PDA Awareness Day

Dear Readers,

On Thursday, people around the country marked PDA Day, a day for raising awareness, increasing acceptance and sharing findings of recent research into the condition. As much as my parents might want it to, PDA does not stand for Public Display of Affection (so unfortunately, they won’t be getting that any time soon)! It actually stands for Pathological Demand Avoidance and it is usually seen as part of the autism spectrum. It can be difficult to get a diagnosis, as doctors and psychologists have only recently become aware of its characteristics. In this week’s post, I will be explaining the meaning of PDA and some traits to look out for, as well as telling the story of my own diagnosis.

Children with the condition go to extremes to avoid or resist anything they perceive as a demand. Requests to carry out everyday tasks such as putting on shoes, getting dressed, sitting down at a table, drawing, or saying the names of common items or pictures in a book may trigger anxiety and avoidance. Avoidance can take many forms, including making excuses, creating a distraction, intense focus on something else, withdrawing, escaping, or having a meltdown or panic attack.

My parents originally queried PDA when I was about 4, and we first started assessing for autism. However, when meeting with the psychologist, we were told that PDA did not exist. This meant that it took us a lot longer to receive my diagnosis.

Our concerns grew at the age of 10 when, despite all my parent’s efforts, I was still having meltdowns over the smallest tasks daily. After a particularly hard day, I turned to the internet and helped my parents research what was happening and what support I needed. I found a documentary, where top UK psychologists studied the case of one particular girl who I could instantly relate to. We talked together as a family and I self-diagnosed with the condition. I am aware of the risk of self-diagnosis. But this wasn’t the first time my family was first to identify a condition that was later confirmed by healthcare professionals, and it felt right for me and a relief to have answers to some of the questions I had been facing.

I believe that my story is the whole reason why PDA Awareness Day should exist. I could have received the diagnosis quicker if the psychologist knew more about it. To this day, I find it surprising how my 10-year-old self managed to find the evidence that PDA exists and notice the specific traits that I had. But luckily, research is now being conducted so that psychologists can learn more about PDA and families can receive the support they need.

Before I go, I’m curious to hear about your experiences of PDA and some of the techniques you have found to manage the condition. Hope to see you back here soon.