Monday 15 January 2024

Understanding Pathological Demand Avoidance: Celebrating 14 years of PDA in the Family

In January 2010, 14 years ago, I sat down at my computer and the 'Steph's Two Girls blog' was born. I had just returned from an appointment with a paediatrician, and I had been told that our 2 year old daughter was most likely autistic. 

I had, of course, no clue as to what our life was going to be like from that point on - who does?! I didn't even have much of an idea about what blogging was - the only reason I even knew about blogs was because my younger brother wrote one at the time (his topics were football, music and politics, not at all related to mine!). 

background is faded image of an old style filament lightbulb. Text says Understanding Pathological Demand Avoidance celebrating 14 years of PDA in the Family

Why start a blog?

I wanted to capture what was happening for us in a way that helped. I somehow instinctively knew that I would end up repeating our story over and over, and as a busy mum of two girls (aged two and four years old at the time), I worried that I might forget some of the stories about our daily life and why it was now different to how I imagined most other families experienced life. My first post was titled 'Today - a diagnosis of autism?' and it was brief. I mentioned about the mix of emotions I had: relief, guilt, sadness, loneliness, and feeling like I was at the start of a long journey. 

Back then, the blog was a small space on the internet where I could share my thoughts and experiences as a parent. Little did I know that this platform would grow into a source of information and support for countless families around the world.

In those early days, I wrote about the joys and challenges of parenting, sharing anecdotes and connecting with readers on a personal level. As my daughters grew, so did the blog. It became a chronicle of our family's journey, capturing the highs and lows, the laughter and tears. I wanted people to read about what my autistic child was like, with the goal being that they would not judge her behaviour.

It was towards the end of that first year of blogging when I first read about something called PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) and not long after came the 'lightbulb moment', when I heard about Pathological Demand Avoidance (PDA). It was two years after our daughter's autism diagnosis when I began to blog about PDA, challenging people to read the first comprehensive book published on the subject, in the hope that they would understand more. 

What is PDA?

The PDA Society have an extremely comprehensive website that answers the question 'what is PDA?' so I always recommend that to others wanting to understand more.

In a nutshell, PDA is a profile or sub-type of autism. Key features of a PDAer are that they:
  • Resist and avoid the ordinary demands of life
  • Use social strategies as part of the avoidance
  • Appear sociable on the surface, but lack depth in understanding
  • Experience excessive mood swings and impulsivity
  • Have an intense focus, often on other people 
  • Might appear comfortable in role play and pretend, sometimes to an extreme extent 
purple graphic titled key features of PDA Resist and avoid the ordinary demands of life Use social strategies as part of the avoidance Appear sociable on the surface, but lack depth in understanding Experience excessive mood swings and impulsivity Have an intense focus, often on other people  Might appear comfortable in role play and pretend, sometimes to an extreme extent

Navigating parenting a PDA child - Lessons Learned

Reflecting on the past 14 years, I've taken on board some essential lessons from our family's journey and the book shares some more detail on these. Here are some top tips that might help others along the way:

Embrace Flexibility: 

Parenting a child with PDA requires a flexible mindset. Plans may need to change, and adapting to unexpected situations becomes a valuable skill.

Seek Support: 

Don't be afraid to reach out for support. Whether from friends, family, or online communities, sharing experiences can provide comfort and guidance.

Educate Others: 

Raise awareness about PDA in your community. The more people understand this condition, the more inclusive and supportive our society can become.

Celebrate Small Wins: 

Parenting is filled with both big and small victories. Celebrate every achievement, no matter how minor, and find joy in the progress, no matter how slow.

Prioritise Self-Care: 

It's easy for parents to neglect their well-being amidst the demands of caring for a child with PDA. Remember that taking care of yourself is crucial for your ability to care for others.

What have I learnt from blogging?

As far as blogging goes, I didn't think any of this through in advance. Story of my life, my husband would say; I jumped right in with two feet and worked it out as I went along. There were times when I wondered whether I had done the right thing, sharing our family's life publicly online, and I nearly packed it in and deleted it all on more than one occasion. Here are some thoughts on what I think I've done well or what I know could be done better:

Stay true to yourself

At one point I tried to backtrack and I gave the girls different names when I was writing about them on the  blog, but after a month or two of trying that I realised it felt like I was being fake. If I stop to consider why people have continued to read the blog, I guess it would have to be in part because of my honesty and vulnerability. What you see is what you get, which is a phrase I have often used when describing our younger daughter.

