Saturday 31 March 2018

Books to help with Pathological Demand Avoidance and Autism

Over the past eight years since our youngest daughter was diagnosed with autism, I have read a lot of books. Sadly not as many novels as I would have liked, but instead many information books around the topics of Autism and PDA (Pathological Demand Avoidance). PDA is a type of autism spectrum condition.

The following books are ones I recommend for anyone who wants to understand more about Pathological Demand Avoidance specifically.  Book cover Understanding Pathological Demand Avoidance Syndrome in children
First up is Understanding Pathological Demand Avoidance Syndrome in Children. This is a guide for parents, teachers and other professionals which was 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.

This book is what I refer to as my bible; the first time I read it, I nodded along to every page. I devoured it in one sitting; it was all so relevant and seemed to describe our girl to a T. 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!

My second book suggestion is 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.
Book can i tell you about 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 soon come when she'd 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.

Third recommendation is Pathological Demand Avoidance Syndrome My Daughter Is Not Naughty by Jane Sherwin.
book pathological demand avoidance my daughter is not naughty
Jane is mum to Mollie and Jake (aged 10 and 15 at the time of her writing this book) and started off by writing a blog about their family's experiences of living with PDA. Jane's book about those times was published in 2015 and 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.

Fourth book is one which really helped us, called Children with Pathological Demand Avoidance Syndrome (PDA) - a booklet for brothers and sisters. 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.
children with pathological demand avoidance syndrome (PDA)
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?

Finally, these two books I'm about to mention are not actually Pathological Demand Avoidance specific; they are aimed at parents and teachers of children with behaviour which challenges.
book the explosive child
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 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.

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.

His other book I recommend is called Lost At School; this is a similar book to The Explosive Child but targeted more at educators.
book lost at school

I hope this round-up has been helpful to those who would like to learn more about this particular type of autism. In a future post I will share more recommendations for information booklets and links to articles which we have found extremely helpful along the way.

*This post contains Amazon affiliate links, which generate a small commission for me.

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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