‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people

Abstract

Background: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing. Objectives: This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing. Design: Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people. Methods: We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis. Results: We identified 3 themes and 10 subthemes. Our first theme described ‘all the stuff that you have to do to get through life’, including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of ‘living in a world that’s not about us’, describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of ‘shedding all the layers and being myself’, including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to ‘have a good life on their own terms’. Conclusion: This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals.

Chronic Pain in Autistic Youth: Clinical Prevalence and Reflections on Tailoring Evidence-Based Interventions from an Interdisciplinary Treatment Team

“…Efforts to bridge this social “mismatch” have also been associated with “autistic burnout”, a particular form of chronic stress associated with increased anxiety, depression, and suicidality, especially in autistic adulthood [ 44 , 45 ]. Chronic stress due to nonacceptance of neurodivergence may also be exacerbated by additional intersectionalities, such as being an autistic female or having gender expansive identities [ 46 ].…”

“…Efforts to bridge this social "mismatch" have also been associated with "autistic burnout", a particular form of chronic stress associated with increased anxiety, depression, and suicidality, especially in autistic adulthood [44,45]. Chronic stress due to nonacceptance of neurodivergence may also be exacerbated by additional intersectionalities, such as being an autistic female or having gender expansive identities [46]. As underlying nervous system dysregulation is implicated in the development and maintenance of chronic pain [24], the assessment of these social stressors was critical to integrate into the conceptualization and treatment of pain in autistic youth.…”