Book Review: The Family Experience of PDA

with Eliza Fricker, SEND parent and illustrator

Family experience of PDA

Eliza Fricker is an illustrator and designer, who is also the parent to her daughter who has a type of autism known as Pathological Demand Avoidance, or PDA as it is more commonly referred to. Eliza started documenting her experiences of the education system by illustrating comic strips on her website Missing the Mark. she wrote about this for us here.

Eliza is now about to release a book of these and tells us a bit more about it below. She has also kindly agreed to offer a free copy to one lucky SNJ reader. Please note this Giveaway is now closed.

How our PDA journey began by Eliza Fricker

My daughter is autistic. After a number of years struggling at school, she received her diagnosis and I believed she would get the support she needed. But years went by and things didn’t get easier for my daughter. She struggled to go to school every day, she was withdrawn or would remove herself from class.

I had already sat in quite a few meetings and been offered a variety of suggestions in the way of support and I could feel myself flagging at these suggestions because I knew they wouldn’t work. Not because I was particularly cynical, but because we had tried so many things and they had often been met by our child with a flat refusal. Meanwhile, our child seemed to be to engaging less and less with school and at home the meltdowns and need for control had increased.

As things became trickier at home, school and the various professionals involved seemed more perplexed at their suggestions not working. Why was our sociable, funny, creative child finding most aspects of everyday life so difficult? Mealtimes, bedtimes, brushing teeth, leaving the house and even activities they seemingly enjoyed could become arduous and leave our child having huge shutdowns as they had wanted to do something but at the same time, couldn’t.

It was at this time I went to the book launch of Girls and Autism where I heard a talk by Ruth Fidler on Pathological Demand Avoidance (PDA).   This was my ‘light bulb’ moment where I suddenly understood a lot more about our child's presentation.

What is PDA?

The 'lightbulb moment' is often how parents describe that moment as when they find out about Pathological Demand Avoidance. Because after years of questioning ourselves, our parenting and our children as to why they seemingly rebuke or rebuff any support we finally have some understanding of our children and we are not alone.

PDA is Pathological Demand Avoidance a presentation of Autism where extreme anxiety means a person or child will seemingly refuse to do even everyday demands such as teeth brushing or getting dressed- even activities they enjoy if they feel a demand is there. They will need to feel in control to feel safe and key relationships that are non hierarchical, collaboratively will be key. It requires primary caregivers to be flexible, calm and holistic in their approaches.  

As a parent, understanding that extreme anxiety was at the forefront for a child with demand avoidance, enabled me to be much more empathetic and holistic in my approaches. Often that’s what parents need to hear, that is okay to do things differently (and to throw the parenting book out the window), to relearn and adjust how we do things in order to make our children’s lives happier, more safe and secure, and in turn ours!

Often we too as parents are constrained by unwritten expectations and demands we put on ourselves too and these will not be helpful to a child with PDA. Our children will need kindness, humour, calmness, creativity and flexibility to thrive. They will need to feel autonomy and in control to feel safe. There are ways we can help them to feel safer, there are ways we can work for them to make them feel understood and calmer.

So while PDA is complex and a high level of need, with our understanding of what our children need we will in turn be able to better support them with the empathetic approaches.

Tolerance levels illustration

How did the book come about?

I had been writing and illustrating our experiences of navigating the education system for a short while when I was approached by Jessica Kingsley Publishers to write and illustrate a book about PDA.

I use comic strips throughout the book to give insight into how our children communicate and how we interact them, this medium is great for showing actual examples of how collaboration works. I have a comic strip in the book showing me attempting and failing to use the washing machine because in our house me appearing quite incompetent at doing an everyday task is a great way to engage my child and laughter helps them to feel at ease and potentially engage with doing a task that normally they could feel anxious or pressure to be able to do.

I was excited to be able to bring the medium of comic strips to this subject and felt it would work well to show examples of what can help when supporting a child with PDA. Comic strips also enable me to share the nuances of our lives. In one chapter, I have drawn about bulk-buying specific clothing that my child will wear (while a bemused shopkeeper looks on) and then cutting all the labels out. This is what we do. I want to show these little bits that work for us, that are our lives.

I hope my book is a positive and supportive addition for any parent who needs that reassurance that we will be doing things quite differently to best support our children and that it is okay because it's what our children need and we can have a bit of fun along the way doing this.

And while my book has its own title I also call it ‘my slightly funny, a bit flawed, quite tired guide to parenting a child with PDA’ because that’s all we can do, keep trying and keep learning!

 Eliza Fricker is an illustrator and a designer based in Brighton, UK. She has a child with PDA.

The Family Experience of PDA: An Illustrated Guide to Pathological Demand Avoidance Paperback Out 18 November 2021 by Eliza Fricker (author and illustrator) foreword by Ruth Fidler.

Buy it here on Amazon (using this link earns SNJ a small commission at no cost to you - a great way to support us)

This Giveaway is now closed!

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Renata Blower
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