In this article Ruth Fidler, an Education Consultant and author specialising in pathological demand avoidance (PDA) and complex autism, explores some of the difficulties facing pupils with PDA, and how staff can best approach them.
Author: Ruth Fidler
Meeting the educational needs of pupils with PDA
There is growing awareness across the UK of pupils with PDA. These are pupils who often have a difficult experience of education.
They have some features of thinking and behaving that are similar to autism, but their profile is characterised by high anxiety which drives a need to control and avoid the ordinary demands of everyday life. Lots of children try to get out of doing things they don’t want to do, but children with PDA do so to a degree that is outside the range of typical development. They sometimes even try to avoid things they might ordinarily want to do.
Their social awareness is usually greater than many children with autism, but their social and emotional empathy and identity are disrupted. They have difficulties taking responsibility for their own actions, and in predicting social and emotional consequences.
Raised anxiety, which fuels demand avoidance and diminishes their wellbeing, can make it challenging to engage children in learning. Anxiety can also reduce attendance at educational settings.
Not surprisingly parents also face challenges. Families and staff recognise that structured, predictable and direct strategies that work well for children with autism and Asperger syndrome, are less effective for children with PDA, who respond better to flexible collaborative approaches. These approaches are outlined in the Autism Education Trust National Standards.
There is some debate about the distinctive diagnosis of PDA but it is now recognised as part of the autism spectrum by an increasing number of professionals and organisations, including the National Autistic Society. There is a growing bank of research endorsing its place in our understanding of autism spectrum conditions.
At its heart the purpose of a distinctive diagnosis is not about manuals or statistics, it is about individuals. If we are to better support individuals with PDA then we need to understand what makes sense of them and what makes sense to them so we can provide effective approaches, such as those detailed in in ‘Understanding PDA syndrome in children’ (Christie, Fidler, Duncan, Healy, 2012).
One of the key strategies is to synchronise the degree of demand placed on a child, with the amount of tolerance the child has to that demand at any given time. Sometimes when presenting a task to a child it becomes quickly apparent that the level of demand is too great at that point in time.
For example, if the adult adjusts the task such as by sharing which of them completes certain elements of the task, or by suggesting that a puppet or toy (directed by the child) does the activity, it is more likely that a mutually satisfactory conclusion can be achieved. This way the task gets completed rather than abandoned and neither the child nor the adult has been put in a ‘no-win’ position.
PDA is an anxiety driven need to control and avoid demands, therefore reducing anxiety whilst increasing indirect flexible approaches is more likely to achieve successful co-operation and wellbeing. This is best achieved in the context of positive trusting relationships between the children and adults that support them. Although attending school on time and in full uniform, and learning in a classroom may be possible on some days, on other days it may present a barrier to the child’s access to education.
On these days children may need different approaches such as:
- working in small groups or on a 1:1 basis
- learning based around their personal interests
- activities that keep them regulated
- more choice
- amended hours or expectations.
The following are some approaches to support effective working with children and young people with PDA.
- Collaborate – with the child, offering approaches that recognise their strengths; with families, recognising the particular issues that they face; and with colleagues in school and other agencies so as to have a co-ordinated approach.
- Prioritise which issues to deal with at any given time - collaborate with others on deciding what the priorities are and which strategies will be used to achieve them.
- Promote wellbeing – demand avoidance is driven by raised anxiety so reducing anxiety, promoting positive self-esteem, self-awareness and good social relationships is key.
- Use indirect approaches which are creative, individualised and flexible, and which can be adapted to synchronise anxiety and demand.
- Allow additional processing time – as with other people with autism it is beneficial to allow extra time to process incoming instructions, social and sensory information. For people with PDA it can also be beneficial to allow extra time to process their anxiety and sensitivity to demands. Giving time and space to do this will facilitate better wellbeing as well as better co-operation.
Gore-Langton E & Frederickson N (2015) Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs. doi: 10.1111/1471-3802.12081.
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, 8, 538-544.
O'Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2014) Development of the 'Extreme Demand Avoidance Questionnaire' (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry, 55, 758-768.
O'Nions E, Gould J, Christie P, Gillberg C, Viding E. & Happé F. Identifying features of 'Pathological Demand Avoidance' using the Diagnostic Interview for Social and Communication Disorders (DISCO). 2015 European Child and Adolescent Psychiatry.
O'NIONS, E., QUINLAN, E., SAN JOSE CACERES, A., TULIP, H., VIDING, E. & HAPPÉ, F. (submitted) Pathological Demand Avoidance (PDA): an examination of the behavioural features using a semi-structured interview.
Gore-Langton E & Frederickson N (2015) Mapping the educational experiences of children with pathological demand avoidance. Journal of Research in Special Educational Needs
Proposed research by Liz O’Nions and Institute of Psychiatry team in 2016 is to look into what management approaches are reported to be helpful in PDA by parents and teacher.
Date added: 2 February 2016
There will be a one day course run in March 2017 on Understanding and supporting children with Pathological Demand Avoidance (PDA) organised and featuring presentations from Ruth Fidler, consultant child psychologist Phil Christie and SEND curriculum specialist Suzanne Farrell.