Pathological Demand Avoidance syndrome

About PDA

Elizabeth Newson, developmental psychologist, first presented PDA as a syndrome in the 1980s.

Pathological Demand Avoidance (PDA) was originally presented as a syndrome by Elizabeth Newson (above) in the 1980s.[i] Since then, there has been ongoing debate around the subject in the field of neurodevelopmental disorders.[ii]

Today, some professionals regard PDA as a sub-group of autism spectrum condition (ASC).[iii] [iv] However, it is not recognised in the main diagnostic classification systems[v] and there is contention around whether PDA can be considered as a distinct entity.[vi] [vii] [viii]

Nonetheless, many clinicians and parents recognise the specific set of behaviours displayed by certain people with this proposed condition[ix] [x]. Increasingly, St. John’s is admitting children and young people who have a diagnosis of autism, along with a ‘PDA profile’ or ‘PDA features’, as learners at our residential School and College.

Behaviours

PDA is described as ‘an anxiety-driven need to control and avoid other people’s demands and expectations’.[xi] Along with some of the characteristics associated with ASC, the National Autistic Society (NAS) outlines some of the behaviours displayed by people with a PDA profile as:[xii]

  •           resisting and avoiding the ordinary demands of life
  •           using social strategies as part of avoidance, for example, distracting, giving excuses
  •           appearing sociable but lacking some understanding
  •           experiencing excessive mood swings and impulsivity
  •           appearing comfortable in role play and pretence
  •           obsessive behaviour that is often focused on other people. 

Approaches 

The need to avoid everyday demands can have a significant impact on the ability of a person with a PDA profile to engage in education[xiii] and this group can often be faced with exclusions and breakdowns of placements.[xiv] This could be attributed to several factors, including insufficient research and evidence of the syndrome,[xv] meaning that there is inconsistent diagnosis, in turn, a lack of understanding of the individual, and the incorrect approaches being implemented to support them.

Positive Behaviour Support

St. John’s adopts a positive behaviour support (PBS) approach for all learners. This means that we view all behaviours as a communication method and understand that behaviours serve a function. It is our role to identify the function and to enable our learners to replace behaviours of concern with strategies and tools that meet their desired communication outcome through more effective means.

St. John’s does not use sanctions as a general approach to supporting behaviour for our learners, and exclusion is adopted as an absolute last resort. Furthermore, St. John’s understands that the demand-avoidant behaviours displayed by our learners with a PDA profile are not intentional and are a result of the condition.[xvi]

Research highlights sanctions as being an ineffective approach for people with a PDA profile.[xvii] [xviii]

Working with our learners with a PDA profile, we understand that some of the approaches used to support autistic people – such as a fixed routine, structure and repetition, and reward systems – are sometimes unsuccessful for those with a PDA profile.[xix] [xx]

Accounts from those supporting people with PDA have endorsed adopting a ‘low arousal approach’[xxi] that focuses on offering choice and some control, being flexible and adaptable around routines, and disguising demands, for example, with indirect questions and comments or humour.[xxii]

This approach aims to minimise anxiety levels and the formation of patterns of demand-avoidant behaviour and so supports the development of the person’s skills in coping with uncertainty and acceptance of demands[xxiii] and, ultimately, their wellbeing and access to education.[xxiv] In line with the research identifying strategies that are successful for people with a PDA profile,[xxv] [xxvi] St. John’s adopts the PANDA approach (see image above) as set out by the PDA Society:[xxvii]

Staff training

During St. John’s induction process, all staff are required to undertake basic training in PDA awareness. Those staff who are working with our learners who have a PDA profile (or who display characteristics in line with the proposed syndrome) also have access to further, more in-depth training, including a half day course and a full day course delivered by Ruth Fidler. Ruth is an educational consultant and is one of the country’s leading experts in PDA. Along with Phil Christie (a consultant child psychologist who has worked at the Elizabeth Newson Centre), she has had books published about PDA (please refer to Further information). Her training courses teach our staff about the PDA profile, underlying reasons for demand avoidant behaviours, and effective strategies to support people with a PDA profile within educational and residential settings.

All staff have ongoing support and guidance from a variety of experienced staff at St. John’s, including our Autism Lead & Head of Therapy, our PBS specialists, Speech & Language Therapy, and Occupational Therapy teams. Furthermore, each term, a multi-disciplinary team meeting is held for every learner. These meetings involve representatives from each team, alongside educational and residential staff, which supports St. John’s waking-day curriculum and enables us to reflect upon and develop our services for our learners with a PDA profile.

Referrals and admissions

Research has identified that the success of an educational placement for a child or young person with a PDA profile is in the attitude of the staff team,[xxviii] [xxix] their dedication to understanding the person as an individual, including their interests, strengths and challenges, and their ability to apply a flexible, person-centred approach to suit the specific needs of the learner.

St. John’s welcomes referrals for children and young people who have a diagnosis of ASC with a ‘PDA profile’ or ‘PDA features’, as well as those who do not have formal recognition of the latter but whose parents/carers /clinicians have identified characteristics in the child or young person which are associated with the PDA profile.

For more information on St. John’s Admissions process, please visit School admissions or College admissions.

Further information

Further research

St. John’s recognises that research into PDA is still in its infancy.[xxx] As an organisation, St. John’s staff work to keep abreast of current research in order that we can best support our learners who display characteristics associated with the PDA profile.

Additionally, St. John’s Autism Lead & Head of Therapy, Alexandra Harris, is undertaking a PhD in Psychology at the University of Sussex, and her research is investigating the experiences of autistic learners who display demand-avoidant behaviours which impact on their ability to access education.

