Experiencing Pain, Seeking Care, and Being Believed: A Qualitative Study of Autistic Adults

Background: Understanding pain in autistic adults necessitates careful consideration of how pain is experienced, communicated, and interpreted by others. The present study investigated autistic adults' perspectives on pain, healthcare-seeking decisions, and the consequences of pain in daily life.Methods: Seventy-four autistic adults responded to three open-ended survey questions regarding their pain experiences, interactions with healthcare professionals, and the consequences of pain. Responses were analyzed using inductive qualitative content analysis, followed by higher-order synthesis of categories across questions. Frequencies of coded categories and themes were calculated descriptively.Results: Four higher-order themes were identified: Approaches to Healthcare Engagement (74.3%), Disruption of Functioning (41.9%), Pain Perception and Experience (37.8%), and Communicating and Being Believed (33.8%). Participants reported variability in pain characteristics and awareness, difficulties articulating pain, concerns regarding whether others recognized or believed their experiences, and effects on daily activities and emotional well-being. Half of the participants reported delaying conventional medical care without pursuing an alternative. Accounts of healthcare engagement included distrust and fear of dismissal, as well as self-advocacy and independent pain management.Conclusion: Autistic adults' accounts highlight the importance of distinguishing between difficulties in recognizing or communicating pain and difficulties in having pain understood or believed by others. Pain assessment should account for individual differences in pain experience, as well as the interpersonal and healthcare contexts in which pain is interpreted. Incorporating autistic adults' perspectives may facilitate more individualized and responsive care.