The Menopause Friendly Employer Awards are raising money for two charities and an education partner, helping us to ultimately support and understand menopause even more widely. We spoke with Professor Julie Turner-Cobb and Dr Rachel Moseley from our education partner, Bournemouth University, to find out more about how this funding will support their research into menopause and autism.
Henpicked: why have you chosen to research menopause and autism?
Professor Julie Turner-Cobb: we have done a small amount of research into this already, but it is a relatively new area and there aren’t many papers out there. We wanted to build on our previous work, which had highlighted that for some autistic people, the menopause transition can present different difficulties.
Our initial work was based on focus groups and interviews with autistic people who were going through or had gone through menopause. As a follow-on, we want to do a comparison between neurodivergent and neurotypical people at different stages of the menopausal transition. While we know that anecdotally autistic people do often have a harder time, we don’t have this anywhere as a study and a direct comparison.
What we’d like to do is look at menopause representations, or mental models of menopause, and the way people attribute the causes of these symptoms. It’s looking at the why. Why do people who are going through menopause experience a particularly difficult time if they are autistic, what is it in the way they think about or experience those symptoms that can cause problems? We hope that, by looking closely at these mental models, we can work towards developing interventions to reduce this negative experience of menopause.
Henpicked: are autistic people more likely to find it difficult to cope with change?
Dr Rachel Moseley: a key feature of being autistic is struggling with uncertainty and unpredictability. Biologically, we know that autistic people seem to be very sensitive to hormonal fluctuations, too, and it’s quite common for them to struggle with the onset of menstruation. There can be other complications, such as things like premenstrual dysphoria and very painful periods, which can be more common too.
What did come out in our previous research is that many of our menopausal autistic women and female-presenting people grew up in a time when autism simply wasn’t recognised in girls and women. They would have likely grown up being seen as or feeling different and would have developed their own style of coping mechanisms to deal with certain aspects of life. When menopause hit, we found that this is when coping mechanisms often failed. In some cases, it was at this point people sought a diagnosis.
Henpicked: how is autism diagnosed?
Dr Rachel Moseley: well, often it isn’t, at least not for some time. There are a lot of images out there associated with autism, like the film Rain Man – and a lot of participants in our study said they did not recognise their own traits as autistic. For some, they may have had a child diagnosed as autistic and been told there can be a genetic link. At this point, they may seek their own diagnostic assessment. The route to diagnosis is usually with your GP. People don’t always go along thinking they’re autistic, but may want to discuss particular symptoms and then this could lead to a diagnosis.
Henpicked: are there other factors which might impact an autistic person during menopause?
Dr Rachel Moseley: essentially, we want to ascertain what it is about being autistic which might make a person’s experience of menopause tricky. This could widen to things like lack of social support, being very stress reactive or struggling with emotions.
Professor Julie Turner-Cobb: when women experience symptoms of menopause, it taps into their previous experience of illness representation – and some of the participants in our previous study did conceptualise menopause as illness. This goes back to the ‘mental model’ I spoke about earlier. How you react, how you were treated, how long your illness lasted for… it can all impact on how you go on to view and cope with menopause symptoms.
Henpicked: who will take part in your next study?
Professor Julie Turner-Cobb: for our previous study, we recruited autistic people, some of whom were non binary. We haven’t pinned down the precise aspects of our new research yet. We may widen it out to encompass other conditions such as ADHD but we do need to be able to form a direct comparison, so participants are likely to be primarily autistic and neurotypical individuals.
Henpicked: do you know how many people and what age they will likely be?
Professor Julie Turner-Cobb: we’re planning to study those aged 40-60 years, including people in perimenopause and postmenopause, with approximately 500 participants across the different age groups of autistic and neurotypical people.
Henpicked: is your research likely to result in any recommendations?
Dr Rachel Moseley: we’re hoping it can lead to better understanding of how interventions could help to support autistic individuals with their experience of menopause, and this could include raising awareness with medical practitioners as to how this major life change can impact this group in particular.
