Pathological Demand Avoidance is now widely recognised in the UK but it still lacks formal recognition as a distinct syndrome. Here Catherine Routley describes its origins, criteria and managementPathological Demand Avoidance (PDA) syndrome, a term that seems to be confined to the UK, was originally identified by the Nottingham-based developmental psychologist Elizabeth Newson in the 1980s and was documented by her, Le Maréchal and David in a paper published in the Archives of Diseases in Childhood in 2003. It is now increasingly being recognised as part of the autism spectrum although it has yet to be formally recognised as a distinct syndrome by either DSM-5 or ICD-10, the two major diagnostic manuals. In common with autism and Asperger syndrome, different amounts of support are required depending on how the condition affects the individual.
PDA can be recognised by its very distinct presentation. This includes:
- Resisting demands obsessively
This is the over-riding criterion for diagnosis. Children with PDA become experts at avoiding demands — they feel an extraordinary amount of pressure from ordinary everyday expectations. This trait is best understood as an anxiety-driven need to be in control and avoid the demands and expectations of others. These could be as straightforward as ‘brush your hair’ or ‘put your coat on’.
As the child’s language develops the avoidance techniques can become increasingly manipulative and can be seen as a range of tactics to avoid conforming to adult requests. These include:
- Distraction: ‘Look out of the window’, ‘I love your earrings’, ‘Your hair looks nice today’
- Excuses: ‘I’ve got to find my teddy first’, ‘I want to go play in my castle’, ‘I’m too busy’
- Procrastination and negotiation: ‘A bit later’, ‘I don’t trust you today’, ‘I have to build my tower first’
- Physical excuses: ‘My legs don’t work’, ‘My tummy hurts’, ‘My hand is too flat’
- Withdrawing into fantasy: use of doll and animal play, using the inanimate object as an avoidance technique; ‘My doll says I can’t do it’, ‘I’m a bus and I‘ve broken down’
- Physical outbursts or attacks: as a last resort, a meltdown may result with the child kicking, screaming, using extreme aggressive behaviour. This is a form of panic on their part and is usually displayed when other strategies haven’t worked or when their anxiety is so high that they ‘explode’ or have a ‘meltdown’.
- Passivity in the first year
Newson found that a high proportion of children with PDA were described as being passive during the first year of their life and of displaying a lack of interaction with their environment in their early years. Toys are dropped without looking with no attempt made to reach out. As demands to respond are increased, objections to co-operating become stronger and parents talk about adopting a ‘velvet gloves’ approach. The child’s difficulties are highlighted with nursery attendance as refusal to conform becomes stronger.
- Appearing sociable, but lacking depth in understanding
An element of sociability and empathy are apparent but this is at an intellectual level not an emotional one. With peers a bossy and adult like manner can be adopted which leads to social difficulties. Voicing of rules such as ‘don’t put your elbows on the table’, ‘wash your hands’ are commonplace, however personally they feel excluded from such practices
- Excessive mood swings
Frequent mood swings are experienced in a way that can be described as ‘like switching a light on and off’. This is due to an overriding need to be in charge and feeling threatened to an extent by always imagining the worst case scenario.
- Comfortable in role and pretend play
Children with PDA are often highly interested in role and pretend play. This was recognised early on as being different from other children on the autism spectrum. A classic example is the child who assumes the role of teacher and will take this to extreme lengths, being in charge of a large class and addressing them by name, talking about their ‘school work’. Assuming personalities is not confined to the school scenario, TV characters can also feature in their pretend play. Confusion with pretence and reality can result.
- Language delay, often with good degree of catch-up
The large majority of children with PDA are delayed in some aspect of their early speech and language development due to their overall passivity at an early age.
However a striking and sudden degree of catch-up becomes apparent. Individuals with PDA have better use of eye contact (other than when avoiding demands) and conversational timing than others on the autism spectrum. Non-verbal communication is also better understood than for others on the spectrum. There are difficulties, however, with literal understanding, teasing and sarcasm.
- Sensory needs
As with people with ASD those with PDA can have sensory processing difficulties, these can be with sight, touch, smell and sound. Difficulties with balance and body awareness can also be present.
Importance of a diagnosis
PDA is an extremely complex condition that has behavioural overlaps with Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), and Autism Spectrum Disorder. These overlaps can mask a true diagnosis and some receive a mix-and-match of labels from clinicians.
Obtaining a correct diagnosis is crucial to management of the condition as it differs considerably with those associated with conventional ASD. Many parents report a difficult time in their contacts with professionals who don’t recognise the nature and extent of their child’s difficulties.
Similarity with ASD
Mention has been made of the similarity between ASD and PDA and the confusion that can exist with diagnosis. An attempt at clarification can be seen below (P Christie, Understanding PDA conference 2015).
Children with PDA are LESS likely:
- to have caused anxiety to parents before 18 months of age
- to show stereotypical motor mannerisms
- to show (or have shown) echolalia or pronoun reversal
- to show speech anomalies in terms of pragmatics
- to show (or have shown) tiptoe walking
- to show compulsive adherence to routines
- to benefit from a rigid timetable
Children with PDA are MORE likely:
- to resist demands obsessively (100%)
- to be socially manipulative (100% by age five)
- to show normal eye contact
- to show excessive lability of mood and impulsivity
- to show social mimicry (includes gestures and personal style)
- to show role play (more extended and complete than mimicry)
- to show other types of symbolic play
- to be female (50%)
Management in the classroom
Crucial to the child’s achievements – both emotional and academic – is the expertise of the key worker/learning assistant. Flexibility, ability to respond to the child’s ever changing moods, accommodation are just some of the necessary attributes. A highly individualised style is required based on a general understanding of PDA but also on the child’s individual personality and tolerances.
- Awareness of the priorities of the child’s day is essential and working collaboratively to establish these should ensure a higher success rate. The child’s tolerance level will vary and on a good day increased requests are possible but the situation can change suddenly.
- Requests can be de personalised, i.e. referring to health and safety rules, school policies, using visual clarification and providing choices. Ground rules need to be as few as possible, adoption of a didactic approach is counterproductive.
- Collaboration is essential using an indirect non-confrontational style, i.e. ‘I wonder if perhaps someone can help me do this’, ‘I’m not sure where this goes’. Making a request part of a normal conversation can provide a platform for effective strategy.
- Provision of a safe space and/or several areas where the child can go to be alone and calm themselves.
- When a child ‘melts down’ use quiet tones, give lots of reassurance even if they are hurling obscenities at you and lashing out.
- Providing choices are important,e. ‘Do you want to do writing or sums first?’, so the child feels he or she is exerting some control. Sometimes a puppet or object can be used to ask the child to carry out an instruction or help with sums, i.e. the red car can come to the rescue (to correct a mistake).
- Remember a structured timetable is not as successful with PDA children as with those with ASD. The rigid structure equals loss of control, again choice is essential: ‘You choose which job I should do after play and perhaps you can help me with it’.
- Rewards are often unsuccessful. Some children find accepting praise difficult and dislike feeling they have conformed and will even destroy their work. Using surprise rewards or perks is often more helpful as it enables the child to avoid the pressure of having to work for a goal.
Understanding Pathological Demand Avoidance Syndrome in Children
by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy.
Simple Strategies for Supporting Children with Pathological Demand Avoidance at School
by Zoe Syson and Dr Emma Gore Langton