Dataset Information

'When my autism broke': A qualitative study spotlighting autistic voices on menopause.

ABSTRACT: 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.

SUBMITTER: Moseley RL

PROVIDER: S-EPMC7376624 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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'When my autism broke': A qualitative study spotlighting autistic voices on menopause.

Moseley Rachel L RL Druce Tanya T Turner-Cobb Julie M JM

Autism : the international journal of research and practice 20200131 6

<h4>Lay abstract</h4>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 flus ...[more]

PMID: 32003226

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Project description:BackgroundBreast cancer is the commonest form of cancer among women globally, including in India. The rising incidence in the developing world is thought to be due to increased life expectancy, urbanisation, and adoption of western lifestyles. A recent systematic review found that Indian women living in India or as immigrants in Canada experienced a range of psychological distresses both ameliorated and exacerbated by cultural issues personally, within the family, within their community, and in the context of faith, and only two of the five qualitative studies explored the experience of women with breast cancer living in India. Distress may also affect treatment compliance.AimThe aim of the study was to explore the psychological distresses experienced by Indian women with breast cancer living in Kerala, South India, during and after treatment and to understand better what helped to relieve or increase these distresses.MethodsIn-depth interviews were conducted with 20 consenting women undergoing treatment for breast cancer. Purposive sampling was used to obtain maximum variation in sociodemographic and clinical characteristics. Interviews were verbatim transcribed, translated into English, and back-translated to Malayalam to ensure that the meaning had not been lost. English data were analysed using thematic frame work analysis and synthesised to provide a deeper understanding of the individuals' experience.ResultsThree major themes emerged from the data. The first major theme was 'far-reaching psychological distress'. This included anxiety, guilt, anger, and depression in response to the disease and physical side effects of treatment and issues relating to body image, especially hair loss and sexuality. The second major theme was 'getting on with life'. Women tried to make sense of the disease, by actively seeking information, the role of medical professionals, and their practical adaptations. Many found a new future and a new way to live normal. The third major theme was the 'support system' strongly based on family, friends, faith, and the community which affect them positively as well as negatively.ConclusionPsychological concerns related to disease and treatment are common in Indian women with particular emphasis on body image issues associated with hair loss. Family and faith were key support systems for almost all the women, although it could also be the causes of distress.

Project description:BackgroundMenopause is a biopsychosocial phenomenon encompassing the transition in a woman's life from being fertile to infertile. Although menopause may result in extremely unpleasant physical symptoms there is evidence of a low rate of reported menopausal symptoms amongst women in Asian cultures. Women's experiences, views, and responses to menopause which influences women's daily life and well-being, may vary between different societies and cultures. This study aimed to explore and describe menopausal experiences among women in Sri Lanka.MethodsA qualitative exploratory research was conducted among postmenopausal women of 46-55 years of age in the western province of Sri Lanka. Individual interviews with a purposive sample of 20 women were conducted, and data analysis was done using manifest and latent content analysis.ResultsThe results consist of an overall theme, "Menopause is a natural stage of aging" and three categories "Entering a new stage", "Managing menopause" and "Not the end of life" which emerged from 34 codes. The overall theme highlights that changes in menopause were experienced as a natural change in life, with health problems that are normal for this change and handled with different self-care practices. The category "Entering a new stage" describes the women becoming aware of menopause and its bodily changes. The category "Managing menopause" describes women's experiences of being able to find their own remedies to ease the menopausal symptoms and by engaging in religious activities and focusing on interaction with people. The category, "Not the end of life" describes women's views of themselves as still valuable because menopause was experienced as a natural part of their lives.ConclusionWomen in Sri Lanka managed menopausal problem mainly on their own as they viewed the menopause as a natural stage of aging risking unnecessary suffering and failure to detect preventable complications. Enabling support groups for menopausal women and improving on their health-seeking behaviour by encouraging them to take part in screening for cervical and breast cancer would improve their condition. Further information on additional hormone therapy with a, subsequent follow-up and evaluation by community health nurses and/or midwives, would facilitate Sri Lankan women's transition to menopause.

Project description:Altered trajectories of brain growth are often reported in Autism Spectrum Disorder (ASD), particularly during the first year of life. However, less is known about prenatal head growth trajectories, and no study has examined the relation with postnatal autistic symptom severity. The current study prospectively examined the association between fetal head growth and the spectrum of autistic symptom severity in two large population-based cohorts, including a sample of individuals with clinically diagnosed ASD. This study included 3,820 children from two longitudinal prenatal cohorts in The Netherlands and Australia, comprising 60 individuals with a confirmed diagnosis of ASD. Latent growth curve models were used to examine the relationship between fetal head circumference measured at three different time points and autistic traits measured in postnatal life using either the Social Responsiveness Scale or the Autism-Spectrum Quotient. While lower initial prenatal HC was weakly associated with increasing autistic traits in the Dutch cohort, this relationship was not observed in the Australian cohort, nor when the two cohorts were analysed together. No differences in prenatal head growth were found between individuals with ASD and controls. This large population-based study identified no consistent association across two cohorts between prenatal head growth and postnatal autistic traits. Our mixed findings suggest that further research in this area is needed. Autism Res 2018, 11: 602-612. © 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. LAY SUMMARY:It is not known whether different patterns of postnatal brain growth in Autism Spectrum Disorder (ASD) also occurs prenatally. We examined fetal head growth and autistic symptoms in two large groups from The Netherlands and Australia. Lower initial prenatal head circumference was associated with autistic traits in the Dutch, but not the Australian, group. No differences in head growth were found in individuals with ASD and controls when the data was combined. Our mixed findings suggest that more research in this area is needed.

Dataset Information

'When my autism broke': A qualitative study spotlighting autistic voices on menopause.

Publications

'When my autism broke': A qualitative study spotlighting autistic voices on menopause.

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