Paper: "'A perfect storm':
Autistic experiences of menopause and midlife"
This paper was published in 2024, in Autism.
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The authors were Dr Miranda Brady, Ms Christine Jenkins, Professor Julie Gamble-Turner, Dr Rachel Moseley, Ms Margaret Janse van Rensburg, and Mx Rose Matthews (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 first 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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Here is the first research briefing and video that the team produced, along with a pack of resources produced at the end of the three-phase 'Bridging the Silos' project. It summarises all three parts of the project, including the paper described on this page.
Summary of this paper:
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Previous studies report that menopause can be a very difficult transition for some autistic people. This study, the first in the three-phase 'Bridging the Silos' project, focuses on how autistic people experience menopause and what support and information might help them.
Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada (n=13) or the United Kingdom (n=11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause.
Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.
A video produced by the project team can be found on the below link (link will open in new window):
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https://mediaspace.carleton.ca/media/A_Perfect_Storm_Research_Brief_%28Source%29-2/1_icqzwhg8
The first research brief produced by the team.
A summary of 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!
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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!