Episode 3: Menstruation, Menopause & Autism
This is the transcript of the episode. To listen to the episode please click on your preferred podcast button.
No AI is used at any point in this podcast.
Unless otherwise specified, the research I have done for this and all episodes do not include those with intellectual challenges in conjunction with autism characteristics. While I will describe autistic characteristics in this episode, I also recognise that every autistic person will experience autism differently, and these are not specific to every person who identifies as autistic.
What is menopause?
The mid-life experience of menopause typically affects women and menstruating people between 45-55 (WHO, 2023). Perimenopause marks the beginning of the process that ends with menopause and the cessation of periods entirely. Menopause marks the time when the reproductive cycle in a person with a uterus has completely stopped. I refer to ‘women’ in relation to people who menstruate and experience menopause, while acknowledging that some non-binary and Trans masculine people also experience menstruation and menopause. There are research points I want to make about non-binary and Trans experiences of menstruation and menopause in this episode, and I will make it clear when these come up.
What research is there about autistic women’s experiences of menopause?
Moseley, Druce, and Turner-Cobb (2021) write that autistic people have notable difficulties coping with change which in turn results in poorer coping skills and being socially isolated. As perimenopausal characteristics can sometimes be intense and uncomfortable, autistic perimenopausal women can be at even greater risk of autism-associated reduced lifespan, elevated suicidality, high stress levels, and incidence of chronic illness. Social and medical attitudes towards ageing women and autistic women exacerbate feelings of being marginalised, in particular the pathologising of menopause by the medical model that describes it as a state of lack and reduction, as well as autism being a form of deficiency and illness. Moseley, Druce, and Turner-Cobb (2021) found that not only are women expected to cope with a potentially shocking and upsetting confirmation of autism, but also have unmet support needs when it comes to the autistic experience of menopause. Women who have received a late assessment of autism may also be menopausal as a late assessed woman typically falls into the same age-rage as the emergence of perimenopausal characteristics of between 45-55, or even earlier for some. Their experiences of perimenopausal factors may even have influenced them to visit a professional to discuss autism in the first place. In Western Europe and North America, menopause and autism have both become medicalised, and the language used to describe both experiences are descriptive of a disease/cure mentality. I subscribe to the social model where autism and menopause are both natural states of being; one is a difference in neurotype and the other a natural progression in the lifecycle of a human female. Think of how society talks about both experiences: a menopausal woman is said to be experiencing an ‘ovarian dysfunction’ or ‘estrogenic deficiency’ that has ‘symptoms’ that need to be managed or ‘cured’ as though she has caught a cold or is infected; an autistic person receives a ‘diagnosis’, experiences the ‘condition’ of autism, and are said to ‘have’ autism, rather than be described as being an autistic person, which is in fact a neurological difference and not something that needs to be ‘cured’. The challenges an autistic person faces are often caused by societal misunderstandings and lack of accommodations. If an autistic woman who has not been confirmed as autistic, yet begins to experience the characteristics of perimenopause and experiences discomfort they are unable to manage, their online searches, and even perhaps discussions with knowledgeable healthcare providers, may bring them to the door of an autism assessment practice. Karavidas and de Visser (2021) found that the Western culture surrounding menopause leaves women feeling more embarrassment and more discomfort when experiencing hot flushes, for example, than in other cultures around the world that do not emphasise this change in such a negative light. The culture in which a woman experiences perimenopausal characteristics can affect how she feels about herself, and she can feel as though those characteristics occur with more frequency than they actually are. A useful tool for describing these multiple factors that influence the menopausal experience is called ‘critical realism’, which recognises the lived experience of the body that is mediated by discourse, culture and psychological factors. By understanding that many things influence this time in a person’s life it opens up the possibility for more than one