I created this site with the help of my son. We feel that sharing our PDA story is one of the most powerful ways to advocate for families going through similar journeys.

My son received a diagnosis of autism just before his 4th birthday and ADHD around 5 years old. Our kiddo was extremely intelligent and verbose at an early age. He was identifying numbers and counting to ten before a year and a half and could have a full conversation by his 2nd birthday. If you allowed him, he would tell you more than you wanted to know about dinosaurs and monster trucks. It didn’t take long, however to notice his unpredictable “tantrums” of epic proportions that ultimately led us to seek out help. He was extremely social, loved leading a group of peers, dressing as a villain or superhero, had good eye-contact and a great smile.

Despite our best efforts at early intervention with all the recommended therapies for autism, our son did not seem to be improving. In fact, tighter structure, routines, visual schedules, and checklists were only making things worse and our kiddo hit “burn out” by the end of 1st grade. He was eloping, throwing chairs, destroying other students’ artwork and projects, and at its worst even showed signs of aggression. Asking him to do daily tasks would trigger behavior similar to a caged animal complete with crouching, growling, and charging. He stopped all hygiene including brushing his teeth and bathing, refused to change his clothes or even leave the house. The only activity he would consistently tolerate was watching tv. Without a screen his “boredom” would often trigger an aggressive episode.

By some divine intervention we learned about Pathological Demand Avoidance or Pervasive Drive for Autonomy (PDA). Children like ours process the world differently and while there are many traits that overlap with autism, there are many management strategies that do not. Any loss of autonomy to a PDA child is perceived as an extreme threat, as if held at knife-point. So simple demands such as brush your teeth, put on your jacket, stop that, are all seen as small losses of autonomy that can trigger their nervous system every single day. Initially, their reaction to these stressful losses may manifest as refusal to comply or “defiant” behavior. Over time, these behaviors can escalate to fight or flight responses and even “burnout.” In this stage, these children seem to regress or lose basic functions that can effect hygiene, nutrition/diet, toileting and others. Our children are not choosing to be “bad” or “oppositional” simply for the sake of it, they truly perceive real threat and real trauma, and their behavior is not a choice, it is a reaction rooted in anxiety and fear.

Almost overnight we transformed our home and switched to trauma-informed parenting. We lowered many demands to signal safety to our son and build trust with him again. We found other trauma-informed supports and are finding peace in our home again.

If this story resonates with you, we would love to connect. There is a paucity of information available on PDA and what we found has largely been through networking and word-of-mouth from other parents, and PDA adults. We don’t claim to know everything, and we ourselves continue to learn. What works for one PDA child, may not be the answer for another, but there are generalities and guidance that can help for us all. Until PDA becomes an official diagnosis or subtype of autism in the US we must continue to learn from each other. So let’s collaborate and spread the word because knowledge is power and we are more powerful together.