By Shelby Grebbin
Autism spectrum conditions were once seen as a condition that predominantly affected people assigned male at birth. This has caused a paucity of information on common events such as menstruation and menopause.
Menopause poses significant challenges for autistic people, according to a small survey published in 2020—the first to explore the transition among people with autism traits. This shift in hormones marks more than just the end of menstrual cycles which themselves may have been more difficult as well. It can also cause hot flashes and mood changes, and increase the risk of health problems, such as sleep issues, which autistic people are already at an elevated risk for. In addition, in the survey and a follow-up study, participants described how menopause exacerbated existing cognitive, social, emotional and sensory difficulties, so much so that in some cases, it led to their autism diagnosis.
“My autism feels heightened now. I’m much more aware of my sensory issues, for example, and more prone to meltdowns,” one participant said.
Several women relayed past negative experiences with health-care professionals and said they had difficulty finding and accessing support as they went through menopause.
Their responses show the need for more research on autistic people’s experiences of menopause, says lead investigator Julie Turner-Cobb, professor of psychology at Bournemouth University in the United Kingdom.
The following interview her and study investigator Rachel Moseley, principal academic in psychology at Bournemouth shed more light on their findings and future research plans.
Q) How did this project come about?
Rachel: Some of our previous studies had highlighted that there was a feeling that a lot of people were struggling with barriers and not having all the information that they might need to navigate menopause.
Q) What were some of those barriers?
Rachel: Communication with health-care professionals was one of them. In part, there was difficulty in really explaining how difficult things were, how bad participants were finding it. So they would sometimes be struggling to find the words to express their experiences because they weren’t showing in obvious ways that neurotypical people express. Lack of knowledge and awareness was also a barrier. Menopause wasn’t often talked about, but when it was, it wasn’t necessarily in a format they recognized from their experience because, of course, theirs was a neurodiverse experience.
Julie: Women were finding that they didn’t have the emotional vocabulary to explain it, particularly to health-care professionals. Previously, they may have learned how to cope or how to mask things. Suddenly they felt that they weren’t able to cope and the skills they had perhaps honed over several years, just weren’t working for them anymore during menopausal changes.
Q) How did diagnosis status affect participants’ experiences of menopause?
Rachel: In our previous studies, a lot of our participants were not diagnosed when they entered menopause. For quite a few of our participants, it seemed that when they did get to that place of self-awareness it helped them to move to a more self-compassionate place. Many people had very negative framings of themselves. So having a framework to hang their experience on was helpful. One person said that, she was particularly struggling with hot flashes, and said that if she had been diagnosed as autistic, she would have better understood her difficulties.
Also, it’s a difficult reality that we know so little about autistic people in older life just because the diagnosis itself is often so young, especially when it comes to women and people assigned female at birth.
Q) Was it difficult to find participants?
Rachel: Not so far. Sadly, I’ve seen quite a few instances in which people are just desperate to talk about it.
Q) How do you plan to continue this work?
Rachel: With colleagues, we have created a three-part qualitative research project called Bridging the Silos. We plan to hold two 10-person focus groups, this time on Zoom, with autistic participants based in the United Kingdom and Canada who have gone through or are currently in menopause. Based on issues identified in the groups, we will develop a public-access online survey to collect further data.
We are hoping to get different academic disciplines talking, to bridge silos between researchers and people with lived experience. So this study is co-designed with autistic people and autistic researchers to have a range of individuals at the table. And all our co-chairs of our focus groups are autistic people, so it’s very much got lived experience in both the design and project steering.
This article was edited for length and clarity with permission from spectrumnews.org.
