PDA in the Family: Life After the Lightbulb Moment Book

Our book, PDA in the Family: Life After the Lightbulb Moment, is out now! We wanted to help other people understand more about Pathological Demand Avoidance and the book was one way of doing that. It's an account of how family life has been for us since the day we were told our younger daughter is autistic, and the subsequent lightbulb moment we had when we heard about PDA.

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We held an online Zoom Q&A session at the end of January to celebrate the book launch. I was honoured that Debbie Wood from ADD-vance, my local Autism and ADHD charity, offered to host this session, and that Julia Daunt, adult PDAer and author of Being Julia, joined me to answer some questions.

For those who like video (with or without sound, captions are available) I am sharing the recording of the launch. Watching on 1.5 speed playback is a neat trick that I've learned only recently but be warned, I tend to talk quite quickly so I might not make much sense if you choose to do that!

Book launch questions

I thought I'd take this opportunity to share my responses to questions I was asked during the launch event. Of course the book gives fuller replies to some of these! If you can think of any more questions that I haven't answered along the way, please do send me an email or message me via my social media pages.

Why did you start blogging?

I began typing my blog (14 years ago) as an online diary to log events, starting from the day Sasha was diagnosed with autism. I wanted to avoid repeating myself, and I wanted a way to remember what was happening. And a way to explain how Sasha was different from other children her age - because at the age of 2 or 3 people outside of the family probably thought she was 'just' having a lot of toddler tantrums. But we could already see that it was something else. Our eldest daughter hadn’t found things difficult in the same sort of way.

Did you ever imagine writing a book?

Apparently the statistics say that 60% of people in Britain want to write a book. 80% in America. But I wasn’t one of them! I never harboured any particular desire to write, either novel or non-fiction.

Actually it was the publisher who first approached me about a book, seven years ago. They were looking for more of a self-help or advice book for parents. I didn’t feel comfortable with writing that because I only really know my girls and our family's situation. Everyone’s circumstances are different, and I definitely don’t have a magic wand, so I didn’t feel like I could tell others what to do with their children. But after a while I went back to the publishers, saying I would be happy to put our experiences into print, because that was the only way I knew how to write. We compromised - they asked me to add some advice at the end of every chapter!

What is your PDA in the Family book about?

It is the story of our family life from that day of diagnosis up until a couple of years ago. The book says the girls are 17 and 15 but in fact they are 18 and 16 now. They were 16 and 14 when I was writing most of the book! The book covers everyday life, and challenges with education. More specifically though, it was intended to share more about the type of autism that Sasha has - Pathological Demand Avoidance (PDA).

What is PDA?

I will only cover this briefly here because I've written several posts covering this before (including What is PDA? Does my child have Pathological Demand Avoidance?). 

PDA is a type, or profile of autism. PDA individuals (also sometimes referred to as PDAers) have autistic characteristics but in addition have some other key features. According to the PDA Society (who are the best source of information about PDA, they have a brilliant website), the key features of a PDA profile are:

a. Resists and avoids the ordinary demands of life
b. Uses social strategies as part of the avoidance
c. Appears sociable on the surface, but lacking depth in understanding
d. Experiences excessive mood swings and impulsivity
e. ‘Obsessive’ behaviour, often focused on other people
f. Appears comfortable in role play and pretend, sometimes to an extreme extent (this feature is not always present)

What made you think it was PDA for Sasha?

After the autism diagnosis I was given a leaflet for a local support group called Spectrum Girls. I would meet regularly with other parents of autistic girls and I learned a lot from them. Every meeting though, I would come home thinking that my daughter sounded somewhat like their girls, but in many ways quite different. On top of that, the usual approaches suggested for autistic children back then didn’t seem to work for Sasha. She seemed to display much more extreme emotions than our older daughter and refused to engage in many activities, even those we knew she enjoyed. From a young age she avoided everyday demands and those that should have been fun, things she loved to do like going swimming - it could be so difficult to get her out of the door at home and we wouldn’t always know why.

During a late night googling session when I was trying to make sense of all this I first found the term PDD-NOS (Pervasive Development Disorder Not Otherwise Specified) that I thought maybe applied to our daughter, and then I stumbled across the words ‘Pathological Demand Avoidance’. That was our lightbulb moment; we realised that characteristics of PDA described our daughter more accurately than the more general autism diagnosis.

Sasha was sociable when younger and she used social strategies to avoid demands. Such as saying "my legs are tired", or trying to distract us by repeating back whatever we said to her or putting her hands over her ears and saying "la-la-la-la". She also had a great imagination, and she enjoyed role play. These were just some of the points that highlighted PDA for us.

What is the difference between PDA and general demand avoidance?

I think the difference lies in that word pathological (although I'm aware many people are not keen on this word because it is 'medicalised' and may have negative connotations). There are a few dictionary definitions of pathological; one that might help explain is “You describe a person or their behavior as pathological when they behave in an extreme and unacceptable way, and have very powerful feelings that they cannot control.”

