Pathological demand avoidance
Pathological demand avoidance (PDA), or Newson's syndrome, is a proposed subtype of autism characterized by an avoidance of demand-framed requests by an individual. It was proposed in 1980 by the UK child psychologist Elizabeth Newson. The Elizabeth Newson Centre in Nottingham, England carries out assessments for the NHS, local authorities and private patients around Autism Spectrum Disorder, which include, but not exclusively PDA.
Some clinicians are increasingly prepared to diagnose children (and some adults) with PDA when this subtype of autism fits the patient profile more accurately than another subtype. In the United Kingdom there are suggested interventions that can be followed in order to help integrate PDA children into the school system such as 'The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for good practice' by Phil Christie. Despite its lack of formal recognition, the National Autistic Society (a UK autism charity) have produced a leaflet entitled 'What is PDA?' in 2008.
Proposed diagnostic criteria
The defining criteria developed by Newson include:
- Passive early history in the first year, avoiding ordinary demands and missing milestones
- Continuing to avoid demands, panic attacks if demands are escalated
- Surface sociability, but apparent lack of sense of social identity
- Lability of mood and impulsive
- 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 Lorna Wing and Judith Gould, as both a clinical and a research instrument for use with children and adults of any age. The questionnaire has 17 recognized markers for PDA within it.
Newson and her colleagues at the Elizabeth Newson Centre have been diagnosing PDA since the 1980s. This centre is part of Sutherland House Children's Services a subsidiary of Nottingham Regional Society for Children and Adults with Autism NORSACA. Phil Christie and his team of psychologists, speech therapists, teachers and play therapists complete assessments on children referred there.
Newson first began to look at PDA as a specific syndrome in the 1980s 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's syndrome. They had often been labelled as 'atypical autism' or PDD-NOS. 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. In 2003 this culminated in a proposal published in Archives of Diseases in Childhood for PDA to be recognised as a separate syndrome within the pervasive developmental disorders.
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 In 2008 the National Autistic Society, a registered charity, 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?"
Pathological Demand Avoidance is not recognised either by the DSM-5 or ICD-10, the two main classification systems for mental disorder.
To be recognized a sufficient amount of consensus and clinical history needs to be present, and as a newly proposed condition PDA had not met the standard of evidence required at the time of recent revisions. In April 2014 the UK Minister of State for Care and Support Norman Lamb stated that the Department of Health, "In the course of the development of the National Institute for Health and Care Excellence (NICE) clinical guideline on the treatment of autism in children and young people (CG128), the developers looked at differential diagnoses for autism. In this, they did consider PDA, identifying it as a particular subgroup of autism that could also be described as oppositional defiant disorder (ODD). The guidance recommends that consideration should be given to differential diagnoses for autism (including ODD) and whether specific assessments are needed to help interpret the autism history and observations. However, due to the lack of evidence and the fact that the syndrome is not recognised within the DSM or ICD classifications, NICE was unable to develop specific recommendations on the assessment and treatment of PDA."
So the National Institute for Health and Care Excellence (which provides guidelines on best practice for UK clinicians) makes no mention of PDA in its guidelines for diagnosis of autism either in children or adults.
Although PDA is described as a subtype of autism, some of the proposed diagnostic criteria appear to contradict the definitions of autistic spectrum disorder. For example, one criterion for PDA is "Comfortable in role play and pretending" but the DSM-5 criteria for ASD includes "difficulties in sharing imaginative play", "inflexible adherence to routines", "rigid thinking patterns". Defenders of PDA claim this difference (amongst several others) is a subtype difference within ASD and does not invalidate the existence of PDA.
Garralda (2003) in responding to a paper by Newsom suggests that a number of case studies described by Newsom could be explained as a child who has both a developmental disorder and a coexisting mental disorder. She also suggests that a number of the proposed features could be difficult to reliably quantify (e.g. sense of identity, pride, shame).
Christie suggests a number of interventions that may be helpful, such as,
- the child having a keyworker in school
- making use of a "den" or "safe haven" that the child can retreat to during times of anxiety
- making use of novelty and variety, and of drama and role play
- use of more complex language that "tends to feel more negotiative and may also intrigue the child" and also use of humour.
- working to build personal understanding and self-esteem in the child
- use of non-confrontational approaches
- "LC Linked Data Service: Authorities and Vocabularies (Library of Congress)". id.loc.gov. Retrieved 2017-05-29.
- 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. PMC . PMID 12818906. doi:10.1136/adc.88.7.595.
- World Health Organisation (2016) International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10): Chapter V Mental and behavioural disorders (F00-F99) http://apps.who.int/classifications/icd10/browse/2016/en#/V
- Phil Christie. "The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice" (PDF). Retrieved January 20, 2013.
- 'What is PDA?' - National Autistic Society (UK) http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx
- "PDA Society • Part of the Autism Spectrum".
- 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
- Westminster, Department of the Official Report (Hansard), House of Commons,. "House of Commons Hansard Written Answers for 28 Apr 2014 (pt 0002)".
- National Institute for Health and Care Excellence (September 2011) Autism in under 19s: recognition, referral and diagnosis https://www.nice.org.uk/guidance/cg128
- National Institute for Health and Care Excellence (June 2012) Autism in adults: diagnosis and management https://www.nice.org.uk/guidance/cg142
- American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5)
- Garralda M (2003) Pathological demand avoidance syndrome or psychiatric disorder? Archives of Disease in Childhood http://adc.bmj.com/content/88/7/595.abstract/reply#archdischild_el_512
- Phil Christie (2007) The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf
- 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
- 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 978-1-84905-074-6 They also featured an interview with the authors of the book, Phil Christie, Ruth Fidler, Margaret Duncan and Zara Healey in the JKP Blog
- Downloadable booklets, leaflets and articles by various authors, and organized for parents, teachers, carers, etc.
- Reference booklet for clinicians.
- PDA Resource A resource for all aspects of PDA
- PDA Society Parent-led not-for-profit organisation offering support, advice and information to anyone involved with an individual with PDA (UK based)
- Me, Myself and PDA A blog by an adult with a diagnosis of PDA, ADHD and psychotic episodes
- A blog that explores the concept of PDA as well as offering an insight into day to day life of living with a child diagnosed with PDA