Tuesday, 14 May 2019

Books about the Pathological Demand Avoidance (PDA) profile of autism

Previously on this blog I've reviewed and written about several books which cover the Pathological Demand Avoidance profile of autism (PDA). As a little update for this year's PDA day (a day on which we will be trying to shine a spotlight on all things PDA), I decided it would be good to bring all the PDA literature which I've seen so far into one main post.

Understanding Pathological Demand Avoidance Syndrome in Children

understanding pathological demand avoidance book cover
This is a guide for parents, teachers and other professionals, first published in 2012. It draws on not only the research and papers of Professor Elizabeth Newson, who was the first to describe certain characteristics as the PDA syndrome, but also includes experiences of educational practitioners and accounts from parents and carers of children with PDA.

As the name suggests, this book is a comprehensive introduction to PDA. Written by Phil Christie, a Consultant Child Psychologist who was Director of Children's Services and Principal of Sutherland House School for 30 years, Margaret Duncan who is a GP and parent to a child with PDA, Ruth Fidler who is now an education consultant and was previously Assistant Head Teacher at Sutherland House School, and Zara Healy who is parent to a child with PDA.

There are six main chapters, each containing a considerable amount of information; What is PDA?, Positive Everyday Strategies, Living with PDA, Providing the best education for a child with PDA, Developing emotional well-being and self-awareness in children with PDA and Summing up and questions for the future. Within section 3 there is a helpful section on siblings which was of particular interest for us.

I refer to this book as my bible; the first time I read it, I nodded along to every page; it was all so relevant and seemed to describe our girl exactly. It was so good that I wanted to buy a copy for everybody who would have contact with her; sadly I realised not everyone shared my passion for reading in this way... but I can still wish they would!

Can I Tell You About Pathological Demand Avoidance Syndrome?

can i tell you about pda book cover
A guide for friends, family and professionals, this is written from the viewpoint of Issy, a fictional 11 year old girl with Pathological Demand Avoidance.

It's aimed at readers aged 7 and upwards and would be a great starting point for discussions with siblings and peers. Our girl is not a fan of reading but I'm hoping a time will come when she will pick this up out of curiosity and relate to it. It's short enough so as to not be overwhelming (31 pages of slightly larger type) and also has a strategies section in the back.

Pathological Demand Avoidance Syndrome: My Daughter Is Not Naughty

pathological demand avoidance syndrome my daughter is not naughty book cover
Written by Jane Sherwin, mum to Mollie and Jake (aged 10 and 15 at the time of her writing this book) this book evolved from a blog about their family's experiences of living with PDA. Published in 2015, it includes a lot of in-depth detail about the challenges they faced, from the Early Years through to Adolescence. 

I was particularly drawn to this book because it covered the development of an autistic girl with PDA, but there is so much information in it that I would definitely say it is relevant for boys too.


Children with Pathological Demand Avoidance Syndrome (PDA) - a booklet for brothers and sisters 

Children with Pathological Demand Avoidance Syndrome (PDA) - a booklet for brothers and sisters book cover
This helped us explain PDA to our younger daughter's sibling when she was about six or seven years old. The language in it is fairly simple and the book shares lots of feedback from other siblings who had the chance to attend courses in Nottingham. Our oldest girl told us it helped her to understand and to not feel so alone.

I've been told that there are still a small number of these books available from Autism East Midlands if you email them for more information, but that enquiries are currently being made about a reprint. I suspect this may depend on more funds being pinpointed - could be a nice project for someone? 

Collaborative approaches to learning for pupils with PDA

Collaborative approaches to learning for pupils with PDA book cover
Written by Ruth Fidler and Phil Christie, this book is a follow up to Understanding Pathological Demand Avoidance Syndrome in ChildrenRuth is an education consultant who was on the senior leadership team of an all-age, non-maintained special school for 94 autistic children for 22 years. Phil is a consultant child psychologist who worked closely with Elizabeth Newson to set up the Elizabeth Newson Centre (Elizabeth Newson was the autism expert who first recognised a group of children as being similar to other autistic children but having some common differences). I've heard both Ruth and Phil speak at the PDA Society conferences previously and their experience and understanding of this complex area is immense.

The subtitle of this book is 'Strategies for Education Professionals', which means it has been written for those working with children with Pathological Demand Avoidance rather than for parents. That said, as a parent I still found it helpful; the book is littered with many examples of strategies which could also translate well to being used in the home. 

One chapter which jumped out at me was 'Encouraging social understanding and promoting emotional wellbeing'. This covers various aspects common in PDA children such as them being perfectionists, which can often lead to low self-esteem and negative cyclical thoughts, as well as the whole way in which they can become fixated (in a good or bad way) with certain adults or children. Strategies are discussed and some visual options in the form of mind mapping and flow charts are given.

