‘Investigating the Diagnostic Utility of Pathological Demand Avoidance to Better Understand the Educational Experiences of Autistic Children Who Display Extreme Demand Avoidance’.

Background:

‘Pathological Demand Avoidance’ (PDA) is a term increasingly used by practitioners and parents in the United Kingdom to describe a distinct subgroup of autistic children, who purportedly differ from the typical autistic presentation in their anxiety-driven avoidance of demands. These children are held to warrant distinct educational strategies and supports, yet many educational authorities do not recognise PDA as a diagnostic category. This raises questions about the educational experiences of autistic children who receive this additional diagnosis compared to those who do not. There is, however, a dearth of research on such experiences – and therefore the utility of the PDA diagnosis – in this subgroup of children.

Objectives:

This research sought to: (1) compare directly the educational experiences of autistic children with and without an additional diagnosis of PDA and/or PDA behaviours, and (2) determine the perceived effects of the PDA diagnosis on families’ ability to access appropriate support for their children.

Methods:

216 UK-based parents or carers of autistic children (152 male, 60 female, 4 ‘other’ gender identity - aged between 4 and 19 years) participated in this study. They completed an online questionnaire which included questions about their child’s diagnostic history, measures of their educational experiences (Educational Experiences Questionnaire; Gore-Langton and Frederickson, 2016), in addition to measures of their child’s autistic features (the Social Responsiveness Scale; Constantino, 2005), demand-avoidant behaviours (the Extreme Demand Avoidance Questionnaire (EDA-Q); O’Nions et al., 2014) and behavioural problems (Strengths and Difficulties Questionnaire; Goodman, 1997). Parents were also asked to complete a final, open question inviting them to add any comments about their child’s experience of education.

Results:

To address our aims, participants were divided into three groups, depending on whether their autistic children: (1) had an additional diagnosis of PDA and obtained high scores on the EDA-Q (reflecting elevated PDA behaviours), (2) did not have an additional diagnosis of PDA but obtained high scores on the EDA-Q; and (3) did not have an additional diagnosis of PDA and obtained low scores on the EDA-Q. Higher scores on the EDA-Q were associated with a more negative experience of school. Yet, children who had a formal PDA diagnosis, in addition to their autism diagnosis, reported significantly more negative educational experiences during their child’s most challenging term at school, relative to children with similar EDA-Q scores who did not have an additional diagnosis of PDA.

Conclusions:

These initial findings suggest that a PDA diagnosis is not necessarily supporting children to access positive educational experiences. More in-depth qualitative research is needed to understand why this is the case and whether the diagnostic category has utility for parents and practitioners beyond the context examined in the current study.