas and Richard O. de Visser.   

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"It's not just in my head, and it's not just irrelevant": Autistic negotiations of menopausal transitions. Marianna Karavidas and Richard O. de Visser.   

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"It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions

Abstract

Physical and psychological changes during menopause can be especially tumultuous for autistic people: difficulties with sensory sensitivity and daily functioning may be exacerbated. Through individual interviews, we examined the language used by seven peri- or post-menopausal autistic people to construct their experiences, and to consider the implications for their wellbeing and identities. Our analysis, which utilised thematic decomposition, yielded three discursive themes. The theme "Uncertainty about Changes" addressed how limited awareness and understanding of menopause combined with difficulties recognising internal states. However, with "Growing Self-Awareness and Self-Care", some participants made conscious efforts to resist negative societal constructions of both autism and menopause. The theme "Navigating Support Options" addressed the interpersonal and systemic barriers participants faced when seeking support. There is a need for accessible information for autistic people experiencing menopause, and greater professional awareness.

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The intersection of autism and menopause has-until recently-received little attention. Autism is a neurodevelopmental condition associated with differences in social communication and understanding, sensory sensitivity and preferences for routines and familiarity (American Psychological Association [APA], 2013). It is considered to be underdiagnosed among those assigned female at birth (Lai & Baron-Cohen, 2015), however an increasing number are receiving diagnoses as adults (Chester, 2019), an explanation for their experiences and their sense of self that may have been unavailable to them during childhood adolescence, and earlier adulthood. Autism and menopause both have implications for people's experiences and sense of self. Late recognition of autism may mean that people have to adapt to this new component of their identity near the time when they also need to adapt to menopausal changes.

Sexual embodiment is a term used to emphasise that women's experiences of their bodies are located within the cultural context in which they live (Jackson & Scott, 2007). Material (physical), discursive (cultural and social) and intrapsychic (psychological) factors intersect to influence all subjective experiences, including transition points such as menopause (Bhaskar, 2010). At a material level, menopause is defined as the permanent cessation of menstruation: the median age ranges from 49 in Latin America to 54 in Europe (Palacios et al., 2010), and the mean age ranges from 47 in Latin America and the Middle East to 51 in Australia and Europe (Schoenaker et al., 2014). Perimenopause is the period of several years leading up to this point, characterised by gradual physical and endocrine changes that affect neurotransmitter systems (Santoro, 2016). Risks of developing clinical depression, autoimmune diseases and other health issues increase around the time of both menopause and menarche (Hoyt & Falconi, 2015; Pinkerton & Stovall, 2010).

Cultural discourses are suggested to be the framework through which individuals make sense of material and intrapsychic menopausal changes, with implications for the extent of the distress and discomfort they experience (Tolman et al., 2014). In Western cultures, the menopausal body has tended to be examined through a biomedical lens; changes are viewed as undesirable "symptoms" (Ussher, 2008). However, such constructions are by no means universal. Discursive differences appear to have important material effects: women have reported more frequent hot flushes and subsequent embarrassment and more menopause-related health concerns in cultures that position menopause as a negative medical issue, relative to those where this life stage is viewed in a more neutral or positive light (Sayakhot et al., 2012).

There is a paucity of research into the topic of autistic menopause specifically. However, there is evidence that material and intrapsychic aspects of reproductive transition points may be especially tumultuous for autistic people (e.g., Hamilton et al., 2011). Premenstrual syndrome (symptoms such as low mood and headaches prior to menstruation) may be more common among women with an autism diagnosis than those without (Obaydi & Puri, 2008), and domains that are specific to autism such as communication difficulties and sensory sensitivity appear to undergo cyclical amplifications (Steward et al., 2018). Moseley, Druce and Turner-Cobb's ( 2020a, 2020b) recent papers were the first to investigate autistic menopause. Notably, participants described uncomfortable increases in autistic traits such as sensory sensitivity, and social and emotional regulation difficulties.

Like menopause, autism has traditionally been viewed through an abject biomedical lens of "persistent deficits in social communication" (APA, 2013). Adult autism diagnoses are often only reached in the context of longstanding mental and physical health issues or a history of abusive experiences (Bargiela et al., 2016 Roberts & Koenen, 2015; Cashin et al, 2018). Indeed, a history of mental and physical health conditions and abusive experiences in early life are associated with greater menopausal discomfort (Pérez-López et al., 2014; Thurston et al., 2008). However, many late-diagnosed autistic women describe personal growth as a result of overcoming obstacles throughout their lives: diagnosis had positive implications for wellbeing (Webster & Garvis, 2017). Moseley et al. ( 2020b) asked questions such as "Are there things that you think might make menopause especially difficult for autistic women?" which enquired about negative, or clinically concerning changes that they faced. However, Moseley et al. ( 2020a) also identified a subtheme of "silver linings": despite being the source of "dark clouds" that affected sexual relationships, appearance, and self-esteem, menopause also provided benefits such as cessation of periods, adoption of healthier lifestyles, and reflection on priorities in inter-personal interactions.

Internalisation of damning biomedical discourses has been suggested to lead to women viewing their changing bodies as objects of secrecy and shame: when talking about menopause, women often use euphemisms (Hunter & O'Dea, 1997). Women with learning disabilities have described embarrassment about menopause which prevented them from disclosing uncomfortable changes to helpers (McCarthy & Millard, 2003). Autism is associated with impaired comprehension of social norms, however autistic females have a tendency to camouflage autistic traits in order to conform socially (Perry, 2019). Autistic women have been found to express apprehension about discussing menopause with peers, and many avoid doing so (Moseley et al., 2020b). However, experiential knowledge and solidarity shared between female peers in the general population is often a valued source of support during menopause (Kenen et al., 2007). Autistic people often have small social networks (Mazurek, 2014): it is possible that their differences in social milieux and understanding may influence their internalisation of cultural discourses and their subsequent treatment decisions. This is an important consideration given that autistic people have reported significant difficulties with healthcare services (Lum et al., 2014) and are at an increased risk of premature all-cause mortality and morbidity (Hirvikoski et al., 2016).

The present study aimed to understand autistic people's own understandings of the positive and negative aspects of menopausal change. The research questions were: How do autistic people discursively construct their experiences of menopausal change? What are the implications of these constructions for wellbeing, identity and accessing support?

Methods

Participants

Participants were eligible if they had reached menopause or perimenopause, were assigned female at birth, did not have intellectual disabilities, and were based in the UK. There were no exclusion criteria regarding gender identity. Participants were eligible if they had a professional diagnosis or self-identified as autistic. This approach is considered good practice within autism research (Happé & Charlton, 2012) as it avoids prioritising testing procedures that may have a gender bias (Lai et al., 2015), and because it validates self-identified positions. Having said that, six of the seven participants had a professional diagnosis.

Table 1 displays participant pseudonyms and characteristics. Age at interview ranged from 39 to 63 years (mean = 49.4), age of recognition of autism ranged from 37 to 60 years (mean = 46.8), and the onset of menopausal changes ranged from 34 to 56 years (mean = 41.7). In the UK, menopause is usually identified through self-report of menstruation in the past 12 months (Chaplin, 2016): four participants identified as post-menopausal, three identified as perimenopausal.

Table 1 Participant pseudonyms, pronouns and characteristics

Critical realist approaches do not offer specific sample-size recommendations. The aim should be analytical generalisability, i.e., the identification of underlying meanings and mechanisms rather than statistical generalizability; attempting to ascertain frequencies of a phenomenon or aiming for a comprehensive description of all aspects (Yin, 1989). Nevertheless, Malterud et al. ( 2016) have advised researchers to make initial decisions about an appropriate sample size, and to consider this on the basis of emerging findings.

Procedure

The study was granted ethical approval by the authors' Institutional Review Board. Potential participants were recruited via an advertisement on social media. Those who responded to the advertisement received a participant information sheet that outlined the topics that would be covered, right to withdraw, and data handling procedures. Informed consent was established through an electronic consent form.

The interview schedule was devised by the authors to explore the impact of autism diagnosis and menopause onset, experiences of bodily changes, and instances of seeking support or treatment. The semi-structured format ensured that core questions were asked of all participants while allowing flexibility to explore issues that were important to interviewees. Follow-up questions were worded as open-ended invitations for elaboration: e.g., "Can you give me an example?" (Magnusson & Marecek, 2015). Care was taken to avoid unnecessarily vague or figurative language, as this can confuse autistic people (Nicolaides et al., 2019). Additionally, effort was made to use neutral terminology, i.e., "menopausal changes" rather than "symptoms" in order to avoid priming a medical discourse.

Those willing to take part could choose to be interviewed in person or via Skype. Although it has been suggested that video interviewing may be less effective for building rapport than face-to-face interviews (Weller, 2017), this approach may be more accessible for autistic people (Zolyomi et al., 2019). Indeed, all opted for Skype interviews. Audio recordings were transcribed verbatim. Within 3 weeks of the interview, and prior to analysis, participants were emailed their transcripts and given the opportunity to "member check" the content (Creswell & Miller, 2010). Three participants made minor amendments.

Analysis

We used a material-discursive-intrapsychic approach embedded within a critical realist epistemology (Tolman et al., 2014). This has been used extensively and effectively to explore women's embodied experiences in various contexts (Ussher, 2008; Ussher et al., 2019). Critical realism is a perspective that recognises the materiality (or lived experience) of the body, but conceptualises this materiality as being mediated by discourse, culture and psychological factors (Bhaskar, 2010). This approach was chosen because the focus on language facilitated closer examination of the interactions between the material body, psychological processes and culture than can be achieved through approaches such as interpretative phenomenological analysis or narrative methods, which are primarily concerned with subjective experience (Willig, 2007).

