The Experience of Parents of Autistic Children with Pathological Demand Avoidance: An Interpretative Phenomenological Analysis

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Abstract

Purpose: Emergent research literature has identified emotional and behavioural challenges for autistic children with pathological demand avoidance (PDA). However, understanding of their parents’ experience is limited. This study aimed to explore the experience of parents of autistic children with PDA. Methods: Semi-structured interviews were completed with ten parents of autistic children with PDA, aged between 5 and 11 years. To explore what meaning participants gave to their lived experience, an interpretative phenomenological analysis was conducted on interview data. Results: Four main themes were developed from the IPA data analysis; the benefit of a shared understanding about PDA to the parents and their PDA children, the power of PDA and the impact on families, the emotional experience of parents, and the various ways in which they coped. Conclusion: The need for further recognition and understanding about PDA is emphasised through recommendations for future research. As is the need for flexible, informed, and appropriate support for PDA children and their families.

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