The PDA Effect - insights from an autistic teenager {Book Review}

The PDA Effect is a newly published book that I've just added to my growing pile of books about Pathological Demand Avoidance. Written by autistic 18-year old Ethan Knight, The PDA Effect is billed as 'an autistic teenager's guide to understanding demand avoidance' and this book is full of his insights about living with PDA. 

(*Some of the underlined text and the pictures in this post are affiliate links; as an Amazon Associate I earn from qualifying purchases but it won't cost you any extra)

Ethan begins by explaining what PDA feels like to him:

PDA affects how I see the world. What I want people to understand is that it isn’t that I avoid things because I don’t want to do them; I don’t think about what I do and don’t want to do when I refuse to do something. The best way I can think of to describe it is that, to me, avoiding demands is just like breathing.

It’s an automatic response that kicks in as a self-protection mechanism; therefore, avoiding decisions feels instinctive rather than being a conscious decision. It’s not about being allowed to be difficult or disrespectful; it’s about how my brain is wired to respond to different situations.

There are seven sections after the introduction, and they cover the following topics: Understanding PDA, How PDA Affects My Learning, Strategies for Support, Friendships and Social life, Sensitivities, Masking, Burnout and Seeking Support, and How Parents Can Help. Paragraphs are short and well-spaced, which means this book is easy to read - to be honest, I couldn't put it down once I started!

Each section contains several examples of how PDA effects Ethan in his daily living, and I nodded along to all of them as they seemed a good reflection of how we see that our PDA daughter has experienced life. Ethan has also included many suggestions of ways to make things easier and 'what helps me' or how to help. Every section has a lined page at the end, with the prompt 'what helps you?' so this book can be used for making notes too.

There were so many great insightful quotes that jumped out at me from the book so I wanted to share a few more.

On the struggle of PDA, Ethan writes:

If I could control the PDA, I’d tell it that I’m going to have a lot of fun, or that it’s going to make someone really happy or that I might benefit in some way if I do the thing that’s been expected or demanded of me, but I can’t. It just doesn’t work like that. That’s the worst thing about PDA. The more I push myself to go against my instincts, the heavier the request feels, the worse I feel, the worse I react, and the longer it takes me to calm down again. And all the time, the thought of failing or letting someone down adds to that pressure, which makes me feel bad, frustrated and angry until I want to avoid it completely, so I don’t have to put myself through that. 

Some thoughts on sensory difficulties:

My sensory difficulties cause problems, too, because it can mean that on freezing days, I might not want to wear a coat; as a child, this would make my mother crazy, and she used to stress out about it a lot. She eventually realised that bringing my coat and not trying to persuade me worked better because I was happy to put it on once I was cold. From the outside, refusing to put a coat on can look like a problem with a lack of discipline, but it’s not. Winter coats and jackets can feel really heavy and restrict my arm movement in a way that makes me feel uncomfortable and panicked. Going into a warm place from outside can make my body suddenly heat up like a furnace, and I feel as though I’m being buried alive in hot sand, so if I don’t take it off quickly, I panic and meltdown.

Food affects me in different ways. It’s not always the taste of the food but the way it feels in my mouth and that can be a problem. Some foods have textures that I can’t handle, like anything that feels gritty or sticky in my mouth. Even foods are usually like can feel “wrong” on certain days or if they’ve been put with another ingredient. It’s hard to explain, but I can’t make myself eat something that doesn’t look or feel right. It’s like my brain rejects it before I can even swallow, and when I feel there’s no choice other than to eat it, then my PDA kicks in.

What struck me as I read this book, was how eloquently Ethan has been able to put his thoughts and feelings into words. I imagine that our soon-to-be 18 year old daughter would relate to pretty much every single word in here. Sadly she has never been a fan of books - actually that's an understatement, I'd say she actively resists or avoids them! I was amazed when she read the one I wrote (read more about that in my post PDA in the Family: Life After the Lightbulb Moment Book). I wish she would pick this one up if I left it 'casually' lying around, because it might just help her to not feel so alone about the way she thinks and acts.

The PDA Effect is available now via Amazon: The PDA Effect

I highly recommend this book and think it would be great for anyone trying to understand themselves or the PDA profile - the writing is clear and not too wordy, meaning it could be good for younger tweens and teens, and for siblings of PDAers. It would also be great for explaining PDA to extended family and friends, and maybe even busy educators and health professionals could find time to squeeze it into their day. 

Ethan also has a Facebook page called Ethan Knight: The PDA Effect, and his older brother Callum has also previously published a book, called The Secrets of My Spectrum.

Final words go to Ethan:

I don’t expect people to understand what it’s like to live with PDA, but I do hope people will take some time to understand and try to see things from my perspective.

I’m not lazy, rude, or grateful – I process the world in a way that makes everything far less accessible to me. When people are patient, flexible, and try to understand, it makes a massive difference in helping me navigate daily life, which will be a huge part of whether I succeed or fail.