Pathological demand avoidance in children and adolescents: A systematic review

Abstract

Requests for pathological demand avoidance diagnoses have increased over recent years but pathological demand avoidance remains a controversial issue. We undertook a systematic review of peer-reviewed studies of pathological demand avoidance, using standardised appraisal and synthesis methods, to assess how pathological demand avoidance is identified and to explore the relationships between pathological demand avoidance, autism and other developmental/psychiatric disorders. A search of PsycINFO/PubMed/MEDLINE/Embase identified 13 studies meeting inclusion criteria. Narrative synthesis was chosen due to methodological heterogeneity of the identified studies. Autistic children/adolescents constituted the majority of participants in most studies. Most studies provided clearly defined inclusion criteria together with adequate descriptions of participants and study settings. Almost all studies relied on the parental report of pathological demand avoidance symptoms/diagnosis. Identification of pathological demand avoidance in all studies seemed to be, directly or indirectly, based on the criteria developed by Newson et al. While eight studies used objective criteria for the identification of pathological demand avoidance, the measures used have methodological limitations. Though associations with anxiety have been reported, few studies took account of possible relationships between pathological demand avoidance and other conditions, such as anxiety. Methodological limitations restrict current conclusions regarding the uniformity or stability of the constellation of behaviours associated with pathological demand avoidance or the characteristics of individuals displaying them. Clinical implications of current research are discussed. Lay Abstract Requests for diagnoses of pathological demand avoidance have increased over recent years, but pathological demand avoidance remains a controversial issue. The concept of pathological demand avoidance has been criticised for undermining the self-advocacy of autistic people and neglecting the potential role of anxiety as a possible underlying or contributing cause. The current study was undertaken to summarise and review the methodological quality and findings from current research into pathological demand avoidance in children and adolescents. Further aims were to describe how pathological demand avoidance has been identified and to explore the relationships with autism and other developmental and psychiatric disorders. After a comprehensive search, 13 relevant studies using a wide range of methods were identified and systematic quality assessments were undertaken. All the studies had based the identification of pathological demand avoidance, directly or indirectly, on descriptions from the original study by Newson and colleagues. However, the methods used to develop these criteria were not clearly described. Most studies relied exclusively on parental report for data, and there was a general failure to take account of alternative explanations for the behaviours under study. No studies explored the views of individuals with pathological demand avoidance themselves. Problems concerning definition and measurement in the reviewed studies currently limit any conclusions regarding the uniformity or stability of the behaviours described, or the characteristics of individuals displaying them. Relationships between pathological demand avoidance and other emotional and behavioural difficulties should be explored in future research, as should the perspectives of individuals with pathological demand avoidance themselves.

Mapping experiences of pathological demand avoidance in Ireland

“…There needs to be consensus that, as a profile, recognition of PDA does not necessarily require a separate diagnosis where autism has already been confirmed in that professionals are equipped with the competencies to note the presentation of anxiety and extreme demand avoidance and to signpost parents and educators towards appropriate support, intervention, services and educational placements. The nature of extreme demand avoidance is undeniably challenging for individuals and their families and the focus on PDA as a separate ‘syndrome’ is controversial and contested (Kildahl et al., 2021) which diverts attention away from the very real needs of individuals. Arguably, a more useful focus would be to consider the lived experience of individuals using the Comprehensive and Brief International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism (Bölte et al., 2019; ICF Research Branch, 2017) to provide a unique profile of needs across the lifespan.…”

Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia

“…For example, in a substantial volume published in 1995, noted psychiatrist Sula Wolff explained that she used the term 'schizoid' broadly, and that such 'affected children' were akin to those discovered by 'Ssucharewa (1926) and Asperger (1944)' although the term also overlapped with 'more seriously handicapped [sic]' categories [20]. Sukhareva's use of the term 'autistic (pathological avoidant) psychopathy' has echoes in today's debates about the relation of pathological demand avoidance (PDA) to the autism spectrum [21,22], although it does not appear that PDA and 'autistic (pathological avoidant) psychopathy' are necessarily synonymous.…”

Practicing psychologists’ accounts of demand avoidance and extreme demand avoidance in children and adolescents

“…Whilst some psychologists, e.g., Phil Christie have authored books discussing likely helpful approaches for demand avoidant children, empirical studies have not investigated how psychologists support children with demand avoidant behaviour or whether the construct of EDA is relevant to psychologists' work (Kildahl et al, 2021). This lack of research into practice has resulted in a lack of clinical guidance for psychologists about how to support children with EDA, which is significant, owing in part to the high levels of stress experienced by those children (Gore Langton and Frederickson, 2016;Doyle and Kenny, 2023).…”

“…Features were identified by Newson et al (2003) (see Table 1), when children who were referred for autism assessment were qualitatively different than autistic children but similar to each other. The topic has garnered much media and parent attention predominantly in the U.K., but the evidence base on the features of EDA is lacking (Kildahl et al, 2021). Research that does exist is informed by a variety of perspectives largely clinicians, namely clinical and educational psychologists (e.g., Judy Eaton, Phil Christie, Judith Gould, Norah Frederickson) and psychiatrists (e.g., Christopher Gillberg, Johnathan Green) as well as academics interested in the field (e.g., Richard Woods, Elizabeth O'Nions, Alison Moore).…”

“…Owing to the broadening of criteria for autism in the DSM-5, researchers now see more commonality between what we understand as autism and Newson's description of EDA (e.g., Kildahl et al, 2021). Eaton and Weaver (2020) describe that though there were non-autistic people in Newson's research, they would now likely meet DSM-5 criteria.…”