Pathological demand avoidance
Pathological demand avoidance (PDA) is a pattern of difficulties identified and proposed as a syndrome through the clinical work of UK-based prominent child psychologist Elizabeth Newson  . Newson proposed it to be a specific pervasive developmental disorder (PDD) within the PDD “family” which is now loosely termed the Autism spectrum. 
PDA is not part of the current American Psychiatric Association‘s manual of mental disorders DSM-IV, or the World Health Organisation‘s manual ICD-10 nor is it part of the proposed revision, DSM-V. However PDA has gained a degree of recognition and clinical acceptance as a diagnosis – notably the National Autistic Society (a leading UK organisation) produced a leaflet entitled ‘What is PDA?’  after recognising the disorder in 2008.
These children resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.
As with autism and Asperger syndrome it is not yet known what causes PDA but it is thought to be a hard wiring problem in the brain and likely to be caused by a combination of factors, genetic and environmental, which may account for changes in brain development.
In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills and seem to have some but often significantly impaired theory of mind. They often engage in manipulative, domineering behaviour. The defining criteria originally proposed by Newson in 2003 are:
- Passive early history in the first year, resisting ordinary demands and missing milestones
- Continuing to resist demands, distraction techniques, resorting to meltdowns (panic attacks) if demands are enforced
- Surface sociability, but apparent lack of sense of social identity, pride or shame
- Lability of mood and impulsivity
- Comfortable in role play and pretending
- Language delay, seemingly the result of passivity
- Obsessive behavior
- Neurological signs (awkwardness, similar to autism spectrum disorders)
The Diagnostic Interview for Social and Communication Disorders (DISCO) was developed for use at The Centre for Social and Communication Disorders, by Dr Lorna Wing and Dr Judith Gould, as both a clinical and a research instrument for use with children and adults of any age. The questionnaire has 17 recognised markers for PDA within it and is a useful tool for diagnosis.
Who diagnoses PDA?
Elizabeth Newson and her colleagues at the Elizabeth Newson Centre have been diagnosing PDA since the 1980’s This centre is part of Sutherland House Children’s Services a subsidiary of Nottingham Regional Society for Children and Adults with Autism NORSACA. Elizabeth no longer works there having retired some years ago but she is succeeded by Phil Christie and his team of Psychologists, Speech Therapists Teachers and Play therapists who perform assessments on children referred there.
However, now that PDA has become increasingly recognised (see below Recognition) many more clinicians and Child and Adolescent Mental Health Teams CAMHS are diagnosing this all over the country. There has been interest from professionals worldwide wishing to receive training on diagnosing PDA and they should contact the Elizabeth Newson Centre via NORSACA for more information.
Early History of PDA
Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980’s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.
Recognition of PDA
In 2007 Phil Christie had a paper published in Good Autism Practice, a peer reviewed journal published by BILD, called The Distinctive Clinical and Educational Needs of children with Pathological Demand Avoidance Syndrome GAP 8,1,2007 3-11 PDA was recognised by the National Autistic Society in 2008 who updated their information on PDA to include a leaflet entitled What is PDA? in keeping with their other publications “What is Asperger Syndrome?” and “What is Autism?”
Guidelines for Management
Initial guidelines for managing a child with PDA were written by Elizabeth Newson because she recognised the need to treat these children differently from those with more classical autism or Asperger Syndrome. These guidelines are based around the child’s anxiety-led need to control.
The PDA Contact Group was established by a parent in 1997 to allow other parents of children diagnosed with the condition to support each other. They can provide further information on PDA. It is now based online with a support network of over 2000 members worldwide including parents and professionals. It is in the process of becoming a registered charity.
Jessica Kingsley Publishers released a book in September 2011 entitled Understanding Pathological Demand Avoidance Syndrome in Children. A Guide for parents, Teachers and other professionals. ISBN 9781849050746 They also featured an interview with the authors of the book, Phil Christie, Ruth Fidler, Margaret Duncan and Zara Healey in the JKP Blog
Professor Francesca Happé from the Institute of Psychiatry in London and Liz O’Nions published some preliminary research in January 2011 into the behavioural profile of PDA and trying to understand what causes PDA. This is the Research into PDA Factsheet. Please contact Liz if you want to participate in research. They presented some of their research at the National Autistic Society Conference on PDA in January 2011 in London and in November 2011 in Manchester
PDA Educational Experiences Research Are you a parent of a child with PDA? Are you interested in adding to what we know about the educational experiences of children with PDA? Emma Gore Langton is a Trainee Educational Psychologist at University College London. She has a BA in Experimental Psychology from the University of Oxford, and an MSc in Social, Genetic and Developmental Psychiatry from the Institute of Psychiatry. Her research interests focus on how children’s environments affect their development and learning. The research looks at building a systematic picture of the experiences of PDA children having difficulties in schools and raise awareness of the children’s’ needs and those of their their families. The research involves filling out a questionnaire about your child’s school placement and their behaviour. It is not necessary for your child to have an official diagnosis of PDA; it is sufficient that you believe your child to have PDA.
- ^ Newson E, Le Maréchal K, David C (July 2003). “Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders”. Arch. Dis. Child. 88 (7): 595–600. doi:10.1136/adc.88.7.595. PMC 1763174.PMID 12818906.
- ^ http://www.guardian.co.uk/science/2010/jun/14/john-newson-obituary
- ^ http://www.norsaca.org.uk/docs/Publications/Diagram%20and%20PDA%20Defining%20Criteria/Diagram.pdf
- ^ http://www.behavenet.com/capsules/disorders/dsm4TRclassification.htm
- ^ http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#
- ^ ‘What is PDA?’ – National Autistic Society (UK) http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx
- ^ http://www.pdacontact.org.uk/frames/index.html
- ^ Wing, L., Leekam, S. R. , Libby, S. J. , Gould, J. and Larcombe, M. (2002), The Diagnostic Interview for Social and Communication Disorders: background, inter-rater reliability and clinical use. Journal of Child Psychology and Psychiatry, 43: 307–325. doi: 10.1111/1469-7610.00023
- ^ Pathological Demand Avoidance Syndrome diagnostic criteria and relationship to autism and other developmental coding disorders
- ^ PDAS Discriminant Functions Analysis demonstrating its essential differences from autism and Asperger Syndrome Marechal, Newson
- ^ PDAS A statistical Update
- ^ PDAS What is the Outlook? Newson,E, David,C
- ^ National Autistic Society Registered Charity 269425
- ^ Research into PDA Factsheet
- Newson E., Le Maréchal K. and David C. (2003) Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood’‘, 88, 595-600.
- Educational and Handling Guidelines Elizabeth Newson (written in consultation with Phil Christie and the staff at Sutherland House School)
- Christie, Phil (2007) Good Autism Practice 8.1.2007 3-11 The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for good practice