Some proponents of the neurodiversity movement consider distress and disability to be entirely socially constructed and may argue that critical realist approaches problematically locate the cause of disability within the autistic person (MacDonald, 2019). However, a strict constructivist stance would deny the existence (or materiality) of autistic traits, including positive aspects such as the capacity for intense fascination and enjoyment of sensory stimuli (Woods et al., 2018). Furthermore, although cultural discourses have been suggested to influence the extent of menopausal discomfort, this discomfort is experienced within the material body (Stephens et al., 2004). The experience of menopause is neither entirely biomedical nor entirely socially constructed. A critical realist epistemology would acknowledge social aspects (i.e., influence of the medical model, ableism and stigma (De Jaegher, 2013)), meanwhile ensuring that the potentially tumultuous material impacts of menopause for the body and mind are not lost amongst more abstract discussion of discourse (Bhaskar, 2010).

Analysis was informed by thematic decomposition approaches, which attempt to identify themes in language that reflect subjective positions taken up by participants (Stenner, 1993). The process of coding involved re-reading transcripts and assigning each line an initial code on the basis of its content. Each transcript was coded and analysed independently of other transcripts, and without consideration of the themes from other transcripts. Subsequently, the codes from the entire corpus of interviews were entered into spreadsheets and were consolidated by looking for higher-level constructs represented by clusters of similar comments (Yin, 1989). The two authors independently coded one transcript, and then compared notes to agree on a consistent and comprehensive approach to analysis. For the remaining interviews, the first author conducted the initial analysis and discussed the spreadsheet of themes with the second author, who verified them against the transcripts.

The planning and execution of the study were informed by various recommendations for quality and validity in qualitative research (Malterud, 2001; Shaw, 2010; Yardley, 2000). Reflexivity (Malterud, 2001) and sensitivity to context (Yardley, 2000) were addressed by identifying the personal, micro-social, and macro-social influences on interviewees' experiences, and by reflexively clarifying our own relationships to the issues. Critical realist approaches emphasise the importance of self-reflexivity: personal experiences and cultural discourse influence researchers as well as participants (Willis, 2019). Given that a 'double empathy' problem has foreclosed mutual understanding between autistic subjects and (often non-autistic) researchers (Milton, 2012), transparency about researchers' relationship to the autism spectrum is important (Howard et al., 2019). The interviewer and first author was a 22-year-old cisgender female student with no experience of menopause who received an autism diagnosis in adulthood. The second author was a 48-year-old neurotypical cisgender man. Throughout the processes of data collection and analysis, we reflexively engaged in iterative processes of "setting aside" and "engaging with" our subjectivities by reflecting on our "insider" and "outsider" perspectives, and how these may have influenced the analytic process (Shaw, 2010). During the interviews, nonverbal interactions that would not be evident from the audio recording were noted. Notes were taken throughout the research process as an aid to reflection on personal thoughts and wider reading. Both were referred to during analysis as a means of ensuring that interpretations were rooted in the data, and not unduly influenced by topics that were personally significant to the researcher. In relation to interpretation and analysis (Malterud, 2001), transparency and coherence (Yardley, 2000) were demonstrated by clearly explaining how themes were generated, and by showing how themes were grounded in the data. Commitment and rigor (Yardley, 2000) were promoted by the authors independently coding transcripts before conferring to ensure a rigorous and consistent process. Reliability was ensured by regular communication between the authors to resolve differences of perspectives on emerging themes. Impact and importance (Yardley, 2000) and transferability (Malterud, 2001) were demonstrated by showing how the results could inform better healthcare interactions for autistic people during menopause.

Results

Thematic decomposition resulted in the identification of three major discursive themes- Uncertainty about Changes, Growing Self-Awareness and Self-Care, and Navigating Support Options -each consisting of sub-themes. Each theme is described below and illustrated with quotes from the interview transcripts. Although these are presented as separate entities, the considerable overlaps will be explored further in the discussion.

Uncertainty About Changes

A discourse of feeling uncertain complicated participants' recognition of, and adjustment to, menopausal changes. This difficulty was attributed to insufficient prior information; societal discourses about menopause which were felt to be misleading; the timing of the autism diagnosis in relation to menopause onset; and long-standing difficulties interpreting bodily sensations within themselves which they retrospectively attributed to autistic traits.

Getting Ill?

Dora described uncomfortable physical and emotional changes: "When I turned 40, it was like everything started to go wrong" and was prescribed antidepressants. She viscerally described the arduousness of the experience: "It just felt like I was walking in mud for years... It was like a bad dream". "Brain-fog", a slang term for a symptom of temporary loss in mental clarity was contrasted with prior clarity of focus which caused Dora to question: "What is wrong with me? I'm an incompetent human". Lack of explanation for changes led participants to adopt a discourse of self-criticism: the cause of these participants' discomfort, rather harshly, was located within personal weaknesses. In hindsight, Dora attributed this disruption to a "very strong perimenopausal brain activity". Although this description of menopausal neuroscience appeared to be situated within a biomedical discourse, she made a distinction between discomfort caused by menopause and the status of being mentally unwell:

I don't see it as me being depressed. I'm not a depressed person, but clearly the signs were that something was not at the right level. I wasn't functioning at all.

She retrospectively opposed the medicalisation of her situation by doctors by questioning the assumption that the menopausal body is abject: doctors "tell women they are really sick, when actually what we are going through is a really difficult transition time". She recalled a particularly dismissive response from a medical professional who told her that discomfort during menopause was "all in her mind".

Ash, who was already receiving treatment for clinical depression, initially attributed menopausal changes to "a medication problem". Internalising this biomedical discourse delayed their recognition of menopause. However, for Ella: "the first thing that was kind of a flag for me was that I started getting worse anxiety symptoms". For her, a biomedical discourse relating to her existing anxiety diagnosis and medication was positioned as material marker which helped her identify this change.

Ash acknowledged the discursive tendency for menopause to be kept hidden: "nobody tells you this shit ... as a woman". Six of the seven participants described significant discomfort during menopause, a lack of prior awareness was described as making menopause additionally confusing for all participants:

If I'd known about it before-hand I'd be able to say, 'Oh yes, maybe the migraines were menopausal, maybe this was menopausal, maybe this was menopausal', but it's all passed me by because I didn't know about the menopause. (Isla)

Olivia reflected on the autistic tendency to experience awareness of bodily states as "either the hypo- or the hyper- ... We never fall in the middle". Isla considered that she may have simply overlooked menopausal symptoms. However, Grace described being unusually observant: "I noticed a lot of very subtle things that most people wouldn't", such as changes in body hair.

Autistic Traits Come to the Surface

Heightened sensory sensitivity is not a "classic" menopausal symptom, but it is an autistic trait that has been reported to increase during menopause (Moseley et al., 2020b). Olivia described confusion resulting from temperature regulation changes:

My body has all kinds of strange sensory reactions and um ... I don't read it particularly well at the best of times ... It was just another thing that annoyed me about my body.

Likewise, Nina felt "out of sorts and horrible... really confused" and doubted herself: "You start to think, 'Am I putting this on just because I want to get an [autism] diagnosis, or am I exaggerating?'". Nina's menopause was medically induced, and unlike Olivia, she was aware that she was undergoing menopause. However, neither had learnt that they were autistic at this point. Lack of awareness was positioned as adding to their distress. In hindsight, recognition of the combination of autism and menopause was positioned as a helpful explanation: "There is something in those hormonal shifts that brings [autism] to the surface ... that makes it more prominent" (Olivia). Ash described a visceral intrapsychic process akin to a flashback during perimenopause:

It felt like I was a kid again and lots of the memories from when I felt uncomfortable as a child were flooding back; it was strange. I started to have vivid dreams from stuff years and years ago about stuff that had bothered me. In the light of autism, which I now know about, it made sense.

Grace recalled becoming intensely tearful during perimenopause, which coincided with difficult personal circumstances:

I was with a guy who I shouldn't have been with, but I was often very, very upset about the way he was and the things he said and so on, so I was just crying, and you know, just overwhelmed with emotion a lot of the time.

However, in post-menopause: "Sometimes I want to cry, and I can't. I think, 'Oh, I should cry about that. And it would be good if I did. I'd feel better'. But it doesn't happen". She humorously attributed this shift to a mysterious disappearance of hormones, "I wonder whether you know, I joke I say, "Oh, I have no hormones, so I have no tears". However, she also considered an intrapsychic explanation for this change:

I worry sometimes, 'What have I become?'... what's the word? Have I become dissociated? I can't cry because I'm dissociated. I don't know. But I don't cry much now, hardly ever.

Dissociation is a psychological self-preservation response to severe stress (Knipe, 2018). Elsewhere in her interview, Grace explained that she had been "given an appointment to be assessed for PTSD". Her autism assessment process involved reflecting on (and medicalising) negative experiences:

It's all about the negatives, because that's how the diagnostic criteria. That's what they're looking for. They're looking for difficulties in, or impairments in. So, you're, you're filtering back over your life and you're going: 'Oh, bloody hell! Yeah, it's amazing I'm still sane!', if I am sane.

For many interviewees, distress was positioned as proportionate to real-life circumstances but was mediated by hormonal changes and reconceptualised in the light of a diagnosis of autism:

It seems like we ignored a lot of our traits, or just pushed through and didn't really recognize them. We appear more autistic to ourselves after we've received our diagnosis just because we have got the right perspective this time. But I do feel like - I do feel like it is ... worse than before. I just feel like the mood swings at everything I ... have always ... emotional regulation has always been an issue ... just feels like everything is amplified now. (Olivia)

Menstrual Changes: A Material Indicator of Menopause?

