Tuesday, 14 May 2019

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

*This post contains affiliate links and I may receive a small commission if you visit a link and buy something. It won't cost you any extra*

There are now several published books which cover the Pathological Demand Avoidance profile of autism (PDA) and many of these have pride of place on my bedside table. 
photo of me with a big pile of PDA books
I take them along to any information or support group meetings because I hope they might help another family in the ways they have helped ours.

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, Understanding Pathological Demand Avoidance Syndrome in Children 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.

Can I Tell You About Pathological Demand Avoidance? is 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), My Daughter Is Not Naughty 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, and looks at the pre-conceived ideas and use of language such as naughty. 

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 equally 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, Collaborative Approaches to Learning for Pupils with PDA is a great follow up to Understanding Pathological Demand Avoidance Syndrome in Children. Ruth 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 well-being'. 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. PDA by PDAers 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 Me and My PDA and thankfully not at all disappointed when it did land on my doorstep. 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, The PDA Paradox 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. I've written a more detailed review of this book over in my post The PDA Paradox.

Being Julia

Blue front cover of Being Julia book with title text and text saying a personal account of living with pda. also has colourful line drawing of Julia
Julia Daunt is an adult diagnosed with Pathological Demand Avoidance and her memoir covers life from a very young age right up until recent times. The book, Being Julia, includes many examples of school and social experiences, with some earlier memories being provided by Julia's mum and old school reports.

Chapters cover a variety of issues such as growing up, avoidance, language and communication, friendships and relationships as well as meltdowns. Throughout the book there are many helpful examples of how Julia has experienced daily life and events and an in-depth look at different types of demands and Julia's responses to them. 

There is also a whole chapter written by her partner Paul that gives a unique insight into living with a person with PDA and the amount of care and accommodations which are needed. There's a full review of this book in my post Being Julia {Book Review}. 

The Family Experience of PDA

Green book cover with three mini illustrations of mum with child, title text The family experience of PDA
Eliza Fricker has written this brilliant guide for parents and carers of children who are demand avoidant. There are eleven main chapters (plus an introduction and conclusion) covering areas such as sensory needs, anxiety, relationships, meltdowns, collaboration, fun and flexibility. Every single chapter includes examples of different approaches to use in order to help and support children who may have features of PDA. 

The Family Experience of PDA is the perfect mixture of illustrations and text. The illustrations accurately depict, at a quick glance, situations which are happening in many PDA households across the country. The text that goes alongside them describes in accessible and non-flowery language what is happening and why, and how we might best react to or manage these occasions. My full review of this book is here: The Family Experience of PDA {Book Review}

Saturdays At Noon

Saturdays At Noon book cover
An unusual entry next but one which I feel is definitely worth adding to the list. Saturdays At Noon is the debut novel from Rachel Marks, who is both a primary school teacher and mum to a son with Pathological Demand Avoidance.

I've written a more detailed review over in my post Saturdays At Noon (Book Review) but in summary I'd say that much of the story is relatable. Situations such as the struggles of having to wait for presents on Christmas Day, the pain of playing board games or needing to find batteries at an ungodly hour in the middle of the night will strike a cord with many, I'm sure. Details such as the way in which the child in the story knew every detail of his new Lego set, down to the individual colours of certain pieces, and the way in which the parent despairs that Alfie refuses to leave the house, even when he likes the proposed destination, and how it makes him feel like becoming a recluse or leaving the house forever without him really stood out to me.

Pathological Demand Avoidance Explained

Purple book cover showing a selection of illustrations from the book, and words What is it like to be PDA?
This book, Sally Cat's Pathological Demand Avoidance Explained, is a collection of illustrations and memes about PDA which have been created by an adult PDAer called Sally Cat. The images and words describe all the emotions and challenges of PDA brilliantly; many people say how much they have helped. Available as a paperback or in Kindle format. All royalties are donated to support the PDA Society so this book also helps others.

Ways To Be Me, Can You See Me? and Do You Know Me?

Orange front cover of Ways To Be Me with title text and blue front cover of can you see me with title text
This trilogy of novels are written by Libby Scott & Rebecca Westcott. Libby is a young autistic girl and these books cover many of her own experiences of school and family life, using her own diary entries. 

The books follow a young girl called Tally through her final year of primary school (aged 10/11), when she receives an autism diagnosis, and on through her start at secondary school. Ways To Be Me is chronologically the first in the series, although Can You See Me? was published first, followed by Do You Know Me? 

The books delve into friend and family relationships, along with many examples of difficult everyday situations in school environments. This quote below is one of my favourites from Ways to Be Me:

Sometimes, people ask her to do things that she just can't do, even though they aren't things that other people think are particularly tricky. She knows exactly what can't feels like - it's like having your tummy filled up with wriggling, squirming snakes while your head explodes with tiny fireworks. Can't is the scariest feeling in the whole world, especially when everyone else thinks that it's really won't.
These books are so insightful and also cover aspects of masking in a helpful way. 
orange blue and purple book covers with the titles on in text

These final two books I'm recommending 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 detail 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.

Links for US versions: The Explosive Child and Lost At School

I hope to update this post with news of any further PDA book releases and I'd welcome any recommendations - just drop me an email at stephstwogirls@gmail.com if you know of any!

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?

To follow me on other social media channels, you can find me at the following links or click the icons below!

Email Me Subscribe Bloglovin Twitter Facebook Pinterest Instagram YouTube

No comments:

Post a Comment

Comments are always very much appreciated and can really help the conversation go further...