Tuesday 14 May 2019

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

There are now several published books on Pathological Demand Avoidance, a profile of autism often referred to as PDA. Many of these have pride of place on my bedside table; they have helped us over the past twelve years since our younger daughter was diagnosed with autism.
Head and shoulders of me, smiling over the top of a pile of books
Before I tell you about all the currently published books though, I hope you don't mind if I quickly drop in the news that there's a new book ready to pre-order now... this is the one I have spent two years working on!
orange book cover with illustration of coloured lightbulbs. text says steph curtis pda in the family life after the lightbulb moment
Written by me, mostly, with a great chapter addition from Mr C, and thoughts from the girls are included too. The story of our experiences of having PDA in the family - covering everything from the early years and diagnosis, through school experiences and relationships with others. Out on January 18th and we hope you will like it.

Below are short reviews of some of the books already published. Tap on the photo or the title to buy any book via Amazon. These are affiliate links and I may receive a small commission if you visit a link and buy something. It won't cost you any extra.

Understanding Pathological Demand Avoidance Syndrome in Children

  
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 PDA children.

As the book title 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 PDA child, 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 PDA child.

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 wish they would! My full review of this book is here: Understanding Pathological Demand Avoidance Syndrome in Children {Book Review}

Can I Tell You About Pathological Demand Avoidance Syndrome?

 
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

The My Daughter Is Not Naughty book evolved from a blog about one family's experiences of living with PDA. Published in 2015, it includes a lot of in-depth detail about the challenges the family faced, from Early Years through to Adolescence, and it looks at the pre-conceived ideas of what parenting should be like and the 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 those with boys.


Collaborative approaches to learning for pupils with PDA

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. 

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.


PDA by PDAers

 
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.
 
The book was a 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 is 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

Written by Glòria Durà-Vilà and Tamar Levi, this book is unusual in that it is aimed at young PDA individuals rather than at those caring for them. 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 PDAers tend to find great comfort in control!

Being 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 PDA person and the amount of care and accommodations which are needed. A full review of this book is available in my post Being Julia {Book Review}.
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

 
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 would 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

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?

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.

There is now a fourth book in this series, called All The Pieces of Me. This continues the story of Tally; now she is thirteen years old and in Year 9 at secondary school. School anxiety and school avoidance is covered a lot in this book, along with more about PDA and relationships. Highly recommend this one too!

PDA in the Therapy Room


PDA in the Therapy Room was written by Raelene Dundon, an educational and developmental psychologist based in Australia. She has a range of experience of working with children with developmental disabilities as well as typically developing children. This book is a guide to effective strategies or ways of helping children with PDA, adapting conventional modes of therapy to suit their needs. Indirect techniques such as play based therapy or trauma-informed approaches enable the child to process their experiences on their own terms.

There are ten chapters, beginning with 'What is PDA?' and 'How might therapy assist individuals with PDA?', onto what to consider when working with children with PDA, how to support families and practical therapy activities. There's also a whole chapter on 'troubleshooting' and what to do when things are not going as you hoped.

The Teacher's Introduction to Pathological Demand Avoidance


The Teacher's Introduction to Pathological Demand Avoidance has been written by Clare Truman, a teacher in special needs schools and alternative provisions. Clare has specialised in autism for over ten years; she is big sister to an autistic young man and she is also studying for a PhD, with educational experiences of school-aged autistic children and young people with a PDA profile being the main focus.

Clare's experience of working with PDA students, both in a classroom and in a more flexible environment, is invaluable and the book shares much of her learning and ideas for strategies that could work in a classroom. 

The Educator's Experience of Pathological Demand Avoidance



Written by Laura Kerbey, a specialist teacher who is now an education and autism consultant, The Educator's Experience of Pathological Demand Avoidance is a clear and practical guide for any education professionals who are working with PDA learners. I highly recommend it for parents too. Illustrated throughout by very talented Eliza Fricker, author of The Family Experience of PDA and Can't Not Won't, this book is another that had me nodding vigorously in recognition of similar experiences.


These final two books I am 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

Written by an American man called Dr. Ross Greene, The Explosive Child is a book that 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 is a more compassionate, productive and effective approach, based around the 'Plan B' idea.


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.



I hope to update this post with news of any further PDA book releases and I would welcome any new 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 or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

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

2 comments:

  1. Thank you for your You Tube presentation. It was very helpful. You mentioned your website where I found the books I requested. ~ San Diego, California

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    1. Ah, I'm glad you found it! Thanks for commenting.

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