The PDA Lightbulb

Pathological Demand Avoidance, a profile on the autism spectrum. Discovering those words changed our lives.

When we began homeschooling, I enjoyed listening to podcasts from families on a similar path. One episode of the Sage Family podcast had Debbie Reber as the guest talking about her book Differently Wired: Raising an Exceptional Child in a Conventional World. While listening along, I started to ponder the idea that maybe I was parenting a differently wired child. I had never before considered that E could be neurodivergent; strong-willed, spirited, highly sensitive, defiant, too smart for his own good, yes, but the concept of neurodiversity, and even the term itself, was new to me. I was learning new, more positive language to describe and process our experience and it felt like a step in the right direction.

I read Differently Wired and it confirmed for me that I wasn't imagining how my parenting experience seemed harder than the norm. Parenting actually was harder, more relentless, because E's brain is not typically wired. The book is excellent for anyone shifting their parenting away from the traditional paradigm, and so is the connected community TiLT Parenting.

Differently Wired references Dr. Ross Greene's The Explosive Child, another book I had never heard of, so that was next up on my reading list. I devoured it. The Explosive Child was the first parenting strategy book with scenarios that actually resembled my family's reality. I knew in my bones that Ross Greene was right; if E could do better, he would. More compassion and collaboration was the way forward, not more limits and consequences. I had been chatting with a friend about Dr. Greene and she mentioned there were a few Facebook groups connected with his work. I joined them all. In these groups there was post after post from parents just as confused as I was looking for advice and support. It was wonderful to feel a sense community. It wasn't long before one post in particular jumped out as so similar to my experience with E that I went into to the comments to read more. One commenter had suggested the parent might want to look into a profile of autism called PDA and shared a link to the PDA Society's website. Curious, I clicked on the link.

That is when the PDA lightbulb went off. As I read through the content, I was entranced. It was as if someone had come to our home, observed E, and written everything on this website about him. I immediately sent the link to my husband and as he came in from work later that evening, I said eagerly, "Did you see that link I sent you?" "Yeah... did they write that website about our child?" he joked. "Right?!!" I answered, so relieved and excited that he felt the same.

The PDA Society describes the profile of PDA as a constellation of traits within autism that includes these key features:

a. Resists and avoids the ordinary demands of life

b. Uses social strategies as part of the avoidance c. Appears sociable on the surface d. Experiences excessive mood swings and impulsivity e. ‘Obsessive’ behaviour f. Appears comfortable in role play and pretend, sometimes to an extreme extent

We both agreed it was uncanny how well E fit the profile.

This lightbulb moment happened in early August 2021 (two years since E had started struggling with intense behaviour!). After so long in the dark, I was filled with purpose and ready to research. I added every book on PDA to my Amazon cart, I downloaded every scholarly article I could find, I joined Facebook groups, found parent groups, listened to podcasts, and followed Instagram accounts. I googled and googled and googled and read and read and read. Every new source of information confirmed my initial instinct that PDA was the missing link to understanding my son; E was not a difficult child, he was an undiagnosed autistic child. He was not defiant, he was in autistic burnout, struggling to access basic needs of safety, hygiene, food, toileting, movement, and connection. Everything was hard for him because he was in a near constant state of nervous system activation and any demand could push him over the edge into dysregulation. Hi six-and-a-half-year-old self had been surviving in a neurotypical world his entire life with zero accommodations being made for his unique neurobiology. The aggression was not his fault, it was the behavioural expression of PDA, which is a nervous system disability.

I continued my deep dive into autism and PDA with training courses from n-est, inTune Pathways, and At Peace Parents. I attended conferences and summits led by PDA North America and The PDA Space. I found virtual support on group calls led by Journeys with PDA, and joined Amanda Diekman's low demand parenting community. I learned everything I could about autism and PDA so I could help my child, and there is always more to learn.

My understanding of autism has expanded greatly. Instead of viewing autism as a spectrum, it is helpful to visualize it as a colour wheel, with many dimensions and gradients.

All PDAers share traits with their autistic neurokin. However, many have fewer social communication support needs than other autistic individuals, and many are high masking, that is they are adept at hiding their autistic traits in social situations to appear neurotypical. Indeed, recognizing that an individual can present like E still be autistic can be difficult for many professionals to grasp (he is social, has intense fixations, he bucks against imposed routines, he is extremely sensory seeking, he does stim, but it's not at all the typical hand flapping or rocking you might expect, he is extremely perceptive, senses energy well, and, as my first therapist put it, he has a very good BS radar, he doesn't struggle too much with executive functioning, he is highly intelligent, he needs novelty and choices to thrive, and more). Widening the description of what it means to be autistic to include children like E represents a paradigm shift in the field, away from autism as primarily a social communication disorder and towards an understanding that, it its heart, being autistic means you sense and perceive the world in a different way because of how your brain is wired. He certainly meets the diagnostic criteria for autism, but recognizing this takes skill and nuance.

In addition to their autistic traits, importantly, PDAers also have a survival drive for autonomy and balance, which overrides all other basic needs. When a PDAer perceives a loss of autonomy, they are compelled to regain balance with the world around them in any way they can. This results in equalizing or levelling behaviour, which is the behavioural expression of PDA. Levelling can be as harmless as rolling breadstick dough into every shape except a stick or asking for the snack you want in a silly accent so you feel more in control, to more serious actions like hitting a sibling, flipping chairs, or ripping out tomato plants from the garden, all of which, and more, have happened in my home.

My new knowledge of PDA, and my recognition that E was in autistic burnout, led me to deregister him from first grade at our local public school, just a few days before the start of term. What he needed was rest and healing at home, not the added stress of school. Neurodivergent children in general often do not thrive in traditional school settings, but for PDAers, 70% cannot even access traditional school. School refusal, or Emotion Based School Avoidance, as I prefer, is all too common an experience for families of PDAers. For a PDA individual, the loss of autonomy and ever present demands in the educational environment are not conducive to a regulated nervous system. So, although we started homeschooling because we felt we had no other choice, 2021-2022 was the first school year we made the decision to continue because we knew it would be a better way to meet E's needs as a PDA autistic child.

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