Parental Perspectives of PDA {Book Review}

Parental perspectives of PDA is a new PDA book joining the others on my shelves and I couldn’t be happier to share this with you! 

This book was a collaborative project; written by Libby Hill, a consultant speech and language therapist, Natasha Hallam, a highly specialist speech and language therapist, and Alison Fisher, parent of two children with special educational needs and disabilities, including autism and PDA.

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The authors interviewed 220 parents of children and used the responses to write this book, bringing together real family experiences, professional reflections and practical advice. 

Parental perspectives of PDA looks at why children can appear so different depending on their surroundings, why being able to speak fluently doesn’t always mean communication is easy, and why inconsistent behaviour should be seen as a sign that something is going on, rather than as manipulation. It also explores important issues such as masking, school-related distress, safeguarding, allegations of fabricated or induced illness, and the lasting harm caused when parents are unfairly blamed.

The flow of the book and chapter line-up is as follows:

Introduction: Why Parent Perspectives Matter
1 Understanding PDA
2 What were the early signs – and how did you discover PDA?

3 How has the journey progressed?
4 What advice or training were you offered – and was it useful?
5 Barriers to receiving professional support
6 Explaining PDA to family and friends
7 Relationships with parents and other people
8 How PDA affects siblings
9 The Dynamics of home life
10 The Adjustments families make
11 Mornings
12 Coping with non-negotiables
13 Types of School and educational provision
14 What makes a good school - and what does support look like?
15 Holidays and Special Occasions
16 Strengths
Conclusion: Listening Changes Everything
Appendix A: Parent Toolkit
Appendix B: School Reflection Questionnaire
Appendix C: a concise PDA-informed School Guide

The introduction explains that this is 'a book about PDA viewed from inside family life', and that the authors have taken responses from parents and carers and reviewed those along with clinical reflection, while giving some practical guidance throughout. 

There are so many quotes from this book that I'd like to share with you, it's hard to pick only a few. But I'll start with this from chapter 1, where the current state of play in terms of a PDA diagnosis is briefly discussed along with answering what PDA is:

"What, then, are families describing? At the centre is not ordinary reluctance, wilfulness or a child simply preferring their own way. Parents describe a pervasive pattern in which demands, expectations and loss of autonomy can produce a powerful threat response. The demand may be external – 'put your shoes on' – but it may also arise from time, bodily needs, social expectations or the person’s own desire to do something. A child may desperately want to attend a party, see a friend or begin a favourite activity and still be unable to cross the threshold into doing it.

This apparent contradiction is one of the most important features for others to understand. Motivation does not guarantee access. Knowing how to do something does not mean being able to do it at that moment. The person‘s competence may be intact while access collapses under pressure. What adults see as refusal maybe the visible end of a much more complex interaction between threat, uncertainty, sensory load, communication, executive functioning, previous experiences and the need to retain control over one’s body and actions."

The authors then touch on a very important aspect of PDA, one which I tried to write about some time ago in my post Autism with demand avoidance or Pathological Demand Avoidance?

"Demand avoidance is not all the same. Everyone avoids demands sometimes. A child may avoid work because it is too difficult, boring, embarrassing or poorly explained. An autistic child may resist a transition because the sensory environment is overwhelming or because the change is unpredictable. A young person experiencing depression may lack the energy to begin. Someone who has been repeatedly coerced may protect themselves from further loss of control. Pain, sleep difficulties, language disorder, attention differences, trauma, obsessive–compulsive phenomena and many other factors can also contribute."

I very much related to one of the sections in chapter 3, headed 'when an autism diagnosis did not explain enough'. That's exactly the position we found ourselves in, nearly 17 years ago. 

"Some children had already been identified as autistic, yet families felt the assessment had not explained why conventional approaches repeatedly failed. This did not mean the autism diagnosis was wrong. It meant that the child’s particular pattern of demand–related threat, need for autonomy and variable access had not been understood.

Parents frequently described reward charts, rigid routines, 'first–then' language, consequences and repeated prompting becoming demands in their own right. A strategy presented as universally helpful for autistic children could make their child more anxious or oppositional. The problem was not that the family had failed to apply the strategy firmly enough; the strategy did not fit the formulation."

Topics discussed in chapter 4 include how low demand does not mean no support, the difference between lowering a demand and disguising it, and how parenting programmes can feel like blame. 

Chapter 8 looks at how PDA affects siblings, a topic that has always been at the forefront of my mind. There can be distress all round and it can be difficult to manage the feelings and the outcomes of meltdowns in a way that feels fair. The authors note how there's a need to respond differently to individual children, in order to accommodate differing needs, whether that's in terms of bedtime, chores or consequences. Some parent quotes here read:

'His siblings believe he gets special treatment because the same consequences do not work for him. We feel as though everyone is walking on eggshells.'

'Her brothers spent years wondering how she got away with so much. I worried that all they would remember was shouting and damage.'

'We plan carefully around her needs while trying to make sure our other daughter is treated fairly and has a genuine say.'

Chapter 10, which focuses on the adjustments that families make, really stood out for me. So much to relate to, so many parent quotes that I felt I could have written myself. I particularly appreciated how the authors framed these with 'adjustments are evidence, not indulgence'.

'We live differently from other families. We use lower-arousal, lower-demand approaches and focus on what is right for the individual rather than other people’s perceptions.'

'The changes improved home life enormously. The children became more confident as we stop treating every difficulty as disobedience.'

'Our life may look unusual but it works for us. There are losses, yet we focus on what remains possible rather than performing normality for other people.'

On the topic of employment and financial adjustments:

'One of us ended a career to be available during evenings and weekends; the other reduced hours to manage appointments and administration.'

'We arranged work in shifts so one parent was present before school and the other at the end of the day. Supportive employers made this possible.'

'Working from home helped, but I still had to leave calls whenever school refusal or a crisis occurred.'

And talking about how many families end up doing things separately:

'We let many things go and do more activities separately, including some holidays.'

'We rarely go out as a couple. Each parent takes turns staying home or visiting relatives.'

'It is difficult, but when we do manage time together, it is meaningful. We plan carefully and try to protect our relationship as well as the children.'

There are two good chapters about school and different educational provision, followed by the one on Holidays and Special Occasions. And I love the penultimate chapter that focuses on Strengths and the positives of PDA.

There's one final parent quote I’d like to highlight. From the very early days after our daughter's diagnosis, I was determined that I needed to do whatever it took to keep our household calm and functioning:

"The more confident I became in understanding PDA, the more balanced our home became."

I hope you can tell how much I loved this book - big thanks to Libby, Natasha and Alison. 

If you are a parent to a PDA child, there's a good chance you will relate to pretty much everything written in this book. There are so many quotes from parents living a life similar to how ours progressed when our PDA daughter was younger. When you're living a life that feels different to the majority of other parents at the school gate, I think it helps to read shared experiences because it helps to not feel so isolated. Whilst real, sometimes difficult situations and experiences are shared in the book, it still offers hope and remains an overall positive and supportive read.

If you're an educator, a health care professional, a social worker, therapist or in any other line of work where you work with children, this book could help you understand PDA better. And if professionals like Libby and Natasha can take the time to listen and remove barriers, as parents we can live in hope that more will follow suit.

This book is out now, available from Amazon (also worth noting that it is extremely good value, at a low price compared to some other books): Parental Perspectives of PDA

For more information on most of the published books about Pathological Demand Avoidance, please see my full review post: Books about PDA (Pathological Demand Avoidance)