How to Support Children with Pathological Demand Avoidance (PDA)

May 13, 2022
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The term Pathological Demand Avoidance (PDA) was first used by Prof. Elizabeth Newson when she recognised a profile of traits in children that she was seeing for assessment in the 1980s. PDA is widely understood to be an autistic profile, categorised by a particular ‘constellation of traits’ within autism. In this article, we will look in detail at PDA, at the characteristics that make up this profile, and consider some strategies that may help education professionals and parents or carers support children and young people with a PDA profile.

What is Pathological Demand Avoidance?

PDA and Autism

Autism is a life-long neurological difference which means that autistic individuals experience and interact with the world differently to non-autistic people. These differences can result in various strengths and challenges. 

It is best understood within the context of neurodiversity, which is the concept that the human brain shows a wide range of natural variance. Autism is a difference to be supported, rather than a disorder or impairment to be treated.  

Autism is a spectrum, meaning that a person’s experience of autism is unique to them. You will not come across two autistic individuals who share exactly the same strengths and challenges. This means that each person may need different support, and to varying degrees. 

Although the autistic experience is different for each individual, there are shared areas of difference. The main areas of difference are:

  • Communication and language differences.
  • Social interaction differences.
  • Rigid and repetitive behaviours, activities, and interests.
  • Sensory differences.

Individuals with PDA will share these areas of difference with other autistic people, but, in addition, they also display a further particular set of traits, specific to Pathological Demand Avoidance. 

Characteristics of Pathological Demand Avoidance

‘Demand avoidance’ refers to being unable to do certain things at certain times, and the measures taken in order to avoid demands.This is something we all do on occasion. However, in the case of PDA, as the name suggests, the demand avoidance is at a pathological level – it is all-encompassing.

The PDA Society states that the key features of a PDA profile include:

  • Resisting and avoiding the ordinary demands of life. 
  • Using social strategies as part of the avoidance.
  • Appearing sociable on the surface, but lacking depth in understanding.
  • Experiencing excessive mood swings and impulsivity.
  • Displaying ‘obsessive’ behaviour, often focussed on other people.
  • Appearing comfortable in pretend play – sometimes to an extreme extent. (This may not be in all cases).

Some of these features are contrary to what some might think of as ‘typical’ features of autism – for example, being comfortable in role play. However, as we mentioned above, there is no single autistic experience. Moving away from stereotyped ideas of what it means to be autistic, and building your own understanding of autism, can help you make further steps towards understanding and supporting PDA.

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Further Your Understanding

Our Autism Awareness in Education course is designed to help anyone who works in an education setting understand more about autism, and how to provide individualised, effective support to the autistic children and young people in their care. You might also be interested in our SEND in the Classroom course.

Currently PDA is not featured in the DSM or ICD (the criteria used for a medical diagnosis of autism) but it may be in future versions. The children and young people you support may receive a diagnosis of autism or autism spectrum disorder (ASD) with a further note that they have a PDA profile, or PDA traits. The lack of recognition of PDA has been a source of frustration for many families when trying to ensure effective support is in place. 

In PDA, demands are avoided simply because they are demands, not necessarily because they relate to things that are unpleasant or onerous. The avoidance could be related to things that the child themselves really enjoys, and to their own detriment. This avoidance could also fluctuate (depending on anxiety levels, environments, sensory inputs, etc)  – it might be possible for a child to get dressed one day and not the next, for example.

Demand avoidance and the need for control is rooted in an extreme anxiety response and it is essential that those supporting children and young people understand this.

 

It is not that the children won’t comply with the demand, rather it is that they can’t comply with the demand.

Tigger Pritchard, neurodivergent advocate, consultant, and trainer

As with autism in general, PDA is a spectrum, so each person will present differently, and may mask their difficulties. A child or young person may also mask their PDA in a school setting, managing to comply with demands, but once they are home and in a ‘safe space’ be unable to meet demands, and possibly show distressed behaviours as a result of masking for such a long period of time. For more information on autistic masking, take a look at our article, here.

 

Examples of Pathological Demand Avoidance

The Autism Education Trust highlighted that in an education setting children with PDA may:

  • Display a need to be equal or superior to others. They might not recognise the authority of school staff, and therefore not ‘show respect’ automatically.
  • Have low self-esteem – this may or may not be obviously apparent.
  • Seem to be ambivalent about their learning success.
  • React negatively to praise, for example, destroying work that has been praised. 
  • Show difficulties with emotional regulation.
  • Have an erratic pattern of progress – including setbacks.
  • Show a desire for friendship and social interaction, but often seem to ‘sabotage’ those connections through a need to be in control.
  • Have a poor attendance record, show signs of school trauma or phobia, trying to avoid school altogether.  