The materiality of menstrual changes was positioned as an objective indicator of menopause. For example, Ella noted: "You know what your cycle is normally and occasionally you have an unusual one, but this was definitely like every cycle was getting shorter, getting heavier, more painful". However, Isla was unable to reconcile her experiences with the accounts available to her, meaning that menopause was misrecognised:

No one else has told me that they don't have these symptoms ... The only symptom that I had was stop - my periods stopping ... And the first period I missed I thought, 'Oh, am I pregnant' ... and I thought 'No, I can't be!'

Grace discursively positioned this change as unsettling due to the autistic tendency to dislike disruption to usual routine:

It's very disturbing and, you know, now I understand why actually. You think you know, 'Four weeks, four weeks, four weeks', and then you're like 'What! No, that's not right!"

However, post-menopausal participants such as Isla noted that the eventual cessation of periods was a relief: "One less thing to worry about" (Isla).

Uncontrollable and Unpredictable Menopause

The unpredictability of menopause led many participants to position menopause discursively as separate to themselves. Olivia described her perimenopausal body as a force beyond her control:

My body does its own thing and I've got to go along with whatever ride it's taking me on that day kind of thing. But no, I don't feel like I have any control over it at all.

Although she was not aware of disruptive menopausal changes, Isla highlighted that "next week I might want to contact you and say ... 'ugh ... I've had an awful week ... menopause has hit me on the head'". Dora considered menopause to be an acceptable natural stage: "There is a real rhythm to life... I do not despise it", but hastened to add, "I hope it stays like this". Nina described a sense of relief that her medically-induced menopause was planned rather than "creeping up without me wanting it". Dora highlighted the importance of preparing autistic people for life transitions: "With autistic girls you need to plan for puberty way before puberty. It's the same with ageing and menopause". These quotes suggest that menopause would be more tolerable if participants knew what to expect.

Growing Self-Awareness and Self-Care

The arrival of menopausal symptoms in addition to other age-related factors was positioned as the catalyst for becoming more aware of personal wellbeing needs.

Pushing on Through

All participants described a lifelong tendency to overlook feelings of discomfort. For Nina, "It's been a bit of a theme to my life that I tend to push on through". Olivia normalised a life-long source of discomfort: "I've always had poor sleep". Increased difficulties during perimenopause were dismissed as "another one of those poor sleeping things". This capacity to be tolerant often harmed their wellbeing.

Accommodating Autism

Since menopause, Nina became aware that on a material level she was "needing recovery time a lot more", although she suggested that "it's possible I just didn't realise I needed it". Autistic identity enabled her to nurture her sensory needs-e.g., through music: "I almost feel my brain untangling". Ella described more "frequent meltdowns" since menopause but also reported being able to recognise their warning signs more effectively.

You get an aura ... and you feel like ... there's a migraine coming on. And you can either carry on what you're doing or you can run away, go and lie in a darkened room ... and I'm beginning to get a sense of autistic situations being a bit like that y-you begin to feel like everything's ... too much.

Her autism diagnosis gave her the legal entitlement and confidence to request accessibility modifications and felt less firmly obliged to "act normal" when overwhelmed: "It's not up to me to try and cover it up". Similarly, Grace commented: "I'm brilliant at masking and actually, some of the time I really rather enjoy it... the question is whether I choose to... anymore". She reflected on the sustainability of her pre-diagnosis persona: "What I thought was my best and most hilarious self was draining, basically pulling the plug out on my energy". Recognition of the health benefits of unmasking lead her to question her identity: "Who the hell am I?". Conversely, Olivia recalled:

When I accepted my self-diagnosis, which was just before I got my official diagnosis, my depression lifted greatly because understanding had come in, and a lot of stuff I was depressed about was to do with not understanding my place in the world.

Increased self-awareness was discursively attributed to surviving menopause itself, rather than to her autism diagnosis:

I think it's really important that I went through it as I have a greater sense of who I am. Had I skipped all of that by some, whatever, I would not be this self-aware, I'm pretty certain about that.

One consequence of self-awareness for her was choosing clothing that suited her sensory and temperature regulation needs. Nurturing her material body in this way was positioned as being conducive to a "reflective and contemplative" state. Engagement with strength training also helped her to embody a sense of being "strong, emotionally and physically" which allowed her to reject discourses of defeat and infirmity during this "time of struggle". Newfound self-awareness enabled her to reduce her previous tendency to put others' needs above her own: "I'm very good at problem solving but I was always using that skill to help other people... I was not able to do that for myself because I wasn't self-aware". Menopausal identity was positioned by her as a cause for celebration: "Post-menopausal women are taking over the world, by the way!".

Awareness of Age and Aging

Grace embodied conflicting discourses about ageing and self-awareness. She described "trying very hard to manage my energy in a different way" and had recently become aware of just "how terrible my self-awareness is", a multi-layered intrapsychic process of becoming self-aware of her lack of self-awareness. For her, this shift was a necessity for managing increasingly challenging material circumstances linked to ageing: "I live with pain. It's tedious ... I've been off work ... my salary will be halved". However, she described empowering aspects such as "being an older woman in public and having more authority" and subsequently reacting differently to injustice:

In the past I think that my body would react, and my body would go "Aargh!" but I would think 'Don't do anything. Don't do anything. Don't show any feeling', whereas now, I don't necessarily show that I'm annoyed, but I will try and do something about it.

Additionally, she derived enjoyment from subverting younger people's assumptions about older women by nonchalantly revealing her numerous piercings: "I think it's absolutely hilarious! 'I'm not what you thought I was!'". Her autism diagnosis enabled her to "feel OK to show that I was different".

Initially, Ash embodied negative discourses about ageing: "Periods mean young and fertile and now I'm a little old crone". However, Ash gradually subverted this positioning by accepting their "oncoming crone-ness". By "figuring out the autism stuff, and the menopause", their life-stage became "not really a mid-life crisis, more of a new wave". Additionally, previously held priorities were put into perspective: "I gained weight around the middle" during menopause but "[I] don't care about that kind of thing anymore".

Ella positioned self-awareness and wellbeing as things that improve with age. She noted: "I've actually looked after myself better and have a better understanding of myself and have been happier and had better mental health as I've got older", but she also acknowledged that autistic ageing "could be quite a scary prospect" for those who are not in a "privileged situation", i.e., financial insecurity or limited social support. Lack of awareness, specifically about autistic ageing, was positioned as a concern: "We need to know what autism is like in the older person ... especially if you have mental health difficulties" (Isla).

Navigating Support Options

Most participants described conflicting or absent information about menopause management, particularly around the pros and cons of medical treatments. Peer support and NHS services were positioned as being helpful and effective by some participants, but inaccessible and frustrating by others.

Natural Versus Medical Management of Menopause

Biomedical approaches were positioned as being ominous and dehumanising by some participants. Dora explained that: "I wouldn't have had, say, a hysterectomy, unless it was all falling off and I was dying, so I have most of me intact and I want to stay that way". However, she acknowledged the reasons why she and others would consider medical approaches: "When in the middle of something I am very much like, 'This is terrible, you must surgically remove everything!'". It is interesting to note the extreme terminology and images she deployed. Indeed, extreme disruption lead participants to reconsider their stance:

I was always one of those people who was like 'No, I'm not going to take hormones, it's all a natural process'...and now I'm sitting here and going ... I haven't slept through the night in months" (Olivia).

However, some resisted an anti-medical discourse. For example, Ella advised that there is no reason to "put up with" discomfort. She positioned menopausal symptoms biomedically: as indicative of hormones that are "out of whack", noting that Hormone Replacement Therapy (HRT) restores homeostasis and had helped her to accommodate her neurodiversity and manage her work life: "I'm still autistic ... I'm still not like ... superwoman, but ... I'm much better able to do a sensible level".

Nevertheless, the material discomfort of HRT side-effects was positioned by some participants as being as disruptive as menopausal symptoms themselves: "I woke up one day and said, 'I can't live like this! it's making me brain dead!'" (Dora).

Interactions with Clinicians

Dora positioned the medicalised approach adopted by the NHS as inadequate, because "nobody was looking at the whole person and their experiences". Temporary staffing meant that care "all got a bit separated" for Ella. After many years of having gynaecological issues dismissed, Nina received care from a specialist NHS service and recalled "feeling heard and listened to for the first time". Isla described a positive working relationship with her GP who made autism-specific accommodations such as longer appointments and writing take-home notes because "he knows I can't retain the information".

Grace, who has Ehlers Danlos Syndrome, a physical condition which frequently co-occurs with autism and increases the risk of organ prolapse (Eccles et al., 2012) was confused by contradictory advice from different doctors which complicated her treatment decisions:

I had the gynaecologist at [hospital 1] saying horrible things to me about, you know, 'You must come off the HRT and blah, blah, blah'; And then when I went to [hospital 2] she said, 'Why didn't they give you a hysterectomy? ... She said, 'It's keyhole surgery, it's not a big issue'. Then I was like, 'Oh, OK, I don't know what to think', because I've got, "It's not a big deal. It's just keyhole surgery' ... and 'You're going to get bladder and rectal prolapse'.

Subverting Taboos

Most participants alluded to the discursive positioning of menopause as a taboo topic. Dora described regularly challenging this societal custom:

I just say it in my everyday conversations, 'Oh my God! It must be my hormones making me so hot'. They are like 'OK!'. I think I have to be open about it because otherwise we are so embarrassed about it, it's just a fact of life.

She attributed her lifelong tendency to subvert taboos around gynaecological health to her neurodiversity: "I am now putting that down to being autistic really". Additionally, she took it in her stride to challenge sexist assumptions held by doctors: "I refuse to be patronized by fully grown men who are overpaid... 'Women of a certain age' what does that even mean?".

