A phenomenological exploration of the lived experience of adults experiencing pathological demand avoidance

Abstract

This study explores the lived experiences of adults with Pathological Demand Avoidance (PDA) in Ireland. There is a paucity of research exploring the experience of those living with PDA in Ireland which impacts levels of awareness and understanding of anxiety-based demand avoidance and its intersection with autism. As lifelong conditions, this has implications for adults who can struggle to access services or appropriate supports or can be isolated in the transition from Child and Adolescent services. This paper extracts data from a national study, Mapping Experiences of Pathological Demand Avoidance in Ireland, and examines the lived experience and personal histories of adults with a diagnosis of / self-identifying with PDA and autism, consisting of statements extracted from open-ended survey responses, and in-depth interviews. A deductive approach to the analysis of their testimonies discovered four superordinate themes: (1) Bidirectional social challenges, (2) Life experiences, (3) Trust and safety and (4) Accepting our truth. Subordinate leitmotifs describe: Pervasive anxiety, Challenges negotiating life demands and Flexibility in education settings. This paper reveals the interplay between PDA, autism and mental health for these participants combined, leading to significant challenges in daily life. To support better life quality and flourishing, participants advised greater autonomy and flexibility of support across all aspects of life and more awareness of PDA across society.