Mapping the functioning profiles of children with Pathological/Extreme Demand Avoidance

• In Event: Poster Session 11
  In Poster Session: PS 11 Topic - Developmental Disabilities

Abstract

Pathological or Extreme Demand Avoidance (PDA, EDA) has been the object of controversy in the scientific literature on developmental disabilities. While some question the existence of PDA as a discreet diagnostic category, it has also been argued that there is enough evidence to consider children presenting with PDA as a separate group, albeit with frequent co-morbidity with ASD, ADHD and ODD (Stuart, Grahame, Honey & Freeston, 2020). A limited number of studies have identified key characteristics of PDA, when compared to other diagnoses: children with PDA seem to be generally more socially able and apparently more efficient with pretend play and role play, when compared to children with ASD; however they often display strategic social behaviour, intolerance to uncertainty which causes avoidance of everyday life demands and negative emotional responses, limited empathy and socially inappropriate behaviour, characteristics often shared with both ASD and ODD groups (O’Nions, Viding, Greven, Ronald & Happé, 2014). In terms of schooling, children with PDA frequently struggle to maintain their engagement and participation in formal education and require the integrated support of a number of professional disciplines – psychology, speech and language pathology, education welfare officers, among others (Langton & Frederickson, 2016).
We argue that a more meaningful way of examining the uniqueness of this group of children is to look at how they function and participate in everyday life – their functioning profiles. To achieve this aim, we conducted a scoping review of the literature on studies showing empirical evidence of typical functioning characteristics of children with PDA. Additionally, functioning characteristics identified in the literature were mapped onto the International Classification of Functioning Disability and Health (ICF; WHO, 2001) in order to extract a prototype of core functioning dimensions in PDA, with potential to support authentic assessment and individualised interventions.
Primary empirical peer-reviewed studies examining areas of functioning difficulty and ability in children and young people with PDA, ages 0 to 18, between 2010 and 2020, included in the review. Two independent reviewers sifted abstracts in phase one, and full texts in phase two. Meaningful statements on evidence-based functioning characteristics of children with PDA were extracted and independently linked to the ICF classification system following procedures previously adopted to match content with the ICF (e.g. Castro-Kemp, Palikara & Grande, 2019).
A final list of ICF codes including activities and participation, body functions and environmental factors are presented as core functioning features of PDA, according to the evidence currently available in the literature. Moreover, these codes are labelled as either trigger, expression of functioning difficulty or functioning ability.
While additional research may be needed to validate this map of core functioning dimensions of PDA, we argue that it constitutes a significant contribution for authentic assessment in educational contexts and across disciplines. Lastly, it helps to clarify the controversy around the term and its practical implications for children and young people’s everyday lives.

Authors

• Susana Castro-Kemp, University College London (UCL)
  Presenting Author

• Leda Kamenopoulou, Roehampton University
  Non-Presenting Author