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

Abstract

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.

Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause

“…Participants and recruitment Following approval by the Science and Technology Faculty Ethics Panel at the authors' institution, participants were sought in two purposive approaches to two Facebook support groups run by and for autistic people (see Supporting Information). The first approach was for the purpose of interview development, with a small participatory group of eight individuals (Moseley, Druce, & Turner-Cobb, 2020). The second approach, approximately two months later in May 2019, was made to recruit participants for individual interviews.…”

“It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions

“…Although several participants described helpful interactions with clinicians, negative constructions were positioned as being linked to the absence of professional awareness of the healthcare and communication needs of autistic adults. Likewise, Moseley et al (2020aMoseley et al ( , 2020b reported that autistic people perceived a frustrating lack of professional support and knowledge and highlighted a need for better resources. In the general population, many women report feeling that their gynaecological complaints have not been taken seriously by practitioners (Tomlinson et al, 2017).…”

“…However, lacking this information may limit the generalisability of findings: experience of menopause appears to differ between ethnic groups (Sayakhot et al, 2012), but ethnic minorities are under-represented in autism research (Shaia et al, 2019). Furthermore, the online method of recruitment meant that respondents were likely to have been searching for information about menopause already, perhaps due to having particularly difficult menopausal experiences (Moseley et al, 2020b). Participants were extremely insightful and knowledgeable about autism: scientifically literate and articulate "expert patients" may not be representative of the autistic population as a whole (Department of Health, 1999) which may further limit the generalisability of the findings.…”

“…However, many late-diagnosed autistic women describe personal growth as a result of overcoming obstacles throughout their lives: diagnosis had positive implications for wellbeing (Webster & Garvis, 2017). Moseley et al (2020b) asked questions such as "Are there things that you think might make menopause especially difficult for autistic women?" which enquired about negative, or clinically concerning changes that they faced.…”

Social Cognition in Autism Spectrum Disorder Across the Adult Lifespan: Influence of Age and Sex on Reading the Mind in the Eyes Task in a Cross-sectional Sample

“…Importantly, there is evidence from the general psychopathology literature suggesting females experience unique symptom aging trajectories, influenced by the interaction between environmental stressors and sex hormones. Furthermore, menopause remains an understudied stage in lifespan development in ASD (Moseley et al, 2020 ), which may play a role in symptom and cognitive dysregulation. Converging evidence suggests atypical sex-specific longitudinal development in ASD may be driven by atypical functional connectivity in the sensorimotor system, default mode network, salience network, and central executive network (Ypma et al, 2016 ; Hodes and Epperson, 2019 ; Lawrence et al, 2019 , 2020 ; Kozhemiako et al, 2020 ).…”