For more practical reasons, Ella subverted discourse of menopause as an "embarrassing" topic by explaining menopause to her teenage sons: "You're having hormones too, right? ... That's why I'm so ... whatever ... inept, incompetent, late, muddled". Conversely, Grace positioned menopause secrecy as having an important survival function: "a flash of annoyance turns into a hot flush. So, the problem with that is it reveals feelings that you might be trying to conceal". Thus, she was "very, very careful not to tell" not to reveal this to problematic men in her life. For her, menopause remained, "a sort of unspoken understanding between women of a certain age. If you suddenly get very hot you go like this, [mimes fanning]".

Peer support

Peer discussions were positioned as a means of sharing practical advice: Ash was able to draw upon their lived experience of distress in order to offer support to a neurotypical friend who was struggling emotionally during menopause: "She's had good mental health so of course her menopause symptoms are a real bolt out of the blue for her. It was nice to be able to reassure her". Peer conversations were especially valuable as "our mothers haven't told us anything ... so we need to talk to each-other" (Ash). In contrast, Isla felt that this topic "does feel very personal"; she suggested that conversations about menopause between women have a bonding function which was not always desired: "I think she wants to get to know me better so she's talking about personal stuff but... she's not the right person to talk it over with".

There were conflicting perspectives about the merits of peer discussions. For Ella, open discussions were valued, but she also described being mindful of others' comfort and her neurodivergent tendency to overshare:

It's maybe that autistic thing of - of ... 'Oh this thing is happening to me right now. I need to give you every single bit of information about it'. So, I'm trying to be a little bit wary of figuring out whether someone actually wants to talk.

Ella described social media as a uniquely suitable platform for autistic people to "join in and write a little or a lot depending on how they're feeling". However, she cautioned that these settings could erupt into "arguments and infighting about small issues ...Something that isn't core to supporting each other". Social media were positioned as extremely affirming by Nina:

It's not just in my head and it's not just irrelevant. Sometimes I think I'm just making a fuss, but then when I to talk to someone else they are like 'I have the same thing'.

This was especially helpful as she did not know many people in real life with similar experiences. Ash commented: "I've had more information off [social media] than my doctor". Patient knowledge was positioned as more thorough than that of professionals: "I've found out myself and gone back to them with my advice" (Ash). For Isla, the "first point of call would be the internet ... then my husband ... then the doctor". Social media were a useful platform for her to discuss physical health differences that other autistic people were also experiencing: "There's another lady on [social media] with the same combination [of conditions].". However, she felt "bereft" of evidence-based advice. Peer experiences and support were appreciated but this was partially in in lieu of relevant medical information which was "little and far between" (Olivia). As Nina put it:

If I'm unsure or worried about something I like to learn. For me, reading a book would be the biggest thing ... and then having the opportunity to reach out to other people.

Olivia identified societal reasons for an absence of information: "When it comes to medical research, women are so often ignored", and noted that autism research is predominantly "directed towards children"; "It takes so long for it also to trickle down to professionals who seem to know even less than you know".

Discussion

This study was designed to examine how autistic people conceptualise menopause and to consider the implications of this for wellbeing, accessing support, and identity. Thematic decomposition revealed three discursive themes: Uncertainty about Changes, Growing Self-Awareness and Self-Care, and Navigating Support Options. These are discussed below in order to consider how the present study relates to and extends existing knowledge.

The theme "Uncertainty about Changes" referred to the difficulties identifying and understanding the physical and emotional alterations they were undergoing, particularly in the early stages of menopause. Autistic traits such as emotional and sensory sensitivity were heightened around menopause: menopause-specific changes such as hot flushes were described viscerally and were identified as being additionally uncomfortable due to their autistic sensory sensitivities. Limited understanding of menopause or indeed awareness of their autism was constructed as further complicating their experiences. These accounts are consistent with the experiences of autistic participants in Moseley et al.'s ( 2020b) study. However, in line with a minor finding of Moseley et al. ( 2020a), post-menopausal participants in the present study highlighted some positive changes: cessation of menstruation was considered a relief, and this is consistent with the finding that autistic people often have difficulties managing menstruation (Steward et al., 2018).

The theme "Growing Self-Awareness and Self-Care" covered participants' accounts of events that occurred for them during midlife which were positioned as facilitating a shift in how they viewed themselves. All participants learnt of their autism in adulthood: for most, this provided a primarily positive and informative explanation for their lifelong differences. One participant did not consider her autistic identity to be especially significant, but she attributed an immense increase in self-awareness to her endurance and survival of a tumultuous menopause. Newfound self-awareness enabled interviewees to reconsider lifestyle- and appearance -related priorities, leading to the subversion of internalised cultural discourses around ageing and femininity. In the general population, positive constructions of menopause have been associated with positive perceptions of ageing such as increased wisdom and independence (Winterich & Umberson, 1999). In contrast, qualitative interviews with learning-disabled women revealed that menopause was experienced almost entirely negatively; favourable aspects of ageing such as independence were reported to be largely absent from their lives (McCarthy & Millard, 2003). Likewise, women with physical disabilities have described menopause as a "back-burner issue", in relation to more pressing concerns (Harrison & Becker, 2007). Participants in the present study acknowledged that practicing self-care was important but was contingent upon favourable socioeconomic circumstances and the availability of appropriate advice and support.

The theme "Navigating Support Options" covered the various challenges that were encountered when attempting to access support. Although several participants described helpful interactions with clinicians, negative constructions were positioned as being linked to the absence of professional awareness of the healthcare and communication needs of autistic adults. Likewise, Moseley et al. ( 2020a, 2020b) reported that autistic people perceived a frustrating lack of professional support and knowledge and highlighted a need for better resources. In the general population, many women report feeling that their gynaecological complaints have not been taken seriously by practitioners (Tomlinson et al., 2017). Although not quoted in this paper, many of the participants described immense difficulties in trying to access an autism diagnosis. In particular, autistic people assigned female at birth may have to contend with doubt about the validity of their autistic identity as well as barriers to accessing support for their health and wellbeing concerns.

Most participants in the current study described engaging in a process of researching and constructing autistic menopausal wellbeing for themselves. Information from other autistic people on social media partially filled this support and knowledge gap. Shared experiences and understanding have been identified as an important feature of friendships between autistic people (Crane et al., 2020), and many women in the general population value peer discussions about menopause more than interactions with medical practitioners (Kenen et al., 2007). However, several participants in the present study highlighted that peer support was an inadequate substitute for evidence-based information and guidance. In terms of the type of information that is preferred, one study found that information about day-to-day autistic wellbeing was considered more important than information about causes (Pellicano et al., 2014). In the current study, biomedical approaches were constructed as being acceptable to participants on the premise that their ethos was "practical" rather than pathologizing and patriarchal.

Across themes, the topic of masking and camouflaging autistic traits was raised by participants, a proclivity that has been linked to poorer mental health (Cage & Troxell-Whitman, 2019). Moseley et al. ( 2020b) found that menopausal discomfort itself was presented as "cracking the mask of adaptive functioning". Participants in the current study described lifelong difficulties recognising and describing internal bodily states, reflecting the common autistic trait of alexithymia (Poquérusse et al., 2018). This misrecognition led to an intrapsychic process involving self-doubt, frustration with their bodies, and attempts to ignore (or mask) their discomfort. Research has tended to define masking and camouflaging narrowly, solely in relation to social identity (Perry, 2019). However, participants constructed "unmasking" as encompassing internal processes in addition to social behaviours, such as using time alone to accommodate their sensory needs. Furthermore, although prior research has found alexithymia to be a relatively stable trait (Mikolajczak & Luminet, 2006), participants positioned self-awareness as something that could be cultivated over time: their masks were not cracked but purposefully chiselled off.

In the general population, women who are surrounded by medical discourse are more likely to report negative physical and psychological symptoms themselves (Ussher, 2008), suggesting that the biomedical discursive positioning of menopause may be harmful. However, when retrospectively describing menopause during their interviews, participants in the present study generally adopted a medical discourse, as illustrated by their identification of the role of "hormones", and their reports that they were experiencing "symptoms". This biomedical explanation was positioned as reassuring and contrasted to prior uncertainty. Although this could be attributed to an autistic tendency to dislike ambiguity (APA, 2013), a study of Japanese women found that despite menopause being positioned predominantly as a psycho-social rather than medical transition in Japan, factual information about bodily changes was empowering and helpful (Satoh & Ohashi, 2005). A study of learning-disabled women revealed that many experienced uncomfortable changes around menopause, but that until they were interviewed, they were unaware that menopause was an explanation for them (McCarthy & Millard, 2003). Similarly, limited prior awareness of menopause among autistic participants in the current study meant that these participants were somewhat shielded from apparently harmful medical discourse. However, a dearth of accessible medical information appeared to be problematic.

There is tentative evidence that autistic people can be especially sensitive to medication side-effects (Matson & Hess, 2011). There is presently no empirical research into the autistic experience of medical menopausal management. HRT was positioned as helpful for one participant but caused intense side-effects or additional complications for four other participants. Future research could utilise participatory methodologies to investigate the suitability of existing medical and non-medical treatment options and generate practical recommendations for healthcare providers.

This was the first study to investigate the autistic negotiation of menopause using a discursive approach which enabled nuanced exploration of participants' positive and negative constructions. In order not to detract from the focus on language and participants' own perspectives, relatively few demographic details were taken-e.g., ethnicity or psychometric scores. However, lacking this information may limit the generalisability of findings: experience of menopause appears to differ between ethnic groups (Sayakhot et al., 2012), but ethnic minorities are under-represented in autism research (Shaia et al., 2019). Furthermore, the online method of recruitment meant that respondents were likely to have been searching for information about menopause already, perhaps due to having particularly difficult menopausal experiences (Moseley et al., 2020b). Participants were extremely insightful and knowledgeable about autism: scientifically literate and articulate "expert patients" may not be representative of the autistic population as a whole (Department of Health, 1999) which may further limit the generalisability of the findings.

