What is Pathological Demand Avoidance – and What Can Be Done About It? 

The concept of Pathological Demand Avoidance (PDA), was coined by Professor Elisabeth Newson in England in the 1980s. Newson, who primarily worked with children with autism, noticed a group of autistic children whom she felt stood out from the rest in a distinct way. 

According to Newson, these children were distinguished by:

• Initially appearing more socially adept and capable of engaging in role-playing and fantasy games than other autistic children.
• Often experiencing sudden and dramatic mood swings.
• Exhibiting high levels of anxiety.
• Demonstrating a distinct aversion to all types of demands placed on them.

Despite the prevalence of boys in the autism population, Newson described an even gender distribution in this group of children. 

Her foundational description forms the basis of what is now known as PDA.

At the core, we find sensitivity and an intense aversion to everyday demands.

Coupled with significant anxiety, this can lead to externalizing, aggressive and demand-avoidant behaviors. And could cause much frustration and misunderstanding both at home and in school.

Unfortunately, research on PDA has not progressed much since Elisabeth Newson’s article in the 1980s. However, after many years of silence, the concept is now being discussed again.

Among others, Professor Christopher Gillberg and Eva Billstedt at the Gillberg Center in Gothenburg, Sweden – are researching PDA referring to the condition as EDA (Extreme Demand Avoidance).

Experience, evidence, or both?

The term PDA has gained significant traction among many parent groups. They feel that PDA is the first condition that accurately describes their child’s difficulties and challenges.

Many professionals have also realized how the PDA concept enables the discovery of concrete and constructive tools to assist these children and their families.

Parent groups have been instrumental in advancing knowledge.

And several online groups are providing experiential knowledge on how to interact with children and young people with PDA. 

In Sweden, for example, there is the PDA Sweden group on Facebook, which shares information and examples from everyday life. In the USA, At Peace Parents, run by a mother whose son has PDA, offers online workshops, links to books, articles and more.

As a clinically active psychologist, unfortunately, the scientific evidence is rather thin.

What has been striking in my encounters with the relatively few children and young people with PDA is their immense anxiety. And also often markedly outwardly aggressive behavior. Which is otherwise uncommon in a clinical setting. 

However, these children and young people feel pressured. Additionally, they experience intense anxiety even in highly controlled situations where adults try to facilitate and create the right conditions. 

Often, I am left feeling that my toolbox is empty and that there are aspects of these children that I still don’t fully understand.

PDA in the Therapy Room?

A book that has truly helped me in understanding children and young people with PDA is “PDA in the Therapy Room” by Australian psychologist Realene Dundon. 

This book clarifies the connection between PDA and trauma, further aiding my understanding of how PDA can be experienced. This does not imply that you develop PDA from traumatic events, but rather that living with PDA can lead to traumatic experiences. 

Being so sensitive and perceiving almost everything as a demand in daily life.

Things that others see as normal aspects of life, naturally make existence difficult. 

Consider how many challenges a typical day presents, where activities like showering, getting dressed or eating are seen as demands. Perhaps one has also experienced reprimands, shameful scolding and in the worst cases, physical interventions and restraints if one could not comply with adult demands. 

Therefore, it’s not hard to understand that many children and young people with PDA experience traumatic and humiliating events. The result is a nervous system constantly attuned to threats. Similar to anyone who has experienced trauma, constantly on “fight, flight or freeze” mode.

Strategies for Supporting Children with PDA

I highly recommend Dundon’s book; it has encouraged me to adopt a more trauma-informed perspective when working with children and young people with PDA. 

Thus, the natural starting point is to find strategies to calm and stabilize the nervous system. 

This may sound abstract, but it essentially involves providing:

• Safety, security and reliability in relationships.
• Openness to making one’s own choices.
• Focus and orientation towards collaboration.
• Empowerment and self-efficacy

It goes without saying, that all interactions with children and young people should be characterized by safety, security and reliability. 

However, this may need to be emphasized even more for children with PDA. Children that often have multiple experiences of adults trying to control, change and force them to do things they do not want to do.

In the worst case, encounters where the child feels confronted with impossible demands can erode safety and trust and worsen their PDA. 

Rethinking Therapy: Adapting to the Needs & Follow Their Lead

Here, both professionals and parents really need to reconsider and think differently. Many psychologists, therapists and coaches work based on models that involve giving children or adults homework to practice between sessions. It clearly works excellently in, for example, CBT. However, this way of working can be challenging for those with PDA. 

As facilitators, it’s more about being willing to “take a back seat” and follow the lead of the person one is working with. 

I distinctly remember an occasion with a teenage girl I was working with, where I felt satisfied because I thought I had such a good analysis and plan for her moving forward.

But in the meeting with the girl, I noticed how she stiffened and became quieter and quieter. She looked angry and extremely uncomfortable despite believing I was saying many good things about what she needed. 

After a while, I realized my mistake and asked what she wanted to talk about today. It was, of course, something completely different from what I had planned. When I followed her lead and tried to address what she wanted to talk about, the girl relaxed and we could make some progress. But as soon as I tried to lead the way forward, we hit a roadblock. 

As a psychologist, I must accept and adjust to this.

Towards more knowledge!

Children, young people and adults with PDA experience significant suffering in their daily lives. They often have a great need for understanding from their environment and professional help, but unfortunately often encounter ignorance and unwillingness. 

As long as knowledge remains limited and many professionals cannot meet their needs properly. I believe there is a real risk of increasing their suffering. And in the worst case, worsening their functioning. 

I truly look forward to continuing to learn about what PDA is and what is needed. And how I can adapt myself and my approach to be as beneficial as possible. 

We have just started the work of bridging the knowledge gaps!