ABSTRACT
Autistic girls, women and gender diverse people have specific needs that are underrepresented in research. Research priorities are often established by funding bodies, researchers, parents, carers and health professionals and may not meet the needs of the diverse Autistic community. This co-produced project aimed to identify what research would benefit the lives of Autistic girls, women and gender diverse people in Australia. We interviewed 47 Autistic girls, women and gender diverse people aged seven and above and obtained feedback from an additional 411 Autistic people through an online survey. Autistic young people identified six key research priorities including (1) better understanding and support at school, (2) understanding our experiences, strengths and challenges, (3) autism specific mental health support, (4) Autistic friendships and relationships, (5) experiences of gender diversity and (6) accommodations to make life easier for us. Eight key research priority areas were identified by Autistic adults including (1) understanding and supporting specific needs in adulthood, (2) experiences of trauma, abuse and sexual violence, (3) supporting mental health and wellbeing, (4) addressing barriers in healthcare, (5) understanding and supporting physical health needs, (6) addressing barriers in education and the workplace, (7) understanding the role of society, embracing neurodiversity and the importance of Autistic identity and (8) co-designing research and supports with Autistic people. We provide a discussion around the importance of focusing on these research priority areas in future autism research in Australia.
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.
