Post published on Bluesky on 15 Dec 2024 10:59

Abstract

An increasing number of families are seeking assessment and support for autistic children who present with Extreme (or Pathological) Demand Avoidance (E/PDA) behaviours. However, research suggests the needs of these families may not be well understood or met by services. This study identifies their experiences and support needs, focussing on their interactions with services. Qualitative, semi-structured, online interviews with 21 parents of child(ren) with a formal diagnosis of autism and E/PDA behaviours. Interviews were analysed using an inductive, reflexive thematic analysis at a semantic level. Four themes describe the distinct experiences of families: (1) Understanding and acceptance of E/PDA behaviours is lacking; (2) Attributing blame: Judgements of E/PDA behaviours by others; (3) Lack of tailored support for E/PDA behaviours; (4) The E/PDA journey results in distress for all family members. Themes form the basis for a new interpretative model of familial experiences of E/PDA in which lack of understanding and acceptance of E/PDA drives neuro-normative judgements about E/PDA behaviours and parenting quality, leading to inadequately tailored support and familial distress. Parents’ accounts point to a breakdown in service provision for families of children with E/PDA behaviours whose ‘complex’ or ‘atypical’ presentation of autism does not fit neatly within existing classification systems and a ‘label-based’ service model. Improving education and understanding about familial experiences of E/PDA behaviours amongst professionals and services, with greater ‘personalisation’ and ‘formulation-based’ approaches is urgently needed to optimise outcomes and prevent harm. • Limited research explores experiences of families of children with Extreme (or Pathological) Demand Avoidance behaviours. • 20 semi-structured interviews with 21 parents were conducted. • Findings describe four themes relating to familial experiences of E/PDA. • Judgements about E/PDA and lack of understanding and tailored support increase distress. • Increase understanding and improve outcomes by listening to those with experience of ‘atypical’ autism presentations.