Although it is not possible to generalise to the diverse autistic population from this small sample of late-diagnosed autistic people, the analyses shed light on some of the ways that the autistic menopause is negotiated. However, the findings also highlight a need for more research into how best to support autistic people before and during menopause.

Conclusions

Menopause was positioned by autistic participants as a complex transition time. Negative constructions were associated with uncertainty and difficulty identifying the causes of changes, which for most participants were physically and/or psychologically uncomfortable. Positive constructions were associated with increasing self-awareness as a result of survival of menopausal discomfort itself and late-diagnosed autistic identity. These informed subsequent coping strategies. Evidence-based, accessible information was highlighted as necessary, empowering, and helpful. Clinicians should ensure that they are aware of the communication and health needs of autistic people, and do not convey the implicit or explicit message that their experiences of menopause are "just in their heads" or "irrelevant".

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Acknowledgments

We are grateful to our study participants for giving their time and sharing their experiences.

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Author notes

Richard O. de Visser

Present address: Department of Primary Care & Public Health, Brighton & Sussex Medical School, Falmer, BN1 9PH, UK

Authors and Affiliations

School of Psychology, University of Sussex, Brighton, UK

Marianna Karavidas & Richard O. de Visser

Contributions

Conceptualization: Marianna Karavidas, Methodology: Marianna Karavidas and Richard de Visser, Formal analysis and investigation; Marianna Karavidas and Richard de Visser, Writing - original draft: Marianna Karavidas; Writing - review and editing: Marianna Karavidas and Richard de Visser, Resources: Richard de Visser, Supervision: Richard de Visser.

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Correspondence to Richard O. de Visser.

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Karavidas, M., de Visser, R.O. "It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions. J Autism Dev Disord 52, 1143-1155 (2022). https://doi.org/10.1007/s10803-021-05010-y
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"It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions - Journal of Autism and Developmental Disorders

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Physical and psychological changes during menopause can be especially tumultuous for autistic people: difficulties with sensory sensitivity and daily functioning may be exacerbated. Through individual interviews, we examined the language used by seven peri- or post-menopausal autistic people to construct their experiences, and to consider the implications for their wellbeing and identities.

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Unmasking Autistic Menopause, a performance and presentation for the 3rd annual Menstruation Research Network Conference, Liverpool John Moores University, 29 05 24. Rose Matthews.  

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Unmasking Autistic Menopause MRN conference Rose Matthews 29 05 24 

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Unmasking Autistic Menopause: my perfect storm dress. Rose Matthews.  

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Unmasking Autistic Menopause: my perfect storm dress. Rose Matthews.  

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This dress is part of a costume I made for the Menstruation Research Network Conference 2024. It displays findings from A Perfect Storm: Autistic Experiences of Menopause and Midlife, a paper published by the Bridging the Silos, Autistic Menopause Study team.

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Tie-dyed grey and white dress with handwritten words and phrases in black, blue, red and purple. 

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'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Alexandra Leedham et al.   

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'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood. Alexandra Leedham et al.   

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Abstract

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

Introduction

Receiving a diagnosis on the autism spectrum is an important milestone in an individual's life. However, the diagnostic process can be experienced as challenging and arduous ( Crane et al., 2018). A recent survey indicated that less than half of the adults receiving an autism diagnosis in the United Kingdom were either 'very' or 'quite' satisfied with the process ( Jones, Goddard, Hill, Henry, & Crane, 2014). Diagnosis typically occurs later for females compared to males, particularly for females who are of average to above average intellectual ability ( Begeer et al., 2013; Siklos & Kerns, 2007). Understanding gender differences and lifespan issues have been identified as priority areas for research by autistic adults ( Pellicano, Dinsmore, & Charman, 2014). Work on understanding the experience of being autistic has been emerging in recent years (see DePape & Lindsay, 2016 for a review) though to date, there has been little research that specifically focuses on older females. Hence, their experiences and needs are not currently well understood.

There is strong evidence that the experience of being autistic differs between males and females ( Gould, 2017; Lai & Baron-Cohen, 2015). Approximately three times more males than females are currently diagnosed ( Loomes, Hull, & Mandy, 2017). It has been suggested that there is potential for females to be underdiagnosed based on traditional assessments ( Knickmeyer, Wheelwright, & Baron-Cohen, 2008; Rynkiewicz et al., 2016). It is problematic that knowledge and conceptualisations of autism spectrum conditions (ASC) are largely derived from male samples ( Gould & Ashton-Smith, 2011; Kreiser & White, 2014; Mandy et al., 2012) and there is emerging evidence that females are more likely to 'internalise' their difficulties, presenting as anxious, passive, depressed or with eating difficulties ( Attwood, 2007; Mandy et al., 2012). Furthermore, females often use compensatory strategies to 'mask' or 'camouflage' their difficulties ( Hull et al., 2017; Tierney, Burns, & Kilbey, 2016), allowing them to 'blend in' to social situations with hypothesised functions including aiming to reduce shame or bullying and attempting to cope with the social world ( Bargiela, Steward, & Mandy, 2016). This can take significant cognitive and emotional effort and impact negatively on mental health ( Bargiela et al., 2016) particularly if camouflaging is engaged in across multiple contexts or if an individual is engaged in switching between camouflaging in some contexts but not in others ( Cage & Troxell-Whitman, 2019). Thus, based on historical understandings of ASC, the needs of females are often difficult to recognise and may appear subtle, or not prototypically autistic, to general practitioner (GPs) and educators who are responsible for referring individuals for assessment.

Despite recent increased interest in reporting the experience of autistic adults, to date there has been very little research specifically on aging and autism ( Happé & Charlton, 2012). Of the research that has focused on middle to late adulthood, studies have included adult participants who received a diagnosis in childhood or early adulthood (e.g. Griffith, Totsika, Nash, & Hastings, 2011), have mostly focused on males ( Elichaoff, 2015; Hickey, Crabtree, & Stott, 2018; Punshon, Skirrow, & Murphy, 2009) or have not discussed gender as a factor ( Lewis, 2016). Thus, there remains a scarcity of research that investigates the specific experiences of adult females, especially those in middle and later adulthood. In adult ASC diagnostic services, the gender ratio is lower (approximately two males to one female) than in child services up to 11 years (approximately five males to one female) suggesting that females tend to be missed earlier in life ( Rutherford et al., 2016). Therefore, focusing research on older females will likely lead to improved understanding of a more representative sample of autistic females than observed in research solely investigating younger age groups.

Two recent studies have begun to address the gap in understanding of the adult female experience of diagnosis. An online study by Lewis (2017) demonstrated that females receiving a diagnosis of ASC in adulthood reported significantly more severe barriers to diagnosis than males. The nature of barriers experienced were broad ranging with 'concern that I will be evaluated but will not be diagnosed with ASD because of my gender', 'difficulty finding an ASD specialist who also specializes in my gender' and 'concern that I will be told I am 'making up' symptoms' demonstrating the largest difference in mean severity between males and females. The prevalence of these issues is concerning and indicates that, currently, autistic women feel misunderstood. Bargiela et al. (2016) investigated the experiences of adult females diagnosed between 19 and 30, noting that late-diagnosed women tend to express elements of the female autism phenotype that are under-represented in samples of those identified in a timely fashion, thus providing insight into how such characteristics led them to being missed by clinical services earlier in life. The females in Bargiela et al.'s (2016) study described misunderstood needs and ongoing mental health difficulties and findings suggested camouflaging behaviours, internalising and stereotyped understandings influencing later diagnosis. However, to date, no qualitative interview studies have specifically focused on the experiences of females receiving their diagnosis in middle to late adulthood. Given what is known about the likelihood that females' needs are under recognised ( Gould, 2017) and their support needs often misunderstood and misattributed to different diagnoses ( Attwood, 2007; Eaton, 2018), a comprehensive understanding of the experience of older autistic females is needed. Thus, the goal of the current study is to better understand the lived experience of autistic females who receive a diagnosis in middle to late adulthood.

Method

Methodological approach

This study employed a qualitative design, using Interpretative Phenomenological Analysis (IPA) with semi-structured interviews. IPA studies enable focus on subjective accounts of specific lived experiences of the individual, and how individuals respond to and interpret these experiences (e.g. Macleod, Shepherd, & Thompson, 2016; Pietkiewicz & Smith, 2014; Smith, Flowers, & Larkin, 2009). Data are analysed via an in-depth iterative process where the researcher engages in a 'double hermeneutic' process, making sense of how individuals make sense of their world. The analytic process is designed to give a voice to individual participants, by providing an interpretative account of their experiences in their unique context ( Larkin & Thompson, 2012; Larkin, Watts, & Clifton, 2006; Smith et al., 2009). Ethical approval was obtained via the Integrated Research Application System (IRAS, 218102) and from Sheffield Health and Social Care NHS Foundation Trust for governance.

Participants

Participants were 11 female adults who had received an ASC diagnosis at or over the age of 40 years. Recruitment was via a local NHS diagnostic service. Participants were excluded from taking part in the study if they lacked capacity to provide consent, were born male (i.e. individuals were not included if they had transitioned from male to female), did not identify as female, and were unable to speak English. See Table 1 for demographic information.

Participant demographics.