Visit the PDA Society for information on current research. 

A note about terminology

PDA is sometimes referred to as Extreme Demand Avoidance (EDA). It has been recognised that the term ‘pathological’ can have negative connotations through the implication that the behaviour is premeditated.[xxxi] Whilst St. John’s understands that this is not the case, we use the terminology of PDA as this is currently the most recognised terminology.

References


[i] Newson, E., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: A necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88, 595–600.

[ii] Ozsivadjian, A. (2020) Editorial: Demand avoidance — pathological, extreme or oppositional? Child and Adolescent Mental Health 25, No. 2, 2020, pp. 57–58

[iii] Egan, V., Bull, E. & Trundle, G. (2020) Individual differences, ADHD, adult pathological demand avoidance, and delinquency. Research in Developmental Disabilities, Volume 105

[iv] Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, 25, 59–67.

[v] O’Nions, E. & Eaton, J. (2020) Extreme/‘pathological’ demand avoidance: an overview. Paediatrics and Child Health, Volume 30, Issue 12, pp 411-415

[vi] Green, J. (2020). Commentary: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help? – a commentary on Stuart et al (2020). Child and Adolescent Mental Health, 25, 74–76.

[vii] Stuart, L., Grahame, V., Honey, E., & Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, 25, 59–67.

[viii] Malik, O., & Baird, G. (2018). Commentary: PDA – what’s in a name? Dimensions of difficulty in children reported to have an ASD and features of extreme/pathological demand avoidance: a commentary on O’Nions et al (2018). Child and Adolescent Mental Health, 23, 387–388.

[ix] Egan, V., Bull, E. & Trundle, G. (2020) Individual differences, ADHD, adult pathological demand avoidance, and delinquency. Research in Developmental Disabilities, Volume 105

[x] Christie, P., Duncan, M., Healy, Z. and Fidler, R. (2012) Understanding Pathological Demand Avoidance syndrome in children London: Jessica Kingsley Publishers

[xi] Christie, P., Duncan, M., Healy, Z. and Fidler, R. (2012) Understanding Pathological Demand Avoidance syndrome in children London: Jessica Kingsley Publishers, page 19

[xii] National Autistic Society (n.d.) PDA – A guide for parents and carers https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pda/parents-and-carers

[xiii] Christie, P., Duncan, M., Healy, Z. and Fidler, R. (2012) Understanding Pathological Demand Avoidance syndrome in children London: Jessica Kingsley Publishers

[xiv] Gore-Langton, E., & Frederickson, N. (2016) Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs : JORSEN, 16(4), 254–263.

[xv] O’Nions, E. & Eaton, J. (2020) Extreme/‘pathological’ demand avoidance: an overview. Paediatrics and Child Health, Volume 30, Issue 12, pp 411-415

[xvi] Gore-Langton, E., & Frederickson, N. (2016) Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs : JORSEN, 16(4), 254–263.

[xvii] Eaton, J. & Banting, R. (2012) Adult diagnosis of pathological demand avoidance – subsequent care planning. Journal of Learning Disabilities and Offending Behaviour Vol. 3 No. 3, pp. 150-157

[xviii]  Carlile, J. (2011) Helping your child with PDA to play: eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home. Good Autism Practice 12/2: 51-55

[xix] Carlile, J. (2011) Helping your child with PDA to play: eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home. Good Autism Practice 12/2: 51-55

[xx] Christie, P. (2007) The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice (GAP), Volume 8, Number 1, May 2007, pp. 3-11(9)

[xxi] O’Nions, E. & Eaton, J. (2020) Extreme/‘pathological’ demand avoidance: an overview. Paediatrics and Child Health, Volume 30, Issue 12, pp 411-415

[xxii] Carlile, J. (2011) Helping your child with PDA to play: eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home. Good Autism Practice 12/2: 51-55

[xxiii] Ozsivadjian, A. (2020) Editorial: Demand avoidance — pathological, extreme or oppositional? Child and Adolescent Mental Health 25, No. 2, 2020, pp. 57–58

[xxiv] O’Nions, E. & Eaton, J. (2020) Extreme/‘pathological’ demand avoidance: an overview. Paediatrics and Child Health, Volume 30, Issue 12, pp 411-415

[xxv] Carlile, J. (2011) Helping your child with PDA to play: eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home. Good Autism Practice 12/2: 51-55

[xxvi] Christie, P. (2007) The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice (GAP), Volume 8, Number 1, May 2007, pp. 3-11(9)

[xxvii] PDA Society (n.d.) Helpful approaches infographic: PANDA strategies. Available at: https://www.pdasociety.org.uk/resources/helpful-approaches-infographic/

[xxviii] Gore-Langton, E., & Frederickson, N. (2016) Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs: JORSEN, 16(4), 254–263.

[xxix] Christie, P., Duncan, M., Healy, Z. and Fidler, R. (2012) Understanding Pathological Demand Avoidance syndrome in children London: Jessica Kingsley Publishers

[xxx] Gillberg, C. (2014). Commentary: PDA–Public display of affection or pathological demand avoidance? Reflections on O’Nions et al.(2014). Journal of Child Psychology and Psychiatry, 55(7), 769–770.

[xxxi] Gillberg, C. (2014). Commentary: PDA–Public display of affection or pathological demand avoidance? Reflections on O’Nions et al.(2014). Journal of Child Psychology and Psychiatry, 55(7), 769–770.

 

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