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). With the support of the PDA society, Libby Hill, Liz O’Nions, Aaron Yorke and Kelly Jarvis, we’ll be discussing the following support methods at our webinar on the 28th of June 2024;

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Why not sign up for our intensive full-day PDA workshop?

We have the globally renowned post-doctorate research fellow Liz O’Nions with us, providing us with detailed education on PDA diagnostics and the research she has undertaken in this field – an ever developing area as we search for the diagnostic tool that will allow PDA to be recognised in the diagnostic manuals. Liz will be sharing lots of knowledge, her work is cited in many diagnostic reports, training and work undertaken by PDA professionals globally.

Liz is currently working as a post-doctoral researcher at the UCL Division of Psychology and Language Sciences. She is currently working on a project looking at health and health inequalities experienced by autistic adults aged 50+. She began researching PDA during her PhD at King’s College London from 2010-2013, and has continued to conduct research on and related to PDA since then. She has also given talks on PDA to audiences in the UK, the Netherlands, Finland, and Belgium.

We will also be hearing from Libby Hill; Libby qualified as a speech and language therapist from the prestigious University College, London in 1986. She remains as passionate about what she does now as she was then, which most definitely comes across in her work. Her practical, pragmatic approach works well with all children.

She is a member of the Royal College of Speech and language therapists and ASLTIP and is registered with the Health Professions Council. She also has an enhanced CRB/DBS check.
Libby set up Small Talk Speech and language therapy in 2007 which has grown to include speech and language therapists, SLT assistants, early years practitioners and counsellors with access to Clinical Psychology and Educational Psychology.

She set up Smart Talkers Pre-School communication groups in 2009 which are franchised in the UK and abroad. In 2011 she created S & L World, the global bulletin for Speech and language professionals which she continues to edit. Her latest projects include a website to provide speech therapy materials and being consultant speech and language therapist to Channel 4s ‘Born naughty?’.

We’re also excited to be working with Accepting Behaviour, which was set up in 2019 by specialist teachers Aaron & Jayne Yorke to provide an acceptance-based support service for schools and families supporting autistic children and those with ADHD, social communication and interaction differences. We work within the West Midlands and Worcestershire and can support nationwide through online consultations and statutory report writing.

Aaron has 20 years of experience as a qualified specialist teacher & autism advisor for Local Authorities, with a BSc in Psychology, QTS, & PGC in Autism. He has Qualified Teacher status working as an SEN Teacher, Autism specialism. Post Grad Certificate In Asperger Syndrome from Sheffield University. LA autism advisor for the Birmingham Local Authority. His role involved advising schools on supporting autistic children and young people. He was also an Autism Post 16 lead support advisor, worked with the Children Out of School provision, and was required to write outcomes for Education Health Care Plans. He is also trained in delivering The Autism Education Trust.

Finally, we’ll be hearing from the PDA Society, who work to provide information, support and training about PDA for individuals, families and professionals. They aim to increase acceptance and understanding of a PDA profile and to improve outcomes for individuals and families by focusing everyone involved on ‘what helps’. These aims are underpinned by their 5 year strategy and its 6 main goals:

At our workshop, you’ll:

Together, let’s unpick the complexities of this misunderstood presentation and empower ourselves in supporting children (and adults) who present with PDA.

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