‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause

• Published in: Autism : the international journal of research and practice Vol. 24; no. 6; pp. 1423 - 1437
• Main Authors: Moseley, Rachel L, Druce, Tanya, Turner-Cobb, Julie M
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.08.2020; SAGE PUBLICATIONS, INC
• Subjects: Adaptive behavior; Adults; Anxiety Disorders; Attention; Autism; Autism Spectrum Disorder; Autistic adults; Autistic children; Autistic Disorder; Body temperature; Communication; Coping; Correlation; Daily Living Skills; Developmental Stages; Developmental Tasks; Emotions; Everyday life; Female; Females; Focus groups; Foreign Countries; Health Behavior; Health status; Humans; Individual Differences; Knowledge Level; Menopausal women; Menopause; Menstruation; Mental depression; Mental health; Middle age; Midlife; Older Adults; Original; Pervasive Developmental Disorders; Physical symptoms; Physiology; Professional knowledge; Qualitative Research; Self care; Sensory Experience; Sensory stimulation; Social Media; Social Networks; Social Support Groups; Suicide; United Kingdom (England); autistic people; menopause; climacteric syndrome; sensory sensitivity; perimenopause; autistic women; support; knowledge; reproductive lifespan
• ISSN: 1362-3613; 1461-7005
• DOI: 10.1177/1362361319901184

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.