When you first started hearing rumblings about PDA, you probably scoured the internet for all the information you could find. Unfortunately, you may have encountered a fair amount of resources that offered a pretty pessimistic, disheartening and downright scary perspective on PDA.
Take, for example, the online PDA support groups on Facebook. While there are certainly some good nuggets on those sites – especially when PDA adults themselves weigh in on parent questions – there are just as many harrowing accounts of PDA children and teenagers that are so violent, they end up institutionalized in residential homes away from their families. (Sometimes this is a necessary step for a family, and I am in no way judging this outcome). Although at the time I was devouring any and all information I could find on PDA, I eventually had to stop reading these posts because it was too overwhelming and anxiety-provoking.
What I will say as a trained academic, is that what you see on Facebook is not a reflection of a representative sample in any way. These comments and responses do not represent an accurate picture of all PDA children and teenagers, nor even an average. Rather they are skewed towards the most intense situations and cases, because those are the people who are motivated to post publicly.
Additionally, while it is necessary to be clear-eyed about how challenging this disability is for children and their families alike, it is important to pan out and see the research and statistics in context, with compassion for yourself and your child.
For example, when I read the book, "Understanding Pathological Demand Avoidance Syndrome in Children," I felt like someone had punched me in the stomach. When I read the “Moving into Adulthood – What is the Outlook?” section, I wanted to throw the book across the room. In this part of the book, the authors explain the results for a study in which researchers followed a sample of 18 PDA children who were tracked into adolescence. The researchers then administered surveys to see how the PDA individuals and families were faring.
A summary of the parent interviews states that, “The continuing problems with impulsivity and mood swings affected all but one individual, with most still becoming violent when angry. This alongside difficulties in social emotional understanding, meant that many had got into trouble as young adults in one way or another. A number had been in trouble with the police…” (190).
Of course, this is depressing to read. But when I tapped into my rational side, I reminded myself that due to the very cutting-edge nature of the research -- this was the first small cohort to have been studied – these PDA young adults represented a sample of individuals that were likely not initially recognized as having PDA early in their childhood. Even if they were recognized, we can assume they were also not appropriately accommodated throughout a large chunk of their lives in the home, in school, or therapeutically. In fact, it is likely that, unfortunately, the families did not have the information or supports that now exist based on this research. We are lucky enough to be part of a new generation of PDA parents, with a lot more information and resources at our fingertips.
I want to conclude by sharing with you that I am so utterly proud of my PDA son, Cooper. I look at his face now and I see light, freckles, gapped-teeth, and an adorable six-year-old who wants to share his new Lego discoveries with me, and occasionally rewards my parenting skills by leaving candy pieces on my bedside table at night. Yet, two years ago, there were more days than not when I wished he had never been born. I was counting down the days until he turned 18 and I could only relax when he wasn’t within the walls of my home. It was a dismal and dark place to exist. And my primary reason for writing these posts in the "Where to Start" section is to help you also move out of that dark place.
Through these past two years – of really accepting and accommodating him for who he is – he has started to blossom on his own terms. He has become adorably protective of his little brother, whereas I used to be scared to leave him in the same room without hypervigilant supervision. He is also making friends, attending occupational therapy with excitement, and sometimes even choosing to sit at the table with us for dinnertime. He is attending public-school kindergarten (part-time because of the pandemic) with a 504 plan, and while this might not last forever – we may at some point have to homeschool or send him to a private school that is focused on learning differences – he is doing well right now. Yes, he is behind his peers academically and socially, and will likely repeat kindergarten because he can’t access virtual school, but it’s all OK.
Sometimes I think about the counterfactual and it scares me -- What if I had given up on him? What if I had truly decided he was a bad kid? Where would he be now? And what would have become of us, this family?
Please remember that your story is not yet written. The fact that you have read until now, indicates that you are willing to spend time and effort to help your child. And really, that means you are already halfway there.
I believe you in you, and you should, too.
Good luck!
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