What is Pathological Demand Avoidance (PDA)?
Pathological demand avoidance (PDA), alternatively known as extreme demand avoidance, is a pervasive developmental disorder which falls under the autism spectrum ‘umbrella’ although it differs from autism in specific ways. Some autistic people show signs of PDA although it is possible to have PDA and not to be autistic. Those with a PDA profile seek to avoid everyday demands and expectations to an extreme extent, due to intense anxiety. This can manifest as intense emotions and mood swings.
The Puzzle of PDA
PDA was first described in 1983 by Professor Elizabeth Newson from Nottingham University. She identified a group of children who shared some typically autistic features including differences in social interaction, communication and the ability to think flexibly but also shared some other atypical features, the main one of these was anxiety-driven demand avoidance. Newson labelled this group of characteristics ‘pathological demand avoidance’ and called for PDA to be categorised and diagnosed in it’s own right and separately from autism.
Not everyone in the field agreed with Newson’s perspective, however. Uta Frith, developmental psychologist at the Institute of Cognitive Neuroscience at University London, described PDA as “a controversial category”. She noted that as there is a lack of evidence-based research in the area, “it is not clear whether or how it relates to autism [and] it’s very hard to know what is actually going on in these perplexing children.”
How does a PDA profile present?
While there is currently no conclusive and agreed definition of PDA, there is consensus about what a ‘PDA profile’ looks like. PDA can be “best understood as an anxiety driven need to be in control and avoid other people’s demands and expectations” (Christie et al, 2011.) Those with a PDA profile are driven to avoid everyday demands and expectations to an extreme extent and even ordinary daily tasks such as getting dressed, eating a meal and going out can be challenging for a child with a PDA profile. They might go to extreme lengths to avoid demands in a variety of ways including refusing, making an excuse, distracting, negotiating and doing or saying something shocking. If these avoidance strategies fail, the child may have a meltdown which may take the form of challenging behaviour, passive or active withdrawal or running away.
It is vital to understand how PDA differs from more typical autism spectrum conditions because strategies which work well for children with autism can make things worse for children with PDA. Those with a PDA profile can have better social understanding and communication skills than other autistic people, although these can mask difficulty with processing and understanding communication and social situations.
Specifically, those with a PDA profile might demonstrate the following:
Resistance and avoidance of the ordinary demands of life
The use of social strategies (such as distraction, offering excuses) as part of avoidance
Appearing to be sociable, but lacking some understanding
Experiencing excessive mood swings and impulsivity
Appearing comfortable in role play and pretence
Displaying obsessive behaviour often focused on other people
Those with a PDA profile can seem controlling and dominating, especially when they are anxious. They experience constant anxiety about real, perceived or possible demands that may be made of them or placed upon them. This impacts on their ability to form and maintain positive social relationships and they typically experience low self-esteem and negative feelings about their interactions with others.
Eight ways adults can help and support
Manage anxiety: uncertainty is a common cause of anxiety for people with a PDA profile. Think ahead for ways to reduce triggers for anxiety and recognise their underlying anxiety and sensory/social challenges. Reduce anxieties related to direct environmental demands by for example ensuring that any classroom schedules are not drawn to the attention of the child, or placed in their eye line. It can be helpful to see meltdowns as panic attacks rather than just as behaviour.
Manage demands: people with a PDA profile respond best to indirect demands placed on them. Rather than say ‘do this’ you might try ‘I wonder what it might be like to…’ Avoid using words like ‘no’ and ‘don't’ and instead offer choices within the task to give the person a feeling of control. Allow the child to have flexibility in where they sit or offer them a safe space to retreat to in the classroom rather than having to adhere to set seating patterns. Monitor their tolerance for demands and try to match them accordingly. Doing things together helps.
Minimise rules: rules can cause someone with a PDA profile anxiety. Enable the person to have some choice and control over the expectations placed upon them and allow the person to ‘sit outside’ the normal rules while offering them spontaneous rewards. It’s important to accept that some things just can’t be done.
Explain the reasoning: be ready to discuss situations when there is disagreement with a decision that has been made. Show empathy and sympathy and depersonalise decisions and rules so that the child knows who (headteacher, prime minister etc) made the original decision. This can help to maintain a positive relationship with the person who works with the child most closely.
Collaborate and negotiate: keep calm and try to proactively collaborate and negotiate with the person to solve challenges. Trust and fairness are absolutely key and it's vital to try to maintain them.
Be adaptable and flexible: try humour, distraction, novelty and role-play. Be flexible, allow plenty of time and always have a Plan B in mind!
Prioritise forming a relationship with the person rather than focusing on task completion. You might do this by learning about the child’s interests and background to support positive regard and communication.
Use praise carefully as this can become a demand. Instead, build the person’s self-esteem by giving them regular opportunities to demonstrate their skills, or speak positively about the young person indirectly to others but within their hearing.
Further resources and reading
The PDA Society offers a range of resources and helpful information
The National Autistic Society (NAS) publishes information and resources about PDA for parents and professionals
