Autistic women often struggle with the onset of menstruation, a key transition point in the female reproductive lifespan. Presently, there is no research investigating how autistic people navigate the menopausal transition, and whether it poses additional challenges in addition to those already faced by neurotypical women. As a preliminary participatory study in this area, we conducted an online focus group with seven autistic individuals, aged 49–63 years (median = 64.5 years) and assigned female at birth, to explore the state of knowledge about the menopause in autism, difficulties the menopause might bring, support that might be needed, and what questions require scientific investigation. Thematic analysis of the discussion generated three themes: (a) lack of knowledge and understanding; (b) cracking the mask and adaptive functioning; and (c) finding support. Themes suggested a lack of professional knowledge, understanding and communication about menopause for autistic people, and an absence of support. Menopause was discussed as heightening pre-existing and generating new cognitive, social, emotional and sensory difficulties. This study illustrates the need for greater focus of attention towards how autistic people cope with the major life transition of menopause. Lay abstract Autistic girls are known to struggle with the onset of menstruation, reporting that during their period, sensory sensitivities are heightened, it becomes more difficult to think clearly and control their emotions and they struggle more with everyday life and self-care. Yet surprisingly, nothing is known about how autistic women handle the menopausal transition in midlife. In non-autistic women, the menopause brings many physical changes and challenging symptoms from hot flushes to feeling more anxious and depressed. Because autistic women are already vulnerable to suicide, poor physical and mental health, and because they may already struggle with planning, controlling their emotions and coping with change, the menopause may be an especially challenging time. Yet, not one single study exists on the menopause in autism, so we conducted an online discussion (focus group) with seven autistic women. They confirmed that very little is known about menopause in autistic people, very little support is available and that menopause might be especially difficult for autistic people. Autism-related difficulties (including sensory sensitivity, socializing with others and communicating needs) were reported to worsen during the menopause, often so dramatically that some participants suggested they found it impossible to continue to mask their struggles. Participants also reported having extreme meltdowns, experiencing anxiety and depression, and feeling suicidal. This study highlights how important it is that professionals pay attention to menopause in autism, and discusses future research directions.

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 nonautistic 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. Statement of contribution What is already known about this subject? Menopause is recognized as a biopsychosocial transition point where women are particularly vulnerable to mental and physical ill-health and the deleterious effects of stress, unhealthy behaviours, and environments. Autistic people are known to have a reduced lifespan, with elevated suicidality, higher stress levels, and greater incidence of chronic illness. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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