Paper: "Autism research is ‘all about the blokes and the kids’:
Autistic women breaking the silence on menopause"
This paper was published in 2021, in the British Journal of Health Psychology.
You can click HERE to download a PDF of the paper.
This study was a follow-up to a paper published in 2020 (click here to open it in a new window!) - we would recommend you read that one first. Keep reading on this page to see a plain English summary of the follow-up study, or you can watch the explanatory video!
Why is this an important issue?
People with ovaries will, in their lifetime, pass through the menopause, which is when they stop menstruating. It is not a single event but a transition driven by hormonal changes. In the stage called perimenopause, periods become more and more irregular or infrequent. At the point where the person has had 12 consecutive months without a period, we say they have “reached” or “passed” the menopause, or that they are “post-menopausal”. The menopausal transition is the term used to describe this whole process; this is also what people mean when they say that someone is “experiencing menopause” or “menopausal”.
Non-autistic people can find the menopausal transition very challenging. Along with changes in their periods, the menopausal transition is also marked by physical symptoms like night sweats and hot flushes, and changes in thought patterns and emotions. Some people report feeling more depressed and anxious, and struggling with memory, planning and organisation. People experiencing the menopause are more vulnerable to mental and physical illness, and may be more likely to experience suicidal thoughts.
We know that autistic people are often very sensitive to the normal hormonal fluctuations which happen on a monthly basis: many report that during their period, they experience heightened sensory sensitivities and struggle more with executive function, managing their emotions, and coping with everyday life and self-care. We also know that quite aside from the menopause, autistic people are generally more vulnerable to mental and physical ill-health and suicidal thoughts. As such, it is very concerning that so little is known about how autistic adults experience and cope with the changes of menopause.
See below for a presentation which was given for a conference in 2021. This talk mentions both of our menopause studies, but mainly focuses on the second (the one described on this page). You can open it up to large screen, and turn captions on and off by clicking the 'CC' button.
What was the purpose of this study, and what did the researchers do?
We had previously conducted a ‘scoping’ study, an online focus group, to see whether the menopausal transition was indeed an issue of concern for autistic adults. This preliminary study hinted that this could indeed be a very difficult time for some autistic people, but mostly focused on the wider state of knowledge around menopause among autistic people and professionals, including doctors and researchers. It was very therefore important to take an in-depth look at personal stories and experiences.
In this follow-up study, we conducted semi-structured interviews with 17 autistic adults, 6 of whom had participated in the first study. Seven of the participants were self-identifying autistics. All but one identified as cisgender women, with that one person suspecting they might be agender. The average age of the group was 53 years old (ranging from 41-66 years), but the majority of participants were post-menopausal. Interviews were conducted flexibly depending on how participants wanted to take part: some responded to questions over instant messenger, some recorded voice messages, some used the phone, some used Skype, and some filled in a written survey. The researchers looked for themes (ideas) which cropped up across all of the interviews.
What were the results of the study?
We interpreted four themes in the data: these reflect experiences, thoughts or feelings which appeared to be common across the sample.
Firstly, since all of our participants had only learnt about their autistic status in adulthood, all had experienced a kind of gradual journey towards their identification as autistic. Participants had often grown up feeling different, “weird” or “broken”, with many mental and physical health complaints. Many expressed that they had associated autism with male-centric and very stereotypical representations (e.g. Rainman), and hence had never thought that they might be autistic themselves.
Common ‘milestones’ towards their autistic awareness were when their own children or other relatives were diagnosed; when they sought help for mental health conditions and psychiatrists suggested they might be autistic; and/or when they entered the menopausal transition. At this point, some participants suggested that the difficulties of menopause disrupted their normal coping skills and made their autism much more apparent. While identifying and/or being diagnosed gave rise to many emotions (including shock, sadness, regret and anger), participants also suggested that knowing they were autistic allowed them to be much more compassionate and accepting towards themselves.
Secondly, all participants spoke about their beliefs and attitudes around menopause. Many expressed that menopause was a taboo topic among family and friends. Often, they only knew about a few, stereotypical symptoms (e.g. hot flushes) but had not realised the full extent of what menopause would entail. Participants were not always aware of the transitional nature of menopause, or of ‘perimenopause’ as a concept; many had suffered anxiety about what to expect and whether they needed to take action. Some, who were basing their expectations on stories from non-autistic people, were not able to identify what was happening to them: they could feel extremely isolated (“on my own with my body and feelings”), frightened and confused (“I thought I was going mad”).
