What is Pathological Demand Avoidance Disorder (PDA)?

“Pathological Demand Avoidance Disorder (PDA) also known as Extreme Demand Avoidance, is considered by the National Autistic Society in the UK (autism.org.uk) to be a subtype of Autism Spectrum Disorder characterized by extremely high levels of anxiety, which result in an individual constantly trying to control their environment. This need to be in control and feel safe results in opposition and avoidance of everyday demands, difficulties with emotional regulation, and often severely challenging behaviour.”’ — Dundon, R.

PDA is an extremely debilitating disorder whereby individuals have difficulty living their lives without feeling the need to control their relationships, conversations and tasks to the point where they cannot function in a social environment without the right supports.

PDA in the Therapy Room

When working with children with PDA in the therapy room, we need to go slowly and make the children feel comfortable. Gaining trust is the most important thing, as is going at the child’s pace. It is important to let go of our preconceived ideas, agendas and structures as therapists and work with the child on their development, making them feel safe and secure in the therapeutic space.

What is a Demand?

To the individual who lives with PDA, a demand can vary from someone asking direct questions to making suggestions of what they may do. A choice may be a demand. Sometimes having a schedule whereby you need to get up and go to sleep can be a demand which can trigger great anxiety to the individual with PDA. Others have suggested that being hungry and needing to eat or feeling you need to go to the toilet (biological needs) can also feel like a demand to the person with PDA. Sometimes not having a schedule is a demand, whereby the person needs to create their own schedule, placing a demand on themselves.

Who Can Diagnose PDA?

PDA is currently not recognised in Australia so it cannot be formally diagnosed. However, more and more clinicians, especially psychologists are starting to recognise that some individuals with a cluster of symptoms, such as Autism Spectrum Disorder with high anxiety and aversion to demands, can be described as having PDA. Therapists are starting to write more about strategies on how to best work with someone who has characteristics of PDA.

What Strategies Could Be Helpful to Someone Who May Be Living With PDA?

At My Therapy House we have been using our trauma-informed practice methods as well as information we have gained about PDA from the UK and therapists like Dundon to work with clients who present with characteristics of PDA. These include:

  • Working out the child’s sensory sensitivities, special interests, triggers of anxiety or challenging behaviour (which may be therapy itself if they have had traumatic experiences with different types of therapy and therapists), signs of stress and agitation, what the child is good at and what makes them happy and relaxed
  • Starting therapy sessions where the child is at and following their lead, trying not to impose any demands on them – this usually means going slow and supporting the child to feel they are in control of the therapy session
  • Developing a sense of safety and trust with the child and their caregiver by establishing a strong therapeutic relationship with them
  • Making the environment and interactions consistent and predictable
  • Supporting the child’s regulation strategies by allowing them to regulate in a way that will make them feel calm, and trust the person they are interacting with
  • Recognizing when the child is overwhelmed and responding to this straight away
  • Trying to remove and reduce demands as much as possible
  • Being playful and creative and using fun in the session, while minimising any direct requests, interactions and demands but at the same time providing them with opportunities to make choices if this is what they require
  • Videotaping our sessions so we are able to review them later to watch the child’s interactions with us and signs of any demands or triggers we may have placed on the child which we weren’t aware of in the moment of the session
Do Behavioural Strategies Work?

Unfortunately no. In fact, behavioural approaches can cause more anxiety for the individuals who live with PDA and can cause bigger and longer meltdowns and more withdrawals from interactions and society. Individuals with PDA have a neurological condition: their nervous system is not able to cope with the demands so they end up compensating for this by controlling their environment as much as possible to make themselves feel safer. It’s something they do not CHOOSE to do but do as a matter of survival. A behavioural approach may cause more trauma in the child’s life. ”Due to their differences in neurology, processing and arousal, (it is) likely that PDAers are more susceptible to being adversely impacted by negative life events, and consequently may be prone to experience trauma in their lives…..their experience of having their behaviour misunderstood and being forced to comply with directions they are otherwise unable to complete due to high anxiety has led to them experiencing ongoing trauma that further impedes their ability to form relationships with adults and engage in learning activities.” Dundon R.

The Importance of Supporting the Individual With PDA and Their Family.

PDA does not only affect the individual, but also their whole family who have often described it to be like living their life walking on eggshells around their loved one with PDA. Often these families have been through various therapies and have had different advice about managing the individual with PDA and all traditional behavioural management techniques have been unsuccessful. Parents often blame themselves for their child’s behaviour and feel utterly exhausted. It is important to support families to access various resources and information about PDA as well as other families who may be going through something similar. Because PDA is not an official diagnosis in Australia, families often need to look to the UK and some providers in Australia who may have the skills to work with these highly anxious children.

Disclaimer

It is important to understand that we, as a practice, are not experts on PDA. We have encountered many highly anxious children in our work and have learnt to modify our therapeutic approaches to support the children’s regulation so they are able to build a trusting relationship with us and engage in therapy sessions.

We are providing this information as a starting point to help parents and caregivers understand more about their child’s development. There are a number of resources that we have listed below, and we recommend that families speak to their GP or Psychologist for more specific information.

Where Can I Get More Information?

Books:

Videos:

Web Pages:

 

Family Support Services

Australian-based:

  • Pathological Demand Avoidance Australia & New Zealand – A website set up by parents of children with PDA to increase awareness and provide support. It serves as a contact point for families and professionals wanting to learn about PDA and network with others.
  • PDA for Parents and Professionals (Aus & NZ) – Private Facebook group for parents, carers and professionals to share events, information and tips to support children with PDA at home, school and in the community:
  • inTune Pathways – Parent Coaching and Online Community, Support and Strategies for families living with PDA

South Australia:

  • Our PDA Kids Support and Strategies for families living with PDA
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