“Struggling for Years”: An international survey on Autistic experiences of menopause

• Published in: Neurodiversity 2024-12, Vol.2
• Main Authors: Jenkins, Christine A., Moseley, Rachel L., Matthews, Rose J., van Rensburg, Margaret Janse, Gamble-Turner, Julie M., Brady, Miranda J.
• Format: Article
• Language: English
• ISSN: 2754-6330; 2754-6330
• DOI: 10.1177/27546330241299366

Emerging research suggests that menopause can be a difficult transition for some Autistic people. This international co-produced survey explored factors that might make menopause harder for Autistic people, such as lack of menopause and autism awareness; moreover, we aimed to explore what support Autistic people needed and what could help them cope and even flourish during this time. We employed a mixed-methods approach to analyze quantitative and qualitative responses from 508 Autistic participants. Both the quantitative and qualitative data supported relationships between lack of menopause and autism awareness and overall difficulties during menopause. Autistic participants wanted more appropriate and Autistic-specific information about menopause, and perceived lack of clinician awareness about both menopause and autism as barriers to care and support. Finally, participants reported discovery of ways to cope and even flourish during menopause through self-awareness and self-acceptance. Better awareness of autism and access to Autistic-specific menopause information is important in helping Autistic people transition through menopause. Lay abstract We believe that many Autistic people may struggle with menopause. However, we know very little about factors that might make menopause more difficult for Autistic people, and things that might help them through this transition. Our online survey, co-produced with Autistic people, 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. 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-awa