“A sickness with a person in tow”: the experience of healthcare for adults with high-functioning autism spectrum disorder

Abstract

Patient-centred care positions patients as active participants, collaborators, and experts in their healthcare and healthcare relationships - a role that adults with High Functioning Autism Spectrum Disorder (HFASD) may find challenging. The purpose of this study was to better understand the perspective and experiences of adults with HFASD in healthcare and healthcare relationships. Twenty-eight North American adults with HFASD responded to four open-ended long-answer questions online, which were analyzed using constant comparison methods within the grounded theory framework. Participants’ positive and negative experiences in healthcare were determined by their interactions with healthcare professionals who were portrayed as knowledgeable and empowering allies, or unknowledgeable and overpowering adversaries. Ultimately, these findings highlight the need for more education and knowledge about HFASD among healthcare professionals, and how it impacts these adults, as well as the need to develop evidence based interventions and tools to support adults with HFASD communication in healthcare.