The gifts of Pathological Demand Avoidance

My 6 year old son rejected online Kindergarten with a ferocity that surprised everyone.

As we sat before the school issued green iPad, he would attack me, attack the screen, rip up assignments, and destroy everything in his path like a tiny, out of control dragon. His dysregulation dominated our family life. We walked on eggshells constantly, never knowing what might set off a thunderstorm of explosiveness.

My son’s total school rejection is what enabled me to discover that he has a little-known profile of autism known as Pathological Demand Avoidance (PDA). 

PDA is a neurobiological condition that wires with an extreme and pervasive need for autonomy and control. Any perceived threats to that freedom produce a panic-driven anxiety reaction. PDAers will fight, flee, faint, or fawn as if their lives literally depend on it. Like a child who has experienced complex trauma, they have a hair trigger nervous system. They explode without warning to the ordinary demands of everyday life.

If there is one way to describe my child, it’s explosive. But despite my substantial concerns, therapists and teachers assured me that my son could not be autistic. After all, he was chatty, made friends and eye contact, and had deep empathy. At the time, I was not prepared to challenge these destructive autism stereotypes. I accepted what these experts said. I didn’t know better. 

But I knew that this needed a name. I dreamed of having a label because labels meant support and community. With a name, maybe I could finally understand.

When school announced a return to in-person learning, I was heady with hopefulness. Perhaps, if he went to school, I could breathe for the first time in months. I could have those most precious parenting gifts—space and time. I scoured the internet, desperate for answers to why going to school was so hard…and leaving the house, putting on shoes, eating food, talking, and pretty much every part of his day. The first time I read the words “Pathological Demand Avoidance—an anxiety-driven need to remain in control,” I felt my stomach drop. I stayed up way too late absorbing every drop of information I could find. This was real. This had a name. At last. 

In order to heal and thrive, PDAers need a low-demand parenting approach, including releasing tiny, subtle demands like responding to a question with words, or eating at a certain time. I transformed our lives overnight. Instead of bombarding him with structure, I let him follow his own path. Like people caught in a maze, we wandered a twisty, turning path, trying to find our way out.

The labyrinth is an ancient Christian contemplative practice, leading the soul into deeper self discovery. The first time I walked a labyrinth was in a giant cathedral, spacious, dark, cold and echoey. I was one of a few bodies walking on a giant mat on the floor, awkwardly seeking a transcendent experience. The walk felt endless. God, this is weird, I whispered. Then I took a turn and arrived at the center point of the maze, in shock that I actually arrived somewhere after wandering for so long. The walk back out was dramatically different. My prayers hummed with trust: Not all who wander are lost, I prayed.

After discovering PDA, I became consumed by a new thought: 

What if he is not lost? What if I decided to trust the Spirit that leads him—this fierce, independent spirit that would not bend or mold?

He seemed born to know his own way. 

The first day of school arrived, my son did not go. I posted in my parent support group: “I want a bumper sticker that says how proud I am that my kid did not going to school today. There’s no cheery first day of school facebook post to share the work it took to trust my child more than all the ‘shoulds’ that tell me that good parents make their kids go to school on the first day.”

Now we are a team, bound by mutual respect and collaborative decision-making. I am still following him out of the labyrinth. I am trusting the Spirit that leads him. We are stumbling, falling, getting back up. We are together, finding our way home.