Procedure

Three autistic adults were consulted via the local NHS diagnostic service when developing the interview schedule. The main adaptations based on these discussions related to prompts to support understanding. Participants were interviewed in person by the first author. The interview schedule was developed based on the aims of the project and in line with methodological guidance ( Larkin & Thompson, 2012; Smith et al., 2009). Previous research findings and interview questions from Punshon et al. (2009) were used to support this development. The main interview questions are listed in Table 2. Interviews lasted between 35 and 95 min. The interview was recorded using an encrypted digital audio recorder. Participants were debriefed at the end of each interview.

Analysis

Following each interview, notes were made by the interviewer to consider non-verbal interactions, emotions, and personal thoughts as part of the researcher reflexivity process. These notes were referred to when undertaking the analysis to ensure the results were drawn from the data and to support transparency. The interviews were transcribed verbatim. Transcripts were read alongside recordings and initial ideas noted down 'line by line' on the transcript in the right hand margin. Notes focused on linguistic processes, conceptual ideas and descriptive comments made by participants. Next, tentative emerging themes were noted in the left hand margin of each transcript. Then, themes were grouped together with the use of notes and conceptual maps, based on their characteristics and given initial codes for all transcripts. Data were analysed as a whole by exploring overlapping themes, concepts, exceptions and clustering themes alongside theory and literature. This continued until a list of overarching 'superordinate' and subthemes were developed. The contribution of participants to each theme was recorded. An independent audit of each stage of the analytic process was conducted on three of the transcripts by a peer to ensure a high standard of rigour.

Results

Analysis of the data produced four superordinate themes, along with sub-themes. These are specified in Table 3 and discussed below. All participant names are pseudonyms used to maintain anonymity. Some quotes have been edited to support clarity for the reader and missing data are represented by the use of ' ... '. Additional explanations of points are included within '[ ]'.

Emergent themes and sub-themes, including the number of participants mentioning each.

Theme 1-a hidden condition

This superordinate theme considers the hidden nature of ASC in females, including attempts to make sense of themselves in a world comprised of a myriad of 'norms' and expectations.

Pretending to be 'normal'1 and fitting in

Efforts to 'fit in' were influenced by several factors, including confusing social interaction attempts and perceived failures. For some, 'unsuccessful' connections led to internalised beliefs that they were ' wrong', ' broken' or ' bad ' (Alice, Olivia, Lily). This appeared to relate to a need for acceptance that at times was so strong, some participants took on a persona that was ego dystonic in order to fit in:

... it started at school and it went on to college as well ... [I wore] different clothes to everything that I wore at home ... I hated this person that I put on. (Hannah)

Women had several motivations for disguising their true selves. These included attempts to develop relationships. For others, the aim was to blend in and not appear 'different':

I never felt like I fitted in anywhere ... other people just seemed so - like their lives have always seemed much easier ... they've just seemed to do things without the whole thought process that I have to go through.(Ruby)

Strategies were developed to try to cope in a social world. Some appeared to be unconscious or less deliberate. Others were practised with the aim of learning social rules and appearing 'normal' when making comparative evaluations to people who appeared to be part of the social norm or 'in-group'. These strategies were effortful and sometimes avoidance of social contact was reported as being a preferable strategy. For many, pre-diagnosis, hiding or mimicking served a survival function. However, the consequences of doing so were complex, with some feeling deeply unhappy and exhausted. In part, this was due to many attempts not appearing successful, leaving participants feeling on the periphery despite considerable efforts.

Mental health and mislabelling

Experiences of mental health difficulties were expressed and, for some, this was associated with complex family histories, trauma, struggling in school, and bullying. Participants often reported that their experience was not understood by professionals. Lily described seeking support within mental health services leading to several diagnoses which did not explain her experiences. Failure to find an appropriate understanding or formulation added to the sense of confusion. This appeared to factor in her exhaustion with life, and attempts to end her life:

[Clinician] would say 'oh, you've got borderline personality disorder' ... I explained to him exactly why I wasn't BPD ... I wasn't getting any answers, I just stopped going. I just stopped asking for help, I just stopped, you know, looking for answers. (Lily) I was exhausted trying to figure it out ... why things were so different for me, and ... by the time I had got to that diagnosis, I was already half dead, I was already in a functioning depressed state. (Lily)

Participants described not only significant ongoing battles with their mental health, but this being entwined with a battle to understand themselves. Within their descriptions is an implied power imbalance where labels were enforced upon them. When receiving (non-autistic) diagnoses, some described self-doubt, struggling to trust their own judgements even when they knew the suggested diagnoses did not adequately describe or help them:

... got to a point where I was almost convinced that they wanted to be right and I'd actually buried some deep trauma and I had no memory of it and I started questioning the whole - like everything. (Mia)

As well as resulting in missed support opportunities and misattributed blame, participants' experiences likely resulted in ongoing confusion about identity. Many appeared to have internalised unhelpful messages, leading to a devalued sense of self and strongly helped beliefs of being fundamentally ' mental' (Kate) ' wrong' (Alice, Olivia, Celia) or ' defective ' (Lily, Alice, Mia).

Theme 2-the process of acceptance

This superordinate theme describes participants making sense of their diagnosis, grieving and adjusting, alongside re-experiencing memories with a new understanding.

Initial reactions and search for understanding

The experience of the diagnostic process was described. The assessments were often intensely emotional, ' sad' (Ruby) and even ' harrowing ' (Olivia). Many experienced anxieties about the unexpected and fear that they may receive no further answers. For others, it was painful to re-experience emotions associated with past experiences.

Some had spent a long time considering what the outcome may be and their initial reactions acted as confirmation about what they had been researching pre-diagnosis, providing a sense of relief, calm and validation. For some, this was coupled with a sense of ' vindication' (Alice), that experiences they were ashamed of could be explained. The relief described across the data included a ' eureka ' (Lily) moment for some, a realisation that diagnosis allowed them to end the arduous search to understand how they experienced the world.

Some described conflicting feelings initially. One, of relief and at times, ' elation ' (Olivia). But also frustrations about what this might mean for their sense of identity and the potential for diagnosis to be limiting forced them to question themselves:

... I thought 'am I just anything other than these symptoms?' Um, that really upset me ... I sort of started doubting my ability to do my job. (Celia)

For Elizabeth, one of the more difficult emotions was a feeling of shame:

... kind of ashamed of myself because I was like 'oh, this isn't a nice thing, because it's happened at a late age '.

Her description suggests a fear about what being diagnosed at her age might mean. This may be exacerbated by the fact that being autistic was never something she had considered and seeking a diagnosis was instigated by others. Thus, receiving a diagnosis required a significant shift to a new way of thinking about who she now was.

For many, the diagnosis created a springboard for learning and understanding with several participants describing an active process of researching what autism meant for them:

... I got to work ... learning everything I could ... reading everything ... I know everything there is now, ha, I read everything. (Lily)

Lily's description suggests a focused approach. For Olivia, the process of understanding the diagnosis provided her with a sense of purpose and possibly control over developing a new understanding of herself in the world:

... it gave me a sense of purpose, it was ... 'that's why I don't understand all of this, now I can go and research why I don't understand that'. And there was that sense of something new and something new to research.

Alongside researching, some found connecting with others helped to develop their understanding. This included accessing groups with other autistic adults. For years, the understanding of the self had been limited and at times negatively prescribed by others. Research and connections provided concrete information participants could relate to and autonomy in this meaning making process.

Reliving life through a new lens

Several participants described a process of looking back, reliving their lives with a new perspective after diagnosis. For many, this happened almost instantly and for others, continued several years later. The metaphorical lens that participants had previously viewed their lives through had been coloured in part by the fact that they did not understand their experiences. Some participants described reliving past experiences as a process that was somewhat out of the conscious awareness in a way that took them back to that time and magnified those memories:

... your life flashes before your eyes ... thousands of memories coming back, constantly of 'oh, I remember when this happened ... that's why I had a meltdown and couldn't understand why'. (Alice)

In the moment, a different understanding of themselves had likely shaped participants' reactions to those experiences and to how they thought of themselves in the social world. To experience this and to describe it during the interview was emotional for several participants:

It's good ... at least now I understand why I've felt the way I have a lot of the time and why I've been the way I am a lot of the time as well. Sorry, it's making me really emotional. (Ruby)

Although these revelations in light of diagnosis felt positive, both quotes suggest a sadness and pain associated with not having these understandings earlier. With those, these life experiences may have been more manageable and provided answers to things that in the moment were confusing and at times devastating.

For some participants, reliving the past allowed them to shape interpretations and of others in the present:

... taking my daughter to clinics ... I'd say, 'I think it's because of this' and I'd explain round it and they'd be like, 'wow, oh, that's really interesting and I think that you're absolutely right'. (Hannah)

For Hannah, reflecting on her childhood helped her to express to professionals what her daughter (also autistic) may be experiencing. Hannah was experiencing an ongoing battle for her needs to be recognised by certain services. Feeling powerless, increasing the knowledge of others allowed her to elicit some control over how her daughter was interpreted and supported.

Grief and reflections on the past

Although the expression of grief was unique to each participant, the experience included several common emotional elements. Many participants explicitly referenced their experience post-diagnosis including a grieving process. Most portrayed a sense of sadness for their pre-diagnosis self and the significant struggles which may have been easier had their needs been understood:

... I felt really bad for myself as a child ... blaming myself for things ... not being good enough ... or being slow and not like everybody else. (Hannah) ... to think that's how that child was treated. It's really sad. (Ruby)

Some described current feelings of ' anger ' (Marie) that their difficulties were not understood earlier. For Elizabeth, learning that others had suspected she was autistic, exacerbated this anger about what might have been with an earlier understanding:

'[she said]'I always kind of thought you might have autism'. And I didn't say to her, but I thought, so why didn't you do anything?

