PDA by PDAers - A Book Review

Last month I was given the very exciting opportunity to review a book I was keen to read.

There has been a bit of a buzz already about the title PDA by PDAers which has been cleverly compiled by Sally Cat.

The book has been published by JKP (see here for a full itemised list of the books they hold about Autism and related conditions) – this is definitely a ‘go-to’ collection of resources for parents, teachers and academics alike.

This particular resource has been collected from a series of Facebook discussions, using fellow adults and parents, to share their combined knowledge on the different facets and traits that are particular to the PDA profile.

It has a collaborative feel to the book, as Sally Cat puts it in her objective, she wants everyone to chip in freely, coming in and out of the conversation with no demands, to get a very free-style thinking to the content.

There is no over-ruling leader but an equal voice to be heard from the entire group of participants.

Sally Cat gently guides the topics into relevant chapters, which cover impulsivity, parenting, school, masking, anxiety and meltdowns, as well as coping strategies to name just a few – there are plenty more to read through.

This format may also contradict the assumption that a person with PDA is unable to consider another person’s point of view and demonstrates that when treated equally and with respect that a ’round table’ style of working can be possible.

As with many things, compassion and understanding in the right environment, can lead to some very interesting and powerful ideas. The sense of warmth and virtual friendship just resonates on every page and is beautiful to read.

It is also useful to learn from the words of adults and parents; their opinions and experiences contribute to the field of research just as much as we learn from the development of professionals and academics.

After all, how can we understand what it is like to live with Pathological Demand Avoidance if we have never experienced it for ourselves?

The adult perspective is useful and differs between each and every individual, as Sally Cat puts it well:

“To think of PDA as merely involving Demand Avoidance is to me akin to thinking of tigers as merely having stripes.”

It’s interesting to learn that even meltdowns can range in experience and proves that there are different ways a person with PDA may overload, the same goes with being able to ‘mask’ the condition, which is something that really needs more awareness.

The belief that all PDAers have violent and challenging behaviour is proven to be a misconception as some of the individuals discover, through discussion, their own versions of an overload really do differ as you will find out when reading.

The same goes with anxiety: the book looks at ‘anxiety blindness,’ and interestingly, how would you know if your levels were heightened if this was all you’d ever known?

As Julia Daunt, a writer and strong advocate, says eloquently in the book “Anxiety is my normal.”

The book is cleverly interspersed with Sally Cat’s memes, which are perceptively created to capture and depict the essence of the narrative, such as this one on ‘masking:’

There are certainly some common feelings and experiences agreed through the book – backed with correlation graphs such as these ones which look at Anxiety and PDA:

All of the chapters (bar one) end with an insightful post from Riko Ryuki who is also a successful PDA blogger. Riko raises some very interesting points such as this one:

“Control isn’t about power over others but about feeling safe.”

When we change our focus lens, we can look at the need to control in a different and far less negative way.

Riko also discusses PDA emotions and likens them to an ‘all or nothing’ kind of event – such a great description that I’m sure many will relate to when living with demand avoidance.

I also love this quote from Little Black Duck:

“I’m the heroine in my own life story. I’ve stood up when it mattered. I’ve made a difference in the lives of others. And I’m still here, for the next chapter.”

What is there better to feel proud of than surviving in what must be a very uncertain and unforgiving world?

As a parent I learnt new things about my daughter that were definitely PDA related and traits that I had certainly overlooked.

It certainly helped me gain a better insight into the demand avoidance and the feelings she may experience coping with certain challenges.

It also helps me be more compassionate and to be a better person, as Pink puts it:

“People come into my life for a reason, and they learn to see the world differently because of it.”

This book should be read by Teachers, Social Workers, Psychotherapists, SENCO’s, Educational Psychologists and general GP’s. Actually, anyone coming into contact with families would benefit from perusing these pages.

I hope it can educate us to be more tolerant as a society and to equip us with the tools to embrace neurodiversity.

It would also help so many individuals across the spectrum, regardless of which profile they may find to be a better fit.

The descriptions of being judged, misunderstood and incorrectly supported will be something that will relate to many, together with the experience added by having a hard-wiring that is alternative to most, but yet something that may be celebrated just as much.

The achievements are amazing and I would encourage you to read to the final chapter to discover some of the fascinating successes that are collectively reached.

These adults are articulate, imaginative and highly intelligent and given the ideal environment such as this one they can all show their individual greatness.

I was moved to tears throughout this book.

It resonated so deeply and as a parent I felt proud to think about my daughter having PDA.

She is not just a tiger with stripes but a multi-talented person with her own unique view of the world – one that she should be allowed to express with the integrity and passion she independently has.

I’ll leave you with one last quote that I think sums up living with Demand Avoidance: