The experience of mothers of autistic children with a pathological demand avoidance profile: an interpretative phenomenological analysis.

Abstract

Purpose: Emergent research literature has identified emotional and behavioural challenges for autistic children with a pathological demand avoidance profile. However, understanding of their parents' experience is limited. This study aimed to explore the experience of parents of autistic children with a pathological demand avoidance profile.

Methods: Semi-structured interviews were completed with ten parents of autistic children with a pathological demand avoidance profile, aged between 5 and 11 years (M = 8.5, SD = 1.90). All participants were mothers, aged 33-50 years (M = 42, SD = 5.35). 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 interpretative phenomenological analysis; the benefit of a shared understanding about pathological demand avoidance to the parents and their children, the power of pathological demand avoidance and the impact on families, the emotional experience of mothers, and the various ways in which they coped.

Conclusion: The need for further recognition and understanding about pathological demand avoidance is emphasised through recommendations for future research. As is the need for flexible, informed, and appropriate support for demand avoidant children and their families.