Avoidance of demands runs through everyday life for PDAers, even activities that would usually be considered fun. Demands from others, those they try to put on themselves, and internal demands. I tried to expand more on this in my post Autism with demand avoidance or Pathological Demand Avoidance?

What are your hopes for the book? What was your aim?

My main motivation was that I wanted more people to hear about PDA. I thought a book was a more permanent entity than the blog and more accessible for some than the internet or social media pages. I hoped I could summarise our whole story in one place.

I also wanted to help other families feel not so alone when they were being judged for what their children can’t do. Parents who are told that they just need to enforce stricter boundaries or that they are lazy parents. We've been there, we feel the weight of the judgement, and it definitely doesn't help an already stressful situation. That said, I would also like education and healthcare staff to read our book, to try to understand what is going on for PDA children and that it is not about 'poor choices'.

How did you find the book writing process? 

Writing a book is very difficult to writing blog posts! I thought I would be able to convert a lot of my older blog posts into material for the book but that didn’t really work because they were written in a totally different style - still me, but more chatty and ‘of the moment’. And much smaller snippets in time, so difficult to extend out for the book. There's so much has happened in the last 14 years and there is a lot more I would have liked to include, but my memory is not as good as I wish it was. I hope I've captured enough to make sense though.

What do the girls think of the book?

Both girls have been very supportive of the book from the start. They were the same about the blog too - they have both read most of my posts on here. I checked with them what they were happy for me to write about in the book. And they understood the purpose of the book and why we were doing it, so they were comfortable with that. 

We discussed how they might be involved and if they wanted to add anything themselves. Sasha didn’t want to write anything, but it was her idea to do the interview style questions that appear at the end of the book, even though she doesn’t like questions (and said my questions were rubbish ones!).

Sasha thought about including some of her artwork but couldn’t decide what to include or whether to draw something new. In the end after discussing it we both agreed that often artists are sometimes not so keen on their earlier work, so it would probably be best we didn’t add any. The one thing that bothered Sasha a little after we received the printed books is the fact that the book is already 'dated' and much more has happened since I finished writing it. But it had to end somewhere!

I wrote in the introduction about how I wasn’t sure that Sasha would read the book because she tells us she hates books. But as soon as I had finished writing the whole book and sent it back to the publisher, I printed off a paper version that Sasha read in just two sittings, one evening, and the next morning. And then she read the whole book again since it arrived. She told me she liked it, but also made sure to let me know that her dad‘s chapter is the best because she likes his humour. I did point out that it would have been difficult for me to write the rest of the book in a witty style... that said, I do hope the book doesn't come across as too negative or sad because that definitely wasn't the intention at all. Our struggles have not come from our girls but rather from the systems and societal expectations.

Do you have any regrets about blogging or writing the book?

I have always thought of myself as a ‘glass half full’ sort of person. 'No regrets' is a motto I’ve tried to stand by. That is not to say there aren’t things in life I wish I had done differently, and I definitely don't think that I am a perfect parent. But I tend to have the viewpoint that you can’t go back and change things, you can only move forward from that point and change the way you approach future life based on the knowledge you then have. When I started blogging, I didn’t think things through or have any idea about where this all might end up. I am more of a ‘live in the moment’ kind of person! 

I am still glad I wrote the book because I still have hope that it will help others, which was the main aim. I wanted to share our story so that it would be out there for more people to be able to pick up and read. Not everyone uses the internet or would come across my little blog even if they do!

Thank you so much to everybody for the support of this blog and the social media pages. It has meant a lot to us over the years - realising we were helping other families by sharing kept us going. Thank you to all the people who have taken the time to support Sasha, and to understand what PDA means. From teachers and TAs at school, to her doctor and dentist, and gymnastics staff at after school clubs when she was younger, and all our friends and family - a few of these are mentioned in the book, but we have appreciated all of you who have helped along the way.

I think there are many people my age who don’t use social media because they only see the negatives of it, but having social media accounts (and working hard on them) is what led to me being asked to write a book. It definitely helps if people share anything I write about the book with others, because it then just might reach somebody who doesn’t know anything about PDA yet. If anybody has had time to read the book it would be hugely appreciated if you could write a review on Amazon or wherever it was bought it from. Thank you.

Turns out that bringing out a book can lead to a severe attack of writer's block. Our daughter turns 17 this year and as we fast approach that somewhat scary adult marker of eighteen my mind is like an image of whirling leaves. What can I do, where can I start, who do I turn to for help? All answers on a postcard please (does anyone else say that any more? I assume it might be only those of a similar age to me!). I'm hopeful that I'll return to the writing soon - there is still so much to be said about the education system and the lack of support for all children with SEND, but also still more to be learnt and shared about Pathological Demand Avoidance. I hope you will bear with me while my brain kicks back into gear!

PDA in the Family is available as paperback, ebook and audiobook via Amazon here: Buy PDA in the Family. *This is an affiliate link. As an Amazon Associate I earn from qualifying purchases, but it won't cost you any extra.

Also available via the Publishers' (JKP) website here: PDA in the Family

And at Waterstones here: PDA in the Family: Life After the Lightbulb Moment (Paperback)