Autism research is “all about the blokes and the kids”: autistic women breaking the silence on menopause.

Abstract

Objectives: The menopause is a major transition marked by considerable challenges to health and well‐being. Its impact on autistic women has been almost largely ignored but is of significant concern, given the poorer physical and mental health, emotion regulation and coping skills, and the common social isolation of this group. We aimed to explore awareness and perception of the menopause; menopausal experiences and their impact across each individual’s life; ways that menopause with autism might differ from a non‐autistic menopause; and what optimal support might look like. Design: A qualitative interview study. Methods: Comprehensive interviews were conducted with 17 autistic participants (16 of whom identified as cisgender women). Inductive thematic analysis was used, guided by IPA principles and literature. Results: Four major themes were identified: (1) covering the long journey of our participants to recognizing autism in adulthood; (2) menopausal awareness and perceptions; (3) symptoms and their impact; and (4) ways that a neurodiverse menopause might differ from the norm. Menopausal experiences varied greatly and some participants experienced marked deterioration in daily function and coping skills, mental health, and social engagement. Menopausal awareness was often low, so too was confidence in help from health care professionals. Conclusions: These findings implicate the potential for menopause to severely compromise health and well‐being of autistic people and indicate an area of underserved support needs.