PDA

What is PDA?
Pathological Demand Avoidance, a term which seems to be confined to the UK, was originally identified by Elizabeth Newson in 1980s. It is now increasingly being recognised as being part of the autism spectrum. In common with autism and Asperger syndrome, different amounts of support are required depending on how the condition affects the individual. PDA can be recognised by its very distinct presentation.

 

  • Resisting demands obsessively
This is the over-riding criterion for diagnosis. Children with PDA become experts at avoiding demands – they feel an extraordinary amount of pressure from ordinary everyday expectations. It is best understood as an anxiety driven need to be control and avoid demands and expectations of others. These could be as straightforward as ‘brush your hair’ ‘get your coat on’
As the child’s language develops the avoidance techniques can become increasing manipulative and can be seen as a range of tactics to avoid conforming to adult requests.

  • Distraction “Look out of the window” “I love your earrings” “Your hair looks nice today”
  • Excuses “I’ve got to find my teddy first”, “I want to go play in my castle” “I’m too busy”
  • Procrastination and negotiation “A bit later” “I don’t trust you today” “I have to build my tower first”
  • Physical excuses. “My legs don’t work” “My tummy hurts”, “My hand is too flat”
  • Withdrawing into fantasy. Use of doll and animal play, using the inanimate object as an avoidance technique: ‘My doll says I can’t do it’. I’m a bus and I ‘ve broken down’
  • Physical outbursts or attacks. As a last resort, a meltdown may result with the child kicking screaming, using extreme aggressive behaviour This is a form of panic on their part and is usually displayed when other strategies haven’t worked or when their anxiety is too high that they will ‘explode’ or have a ‘meltdown’.

 

  • Passivity in first year

Newson found that a high proportion of children with PDA were described as being passive during the first year of their life, and in the early years displaying lack of interaction with their environment. Toys are dropped without looking without any attempt made for reaching. As demands to respond are increased, objections to co-operate become stronger and parents talk about adopting a ‘velvet gloves’ treatment. The child’s difficulties are highlighted with nursery attendance as refusal to conform become stronger

 

  • Appearing sociable, but lacking depth in understanding
An element of sociability and empathy are apparent but this is at an intellectual level not an emotional one. With peers a bossy and adult like manner can be adopted which leads to social difficulties. Voicing of rules such as ‘don’t put your elbows on the table’ ‘wash your hands’ are commonplace however personally they feel excluded from such practices.

 

  • Excessive mood swings
Frequent mood swings are experienced in a way that can be described as “like switching a light on and off”. This is due to their overriding need to be in charge and feel threatened to an extent by always imagining the worst case scenario.

 

  • Comfortable in role and pretend play.

Children with PDA are often highly interested in role and pretend play. This was recognised early on as being different from other children on the autism spectrum. A classic example is the child who assumes the role of teacher and will take this to extreme lengths, being in charge of a large class and addressing them by name, talking about their ‘school work’. Assuming personalities is not confined to the school scenario, TV characters can also feature in their pretend play. This can be taken to extreme lengths and confusion with pretence and reality can result.

 

  • Language delay, often with good degree of catch-up
The large majority of children with PDA are delayed in some aspect of their early speech and language development due to their overall passivity at an early age
However a striking and sudden degree of catch up becomes apparent.
Individuals with PDA have better use of eye contact (other than when avoiding demands) and conversational timing than others on the autism spectrum. Nonverbal communication is also better understood than for others on the spectrum. There are difficulties, however, with literal understanding, teasing and sarcasm.

 

  • Sensory needs
As with people with ASD those with PDA can have sensory processing difficulties, these can be with sight, touch, smell and sound. Difficulties with balance and body awareness can also be present.

