Our Pathological Demand Avoidance (PDA) Journey in Surrey
Here in Surrey, our family faced a bit of a conundrum. You see, our son was diagnosed with ASD in May 2017. At the time, that diagnosis brought a sense of relief, but it didn’t quite fit all the puzzle pieces. That’s where PDA comes into play.
Unpacking Pathological Demand Avoidance
PDA is a behaviour profile within the Autism Spectrum. Those with PDA share the usual challenges of ASD but come with a significant twist. They are driven by an intense, anxiety-fueled need for control, which is what makes it “pathological.” You can find more detailed info on this over at the National Autistic Society’s website.
Observations and Challenges
So, what did we observe in our journey? Things went awry when our son transitioned to Senior School. They tried the standard ASD strategies, but it was like fitting a square peg in a round hole. Meltdowns, school escapes, shouting, screaming, and tears became the norm.
Discovering PDA – A Turning Point
I don’t even recall where I first heard the term Pathological Demand Avoidance, but the source isn’t vital. The more I read and researched, the more it all clicked. The light bulb went off, and we understood why the usual strategies weren’t working for PDA.
A Unique Approach to PDA
PDA needs a different approach from ASD. While the ASD side craves structure and routine, the PDA side hates it! They told us our son had too much control, and in most cases, that might be true. But with PDA, it’s different. You can’t just snatch away the reins of control. The anxiety they face is so intense that control is their lifeline. Removing it only amplifies the anxiety to unbearable levels.
A New Perspective on PDA
After many chats with his psychologist, we got a diagnosis of ASD with Demand Avoidance Traits. It’s amazing how a change in wording can change everything. It’s now part of his EHCP, which brings its own set of challenges, but that’s a story for another day.
Learning About PDA – A Glimpse into Our Experience
Living with PDA is a journey of constant discovery. I thought I knew a fair bit about it, but attending a PDA-specific course opened my eyes. I had so many “Aha!” moments that I lost count (I’ve never been good with math). It was an intense day of learning. It showed me how much I didn’t know and how much I actually did!
The Challenge of Small Things
The small things hit home the hardest. Who would’ve thought that asking a simple question and waiting for a response is seen as a demand? Arguments over TV choices suddenly make sense when someone else mentions a film, and it becomes off-limits because someone else decided. It’s a bit crazy, but that’s our new normal.
Valuable Resources for PDA
I follow Sally Cat’s PDA page on Facebook, and it’s a valuable resource because it comes from the perspective of an adult with PDA. Experience beats information any day. She’s put together a fantastic video called “Sally Cat’s Guide to PDA,” which gives you a glimpse into living with Pathological Demand Avoidance.
Effective Strategies for PDA
Now, let’s talk strategies. We had to eliminate all the demands, but we had four non-negotiable house rules for everyone. Everything else is up for negotiation. This way, when we do have to make a demand, it’s more likely to be tolerated.
Progress and Adaptation
There’s so much more to share, but for now, I hope this gives you an insight into our world. It’s far from perfect, and we adapt daily, but we’re making progress, one small step at a time. And you know what? That’s perfectly fine.
Until next time, stay positive.
If you would like to read more about how we learned to manage our lives with PDA, please check out this post.