It’s like my body has two control centres: one is my heart and one is my brain. My heart wants to do something, but my brain says no, and no matter how hard I try, my brain just won’t let me do it. It’s like there’s a train, and there is a driver at each end. Both drivers are pulling in a different direction so the train can’t go anywhere, it just stays still. It freezes like me.

Holly, PDA Society website

What Does Demand Avoidance Look Like?

Children with PDA may use a range of avoidance techniques, including:

  • Making excuses (these can range from plausible reasons why they can’t meet the demand to claims of incapacitation such as ‘my legs are not working’).
  • Using distraction, or deflection to divert attention away from the demand.
  • Employing delaying tactics.
  • Adopting a character or role, withdrawing into fantasy.
  • Ceasing to communicate.

There is often a hierarchy to these techniques, building towards escalation if the demand remains and the avoidance is unsuccessful. It is useful to view these through the lens of the ‘fight/flight/freeze’ danger response – the anxiety generated by the demand has now built to the point where this human response to danger is triggered. This could include:

  • Meltdown (fight), which might include distressed behaviours such as crying, shouting, swearing, aggression, or self-harm.
  • Running away (flight) or removing themselves from the situation.
  • Shutdowns (freeze), where the child internalises the panic, withdraws, and ceases to engage or communicate.

It is important to remember that these children are not being rude or difficult – they are experiencing heightened anxiety responses to demands or feelings of not being in control.

 

How Might Schools and Parents Support Children with PDA?

When supporting a child or young person with PDA, there is no right or wrong way. Your approach will need to adapt to meet the needs of the individual, as you learn what works and doesn’t work for them. However, there are some key principles that can be kept in mind.

PDA at Home

There is no set guidance on how to parent a child with PDA. Each child is individual and will have their own set of strengths and challenges. Parenting a child with PDA will mean that you often need to re-evaluate what you (and society in general) might consider ‘parenting norms’ in order to support your child. For example, the assumption that children thrive with firm boundaries and consistently applied rules is unlikely to be successful for children with a PDA profile. An approach based on negotiation and collaboration is thought to be more effective.

This re-evaluation can be particularly difficult if you have other children (they may need completely different things from you as a parent, and may not understand why some rules apply to them and not their siblings) or if those around you do not have an understanding of what the PDA profile might entail.

We will look at some strategies that can be used in both home and school settings a little further on in this section. However, the PDA Society offers some key pointers for helpful approaches to parenting children and young people with PDA, including:

  • Build your own understanding. Being able to understand behaviours, their root in anxiety, and what might be driving them will help inform your approach. Learn all you can about Pathological Demand Avoidance and autism. You are already the expert on your child, and you will need to help educate others who support them (school staff, health professionals, etc).
  • Adjust your mindset. This includes taking a long view, adjusting your expectations of the balance in a parent-child relationship in order to gain more equality, being flexible, and seeing the positives (try not to always focus on the challenges your child faces – celebrate the positive qualities that PDA brings). Also try to access some support for you – parent groups can be a good source of support from people that have first hand experience of PDA.
  • Create an optimal environment for your child. This includes balancing tolerance and demands – acknowledging that tolerance for demands will fluctuate and your child will need ‘downtime’ for anxiety to lessen. Agree non-negotiable boundaries as a family, with input from your child, and build in extra time to your routines. Organising your home to be mindful of any sensory differences your child may experience will also be key, as if those needs are not met it can increase anxiety.

PDA in Schools

Research conducted in 2019 found that of 1000 school-age respondents with PDA, 50% weren’t in school and a further 20% were ‘regularly’ unable to access it. This indicates a need for greater awareness within education (although this is building, with some specific resources now becoming more readily available). However, the fact that many education professionals are not fully aware of PDA and potential supportive strategies, plus the demand-heavy nature of most education settings, means that needs can go unmet. This can often result in distressed behaviours, and ultimately, school exclusions.

PDA Strategies

Strategies that may help support autistic children and young people are often not successful in supporting those with PDA, so you will need to adapt your practice – always starting with the needs of the individual. (Your provision should be grounded in the Graduated Approach as recommended by the SEND Code of Practice. For detailed information about the Graduated Approach, our Hub article can be found here.)

The PDA Society uses the acronym, PANDA to offer an approach to supporting PDA. It stands for:

  • Pick battles
  • Anxiety management 
  • Negotiation and collaboration 
  • Disguise and manage demands 
  • Adaptation 

We shall look at each of these in turn, offering some practical strategies that you might be able to apply in your settings. These are also applicable in a home setting. As with your support for any child with SEND, it is your duty to make reasonable adjustments to your practice to help support the needs of children with PDA.

Pick your battlesdrop down menu

Think carefully about which rules and requirements absolutely need to be in place, and which do not. For example, rules that ensure the safety of others might be key, but the need to sit at your desk rather than stand when working might not be necessary. 