Many participants felt that through learning and understanding what autism meant for them, and through new experiences, they had moved overall to a place of self-acceptance. However, grief was a fluid and ever changing process including many experiencing fluctuations in mood and periods of loss and fear about the lifelong nature of autism:

... you sort of realise that you're stuck like this forever really, so that's a bit ... It's a bit overwhelming ... I'm going to struggle with things for the rest of my life, that's hard. (Celia)

Theme 3-the impact of others post-diagnosis

This superordinate theme explores participants' interpersonal experiences post-diagnosis and the impact on their lives in several settings.

Initial reactions of others

Some shared their diagnosis immediately, while others were more cautious about potential reactions. Some had positive experiences, leading to a feeling of gratefulness about being finally accepted for who they are. This included continuing to be treated as individuals by the important people in their lives. For others, this highlighted a contrast to their earlier experiences:

... blessed to have such lovely people around ... care enough about me not to be bothered by my weird quirks and funny ways ... It makes a change after years of bullying and being penalised for being odd. (Merrell)

For some, an openness of important others to understand what it meant for them to be autistic provided opportunities to develop communication. For Celia, this allowed for positive relationship changes as her husband became more attuned to her needs:

... he got really into researching it ... it's really improved our relationship because he's realised now that a lot of the arguments we had were me misunderstanding what he'd said and him misunderstanding how I'd reacted.

In contrast, some participants found others being unsure what to do with the information or feeling let down by unhelpful and ' patronising ' reactions (Olivia, Marie). Mia's ex partner's approach had the potential to leave her feeling self-conscious or that her behaviour somehow needed modifying to meet the societal ideal:

... if he considered I was talking too much if we were with other people he would like kick me to tell me to shut up ... I just found it difficult.

For Ruby, she felt most supported and validated by others online, or by her work colleagues. However, she experienced family members as dismissive with them not appearing to recognise the magnitude of what it meant to receive the diagnosis:

... I just expected him [husband] to say something ... or realise how massive this was for me and he didn't for ages, and about two weeks later I just said, 'look, this is huge for me ... to you I'm no different, but to me I'm completely different'.

Elizabeth received several helpful and positive reactions. However, she described an ongoing fear of disclosing. Some reactions highlighted the potential for invalidation, leading her to be selective when seeking support:

... when I told my dad ... he was ... 'You don't have autism, you're perfect. There's nothing wrong with you' ... he thinks I'm his perfect little girl ... who's got nothing wrong with her, so I can't talk to him about if I've had a bad day.

The narrative, of being 'perfect' suggests a neurotypical ideal with the implied opposite being 'imperfect' and autistic. It is possible that this message contributed to the difficulty Elizabeth described with integrating autism as a part of her identity and fear of judgement.

Stereotyped assumptions

For many, the aforementioned need to 'mask' or develop a persona changed post-diagnosis. However, some participants experienced inner conflicts, wanting to show their true selves, but being fearful of reactions. For some, stereotyped assumptions about ASC, likely based on pre-existing schema led to frustrations about meeting the expectations of others:

... it makes me a little bit cross, that they think I should fit into some sort of stereotype. Sometimes I feel that I'm letting them down because I don't act how they think I should do! (Celia)

Some transitioned from a psychological position of seeking to hide their true selves to feeling invisible and dismissed, fighting for their true needs to be recognised (e.g. in the benefits system). Some postulated that the amount of effort placed on previously camouflaging their behaviours directly affected how they were viewed post-diagnosis:

... anyone who's got to middle age with undiagnosed autism has had to basically do Olympic level training in how to be a normal person ... [when I] appear sort of normal, that is because of the years of actual effort that I've put into it. (Alice)

Several participants experienced tailored and helpful support, with many describing supportive adaptations at work. However, some had continuing battles for these adaptations to be made. Others volunteered to offer training within their workplaces to add to knowledge.

Some experienced the diagnosis limiting the options for support that was individualised as people made assumptions about how they fit into a label based category. At times, this included a loss of mental health support. For Marie, this approach to supporting her in college felt oppressive and narrow in its view of who she is as an individual:

Just stop looking at that damn word; that damn word doesn't make me, me.

Theme 4-a new identity on the autism spectrum

This superordinate theme describes participants navigating relationships and changing relationships, alongside an ongoing process to understand how autism relates to who they are.

Negotiating relationships, connections and community

Many participants described ongoing changes in relationships post-diagnosis. Some included familial relationships and old friendships evolving supportively in light of new understandings:

... he'll [husband] now take the lead in situations where he knows I'm not comfortable, whereas before he just thought I was being awkward. (Celia)

Others made life-changing relational decisions. Previously stuck in a passive position based on others' expectations of her as a woman, Lily took control and ended the relationship with her husband. Some had experiences where they recognised friendships that weren't supportive:

... the implication ... I was automatically wrong, because I had this Asperger's thing ... So that was unexpected, and I had to walk away. (Alice) ... one person that I talk in confidence to ... and they treat me the same as everybody else. The people that have ignored me I don't want to know. (Kate)

The ability to make these changes signified a newfound confidence to live shaped by their values. It represented a parallel 'letting go' of an old life, pre-diagnosis, one where they no longer needed to assimilate to meet the social norm.

Descriptions suggest an intrinsic need for belonging, where participants found positives and validation in relating to others and recognising strengths, many of whom found friendships 'offline' difficult. For some, they found a shared value and identity, contrasting with past self-beliefs, and at times devaluation by others:

I've never fitted in that jigsaw puzzle ... [now]I fit somewhere, I belong somewhere with other people somewhere who are like me. Yes, it's good. (Ruby)

Conversely, Elizabeth, engaged in ongoing camouflaging behaviours:

I won't always tell him [husband] that I don't understand, to make it less embarrassing, but then obviously that makes things ten times worse ...

The description suggests a belief that accepting support from others may mean accepting she is autistic, something she is not ready to do. In not doing so, she recognises this contributing to relational difficulties.

Changing wellbeing and views of the self

Diagnosis and new understandings provided many with the opportunity to let go of blame. Recognition that it was ok to be who they were rather than meet some idealised version of the self was freeing:

I feel free, very much more free. (Lily)

Many described ongoing anxiety and depression. However, others reported that adaptations they were able to make in their life meant that they experienced much less distress than previously:

I don't get as much anxiety as I used to ... because I've got better understanding of - and because I understand it better I'm actually able to deal with it better ... So I build strategies around that really. (Merrell)

Some, knowing mental health difficulties were still a fluctuating part of their lives, described finding ways to proactively develop ' coping mechanisms' (Alice, Celia) to reduce the likelihood of becoming overwhelmed, experiencing elevated anxiety or ' going into crisis ' (Lily). This included managing social situations by doing the things that they could cope with and letting go of associated guilt. Descriptions suggest a newfound permission for participants to meet their own needs and a developing identity as someone who no longer needed to conform to be acceptable:

I feel a lot better about myself ... I can be happier being myself, rather than trying to fix myself and change myself and fit in. (Ruby)

Many were kinder to themselves, signifying a progression from self-criticism to self-compassion:

... to understand where those difficulties and stresses are coming from makes a difference in terms of how I think about myself. (Mia)

This extended to engaging in soothing, often practical and enjoyable self-care activities, such as art, communicating online, spa days, learning and gardening.

The meaning of diagnosis

A minority of participants struggled to find overall value in the diagnosis while struggling with acceptance. However, others described it meaning ' everything ' (Lily, Ruby). Elaborations focused on newfound confidence to trust their own judgements, having a voice in society and recognising their contributions as valid and important:

... other people have been telling you for years you're wrong; now I trust that gut instinct because I know that I'm a grown woman and I know who I am now. So, it's more powerful. (Lily)

For some, the fact that their experiences could be explained was a novel thing, having lived for so many years searching for understanding:

... it means there is a logical reason for my irrational behaviour and I like that, I like there to be a reason for everything ... I can prepare myself better. (Celia)

The understanding was of profound importance, allowing several participants to make sense of a part of their ' identity' (Hannah), one that identified part of who they were and provided a ' framework ' (Mia) for learning and improving their wellbeing. This extended to feeling there was power, strength and pride in diagnosis. Many experienced a changing view of themselves in society, one that was 'different' to some, but that difference was in fact neurodiversity and something to celebrate. Alongside pride participants felt in being individuals, some also recognised the resilience they had drawn from to overcome so much pre-diagnosis, a strength that they felt able to capitalise on with the support of diagnosis:

... I've overcome so many things in my life, because of my inner strength ... now I feel even more powerful now that I've got my diagnosis to back me up and to push me along to be even stronger still. (Ruby)

Discussion

This study aimed to investigate the lived experiences of females being diagnosed autistic in middle to late adulthood using a qualitative interview methodology, IPA. The analysis revealed four superordinate themes: A hidden condition, The process of acceptance, The impact of others post-diagnosis, and A new identity on the autism spectrum. The themes are discussed below to consider how the current study relates to and extends existing knowledge.

Consistent with previous theorising, many participants referred to 'camouflaging' their characteristics ( Bargiela et al., 2016; Hull et al., 2017). This was motivated by a desire to 'fit in', to navigate social relationships and to behave as they 'should' by societal standards. These attempts to cope often exacerbated difficulties with mental health, consistent with previous literature ( Cage, Monaco, & Newell, 2017). In the current study, the need for acceptance into the social 'in-group' pre-diagnosis was evident. Awareness of remaining on the periphery despite significant effort was intensely distressing. Consequently, several women developed an internalised view that they were intrinsically flawed.

