Researchers in Newcastle have conducted one of the first studies to conceptualise and understand the behavioural features of the pathological demand avoidance (PDA)1 profile — a proposed subtype of autism spectrum disorder (ASD) — in children and young people.
In the first part of their study, Lisa Stuart and colleagues used data from an online survey completed by 214 children aged 4-17 years with clinically diagnosed PDA and suspected PDA, to study the relationships between extreme demand avoidance (EDA) behaviours, intolerance of uncertainty (IU), anxiety and ASD. Here, they found that both anxiety and IU significantly predicted EDA behaviours in children with diagnosed or probable PDA. The researchers thus consider that affected children use EDA in an attempt to increase certainty and predictability to alleviate anxiety.
In the second part of their study, the researchers conducted semi-structured interviews with a subsample of the participants to gain descriptive data on the association between PDA and IU. Here, parents described certainty-seeking behaviours, such as repeated questioning or verbal negotiation, or avoidance, in children showing EDA behaviours. By contrast, there were few reports of aggression as a default response to IU. Overall, the strategies used to manage IU included control behaviour, “withdrawal to fantasy” and “meltdown”.
Taken together, Stuart et al. propose that IU is a relevant construct for conceptualising demand avoidance behaviour in children with PDA. Treatment approaches based on anxiety and IU might, therefore, be beneficial for affected children. One such intervention that targets IU in ASD — Coping with Uncertainty in Everyday Situations2 — is currently under further investigation.
Stuart, L., Grahame, V., Honey, E. & Freeston, M. (2019), Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child Adolesc. Ment. Health. doi: 10.111/camh.12336.
Pathological demand avoidance: a developmental disorder identified by Elizabeth Newson in 20031 that is increasingly recognized as a distinct profile of autism. Affected patients exhibit a need to resist normal, everyday demands made by others most likely in an attempt to manage acute anxiety. Those with PDA might use social skills to manipulate others. Young people with PDA might exhibit sociability, but have a lack of sense of social identity, pride and/or shame. Many also show a labile mood that can quickly change from passive to aggressive, language delay, obsessive behaviours and over-use of role play and pretending.
1 Newson, E. et al.(2003), Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Arch. Dis. Child. 88, 595-600. doi: 10.1136/adc.88.7.595.
2Rodgers, J. et al. (2017), Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the coping with uncertainty in everyday situations (CUES©) Programme. J. Autism Dev. Disord. 47, 3959–3966. doi: 10.1007/s10803-016-2924-0.