Paper: "‘When my autism broke’: A qualitative study
spotlighting autistic voices on menopause"
This paper was published in 2020, in the journal Autism.
The authors were Dr Rachel Moseley, Ms Tanya Druce, and Professor Julie Turner-Cobb (author links will open in separate tabs)
You can click HERE to download a PDF of the paper.
Keep reading to see a plain English summary, or you can watch my explanatory video. You might also be interested in the follow-up study that came after this one, which you can read about here (link opens in new window).
Why is this an important issue?
‘Biopsychosocial transition points’ are life stages where the hormonal systems in the brain undergo substantial change and reorganisation. Because hormones control the way the body functions and how we feel, these stages are marked by changes in our bodies, our thought processes and emotions. During these times, we are more vulnerable to mental and physical illness and damage from pathological things, like the exposure to chronic stress.
For people with ovaries, menarche (the start of periods) and the menopause* (the cessation of periods) are two such biopsychosocial points where there are peaks in physical and mental illness, and indeed suicide.
We know that autistic people struggle with puberty and the start of periods, and that the monthly experience of menstruating can be really difficult for them. Autistic people have reported that during their period, sensory sensitivities are heightened, it becomes harder to think clearly and control their emotions, and they struggle more with everyday life and self-care. Despite this, at the time when we conducted this study, not a single study had considered how autistic people might cope with the menopausal transition in midlife.
Given that non-autistic people experiencing menopause go through challenging physical changes and uncomfortable and debilitating symptoms, including greater anxiety and depression, the menopause could be a very vulnerable time for autistic people - given that they are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change.
See below for a presentation which was given for a conference in 2021. This talk focuses more on our second paper about the menopause, but there was a great deal of overlap in the findings which emerged in both studies. You can open it up to large screen, and turn captions on and off by clicking the 'CC' button.
What is menopause, anyway?
Menopause is sadly often perceived as a taboo subject, so many people know very little about it. Although you may hear talk of “the menopause”, menopause is actually not a singular event but a gradual transition where, for a person with ovaries, their periods become less and less frequent and eventually stop altogether. This process is driven by changes in hormones, which give rise to a range of symptoms (the most commonly known
one is hot flushes).
This transition is called the perimenopause, though you will often hear people talk about it as “being menopausal”, “experiencing menopause” or “experiencing menopausal symptoms”. Technically, clinicians will say someone has passed or reached the menopause, or is post-menopausal, when they have experienced 12 consecutive months
without a period.
In this paper, we use the term “menopausal transition” to reflect the entirety of this transition - from the perimenopause (the stage where hormones are dysregulated but the person is still having periods), to the point where periods have stopped for 12 consecutive months (the person having “reached the menopause”), and the time after that. The person can be experiencing symptoms (hot flushes and/or a range of other
things) throughout that whole time.
What was the purpose of this study, and what did the researchers do?
Because we could not find any papers on autistic experiences of the menopausal transition, we wanted to find out what autistic people knew about it. We also wanted to hear their thoughts on the state of knowledge about autistic menopausal experiences among clinicians, professionals working with autistic people, and researchers - people who work with autistic people and might need to be supporting them through this transition.
We conducted an online discussion (focus group) with seven autistic people who reported that they were experiencing the perimenopause or had reached menopause (no longer experienced periods). The participants were age between 49 and 63 years old; six of the seven identified as women, and the majority were British. Using a private online chatroom, we posted questions for our participants to respond to in real time, typing in their answers. To analyse the data, we looked for themes (ideas) that kept emerging in the discussion.
What were the results of the study?
From our participants, we heard:
... that there was indeed very little knowledge about what the menopausal transition might be like for autistic people, and that there was a wider taboo and lack of information about it. Accordingly, many participants expressed that the menopausal transition had taken them by surprise. Since typical descriptions of menopause might not fit with what they were experiencing, it was hard to figure out what was happening to them and this confusion could be extremely stressful (“suddenly experiencing unprecedented phenomena which don’t correlate with ‘regular’ menopause, so you don’t know if… you’re going nuts, or have some disease, or what”).
... that because autistic people are often quite isolated, they may not have other autistic people they can relate their experiences to, to try understand what a 'normal' neurodiverse menopause looks like. Being undiagnosed might make the menopausal transition even harder: such individuals might struggle to relate their menopausal experience to those of neurotypical others, but not understand why their menopause is so different. They might also be less aware of where difficulties might arise, and more critical of themselves for struggling.
... that doctors were often unhelpful, participants perceiving them to be disinterested or simply unaware about menopause, autism or autistic menopause. Some participants did have positive encounters with healthcare professionals who supported them holistically (with recognition of the many factors that made up them as a person). Others found it very hard to get support, and that healthcare professionals did not always recognise how much they were struggling if they did not express it in conventional ways (e.g. crying). Alexithymia, finding it hard to communicate your feelings, was also a barrier to communicating their difficulties to doctors and with loved ones.
... for some participants, the menopause worsened existing difficulties and brought on new ones, such that they suddenly ‘looked more autistic’. (For some, it was at this point when they sought a diagnostic assessment and realised they were autistic).
Some participants found that their existing coping skills failed and self-care was difficult; they were less able to camouflage their social difficulties or other autistic features; their sensory experiences could be heightened; their memory and executive function (planning and organisational skills) worsened; they struggled to sleep; and they were much less in control of their emotions and more vulnerable to stress. For some, their mental health deteriorated badly to the point of feeling suicidal.
However, not everyone was strongly affected - there was a lot of variation among participants.
Participants also noted that the menopause occurs in a time of life (called ‘midlife’ by psychologists) where there are many social and identity changes occurring. For instance, their support networks might be radically adjusted or reduced (for e.g., with the death of parents; loss of partners; kids moving out); they might be reducing their working hours or retiring. Other changes related to ageing might also be occurring, and they could be worrying about future support and health issues.
What are potential weaknesses in the study?
There are no reliable biological markers for identifying whether someone is experiencing the menopausal transition. We did not want to ask participants if they were experiencing traditional, non-autistic menopausal symptoms, because for all we knew, autistic experiences might be very different. As such, we were unable to know exactly what stage of the menopause participants were experiencing, or to say for sure that the changes they were reporting were definitely associated with menopause (rather than, for instance, being related to ageing generally).
Some of our participants had been post-menopausal for a long time, so it is possible that their recollections were influenced by the length of time since they had experienced the things they were reporting.
Although we advertised the study to anyone who believed they were experiencing or had experienced the menopause, it may have been more noticeable for people who had experienced more dramatic or unusual menopausal transitions. This may have skewed our findings - it is possible that people who had easier menopauses were not very interested in taking part.
This kind of study cannot be generalised to the broader autistic population, but certain groups, like people with intellectual disability, were not represented at all.
How will these findings help autistic adults now or in the future?
This study was the first, to our knowledge, to ever consider how autistic people might experience the menopausal transition. It highlighted the great lack of knowledge and awareness among professionals, including those in healthcare, and showed how important it is for research and professional attention to be paid to autistic experiences of menopause. The study showed that for some people, the menopausal transition brought about dramatic changes and effects on their mental and physical health. For these individuals, the study clearly emphasized that there are health and wellbeing needs for autistic people during midlife which are simply not being met. This may leave them extremely vulnerable to mental and physical illness and suicide.
Thank you for reading!
If you found this interesting, you may like to read our second paper:
Sadly there aren't many resources we know of for the menopause. But there are a few - please see the resources page!
You can also check out our ongoing research at autisticmenopause.com
You can also read our article from Spectrum News, my article about late-diagnosed adults, or listen to podcasts from Autism and Autistica!