If you’re a parent or professional in the world of SEND (Special Educational Needs & Disabilities), you may have come across the term ‘Pathological Demand Avoidance’, often abbreviated as ‘PDA’.
What is Pathological Demand Avoidance, though, and why are we really only just starting to hear more about it? A long unrecognised and poorly understood presentation, children with PDA have historically been unfairly perceived as ‘naughty’, amongst the myriad of unjust and incorrect behavioural labels.
The term Pathological Demand Avoidance was coined by the British psychologist Elizabeth Newson in the 1980s and first used in a published research paper in 2003 – so, not all too long ago, really. The term was used to describe a group of children whose traits did not really match the ‘stereotypical’ presentation of autism which was recognised at that time, but shared certain traits with each other – the main one being a ‘persistent resistance to perceived demands’. Dr Newson believed this presentation needed its own specific identification separate to ‘atypical autism’ or ‘Pervasive Developmental Disorder Not Otherwise Stipulated’, both of which were diagnostic terms used during that era rather than terms used currently.
Now here comes the tricky bit; despite this work by Dr Elizabeth Newson, PDA isn’t recorded the DSM-5, and recognition of this distinctive presentation can be quite simply a lottery depending on where you live, and which professional undertakes an assessment. Amongst those who recognise Pathological Demand Avoidance as a distinct neurodevelopmental difference, most formally categorise PDA under the umbrella of autism, reflected by the NICE guidelines in the UK. However, some experts feel that PDA is much more complicated than this – time will tell how we see the diagnostic criteria and understanding of PDA evolves.
What is ‘Demand Avoidance’?
So, what exactly is Demand Avoidance, this term we’ve mentioned repeatedly without addressing? Good question! Considered a ‘natural human trait’, demand avoidance tends to be somewhat elevated in individuals who are neurodivergent; primarily, autistic, ADHD, and other neurodivergencies. A direct or perceived demand is something that people with high levels of demand avoidance struggle to comply with or follow – it isn’t that they don’t wish to comply, or that they are deliberately being ‘awkward’! However, it is possible to have raised levels of demand avoidance without having Pathological Demand Avoidance (PDA)!
Where do we draw the line between Demand Avoidance, and Pathological Demand Avoidance?
Demand avoidance, and PDA are two distinctive entities. According to the PDA society, whilst neurodivergent demand avoidance is usually down to situations that will cause sensory overload, anxiety, disruption of routines, lack stimulation or involve transitioning between tasks, Pathological Demand Avoidance is distinctly different in that it is all-encompassing and involves avoiding everyday tasks due to the perceived demand! The PDA society says;
“A PDA profile is also a spectrum and presents differently in different people. Some individuals may have a more externalised or active presentation – where demand avoidance may be overt, physical, aggressive or controlling. Others have more internalised or passive presentations – where demands may be resisted more quietly, anxiety is internalised and difficulties are masked. Many may have a variable presentation, depending on other factors like how well they are managing at the time, the environment, the setting, their age and so on.”
What support can parents, professionals and educators provide for Pathological Demand Avoidance?
Thankfully, there are ways in which we can support people presenting with PDA (Pathological Demand Avoidance). You can find out more about this during our upcoming webinar with Phil Christie, a well respected and highly experienced child psychologist.
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Why not sign up for our webinar: Identifying and Understanding The PDA Profile
Phil is a highly experienced and respected Consultant Child Psychologist with experience of diagnosis and assessment of autism in children across varying presentations as well as having been Director of an autism specific school and service for 30 years. He also has a background in research, training and publications, with particular emphasis on very young children and those with a diagnosis of Pathological Demand Avoidance syndrome.
The session will aim to enable participants…
- to gain a clearer understanding of the PDA profile and how it presents in individuals
- to gain awareness of some of the latest research and thinking around PDA
- to better understand the support needs of families of children and young people with a PDA profile
- to consider some of the implications of the profile for approaches that have been reported to be helpful in supporting children with PDA