Mental health difficulties were present across the data, with many still specifically experiencing anxiety and low mood post-diagnosis. Some had been frequently mislabelled and misdiagnosed, consistent with previous findings ( Bargiela et al., 2016; Eaton, 2018). For some, mental health struggles included past suicide attempts and self-harm. One influence on declining mental health pre-diagnosis was the lack of agency women had in understanding themselves, something these women had lived with for many years. This extends the current literature by highlighting that misdiagnosis and mislabelling was not only about a lack of understanding of autistic females across services, rather it also related to power issues where others made overarching statements about who participants were. Female struggles with empowerment are evident in many domains and societal dimensions ( Ballon & Yalonetzky, 2018). In the current study, it was evident that participants experienced feelings of disempowerment while trying to understand themselves in a confusing world that exacerbated self-doubt, shame and negative self-image. The issue of power imbalance between healthcare professionals and patients and service users hinders shared decision making in clinical settings ( Joseph-Williams, Edwards, & Elwyn, 2014). It is also an issue that can emerge between participants and researchers ( Kitchin, 2000). One way to reduce the effects is for individuals to be involved in the development of research and services via a participatory model ( Fletcher-Watson et al., 2019), thus the balance of power can be shifted more towards a needs based model of research and service provision.

Several participants expressed relief post-diagnosis. For some, this included a sense of 'vindication' reducing long-standing shame associated with social misunderstandings. Others feared what diagnosis may mean for them, particularly at this stage of life. For many, diagnosis gave women the opportunity to commence a meaning making process, as seen in previous findings ( Baldwin & Costley, 2016). The current study provides more insight into this process. For many, this was the initial step in regaining control of self-understanding.

Many participants reflected back on their life, both during assessment and post-diagnosis, as reported in previous literature ( Hickey et al., 2018). It was painful to interpret life experiences in a new light, one where they were not to blame. For some, this included fear about the reality of ASC diagnosis. However, for many, expression of grief related to the intense pain for all they had previously endured, leading to 'loss' of a life where they were understood by themselves and others. Thus, increasing self-acceptance highlighted the sense of pain of what they had endured. Some found this grief complicated to process, leaving them 'stuck' in a place of despair about how things could have been different.

Many participants experienced supportive reactions and adaptations post-diagnosis. The study highlighted the importance of reactions that were validating and provided opportunities for relationship development. Post-diagnosis, some participants recognised that camouflaging had unintentional consequences, with females being able to function 'successfully' in certain situations, leading to ongoing unrecognised needs, as seen in findings by Tint and Weiss (2017). In addition, previously held schemas of others about ASC potentially contributed to difficulties, including lost benefits and battles for support. This appears to be specific to the experience of females, with their presentation not fitting previously male conceptualisations of ASC. Stereotyped understandings of ASC will likely increase the likelihood that females will not be referred for diagnoses in childhood ( Dworzynski, Ronald, Bolton, & Happé, 2012). A further problem caused by others' misunderstandings and use of stereotypes, as highlighted by Treweek, Wood, Martin, and Freeth (2019), is that this leads to negative consequences for autistic individuals, such as prejudiced behaviour and bullying. Given the amount of emotional distress experienced by women, this study emphasises the importance of developing an understanding of ASC in females across educational, governmental and employment settings to reduce the likelihood of women enduring the same.

Previous findings suggest those viewing ASC as a form of 'neurodiversity' positively relate it to the self ( Kapp, Gillespie-Lynch, Sherman, & Hutman, 2013). Thus, unhelpful narratives experienced by two participants post-diagnosis may have partly influenced difficulties they experienced integrating diagnosis into their identity. Diagnosis in middle to late adulthood likely also shaped this experience. Participants had experienced many significant life-stages without a diagnosis. For several women, the prospect of a 'new life' at this age was psychologically daunting to contemplate.

Participants described changing relationships post-diagnosis. Some found comfort in identifying with others within the female autism community, suggesting, for some, a pull for relating and group membership. Previous findings indicate a sense of belonging to be of value to autistic women ( Bargiela et al., 2016). Some still found social experiences difficult, but many found ways to navigate relationships, letting go of guilt associated with meeting their own needs. Several participants found power in diagnosis, relinquishing the need to assimilate to the societal norm, allowing them more choice in the trajectory of relationships. For many, this process took time. However, for several women, the diagnosis provided a sense of permission to develop an identity where they were acceptable as they were. This study extends previous understandings about what diagnosis can mean to individuals. For many, this signified transitions to a place of self-compassion which was proactively nurtured by engaging in activities consistent with their needs. Some also experienced a sense of pride in being an autistic female, emphasised by newfound beliefs that being 'different' was acceptable.

The themes that emerged from this work dovetail with some themes that have emerged from other recent work aiming to better understand the experience of adulthood for autistic individuals. For example, the extent to which autism is a hidden condition clearly fits with discussion of intentional camouflaging of symptoms in females ( Cage & Troxell-Whitman, 2019; Hull et al., 2017; Tierney et al., 2016). The process of acceptance that the participants in the current study were going through echoed some experiences reported by autistic adult females by Milner, McIntosh, Colvert, and Happé (2019). The themes of interpretation of self and self-identity were also described by a much broader group of autistic adults reported by Tan (2018). Further, participants in the Tan (2018) study also discussed the benefits of finding a new community which was along similar lines to the points made by participants in the current study on finding a new identity on the autism spectrum. Finally, discussions around the impact of others and struggling with the stereotyped assumptions that were often made, was aligned with the findings of Treweek et al. (2019) who observed that autistic adults felt that misunderstanding of autism by others had negative effects and consequences for them as individuals.

It is important to recognise that IPA studies have some inherent differences to other methodologies. IPA studies do not seek to be produce generalizable results, rather findings from IPA studies are deemed to have potential relevance to other similar contexts as judged by the reader ( Larkin & Thompson, 2012). Now that this study has produced detailed themes, further research would be required to examine the extent to which these might be generalizable. A survey-type study, potentially administered online, using a combination of quantitative and qualitative questioning could be one approach to do this.

An important issue to be considered in the transferability of the findings is consideration is that in the current sample, some individuals were recently diagnosed and others were diagnosed up to 9 years previously, hence time since diagnosis could have had an impact on the nature of responses. Future research may wish to consider experiences at additional time points post-diagnosis in order to understand the progression of adjustment experiences. It was clear from the interviews that participants in the current study did not feel that their needs had been met by services, and this had resulted in negative consequences. It is important that future research establishes how services should be improved and where the gaps in knowledge are of individuals who work in these services in order that the needs of autistic adults are met. We anticipate that a participatory approach ( Fletcher-Watson et al., 2019) would be optimal in order that services can be tested on, and improved in relation to, the factors that are most important to autistic individuals. Here, we considered the experiences solely of women who received a diagnosis on the autism spectrum in middle to late adulthood who were able to engage in a spoken face-to-face semi-structured interview. This decision was to ensure a degree of homogeneity in our sample, as is required for IPA studies. However, it will also be important to consider the experiences of less cognitively able individuals, by using more flexible methodologies, and other genders in order that their experiences can also be understood. This is particularly important as being diagnosed in middle to late adulthood is becoming increasingly common, but this age group is currently very under-represented in terms of the published autism research literature.

Implications for clinical practice of the present study should be considered. While a minority of participants in the current study were struggling to find value in their diagnosis, others described it as meaning 'everything' indicating the importance of receiving an autism diagnosis for many, even though they had already lived so many of their adult years without being diagnosed autistic. There were many participant reports on experiences of not being understood by professionals and the negative consequences of power imbalances, with the perception being that this was one factor that had contributed to declining mental health. It is therefore vital that clinicians possess a broad, comprehensive and up to date knowledge of autism in order to effectively and flexibly conduct diagnostic assessments and minimise the possibility of mislabelling, which can have severe and enduring consequences. It is important that clinicians do not over rely on the reports of others when considering whether a diagnosis is appropriate, as the participants here reported a high degree of camouflaging, even with very close family members. It will be important that clinicians engage individuals in discussion with regards to disclosure as it was clear from this study that there are a range of possible consequences to consider. Participants reported an ongoing battle for needs to be recognised by certain services indicating their experience was that understanding of autism in professional services is still relatively poor. The process of coming to terms with receiving an autism diagnosis happens over a long period of time. The participants here tended to report experiencing grief and a sense of sadness for their pre-diagnostic self, hence ongoing support will likely be needed as people go through the process of coming to terms with being given an autism diagnosis. Clinicians should consider ways to support autistic women to foster self-compassion due to its value within the sample.

Conclusion

Findings suggest widespread limited understandings of ASC in females, which influenced late diagnosis in the current sample. They also highlight issues of power and control, where autistic females reported times pre-diagnosis of feeling powerless or experiencing power imbalances. Post-diagnosis, participants overall had increased sense of agency, allowing them to take control of and make sense of their own experiences. Pre-diagnosis, participants reported misplaced labels and misdiagnoses being enforced upon them, contributing to ongoing battles with mental health, identity and a devalued sense of self. For many, diagnosis was an incredibly painful process as they re-experienced and grieved such a significant period of life. It is evident that diagnosis achieved in a timely manner would likely alleviate the distressing way life had been experienced by participants in the current study. It is paramount that training for professionals in mental health services, schools and wider agencies takes place to reduce the likelihood of unmet needs taking a significant toll on wellbeing in autistic women, and this should be delivered, at least in part, by those with lived experience. Results emphasise the value of understanding oneself within a diagnostic framework where needs and strengths can be assessed, nurtured and supported.

Notes

1.
Use of the word 'normal' by some participants refers to 'neurotypical' or non-autistic people

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'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood - Alexandra Leedham, Andrew R Thompson, Richard Smith, Megan Freeth, 2020

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Abstract Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis.

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