cause of discomfort and for more than one method of relief. Perfectly natural, yet potentially disruptive, hormonal changes in the body occur at different times during a woman’s life, in particular during puberty, pregnancy, and menopause. When a woman is pre-menstrual, the hormonal shifts can cause low moods and headaches among other characteristics, and Karavidas and de Visser (2021) found that autistic women who experience sensory sensitivity and communication difficulties will often have these states amplified during these cyclical shifts of hormonal activity. Karavidas and de Visser (2021) write that autistic women have experienced a lifetime of discomfort through sensory sensitivity and a problem arises when perimenopause begins whereby the autistic woman may find it difficult to differentiate between the characteristics of autism with those of perimenopause. In particular, four factors were identified: a lack of information about what to expect during perimenopause; misleading social discourses that were not always applicable to the autistic experience; the timing of receiving their autism confirmation with the onset of perimenopause; and a lifetime of misinterpreting their bodies’ signals which in hindsight they recognised as characteristics of autism. This difficulty of interpreting sensations in the body with corresponding states of being is called ‘alexithymia’. They may recognise a feeling of discomfort, but not why or how to relieve it, and is often a characteristic of autism. The confusion around this unnamed discomfort led to self-doubt, frustration, and a desire to ignore or mask the discomfort. In the paper from Karavidas and de Visser (2021) it is interesting to note that one participant’s experiences of perimenopausal characteristics were ‘all or nothing’ with no middle ground, while another reported no specific characteristics, and another noted very small details as their body changed, such as subtle changes to body hair. Just as every neurotypical woman experiences perimenopause differently, so do autistic women experience their characteristics differently, and no generalisations will ever include all experiences in this way. The lack of consistency here would indicate to me that collective sharing of all the variations of perimenopausal experience would increase the awareness of this among all women, regardless of neurotype. Preparing autistic young girls for puberty, and mature women for perimenopause and ageing, was highlighted in this research as extremely important, especially as autistic women may have a very different experience of their changing bodies than neurotypicals, which is the assumed neurotype for nearly all self-help books on the topic, and advice offered to unconfirmed autistic women by healthcare professionals. One participant described the autistic need in her to overshare about her experiences of perimenopause and becoming aware that she is oversharing after the fact and attempting to compensate with caution when speaking with neurotypical people. To me, this highlights the importance of making autism-specific information available to autistic people, offered by autistic people for autistic people. It is a shame that she felt the societal pressure to stop oversharing when in fact it is the dissemination of information that may help to support neurodivergent women during this time. This is also in keeping with establishing autism research made by autistic academics who may have better insights into the topic being researched. Perimenopause can be a traumatic time in an autistic woman’s life as it can highlight the lack of self-awareness she has about her own body. Learning to ‘read’ their body was even put forward by one participant who felt their experience of menopause was more important to their sense of self than receiving their autism confirmation.
Is help for autistic women available for all?
Karavidas and de Visser (2021) reported that self-care around perimenopause was dependent upon the availability of advice and support, as well as favourable socioeconomic circumstances. Many of their participants experienced great difficulties accessing an autism assessment, and they spoke about the lack of validity in their enquiries into getting one from healthcare professionals who did not know enough about the female characteristics of autism to be in a position to help these women. Without going through official channels to receive an autism confirmation, women who self-confirm as autistic may not feel able to ask for support from their healthcare provider or in the workplace. Many of the study participants in fact were compelled to engage in their own research on autistic experiences of menopause to support themselves as no autism-specific supports around menopause were made available to them.
What happens to autistic as well as neurotypical menopausal women at work?
