PDA???? What’s that?

In the decade that I was born, the 1980’s; a professor named Elizabeth Newson began using the term ‘Pathological Demand Avoidance’ to describe the presentations of children she assessed in her clinic at Nottingham University.

Newson et al. (2003) listed a defining criteria for the diagnosis of PDA but like so many people I have spoken to, I hadn’t heard of it until I stumbled across the term whilst frantically searching the internet for answers. Richard and I had always wondered and questioned how things were so different from the early days but all avenues of research led to dead ends.

I have a very vivid memory of a health visitor at Sophia’s 2 year old check saying ‘I see who rules the roost in your house!’ and things have definitely not changed since then. Our thoughts kept returning to autism but the information I found just didn’t seem to describe the characteristics we were seeing in our little girl. At the time we believed that she was able to make eye contact, communicate her needs with speech and was happy to make friends and socialise.

It was only when I began to discover that autistic girls can present very differently to boys and the concept of ‘masking’ arose that I felt we were getting closer. I jumped across websites, with a bubbling inside soaking up as much information as I could and then there it was …

It’s impossible to describe how I felt at that very point but I remember thinking like many, that what I was reading must have been written about our daughter. The National Autistic Society lists the distinctive features of a demand avoidant profile on their website – https://www.autism.org.uk/about/what-is/pda.aspx

• Does she resist and avoid the ordinary demands of life?
• Does she use social strategies as part of avoidance, for example, distracting, giving excuses?
• Does she appear sociable, but lacks some understanding?
• Does she experience excessive mood swings and impulsivity?
• Does she appear comfortable in role play and pretence?
• Does she display obsessive behaviour that is often focused on other people?

Well, the simple answer to all of these questions is yes! All behaviour is communication and we have spent so many years not being able to make sense of it all. PDA as a diagnosis is controversial as it currently does not appear in diagnostic manuals. However, the challenges we now know that Sophia faces each and every day with social communication and interaction and restrictive patterns of behaviour certainly warrants the PDA Society’s belief that ‘PDA individuals share characteristics with others on the spectrum and also have a distinct cluster of additional traits’.

So what is a demand? From the minute children wake up to the moment they fall asleep they are bombarded with demands made by other people but also by those they put upon themselves. Get up, get dressed, eat breakfast, wash, brush your teeth, comb your hair, go to school, write a story, multiply this, make a friend, walk the dog, read your book, go to sleep. For children with a PDA profile these demands are often completely overwhelming and levels of anxiety rise to an extremity.

This angst drives Sophia’s need to be in control. The greater the anxiety, the greater the need for control and avoidance of demands and expectations. She has tried her hardest from being tiny to express her distress and discomfort but we just didn’t know. We often, like many other families we have come to meet, describe our children’s personalities to be like ‘Jekyll and Hyde’ depending on the environment they are in. One moment they appear quiet, shy, timid and calm before transforming into a character filled with panic, rage and incitation.

We have a much clearer picture now of why she struggles being in the car, how she can mask her true difficulties; why she loves to role play being a Mummy or teacher and why sleep and school are two of her greatest challenges.