The healthcare experiences of middle and older age autistic women in the United Kingdom.

Abstract

Autistic women experience a higher prevalence of physical and mental health conditions compared with autistic men and non-autistic women, plus greater premature mortality and a higher suicide risk. However, little is known about autistic women's experiences of healthcare, particularly in middle and later life. We aimed to explore autistic women's perspectives on accessing healthcare services in the United Kingdom. Fifteen autistic women aged between 51 and 73 years participated in semi-structured interviews, which were analysed using reflexive thematic analysis. Four main themes were generated: (1) Stigma and stereotypes in professionals' understanding of autism leading to poor-quality care, (2) Accumulation of negative healthcare experiences reducing participants' confidence in services, (3) Efforts required to navigate healthcare systems and (4) The future: age-related concerns and hopes for change. The autistic women in this study reported multiple barriers to accessing healthcare and they felt stigmatised by repeated negative interactions with healthcare providers. Intersections between age and gender affected how participants felt they were perceived in healthcare settings; specifically, participants felt that being an older woman contributed to their autism-related needs being overlooked or misunderstood. Implications for services and directions for future research are discussed.Lay abstractWhy was the study done and what did the researchers do?Autistic women face distinctive healthcare challenges compared with autistic men and non-autistic women. However, there is not much information about their experiences with healthcare in the UK, especially as they age. To better understand the lived experiences of this population, the research team in this study interviewed 15 autistic women in middle to later life about their healthcare experiences. Information from the interviews was analysed by creating themes based on what the participants had reported.What did the researchers find?Four main themes came out of the analysis.1. Participants expressed concerns that stigma and stereotypes associated with autism led to poor healthcare experiences.2. Participants' confidence in seeking help was affected by having many negative experiences across their lives. Difficult interactions with healthcare providers also made them less confident in seeking help.3. Navigating the healthcare system was a challenge for participants.4. Participants thought a lot about the future. They had worries about ageing and what consequences this might have on their health and support needs. They also shared hopes for better healthcare in the future.What do the findings mean?The findings highlight that autistic women in middle to later life face many barriers in accessing healthcare. The study emphasises the need for better understanding and support for autistic women in healthcare settings.