There will never be enough time

Over 14 years I have learnt a lot about what makes a good blog, but I rarely have the time to put it into practise. SEO, keyword searches, image optimisation, writing and posting regularly, creating short form videos and growing social media followers, and more - the list of what you can do to improve is endless. I decided long ago that my family were the priority; I recognised that I was spending a large amount of time in front of the computer (and still do!) but I knew that it would never be enough. So I have learnt to accept that I can't do it all, but I can try to do good with my time.

Social media is a valuable tool

Everybody's life changed when the worldwide internet was born and another big change came with the dawn of social media. There are pros and cons to being online of course, but my best advice is to take stock and use it wisely. We live in an age where we can discover so much more about those around us, worldwide, not just in our own villages. Being able to share our story has helped me connect with many other families and it meant that I felt less isolated. More importantly than that, it gave my daughter the chance to be understood for who she is rather than be judged for who she isn't.

Not all families are picture perfect

We might all have ideas in our heads about what we think our lives will be like, what we would like our lives to be like, and that might at times lead to us looking around and thinking others have it better, or easier. This is one of the downsides of social media, because we tend to only see the highlight reels. But I think it's worth keeping in mind that we never really know what struggles other families are going through, and we shouldn't compare ourselves to others. Live in your own moment.

Friends and Family

They matter. A lot. We are so lucky to have the best people in our lives and I wish I could share their support around with everyone else who is struggling.

Communication is key

One of my most used phrases, although I'm not actually sure it's phrased well, now I think about it! Communication is the key to understanding and success in life. I'm sure I don't always get it right but I'm often thinking about it and trying my best. Important to note that it's not always verbal communication that matters. I tend to think I'm much better at writing than I am at speaking, but I recognise that we just need to try to communicate any way we can and never give up.

PDA in the Family book

To be honest, it is as surprising to me as it is to anyone else that I'm still here, blogging after 14 years.  More than being 'just' a blogger though; it would appear I am now officially an author. 

orange book cover title pda in the family with a lightbulb graphic across the top
*This is an affiliate link. As an Amazon Associate I earn from qualifying purchases,
but it won't cost you any extra.

Our book, PDA in the Family, Life After the Lightbulb Moment, is due to be released this week. The timing is coincidental but it somehow fits perfectly. Our PDAer is 16 now and we have different challenges to face than those we had when she was a young child, but on the whole life is good.

My desire to understand and navigate PDA led me to research more, connect with experts, and seek out the experiences of other families facing similar challenges. The more I learned, the more I felt compelled to share this knowledge with the world. 

PDA in the Family delves into our personal journey, offering insights, approaches that have helped us, and a sense of camaraderie to those who may be feeling isolated on their own paths. Writing the book was both cathartic and challenging. It required revisiting some of our toughest moments as a family, but it also provided an opportunity to celebrate our victories and share the lessons we've learned along the way. It would be lovely to imagine it as a bridge connecting families, educators, and professionals, fostering a deeper understanding of PDA and offering practical guidance for navigating the unique challenges that come when parenting or caring for a PDA child.

One of the most rewarding aspects of writing this blog and sharing on social media has been the connections made with PDA families, fellow bloggers, and experts in the field. Many individuals from diverse backgrounds have joined me to share their stories, ask questions, and offer support.

The community that has grown around this blog is a testament to the power of shared experiences. It's a space where no one needs to feel alone in their journey, where the challenges of PDA are met with empathy and understanding. As we celebrate this 14th anniversary, I am grateful for each reader who has contributed to this community, making it a place where others can learn and draw support from.

I hope to continue sharing our experiences, insights, and the latest developments in the field of PDA. Here's to the next chapter of Steph's Two Girls and the countless stories yet to be shared!

If you would like to ensure that you hear from me (social media can be a bit 'unpredictable' when it comes to ensuring posts appear in the feeds of people who would like to know more!) then please do sign up for my email newsletter via Substack at If you go on to read our book (available by clicking on the image above), then reviews and sharing are what can help it reach others most. Thank you for being a part of this incredible journey. 

No comments:

Post a Comment

Comments are always very much appreciated and can really help the conversation go further...