Do YOU recognise PDA?
Pathological Demand Avoidance Syndrome (PDA) was first described in the 1980s by Professor Elizabeth Newson of Nottingham University, who led the university’s Child Development Research Unit (and later helped to set up NORSACA's Early Years Diagnostic Centre).
Children in need of referral to these specialist clinics were, by definition, ‘complex’, ‘puzzling’ or atypical in some way. Amongst these were children who reminded their referrers of autism. Yet, although they were clearly not classically autistic, they were also significantly different to others who shared their ‘best fit’ diagnosis of “Pervasive Developmental Disorder not otherwise specified” (PDD-NOS or ‘atypical autism’) as classified by DSM-IV.
Newson and her team were aware of the practical consequences and unsatisfactory nature of a PDD-nos label for these unusual children. Certainly they were ‘atypical’, but they were often seen as too sociable, too imaginative or too comfortable in role play to be recognised as even ‘atypically autistic’ outside of specialist clinical settings. Naturally this lack of recognition had negative implications for domestic, professional and educational understanding and support of these children.
After some time the clinic had gathered detailed records and assessments of a number of these ‘diagnostically problematic’ children and it was noticed that although they were very different to other atypically autistic children, they did have a great deal in common with each other. It was the study of their shared strengths, weaknesses and needs that lead to Newson’s proposal of Pathological Demand Avoidance Syndrome. PDA identifies the unique characteristics of these individuals, how best to meet their needs and differentiate ‘PDA appropriate’ support from traditional ASD interventions that are less effective with the syndrome.
PDA remains as relevant today as it was when Newson first proposed the syndrome. The latest revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) has dispensed with the separate categories of PDD-NOS, Autism Disorder and Asperger’s Disorder and merged these under one umbrella classification of Autistic Spectrum Disorder. The sole diagnostic refinement being to assign a level 1, 2 or 3, depending on the severity of the condition.
Some argue that this revision shifts emphasis away from ‘labels’ and directs focus towards identifying and meeting the needs of the individual. Indeed establishing needs should be the priority and is precisely why diagnosis and understanding of PDA is so important. Whilst individual characteristics associated with PDA can be found in other presentations of an autistic spectrum disorder, it is the uncommon combination of characteristics, strengths and weaknesses that makes the PDA profile so unique to cater for.