Autistic women’s experience of intimate relationships: the impact of an adult diagnosis

Kock, Elizabeth; Strydom, André; O’Brady, Deirdre; Tantam, Digby

doi:10.1108/aia-09-2018-0035

Cited by 13 publications

(7 citation statements)

References 20 publications

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“…Interviews suggested that autistic people might lack the knowledge needed to make empowered health decisions during menopause and that many struggle alone. As well as highlighting unmet support needs around menopause (particularly for accessible information), our data corroborate the importance of helping people process the shame, shock, depression, and anger that might accompany a new, often highly stigmatized diagnosis (Kock, Strydom, O'Brady, & Tantam, 2019;Leedham et al, 2019). The new awareness of their 'normality' within an autistic identity could, however, transform self-criticism into self-compassion, resonant of previous studies around late diagnosis (Bargiela et al, 2016;Kanfiszer, Davies, & Collins, 2017;Kock et al, 2019;Leedham et al, 2019;Milner et al, 2019;Tan, 2018).…”

Section: Discussionsupporting

confidence: 80%

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

Moseley

Druce

Turner‐Cobb

2020

British J Health Psychol

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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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Section: Discussionsupporting

confidence: 80%

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

Moseley

Druce

Turner‐Cobb

2020

British J Health Psychol

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“…Notably, some adults described positive consequences of burnout, especially if it preceded an autism diagnosis, the benefits of which have been reported previously. 19,46,47 Late diagnosis helped the adults in our study find the autistic community, form a positive autistic identity, implement positive career and lifestyle changes, improve self-esteem, and increase confidence to self-advocate for accommodations. This finding highlights the importance of early diagnosis and teaching autistic children effective coping mechanisms (especially during key transition stages) to circumvent the burnout cycle before it begins.…”

Section: Discussionmentioning

confidence: 85%

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms

Mantzalas

Richdale

Adikari

et al. 2022

Autism in Adulthood

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Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive ''bottom-up'' approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) ''You need enough balloons to manage the weight of the rocks.'' (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.

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“…Although many women report relief and positive feelings at diagnosis, identity can be negatively impacted due to self-doubt and feelings of grief for autistic women. 13 However, this study also found that many women report a positive impact of diagnosis on their identity, due to an increase in self-acceptance and self-reflection post-diagnosis. This can in turn have a positive impact on their well-being due to an increased understanding of themselves, their behaviours, and their interpersonal relationships.…”

Section: Introductionmentioning

confidence: 52%

Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

Harmens

Sedgewick

Hobson

2022

Womens Health (Lond Engl)

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Objective: There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women’s well-being and identity. This study aimed to explore the well-being and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis. Methods: Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview. Results: Well-being was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and well-being. The subthemes of don’t forget I’m autistic; what now?; having to be the professional; and no one saw me were also identified. Conclusion: These results suggest that autistic women’s well-being and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support well-being.

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Autistic women’s experience of intimate relationships: the impact of an adult diagnosis

Cited by 13 publications

References 20 publications

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

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

What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms

Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

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