They also felt subject to stereotypes around what it means to be female and ageing, with some reporting ageist and sexist abuse and discrimination. Some participants were very matter of fact about menopause; some expressed positive things about it, such as appreciating the “invisibility” it brought, the release from pressure to “look good and be sexy”, and for some it had prompted them to make some positive lifestyle changes. However, participants also pointed out that it could make you feel “very out of control”, with previous neurodivergent features changing: “My ADHD is broken, it’s got lots of D’s in it, the deficit and the disorder. Before that [menopause] I didn’t feel it to be that way… you could have these wonderful gifts”.
Thirdly, participants talked about a range of menopausal symptoms. These varied greatly in severity, with some participants describing a very “easy” experience; others reported greater difficulties. Although we asked about symptoms separately, different types of symptom actually affected one another. For instance, physical symptoms like hot flushes and insomnia affected mental health and self-esteem, and affected participants’ ability to engage in self-care, daily tasks and social outings.
Cognitive symptoms included “brain fog”, tiredness and problems with memory, organisation and attention, and some reported becoming highly dependent on others for self-care and everyday tasks, having lost income, fallen into debt or required to go on sick leave. Mental health deteriorated for some participants, who reported that their “emotions had been turned up a notch” and whose coping mechanisms “just completely failed”. Some reported increased self-injury, suicide ideation and attempts. Social interaction was less bearable or possible for some, with masking suddenly harder to do; some also reported deterioration in their ability to communicate with spoken language, to identify and express their emotions, and read other people.
All of these changes could affect relationships, as did heightened sensory sensitivities, which impacted on mental health and daily function. Participants recognised that there were often wider changes happening in their lives, with some losing partners and/or parents, and feeling increasingly aware and worried about the future. Some post-menopausal participants suggested that they had learnt new coping strategies and therefore experienced some improvements in symptoms. Many had struggled through menopause without seeking medical assistance.
Fourth, participants talked about how neurodiversity might affect a person’s experience of the menopause. They suggested that a number of features common to autistic people might make it more difficult - pre-existing challenges with communication, executive function, socialising, mental health, self-awareness, sensory issues and self-care. Participants recognised that experiences would likely be very different across neurodivergent people, and that people with severe communication difficulties or intellectual disability might really struggle if they could not make their symptoms understood.
Some suggested that menopause might be made slightly easier by knowing about your autism from the outset: they suggested it might help individuals prepare, put more coping strategies in place, be more self-compassionate, understand why things felt so difficult and why things might be different from descriptions of non-autistic menopauses.
Participants strongly emphasised the need for autism-specific menopause resources and support, and for training and education for healthcare professionals and professionals in the autism sector. Participants also emphasised how important it was to know that “it doesn’t have to be forever”.
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 data - people who had uneventful menopauses may not have been interested in taking part, so their experiences were not reflected.
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, and its predecessor, were the first to consider how autistic people might experience the menopausal transition. The studies suggest that there is great diversity in how autistic people experience menopause. While some seemed to experience only minor difficulties, others reported an extreme deterioration in their wellbeing, their ability to live and function independently and manage self-care. Self-injury, suicidality and severe mental illness were extremes experienced by some participants. Their health and support needs had not been met at this time.
Why did some participants experience such severe symptoms while others did not? It is extremely important for future research to understand if there are any markers which can foretell the severity of menopausal symptoms - and if so, whether there are ways that medical and other professionals can intervene. Even if intervention cannot alter the severity of symptoms, being able to predict who will struggle the most would allow support to be planned in advance.
It was also clear, across both studies, that awareness and understanding of the menopause was low in our autistic participants. This is in no way a reflection on them - general awareness is poor among the public, as menopause is seen as a taboo topic. Nonetheless, it meant that many had been unprepared for what was about to happen to them, and had no ‘frameworks’ to explain their different experiences, since they only had access to stories of non-autistic menopauses. It is crucial that researchers and healthcare professionals look for ways to support autistic people undergoing menopause. Part of this support might importantly lie in helping them connect with other autistic people, giving them access to stories of neurodivergent menopauses which may help them to recognize aspects of their experience, and providing reassurance that symptoms can be treated.
Thank you for reading!
If you found this interesting, you may like to read our first paper:
Sadly there aren't many resources we know of for the menopause. But there are a few on the resources page!