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Extreme/ ‘Pathological' Demand Avoidance: An Examination of the Behavioural Features Using a Semi-Structured Interview
Extreme/’pathological’ demand avoidance is a term coined by Elizabeth Newson to describe children within the autism spectrum who exhibit an unusual pattern of behaviour. The key characteristics of this group include (1) an obsessive resistance to complying with everyday demands; (2) an apparent ability to use behaviour strategically to subvert requests (e.g. distraction, socially shocking behaviour); (3) an obsessive need for control, including domineering behaviour towards peers and adults; (5) a tendency to perceive themselves as having adult status; (6) a tendency to adopt others’ roles when interacting; and (7) obsessive behaviour, often targetted at particular people. Intriguingly, reports suggest that those with PDA respond to different educational and management approaches than most individuals with autism – in particular spontaneity, humour and flexibility (Newson, Le Marechal & David, 2003). As such, there is a pressing need to better characterise the phenotypic profiles of these individuals to inform intervention studies targeting specific management approaches.
Objectives:
Whilst interest in extreme/’pathological’ demand avoidance is increasing apace in the UK, to date, relatively little systematic examination of the phenotypic profile has taken place. The objective of this study was to identify descriptive behavioural features from semi-structured interviews conducted with parents of 24 children aged 8-16 years who exhibit substantial features of extreme/’pathological’ demand avoidance, identified on the basis of indicators from the Diagnostic Interview for Social and Communication Disorders (DISCO) (Wing & Gould, 2002; O’Nions et al., 2015).
Methods:
Qualitative analysis using a general inductive approach (Thomas, 2006) was used to analyse the data. Four manuscripts were coded by two researchers, using open coding to highlight salient features. Preliminary codes formed the coding structure for further interviews, and additional themes or sub-themes added over the course of a full review of all interviews. Codes were then grouped into categories based on relatedness, and groups reorganized until they formed coherent themes, resulting in 11 major themes and 60 sub-themes. Subsequently, all interviews were reviewed, and the presence of each identified sub-theme coded for each individual case.
Results:
The results of the analysis highlight key behavioural traits, illustrative examples, and emergent themes. Common themes that resonate with clinical descriptions of extreme/’pathological’ demand avoidance include use of ‘strategic’ behaviour to avoid everyday demands, a lack of awareness of social hierarchy (e.g., of own/others’ age or status), and a lack of concern for one’s own reputation evident in socially shocking behaviour. Obsessive controlling behaviour towards others, often parents, was frequently reported, in addition to extreme changes in mood. Descriptions from parents also highlight the range of manifestations of avoidance behaviour, perceived triggers, and patterns of early development seen in individuals with these traits.
Conclusions:
This study provides an important step towards deepening our understanding of the behavioural profile in individuals with substantial features of extreme/’pathological’ demand avoidance, and highlights the very significant behavioural challenge that these individuals present.