Cathy May and Karen Whichello outline the signs of PDA and the strategies parents and schools can employ to deal with it.
Pathological Demand Avoidance (PDA) is characterised by an extreme avoidance of everyday demands and an anxiety-driven need to be in control.
Prof Elizabeth Newson first documented PDA as a ‘Pervasive Developmental Disorder’ in the 1980s. Children with PDA share many of the social communication, social interaction and sensory difficulties seen within the autism spectrum and it is now recognised as a sub-type of autism by the National Autistic Society.
Features of PDA
Obsessive resistance of demands
These can include:
- giving excuses
- distracting or changing the topic of conversation
- negotiating or needing to have the last word
- bombarding with repetitive questions or noises
- withdrawing into fantasy world
- complaining of physical impairment - 'my legs won't work'
- panic-driven physical outbursts or meltdowns.
Appearing sociable on the surface but without depth of understanding
Children will often appear charming and more socially able than a child with typical autism, but will struggle to understand the subtleties of social interaction on a deeper level. The sociability is often used as a strategy to refuse a request or demand, but as they lack a deeper social understanding they may overpower, overreact or be unable to take responsibility for their actions.
Excessive mood swings
Parents often describe children with PDA as unpredictable or 'Jekyll and Hyde' as they can be charming at one moment and angry or distraught at another. Triggers for rapid mood swings are often in response to a perceived demand or feelings of not being in control.
Comfortable in role-play and pretend-play
Children with PDA often:
- engage in a level of pretend play not commonly seen in typical autism.
- have an ability to mimic and take on the roles of others. This is often used as a means of taking control or avoiding demands. In extreme cases role-play can be confused with reality.
Passionate interests and obsessions are not uncommon in individuals on the autism spectrum. However, with PDA the obsession tends to be more social in nature, often about a particular person.
They may also consider themselves at the same level as an adult as they tend not to recognise social hierarchy and their place within it.
How school can affect children with PDA
School is an environment full of demands in which PDA children can struggle and become anxious, often failing to reach their potential. It is important that parents and schools work collaboratively to help support them as much as possible.
Children with PDA can appear verbally competent. However as a result of slower processing they frequently fail to understand everything that is being said to them.
Some children are unable to comply at school and spend a great deal of energy trying to gain control or avoid demands.
This can be misinterpreted as the child not wanting to engage rather than a symptom of their spiralling anxiety. They can have panic-driven physical outbursts which can lead to fixed term or permanent exclusions.
Others may appear to be compliant at school but become more challenging when they get home.
The pressure of 'putting on an act' takes its toll and they can suffer extreme meltdowns. School refusal can be a result of the anxiety they suffer.
What can schools and parents do to help children with PDA?
- Try to remain calm and non-confrontational. The meltdown can be likened to a panic attack, so reassurance and a calm approach rather than recriminations or punishment is likely to be more effective.
- Avoid direct demands eg 'you need to’, ‘you've got to’.
- Provide choices eg 'would you like to put your shoes on here or there?'
- Communicate in a more collaborative way eg 'would you?’, ‘could you?'
- Directly praise the child to another person within their earshot if they struggle to accept praise directly.
- Acknowledge and empathise with the child’s feelings and reflect this back to them eg 'I think you are struggling; just do your best'.
- Use humour or distraction.
- Look for signs of anxiety and know when to scale back demands.
- Be prepared to negotiate.
- Limit the number of boundaries and allow the child to feel in control wherever possible.
- Identify triggers and plan strategies in advance.
- Use written requests or visual prompts to depersonalise the demand eg texts or notes.
What strategies can schools use with children with PDA?
- Allocate a key worker with whom the child can build up a trusting relationship.
- Provide choices eg ‘this work sheet or that one?'
- With knowledge of the child, notice when demands need to be reduced but also when expectations can be increased.
- Use a collaborative, respectful communication style.
- Allow the child a sense of control and be prepared to negotiate (start high and allow the child to feel that he has won).
- Visual timetables can help to depersonalise demands.
- Allow the child extra time to process what is said to them.
- Give the child responsibility for little jobs to help improve self-esteem.
- Build the curriculum around special interests.
- Create a safe space they can go to when needed.
- Be prepared to wipe the slate clean over and over again.
Useful resources for PDA
See also our article covering The National Autistic Society's conference on PDA and parent interviews.
Further information is available from The National Autistic Society, the PDA Society, and the Elizabeth Newson Centre, and in the following publications:
Simple Strategies for Supporting Children with Pathological Demand Avoidance at School, 2015. Zoe Syson, Emma Gore Langton
Understanding pathological demand avoidance syndrome in children: A guide for parents, teachers and other professionals, Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy
Cathy May is a specialist coach for autism, ADHD and PDA, and Karen Whichello is a PDA trainer and schools consultant www.sidebysidecoaching.co.uk