Navigating PDA in America {Book Review}

A long time ago, nearly 15 years ago in fact, our younger daughter was diagnosed with autism. A few months later we stumbled across the words ‘Pathological Demand Avoidance’ in a parent carer forum and had what is commonly known as the ‘Lightbulb Moment’. Other parents were talking about their children who reacted in the same, often extreme, kind of way that our daughter did. 

That was in 2010. In 2011, one of the first books about PDA was published. It was titled Understanding Pathological Demand Avoidance Syndrome in Children and was written by Phil Christie, Margaret Duncan, Zara Healy and Ruth Fidler. When I first read that book, I wondered if the authors had somehow met our younger daughter without me knowing. It was as if they were writing about our lives! I had tears in my eyes. The relief of knowing that other people understood the challenges we faced, mixed with happiness at finding practical tips on how best to help our PDAer. 

Navigating PDA in America is an up-to-date source of all the information about PDA that is currently available. Ruth Fidler is an Education Consultant specialising in complex presentations of autism, Pathological Demand Avoidance (PDA), and emotional wellbeing, who worked at an all age non-maintained special school for autistic pupils for over 20 years. Now she has joined with Diane Gould, a clinical social worker based in Illinois and founder of the PDA North America group, to create this resource for people in America.

There is an introduction followed by chapters that cover Understanding PDA, Diagnosing a PDA profile, Supporting families at home, Approaches to facilitate learning, Promoting emotional wellbeing, Navigating school systems, Creating a framework for support and Concluding Comments.

The authors begin by setting out the fact that their experience comes from different countries but that they had the same motivation for writing the book; they both wanted to help ensure PDA children can be recognised and better understood, in order to have their needs met. 

Chapter 1, Understanding PDA, covers the history of PDA and touches on the language used, then sets out the PDA characteristics, explains what demands are and gives examples of different types of demands. The chapter finishes by noting the 'adverse response to conventional teaching and parenting approaches'.

The standard approaches tend to be not only less effective for children with PDA but can even cause greater distress and conflict. That’s because they don’t allow sufficient space for the choice, flexibility, and autonomy that PDA is need. Too many strict boundaries can trigger high anxiety, which can lead children with PDA to resist and avoid with greater determination. Punishments are often ineffective because they rely on a child understanding the results of their own actions and being capable of moderating their behaviours or controlling their impulses to change how they react.

The diagnosis chapter includes a great flowchart which, while not intended to be used as a diagnostic too, could definitely help both parents and physicians understand whether a PDA profile should be considered. The authors share information about diagnostic pathways in America and also offer suggestions for how parents can identify professionals who might be understanding and a good fit for the family. 

Chapter 3, Supporting Families at Home, is my favourite. It opens with 'Family life with a PDAer can be complex' then mentions how many parents of PDA children, teenagers and young adults describe their life at home as "walking on eggshells". Children with the PDA profile are described as been given more control in the home, but the reason for this is suggested as 'a response to living with a very anxious child, who finds social relationships tough to navigate, and who is easily dysregulated and often exceptionally emotionally sensitive.' This rings very true for my family. This is then followed with the following acknowledgement: 

...adopting a flexible parenting style that suits their child makes daily life easier, but most families have had to find out what works for them the hard way, by trial and error. What professionals need to appreciate is that parents, having lived with their child, are literally years ahead of them in this process, Which means they carry a huge wealth of knowledge that will benefit everyone if it’s shared.

This chapter goes on to offer solutions for a variety of tasks and situations, such as outings, holidays, appointments, and wider family and siblings relationships. The next chapter on facilitating learning (in all sorts of environments) is understandably comprehensive given the author's backgrounds and experience, and this is followed up with great information about how vital it is for PDAers to have the chance to focus on social and emotional learning, well-being, self-advocacy and independence as part of their learning.

More specific-to-America information follows in the chapter on school systems, although there is helpful advice in here that would also be relevant for those in the UK. The final chapter, Creating a Framework for Support, is one that raised my spirits as I read. I believe this could help every family, regardless of where you live, especially if your PDAer is approaching adulthood, as ours is! In an ideal world, this would be read by every 'Preparing for Adulthood' team and any professionals supporting children who have a PDA profile.

This book is full of practical advice on how to best help PDA children. Although initially written with the intention of helping individuals and families in America, this contains plenty of great information that would benefit families and professionals on either side of the Atlantic. Available from Amazon here: Navigating PDA in America.

Although Pathological Demand Avoidance [PDA] has been a recognised autistic profile in the UK for some time, awareness is still growing in America. Learning about PDA can feel like a lightbulb moment of understanding your child better. With traditional parenting and behavioural techniques often proving ineffective or making things worse.

The authors of this book explain PDA with an emphasis on promoting well-being, both for PDA individuals and all those who support them, with a neurodiversity–affirming framework across a wide range of settings. As awareness spreads, the compassion and clarity in this book will become a valuable guide to many.

Ruth Fidler is also co-author of the following PDA books (follow the links for my reviews):

Can I Tell You About Pathological Demand Avoidance

Collaborative Approaches to Learning for Pupils with PDA

Being Julia

I think this short review of Navigating PDA in America, left on Amazon, sums up PDA and this book brilliantly:

An important resource for a small subset of individuals on the autism spectrum who demonstrate more extreme cognitive inflexibility and emotional dysregulation interfering with their ability to comply with the simplest, most routine tasks and demands of daily life. If your child/student/patient with autism is not responding to typical parenting and behavior management approaches as recommended by most professionals, then consider the methods discussed in this book. -- Alan I. Rosenblatt, MD Specialist in Neurodevelopmental Pediatrics, Author of Autism Spectrum Disorder: What Every Parent Needs to Know, Northwestern University, Feinberg School of Medicine