This information was originally collated by myself and Tom Crellin in order to assist a parent who was trying to seek validation with the professionals assessing her child that Pathological Demand Avoidance was a very real and valid diagnosis. I have replicated this as a blog post in the hope that it can help other parents in their journey.
In the 1980’s Professor Elizabeth Newson coined the phrase PDA to describe a group of children who all displayed a unique cluster of symptoms. During this period Professor Newson led the ‘Child Development Research Unit’ at Nottingham University. The cases that were referred to her were often complex and had an unusual developmental profile. The cases would often remind the referring clinician of a child with Autism or Asperger’s Syndrome but they didn’t quite fit this diagnostic profile in that they would often present with an atypical profile. (‘Understanding PDA in Children’ P Christie, R Fidler, M Duncan & Z Healy 2011)
These children had better imaginative play and better social and communication skills (at a surface level) than you would typically expect to see in children with a typical presentation of ASC. Indeed they had enough social insight and sociability to be able to manipulate others in their avoidance of demands and in order to remain in control of their immediate environment. They also all shared what was to become the defining feature of PDA ‘an obsessive need to avoid the demands of others’ (E Newson, K Le Maréchal and C David 2003).
In 2003 the first peer reviewed paper on PDA was published and in this paper Newson proposed that PDA be recognised as a separate sub group within the family of ‘Pervasive Developmental Disorders’ (E Newson, K Le Maréchal and C David 2003). Pervasive Development Disorder (PDD) was the recognised category used at that time by the current classification diagnostic manuals DSMVI and ICD10. (‘Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty – Foreword and Introduction, Christie 2014).
Since the publication of Newson’s paper terminology has changed and the word Autism Spectrum Disorder/Condition has become synonymous with the term PDD. The National Autism Plan for Children, also published in 2003, talked about the term ASD /ASC ‘broadly coinciding with the term Pervasive Developmental Disorder’. The more recently published NICE Guidelines on Autism Spectrum Disorders (2011) described the two terms as being ‘synonymous’. The importance of this is that PDA is best understood as being part of the autism spectrum, or one of the autism spectrum conditions (‘Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty – Foreword and Introduction, Christie 2014).
Although PDA is not currently specifically described in either of the current diagnostic manuals this does not mean that a clinician cannot diagnose this condition based on their own clinical judgment and expertise. Indeed many NHS trusts have no specific policy with regard to the diagnosis of PDA and in-fact advocate that their clinicians are free to diagnose PDA based on their own clinical judgment. This information has being gleaned by Tom Crellin following his request for information regarding the diagnosis of PDA from many NHS trusts via the freedom of information act. https://www.whatdotheyknow.com/search/Tom%20Crellin/all
Increasingly more and more NHS local authorities are diagnosing PDA and this has become very much a postcode lottery. Therefore a clinician saying that PDA is not accepted by the NHS as a real and accepted diagnosis is inaccurate because many of them now do diagnose PDA. It is often down to the individual clinician andl is not down to an NHS directive.
Dr Judith Gould speaking at the PDA conference in November 2011 emphasised that “Diagnostically the PDA sub-group is recognisable and has implications for management and support” and went on to state at the PDA Conference in Cardiff 2014 that the absence of PDA from a diagnostic manual should not be a sufficient reason for clinicians to not diagnose PDA.
The importance of PDA being highlighted and diagnosed is to better understand the child, what drives the behaviour and to signpost others to the correct and most successful handling strategies for PDA which are often different than those traditionally used for individuals with ASC. Therefore if a child has the profile as described in the diagnostic criteria for PDA then a diagnosis of ASD whose profile most closely fits that of PDA would be imperative for the long term management and understanding of that individual. This point is emphasised and discussed by Christie (2007) in ‘The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome, Guidelines for Good Practice; Good Autism Practice Journal’.
The following research helped to establish the differences and the similarities between children who fitted a typical profile of an autism spectrum condition (ASC), children who fitted a typical profile of conduct problems e.g. Oppositional Defiant Disorder (ODD) and those who fitted the Pathological Demand Avoidance (PDA) profile. Although behaviour overlaps were found between the PDA group and the ASC and CP group there were also distinct differences found.
O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance (PDA): exploring the behavioural profile; Autism: The International Journal of Research and Practice.
The ‘Extreme Demand Avoidance Questionnaire (EDAQ)’ which resulted from research conducted by O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F http://www.ncbi.nlm.nih.gov/pubmed/24117718, is a screening tool to highlight the possibility of a child having PDA http://www.pdasociety.org.uk/resources/extreme-demand-avoidance-questionnaire
The Disco diagnostic tool, devised by Gould and Wing, has PDA specific questions included to indicate if a child may have ASD sub group PDA rather than a typical presentation of ASC.
At the Lorna Wing Centre, the Diagnostic Interview for Social and Communication Disorders (DISCO) is used as part of the diagnostic process.
The DISCO has over 500 questions relating to development and untypical behaviours.
Seventeen questions relate to the behaviour described by Professor Newson and her team.
• Unusually quiet and passive in infancy
• Clumsy in gross movements
• Communicates through doll, puppet, toy animal etc
• Lacks awareness of age group, social hierarchy etc
• Rapid inexplicable changes from loving to aggression
• Uses peers as ‘mechanical aids’, bossy and domineering
• Repetitive role play – lives the part, not usual pretence
• Hands seem limp and weak for unwelcome tasks
• Repetitive questioning
• Obsessed with a person, real or fiction
• Blames others for own misdeeds
• Harasses another person – may like or dislike them
• Lack of cooperation, strongly resists
• Difficulties with others, tease, bully, refuse to take turns, makes trouble
• Socially manipulative behaviour to avoid demands
• Socially shocking behaviour with deliberate intent
• Lies, cheats, steals, fantasises, causing distress to others
(Judith Gould PDA Conference London 2011)
Leading professionals in the field of Autism appear to be in agreement that the PDA subgroup is definable and that this has implications for the successful management of the child. Unfortunately many clinicians who are not at the cutting edge of new research and developments are often unaware of recent advances and changes in terminology. I hope that this post may give you knowledge in order to successfully fight for your child and for him or her to receive the correct diagnosis and management because this is key to the long term prognosis for these children.
For more information about PDA please visit http://www.pdaresource.com/ and the http://www.pdasociety.org.uk/
If you require a friendly and non judgmental parent support group then please apply to join https://www.facebook.com/groups/pdaglobal/