From awareness to action: Facilitators and advocacy in healthcare by autistic adults.

Abstract

Autistic adults face various psychological and physical health conditions which often require ongoing medical attention. Despite a greater likelihood of health conditions, autistic adults face many systemic barriers in accessing healthcare services. It is important to identify facilitators to healthcare access and recognize the impact of self-advocacy on these experiences. In this qualitative study, we interviewed 15 autistic participants to understand their experienced and desired facilitators when accessing healthcare services, as well as the role of self-advocacy in accessing these services. Overall, participants agreed that formal and informal supports, provider knowledge about autism, and provider openness to providing accommodations served as facilitators. Participants also shared about their experiences related to self-advocacy and accessing healthcare services such as examples of self-advocacy in healthcare, learning to be a self-advocate, and facilitators of self-advocacy. Implications for research and practice are discussed.Lay abstractAutistic adults often have both mental and physical health needs that require ongoing care. However, they often face obstacles when trying to get healthcare. This study aimed to find out what helps autistic adults get the healthcare they need and how self-advocacy, or speaking up for themselves, plays a role. We talked to 15 autistic individuals about their experiences and what they wished for when accessing healthcare. Participants mentioned that support from others, doctors' knowledge about autism, and doctors being willing to make changes as needed per patient need were helpful. They also shared how self-advocacy impacted their healthcare experiences, including examples of how they advocated for themselves and what helped them do so. The study offers insights that could inform future research and healthcare practices.