Paper: "'Struggling for years':
An international survey on Autistic experiences of menopause"
This paper was published in 2024, in Neurodiversity.
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The authors were Ms Christine Jenkins, Dr Rachel Moseley, Mx Rose Matthews, Ms Margaret Janse van Rensburg, Professor Julie Gamble-Turner, and Dr Miranda Brady (author links will open in separate tabs).
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You can click HERE to download a PDF of the paper.
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This study was the second part of a three-phase project, called 'Bridging the Silos', led by Dr Miranda Brady. It has its own project website where all information about the study is hosted: www.autisticmenopause.com
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Rather than creating a research summary in the same style as I've done for my other studies, I have uploaded the research briefing produced by the whole team, which summarises the paper described below as well as the other studies within the 'Bridging the Silos' project. It also includes resources for autistic people going through menopause. An even shorter version, ideal for sharing with doctors, can also be found below.
For further information, I signpost interested readers to visit the project's own website where all information about the study is hosted, www.autisticmenopause.com
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Summary of this paper:
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​Previous studies report that menopause can be a very difficult transition for some autistic people. The three-phase 'Bridging the Silos' study focused on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role throughout the three studies.
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The third phase of 'Bridging the Silos' was an online survey, co-produced with Autistic people. It explored whether a lack of awareness about menopause and autism might lead to a more difficult menopause experience. We also aimed to understand what kind of support and information Autistic people need in menopause, and what, if anything, helped Autistic people in menopause cope and even flourish through this life transition.
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We received 508 usable responses from Autistic participants in 24 different countries. Overall, the study found a relationship between lack of menopause awareness and difficulty of menopause: i.e., that those who had less knowledge about menopause tended to have a harder time. The study also found that lack of awareness of one’s autism at the start of menopause was associated with a more difficult menopause experience. Participants reported that they wished they had had more appropriate and autistic-specific information about menopause before it started. They also indicated that a lack of information and training amongst clinicians about both menopause and autism were barriers to support. Finally, greater self-awareness and self-acceptance amongst other coping mechanisms helped participants.
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Our findings highlight where there are gaps in knowledge and support for Autistic people during menopause. They highlight that knowledge about menopause, and about one’s autism, are extremely important. They also highlight coping strategies that some Autistic people have found helpful.
A summary of this paper along with the other two papers within the three-phase study can also be found in the resource pack developed by the team, and the two-page summary which can be given to healthcare professionals.
Thank you for reading!
If you found this interesting, you may like to read:
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You can also read non-academic articles and watch some talks on autistic menopause under Media and Online Publications.
Sadly there aren't many resources we know of for the menopause. But there are a few on the resources page!