By Dr Michelle Garnett and Prof Tony Attwood
Introduction
The term PDA stands for Pathological Demand Syndrome and was first coined by Elizabeth Newson, a developmental psychologist, in the 1980s in the UK. She described PDA as being extremely high anxiety driven by the need to control and avoid other people’s demands and expectations. The National Autistic Society England describes PDA as being an atypical type of autism. The term does not appear in the international textbooks that guide diagnosis. Nevertheless, there has been growing research and clinical interest in PDA as many people in the Western world recognise the profile in their children and clients.
The behavioural features of PDA have recently been described in a research study by O’Nions and colleagues (2016) to include:
- non-compliance to even the most innocuous requests and insistence that others comply with their requests
- strategic avoidance of demands
- behaviours that suggest awareness of what might cause a diversion
- obsessive need for control, including domineering behaviour
- a tendency to perceive themselves as having adult status
- seeming lack of responsibility or sensitivity to other people’s distress
- poor social awareness
- sudden mood changes
- engagement and enjoyment in fantasy role-play
- extreme behaviour, for e.g., intense reactions to losing games, meltdowns
Children and teens with PDA often show positive personality qualities including having charisma, a good sense of humour and are often considered likeable, chatty and fun to be with when not asked to comply with a request.
Superficially PDA appears as defiance and obstinance. A recent study conducted by Stewart and colleagues in 2020 found that anxiety and intolerance of uncertainty was at the base of the child’s attempt to increase predictability and agency in so many situations.
Is PDA a part of Autism?
PDA is considered to be an atypical subtype of autism. It differs from typical autism in that the person shows a superficial sociability and capacity to read situations to the extent that they can manipulate them to avoid complying with demands. These children usually highly value friendship, but lack self-awareness and awareness of others, so often fail to achieve deep connections with peers. They typically have very high levels of sensory sensitivity, a different perception of time and space, and a relative lack of anchoring themselves in social experience.
How do Children with PDA Cope at School?
A survey conducted by the PDA society in the United Kingdom in 2018 found that 70% of children with PDA did not thrive in the school environment or were home-schooled. O’Nions and colleagues found in 2014 that 88% refused to attend school at some point. Children and teenagers with PDA are at great risk for losing their educational placement through exclusion due to schools being unable to create an environment that the child can tolerate to be able to cope with the learning process.
Apparent strengths in their language and communication profile means it is easy for teachers to miss making the necessary accommodations for them and to forget to look at what is driving the behaviour. The child or teenager is often caught in a maladaptive coping strategy of avoidance or arguments, and the school environment often responds with punishment, and each bring out the worst in each other.
Unfortunately, clinical experience and research suggests that the strategies frequently used for autism are often ineffective and counter-productive for a child with a PDA profile.
Where to from here?
During our 80+ years of combined experience in autism, we have often worked with children and teens with the PDA profile and their families. We have developed an online three-hour presentation, PDA and Autism to assist families, teachers and professionals to recognise and understand PDA, and to give guidance on the best approaches we know so far.
There are also a number of great resources available, and we highly recommend these:
Both the websites of the UK and Australia/NZ Chapters of the PDA Society:
https://www.pdasociety.org.uk/
Dr Ross Greene, American Psychologist has developed a model of care called Collaborative & Proactive Solutions (CPS) which is based on research and practice and based on collaboration and compassion. He does not use the term PDA, but instead talks about kids for whom challenging behaviour occurs when the demands and expectations being placed on them exceed their capacity to respond adaptively. His website has some great resources:
https://livesinthebalance.org/
References
O’Nions, E, · Gould, J, · Christie, P, · Gillberg, C. Viding E, & · Happé, F. (2016) Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO), Eur Child Adolesc Psychiatry 25:407–419 DOI 10.1007/s00787-015-0740-2
O’Nions E, Christie P, Gould J, Viding E, Happé F (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDAQ): preliminary observations on a trait measure for pathological demand avoidance. J Child Psychol Psychiatry 55:758–768
Stewart, L, Grahame E, Honey V, & Freeston, M. (2000). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents, Child and Adolescent Mental Health 25 (2), 59-67. https://doi.org/10.1111/camh.12336
