“A perfect storm”: Autistic experiences of menopause and midlife

Abstract

Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada ( n = 13) or the United Kingdom ( n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (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). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study 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.