As happened to me with Ruth and Phil's first book, tears sprang to my eyes as I began to read this book. Honestly, it's like they've been in my house and understood our girl. I think it's a relief in a way; it brings home to me just how complex the situation is here on a daily basis and with that comes some acknowledgement that I am doing my best to hold things together all the time. Not just at times of meltdowns, but all the times before and after when I'm constantly planning to avoid those meltdowns and that distress. It is exhausting, there's no point lying about it. This book, whilst not aimed at parents like me, is a support because it's almost proof of the kinds of strategies which need to go into every day - not because that's how we want to live, but because that is what works to enable our children with PDA to have the best life they can have.


PDA by PDAers

PDA by PDAers book cover
Compiled by an autistic adult (Sally Cat) who runs her own website and Facebook page, this book brings together many thoughts and viewpoints from a range of autistic adults who identify with the term Pathological Demand Avoidance. This book is real lived experience from adult PDAers and I believe every parent should want to read this for a few different reasons. 

Ever since the first few weeks after diagnosis, I've always wondered about the future and what others' experiences were. As parents we are often told to not look too far ahead, and that nobody knows what the future will hold, and of course that's true. It helps though, to increase understanding of thoughts that may be going on, especially when you have a child who might not be quite so articulate due to their age and little experience of the adult world. It also helps to have hope in a future that is not all doom and gloom - there are successful adults out there with PDA, for sure.

Even the way the book has been compiled is fascinating - a real collaborative process, started with a series of questions in a Facebook group for adult PDAers. The responses are all republished as they were given, so it's almost like reading a huge conversation. The book is broken down into 20 chapters, covering issues from school and work to masking, roleplay, meltdowns, parenting, people and more. The book is interspersed with great graphic memes from Sally Cat herself, and includes writing from Riko Ryuki, an adult PDAer with three children also on the Spectrum. Her blog is called Dragonriko and Facebook page Riko's PDA Page.


Me and My PDA

Me and My PDA book cover
Written by Glòria Durà-Vilà and Tamar Levi, this book is unusual in that it is aimed at young people with PDA rather than those caring for them.

I was very excited about the arrival of this book and thankfully not at all disappointed when it arrived. It begins with a letter directly to the child/young adult, explaining that the book is for them and that they are in control of what they would like to do with it, and when they would like to read it. It explains that they know themselves better than anyone and so should decide for themselves how they'd like to use it. This is definitely playing into their hands, given that those with PDA tend to find great comfort in control!

The book is varied; at points it offers suggestions of what the writers have heard from other young people with PDA and it asks the reader if they feel that applies to them. It explores topics such as feelings, friendships and school, giving examples of how other children have felt in different situations. It then offers some strategies which may have helped those children - all presented in a way which might just plant a thought in a child's mind, or enable them to not feel so alone.

Losing control and the danger zone are terms used rather than meltdown and at the back of the book is a whole section leading the individual to write a summary of themselves (if they want to), the things they struggle with and useful strategies so that this can be shared with adults around them.


The PDA Paradox: Highs and Lows of Pathological Demand Avoidance

The PDA Paradox: Highs and Lows of Pathological Demand Avoidance book cover
Written by Harry Thompson, a young adult diagnosed with Pathological Demand Avoidance in his teenage years, this is a book which I totally recommend for any parent of a child with PDA, and any others trying to understand this profile of autism. 

It is a fascinating run through of Harry's life, covering (as he puts it himself) 'the highs and lows' of his life 'on a little-known part of the autism spectrum'. He writes about early years and school years, and on through work experiences, with many explanations of thoughts and feelings from a PDA perspective backing up all his actions over the years.


Finally, these two books I'm about to mention are not specifically about Pathological Demand Avoidance; they are aimed at parents and teachers of children with behaviour which challenges

The Explosive Child and Lost At School

the explosive child book cover
Written by an American man called Dr. Ross Greene, The Explosive Child is a book which just makes a lot of sense to those of us who are parenting children who don't seem to conform to the typical parenting strategies. Dr.Greene is a clinical psychiatrist who has spent many years working with children and adolescents, and his book covers his approach called Collaborative and Proactive Solutions. You can read more at that link but in a nutshell it's a more compassionate, productive and effective approach, based around the 'Plan B' idea.
lost at school book cover
Dr.Greene is a man who I admire greatly despite never having met him; I would love to meet him one day and shake his hand! He provides so much help and advice free of charge on his website Lives In The Balance; I recommend that parents start with the Walking Tour for parents and practitioners select the Walking Tour for Educators. The other book mentioned is called Lost At School; this is a similar book to The Explosive Child but targeted more at educators.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?




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