Research from Whiley and others (2021) found menopausal women to feel humiliated, marginalised, stigmatised and questioned about their perimenopausal characteristics to a degree that they lose self-worth and experience shame. They can be “teased, harassed or bullied for having hot flushes and other [characteristics] as well as threatened with negative ratings in performance reviews” (p.899). Participants spoke about feeling as though they were back at school experiencing puberty for the first time, and found that experiencing perimenopause in a work situation became another reason to ridicule, embarrass and talk down to females. The research from Whiley and others (2021) did not include autistic women’s experiences, but neurotypical women’s instead, but these experiences can be useful to indicate how neurotypical women might feel a similar need as autistic women do to hide their characteristics in a similar way to the neurodivergent experience of masking or camouflaging. The stigma of a menopausal body in the workplace becomes a matter of precarious value in the world of work, a gendered topic that becomes the target of misogyny and patriarchal standards that promote perceived masculine values over feminine: a body in the workplace should be white, male, and able; that the workplace favours specific types of bodies is a topic much discussed by feminist and disability theorists, and equality advocates. Female bodies that experience menstruation, pregnancy, and perimenopausal characteristics are out of place and “dirty”, weird, gross, embarrassing, doing what good patriarchal women are never supposed to do by flushing, sweating, leaking, taking up more space with their ageing bodies than hegemonic femininity (meaning, the dominant or ruling notion) permits them to do. Australian writer Germaine Greer in 2020 wrote that “the idea of eliminating menopause came not from women but from men who thought that the cessation of ovulation was a premature death, a tragedy”. Whiley and others (2021) theorise in their work that menopausal women at work threaten hegemonic masculinity because their “dirty” bodies – leaky or no longer leaky, too fertile, or not fertile enough – render them unable to perform hegemonic femininity. Whiley and others (2021) found that menstruation references constructed women as hormonal, irrational, and moody, being other to the masculine “unspoken order of the organisation” (p.910) which is controlled, reliable, and unemotional. They call upon ‘femmephobia’ to help describe this situation and mentality, how transgressions of hegemonic femininity are oppressing women in a natural transitional state. Many researchers in this area recognise the lack of study in menopausal contexts when it comes to non-binary and trans people, who may have altogether different experiences of the workplace at this time, and future research must also include minority ethnic and racial groups, women in lower socioeconomic positions, and those with intersecting stigmatised identities. Groenman (2022) corroborates other research that says autistic women experience higher levels of menopausal complaints and depression and that it is possible autistic women have a different hormonal balance than neurotypical women, but that future research will have to confirm this hypothesis. They also found that as autistic women are more sensitive to bodily changes they may experience perimenopausal characteristics sooner and for longer than neurotypical women.
How is menstruation experienced by autistic women?
I’m going to dive into the research on how menstruation is experienced in a moment, but I want to take a second here to highlight how rare it still is for people assigned female at birth to access an autism confirmation.
Until recently, it has been assumed that there are more boys and men who are autistic than girls and women: previously it was found that for every three males only one female was autistic, according to the UK National Autistic Society. But in 2022, McCrossin published a paper that found the male to female ratio of autism to be 3:4, for every three males confirmed as autistic there are four females who are also confirmed. According to McCrossin’s research, this is down to a number of factors: autism may not only be genetic but also have a cultural component; girls are expected to be better at social communication and so they develop skills very early to mask, camouflage distress, and learn how to communicate like neurotypicals; genetic research into autism is flawed and not truly representative of gendered outcomes; and finally he believes that the cultural pressure leading to a “diagnosable disorder” (p.272) will then tip the balance to females. He goes on to say that for every 1000 women 60 have clinical ASD, and by 18 years of age 12 females have been confirmed autistic and 48 have not.
To return to menstruation and menopause, I have outlined how traumatic change and physical discomfort can be for autistic people. If we factor in the 48 females who are unconfirmed autistic and may not have any awareness of why they feel different and at odds with themselves, their family and friends, and experience sensory sensitivity unlike the other girls and women around them, it is no surprise that the toll on mental health is so heavy.
Steward and others (2018) reported on autistic experiences of menstruation, in particular how regulating emotions and behaviour worsened when their participants experienced a period, often leading them to seek hormonal and other types of medication to manage their characteristics. We have seen from Karavidas and de Visser (2021) how menopause amplified autistic characteristics, and so did Steward and others’ research on menstruating autistic women. They paid particular interest in the impact of this amplification on their participant’s lives: from overwhelming negative experiences, to exaggerated sensory issues, and intensified executive and emotion-regulation problems with often serious consequences like having ‘shutdowns’, experiencing a withdrawal, heightened anxiety, an inability to work, and to participate in social or community life (p.4291).
A caveat about research into autistic women experiencing menopause.
While it may seem there is plenty of research into this unique experience there is a huge amount of work still to be done, and plenty we do not know. For example, there is scope for the medical community to measure endocrine systems and hormonal imbalance in autistic women during puberty and menopause to determine whether an autistic body experiences typical physical manifestations of these times of transition. As many autistic women report heightened autistic characteristics this question may indicate they either do indeed experience unusual activity within the body, or perhaps a sensitivity unique to autism is the reason for such extreme levels of discomfort. One mustn’t forget how puberty, pregnancy and menopause are viewed by society and how ‘dirty’ and unspeakable they are to certain groups who prefer the traditional, hegemonic versions of femininity that silence or ridicule any change to the idea of what it looks like to be female, a woman, or what is known as ‘ladylike’. Certainly not enough is known about what it means to be autistic and non-binary or trans going through these life stages, and qualitative research that uses the lived experiences of participants to draw hypotheses, conclusions, and to answer questions, must be used in the place of quantitative research that has left them out entirely as a group to be studied. I wrote an article on the lesbian experiences of menopause in biomedical research which you can find a link to in the show notes, if you want to know more about which groups of women are under researched and yet have valuable lived experiences to impart on the topic. The experiences of women of colour, people from ethnic and racial minority groups and stigmatised groups must be included with cultural sensitivity, meeting them at their place of comfort rather than through traditional research routes that may favour a Western cultural approach that could cause discomfort and suspicion from groups who have been mistreated, dismissed or ignored in research up to this point. Researchers must seek to inspire trust and prove their integrity first without seeking to take before they give. Listening to the voices of those underserved groups and learning what they need the research to accomplish may prove a useful entry point. A 2022 study from Aririguzo, Spencer, and Freysteinson on how menopause is viewed by neurotypical African American women revealed that being part of a sisterhood group helped to negotiate their environment and to understand their everyday experiences, meeting the challenges consistent with the changes of menopausal transition. To quote directly, “having a tight knit, trustworthy circle of women friends to share information and guidance through the challenges of life was significant for all of the African American women in this study” (p.270). Every paper I have found on autistic experiences of menopause show that participants were isolated in their state of transition, confused by contradicting advice and support choices made for neurotypical women, and desired support intrinsic to their autistic experience. We can learn from the experiences of community support and ‘sisterhood’ from the African American women involved in this research to better support both neurotypical as well as neurodivergent women, but it takes doing the research and including all women, and menstruating people, in an intersectional research model as described by Kimberlé Crenshaw and many other Black and minority group feminists, to do so.
Thank you for listening. Join me next episode where I will talk about autism and ageing research. The research I have used in this episode can be found cited in the show notes. I am Alexa and this has been the Neurogender podcast.
Special thanks to the Ballyfermot Library Creative Studio where I record all my podcasts.
Show Notes:
Aririguzo, C., Spencer, B. S. and Freysteinson, W. (2022) '"You're acting womanish!" A qualitative descriptive study of the experiences of African American women in menopausal transition', J Women Aging, 34(2), pp. 258-275.
Groenman, A. P. et al. (2022) 'Menstruation and menopause in autistic adults: Periods of importance?', Autism, 26(6), pp. 1563-1572.
Karavidas, M. and de Visser, R. O. (2022) '"It's Not Just in My Head, and It's Not Just Irrelevant": Autistic Negotiations of Menopausal Transitions', J Autism Dev Disord, 52(3), pp. 1143-1155.
MacDermot, A. (2023) 'Silenced women: sexual orientation, medical discourses, and menopause', Sextant: Sexualities, Masculinities & Decolonialities, 1(2), pp. 78-86. https://sextantnotes.com/2023/12/21/silenced-women-sexual-orientation-biomedical-discourses-and-menopause/
McCrossin, R. (2022) 'Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis', Children (Basel), 9(2).
Moseley, R. L., Druce, T. and Turner-Cobb, J. M. (2021) 'Autism research is 'all about the blokes and the kids': Autistic women breaking the silence on menopause', Br J Health Psychol, 26(3), pp. 709-726.
Steward, R. et al. (2018) '"Life is Much More Difficult to Manage During Periods": Autistic Experiences of Menstruation', J Autism Dev Disord, 48(12), pp. 4287-4292.
Whiley, L. A. et al. (2022) '“A part of being a woman, really”: Menopause at work as “dirty” femininity', Gender, Work & Organization, 30(3), pp. 897-916.
World Health, O. (2023) Menopause. Available at: https://www.who.int/news-room/fact sheets/detail/menopause#:~:text=Menopause%20is%20one%20point%20in,specialized%20fertility%20treatments%20are%20used (Accessed: 26 September 2023).