 

  • Importance of a diagnosis
PDA is an extremely complex condition that has behavioural overlaps with Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), and Autism Spectrum Disorder. This overlap can mask a true diagnosis and some receive a mix and match of labels from clinicians

Obtaining a correct diagnosis is crucial to management of the condition as it differs considerably with those associated with conventional ASD. Many parents report a difficult time in their contacts with professionals who don’t recognise the nature and extent of their child’s difficulties

 

Similarity with ASD
Mention has been made of the similarity between ASD and PDA and the confusion which can exist with diagnosis. An attempt at clarification can be seen below (P Christie, Understanding PDA conference 2015)

  • Children with PDA are LESS likely:
  • to have caused anxiety to parents before 18 months of age
  • to show stereotypical motor mannerisms
  • to show (or have shown) echolalia or pronoun reversal
  • to show speech anomalies in terms of pragmatics
  • to show (or have shown) tiptoe walking
  • to show compulsive adherence to routines
  • to benefit from a rigid timetable
  • Children with PDA are MORE likely:
  • to resist demands obsessively (100%)
  • to be socially manipulative (100% by age five)
  • to show normal eye contact
  • to show excessive lability of mood and impulsivity
  • to show social mimicry (includes gestures and personal style)
  • to show role play (more extended and complete than mimicry)
  • to show other types of symbolic play
  • to be female (50%)

 

Management in the classroom
Crucial to the achievements both emotional and academic is the expertise of the key worker/LA. Flexibility, ability to respond to the child’s ever changing moods, i accommodation are just some of the necessary attributes. A highly individualised style is required based on a general understanding of PDA but also on the child’s individual personality and tolerances.

  • Awareness of the priorities of the child’s day is essential and working collaboratively to establish these would ensure a higher success rate. The child’s tolerance level will vary and on a good day increased requests are possible but it can change suddenly.
  • Requests can be de personalised i.e. referring to health and safety rules, school policies, using visual clarification and providing choices. Ground rules need to be as few as possible adoption of a didactic approach is counterproductive.
  • Collaboration is essential using an indirect non-confrontational style, i.e. ‘I wonder if perhaps someone can help me do this”. “I’m not sure where this goes”. Making a request part of a normal conversation can provide a platform for effective strategy.
  • Provision of a safe space and/or several areas where the child can go to be alone and calm themselves.
  • When a child ‘melts down’ use quiet tones, give lots of reassurance even if they are swearing obscenities at you and lashing out.
  • Providing choices are important i.e. “do you want to do writing or sums first” so the child feels he is exerting some control. Sometimes as puppet or object can be the object which asks for the child to carry out an instruction or help with sums i.e. the red car can come to the rescue (to correct a mistake).
  • Remember a structured timetable is not as successful with PDA children as with those with ASD. The rigid structure equals loss of con troll again choice is essential “You choose which job should I do after play and perhaps you can help me with it”.

 

Emotional Difficulties of children and young people with PDA

Emotional wellbeing has been described as ‘……. resilience and a sense of involvement with others, confidence…the ability to have good relationships and avoid disruptive behaviour…” NICE 2009

From this brief description one can see how the world of the child with PDA falls desperately short of these prerequisites. Very poor emotional regulation will mean mood swings, poor level of tolerance,
misunderstanding of social cause and effect, lack of empathy. These can all lead to poor emotional health as conflict, making relationships, anxiety are too frequently in evidence. As the child moves towards adolescence the difficulties become magnified and it is essential to have strategies in place. Time away from assessment driven teaching, providing individual tutorials can be very helpful. Personal issues can be explored whereby the student can lead the session at their own pace with the adult using a discreet agenda and visual materials. Using short time slots, non-threatening activities, with a suggestion for the next meeting can be an effective way of reducing the anxieties and fears of the later junior /secondary environment. The young person should be able to discuss freely fears and worries for the present and future The use of social stories remain an effective way of helping the child to work through worrying incidents both at home and at school, providing the necessary language to help with social situations is often an important part of tutorials.

  • Further information: Understanding Pathological Demand Avoidance Syndrome in Children
    (P. Christie, M. Duncan, R. Fiddler and Z. Healy) J Kingsley Publications
    www.autism.org.uk/about/what-is/pda.aspx
  • Simple Strategies for Supporting Children with Pathological Demand Avoidance at School Z. Syson and Dr E Gore Langton PDA society
    www.pdasociety.org.uk/resources/educational-strategies-booklet-from-positive-pda-2
    Catherine Routley Cert Ed. DipSEN., ToD., MA.,MSc.