 

  • Explain the reasons for the rules or demands that are in place, and where possible externalise the reasons to those beyond your own personal control – for example  ‘because it is health and safety law’.
  • Try to offer the child some control and choice – for example if they have to sit down, allow them to choose the desk or particular seat. 

Anxiety managementdrop down menu

It is essential that you put in place measures to reduce anxiety wherever possible. This should include:

 

  • Finding out from the child or young person (with input from their parents and carers) whether there are particular requests, situations, or environments where their anxiety is at its highest. Then consider how you can try to ease that.
  • Managing uncertainty – use strategies such as timetables and prepare for events or transitions that might lead to heightened uncertainty – for example, an upcoming term of swimming lessons.
  • Using a low arousal approach and modelling calm, consistent, and non-confrontational reactions yourself.
  • Having personalised calming strategies in place for times when meltdowns or panic attacks are experienced; this might include a quiet space that they can access.

Negotiation and collaborationdrop down menu

Building good relationships is fundamental for supporting all learners. For autistic children, this becomes even more so, as you can be a source of consistency. For children with a PDA profile, building trust is absolutely essential. 

Once you have a strong foundation of trust in place, you can apply the strategies of negotiation and collaboration. By working together to find a solution, you allow the learner some ownership and help alleviate some of the anxiety that a lack of control can induce in them.

Disguise and manage demandsdrop down menu

Before you can go about reducing demands, you need to understand what constitutes a demand. For a child or young person with PDA, demands go much further than things they are asked to do. Demands can be explicit (‘Please sit down’), implied (praising ‘good sitting’, inferring the requirement to repeat that action), or even internal (the tired feeling in their legs urging them to sit down).

Once you are more aware of demands, you can take steps to lessen and reframe them. Some ways of reframing demands include:

  • Adjusting the phrasing.
    • Use objective statements – ‘Here’s a sandwich.’ rather than, ‘Eat your lunch please.’
    • Use wording that suggests choice, ‘Maybe we could…’ ‘I’m not sure if..’
    • Use openers such as ‘I wonder whether..’ or ‘Let’s see’ – ‘I wonder whether you’d like to read that section’ could work better than, ‘It’s your turn to read now.’
  • Indirect communication.
    • Physical prompts – tap the coat rather than actually asking them to put it on.
    • Visual prompts – provide checklists that the child can follow. Remember to include some elements of choice and control, rather than a step-by-step approach to be followed in order.
  • Communicating to others nearby – for example, reminding their partner to put away the colouring pencils, rather than addressing the child directly with a demand.
  • Communicating through characters or toys.
  • Asking them to help – saying you don’t remember how to do something and asking for help can lessen a demand. In a classroom context you could ask them to support a peer with a task. 
  • Model and verbalise – for example, saying, ‘I’m feeling thirsty, so I think I had better get my water bottle.’ This might not necessarily result in them doing the same, but you are modelling the need to apply demands to yourself.  

Our Communication Skills for Teachers article details strategies that teachers can use to boost their communication skills. 

Adaptationdrop down menu

Being flexible in your approach, and making adaptations and adjustments to meet an individual’s specific needs is a cornerstone of supporting pupils with SEN. For children with PDA, you will need to consider which adaptations may help, especially those relating to demands. For example, is it necessary for the child to wear a school uniform? Do they really need to draw a margin in their book before starting their maths? Do they need to attend assembly because everyone else does? This links to the picking battles strategy.

Think of ways that you can drive learning based on the individual’s interest, and offer choices around that. For example, if the class is working on using paragraphs, does the child need to write the same story, or could they show they know how to use paragraphs by writing a review of their favourite video game? As it states in the SEND Code of Practice, teachers are expected to differentiate and personalise the curriculum to make it accessible to all.  

Offering choices can be highly effective, as can using humour, distraction, or even role play. 

Home School Communication

Statistics from the Being Misunderstood in Education report show that many parents of children with PDA have faced barriers to getting relevant support. The top reasons given were:

  • A lack of understanding of what demand avoidance means in practice (78%).
  • Lack of acceptance of PDA as a valid ’thing’ (71%).
  • Suggestions of poor parenting being a cause (52%).
  • Failure to discuss or listen to your experiences (48%).

Collaborative communication with parents and carers is essential, and a requirement of the Code of Practice. Remember that parents are the experts in their children and bring valuable insight that can inform your provision in school.

For general guidance regarding effective communication with parents, see our Hub article here. 

 

Children and young people with a PDA profile are often determined, creative, honest, inquisitive, and passionate, to name just a few strengths. However, the characteristics of the profile mean that they face challenges, especially in an environment such as school where there are innumerable daily demands. By understanding autism and the particular characteristics and traits of Pathological Demand Avoidance, you can be in a better position to support children and young people in your setting. The strategies described in this article can be a useful starting point. By getting to know the individual that you are supporting, and their preferences, strengths, and challenges, you will be able to tailor your support strategies to their specific needs.  

 

Further Resources:

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