My journey
I had been seeking answers for years. My child’s struggles started with screaming nights and evolved into explosive tantrums, food refusal, sensory sensitivities, stool withholding, extreme defiance, social withdrawal, incessant negotiation, obsessive behaviors, and emotional dysregulation. The rest of us became accustomed to walking on egg shells. We’ve sought help from so many skilled people: my pediatrics colleagues, speech therapists, occupational therapists, psychotherapists, psychiatrists, and neuropsychologists. My child has been given diagnoses and treated in various ways, but nothing ever seemed quite right.
Just over a year ago, I had never heard of PDA. For me, that acronym recalled a term from the 90s about kissing in public, something I was never into. And honestly, at first I really wasn’t into this other PDA either. As soon as I learned about it as “Pathologic Demand Avoidance” I wanted to run the other way. It sounded so negative that I wanted nothing to do with it, and I certainly did not want to entertain it as the accurate profile of my child.
It wasn’t until I was talking to a wise OT friend of mine that I was able to open back up to PDA. “You know,” she said, “the neurodiversity-affirming community is renaming PDA as Persistent Drive for Autonomy.” It’s almost like a lightbulb turned on in my brain at that moment and I was able to see clearly for the first time.
What is PDA?
My definition of PDA is adopted form Casey Erlich PhD, PDA expert. PDA is the consistent prioritization of the survival drive for autonomy or equality over and above other essential survival drives such as nutrition, sleep, hygiene, and social connections. It is often, but not always, paired with an autism spectrum diagnosis. It also can go along with ADHD, and sometimes it describes kids who are neurodiverse but without any formal diagnosis.
When a person with PDA perceives loss of autonomy or equality, they experience nervous system activation on par with a flight/fight/freeze stress response. This is an involuntary activation that makes them feel dysregulated and unsafe. They temporarily loose access to their thinking and reasoning brains and they often act out in unacceptable ways. This is why people with PDA are often perceived and labeled as having behavior problems. Many of these difficult behaviors can be understood as an attempt to regain control, thus regaining nervous system equilibrium. This is called equalizing or leveling.
PDA kids often go undiagnosed for years and go through countless medical and psychological evaluations. They are frequently misunderstood by parents, psychologists, doctors, and teachers. They are sometimes diagnosed with ODD (oppositional defiance disorder), sensory processing disorder, anxiety, and depression. Some of these disorders may co-occur with PDA, and sometimes they are misdiagnosed.
Want to learn more about PDA? I found this pamphlet from the National Health Service in the UK to be informative and helpful. There is also a screening tool, the EDA8 that can be used to quantify and scale the behaviors that make up a PDA profile. PDA is not in the DSM (the Diagnostic and Statics Manual) in the US yet. It is currently classified as a subtype under the Autism spectrum diagnosis. With growing information and awareness about PDA, this classification may change in the coming years.
An important shift
The most important shift that parents and caregivers can make is to recognize that PDA kids are trying to do well. They want to do the right thing. They are not purposefully pushing buttons or practicing willful disobedience, although their behaviors sure can feel like pointed attacks. They want to do well AND they lack the ability to regulate their nervous system when they perceive loss of autonomy or equality. Their difficult behaviors result from two things: losing access to their thinking brains and regaining control through equalizing behavior.
I know how hard it is to believe this. It stands in direct opposition to all standard parenting advice that I have been using at home and teaching my patients and families for over 15 years! My younger pediatrician self would have named this approach as misguided, weak on discipline, and rewarding bad behavior. And I have to admit that there are still vestiges of my former approach that crop up and make me doubt my current path of PDA sensitive parenting.
I am able to get back on board when I remember that I am playing the long game. I ask myself what is more important: compliance with this request or fostering trust and connection with my child? If I am stuck in my small self, the one that wants to control my child’s behavior, then I better be ready for a drop down, knock out fight because my PDA child is going to be triggered by my demand. However, if I can recognize the pattern and approach the situation with compassion and understanding, then I can act in a way to promote trust and connection with my child and I can model the behavior that I am trying to teach.
PDA sensitive parenting
1. Check yourself. This is true for parenting in general, and it is exceptionally true for parenting PDA kids. If you are triggered yourself, your interaction with your PDA child is going to result in a co-escalation. Since PDA kids loose access to their thinking brains when they perceive a loss of autonomy or equality, they need parents that bring a calm and regulating energy. I love the quote by LR Knost: “When little people are overwhelmed by big emotions, it’s our job to share our calm, not join their chaos.”
2. Ask yourself why you are making the request or demand of your child. Is it essential? Is it related to safety or basic family values or is it more about control? When I am honest with myself and reflect on this question, I find that many of the requests I make of my children reflect my own desire to maintain control over the situation. With a PDA child, perceived demands will always result in nervous system activation, so it becomes a question of whether the demand is worth the activation that it will cause.
3. Try leading a low demand lifestyle. Decrease the power struggles. Let your child have as much autonomy as possible. Let go of all the little things. Let them off the hook. Give them the benefit of the doubt. Try not to force your child to do anything. Let go of your own anxiety about what they should or could be doing and let them be self-directed. Try it for 2 weeks. See how it goes. Remember that by decreasing demands, you are helping your child stay connected to their thinking brain and feel safe and supported by you.
4. Use declarative language. Imperative language means using direct commands or questions and can trigger nervous system activation. It feels like there is no choice but to comply or answer therefore increasing pressure. Declarative language invites choice and autonomy by using invitational language and making observations. It leads to less activation and may foster more compliance or cooperation. For example, I learned that asking “What do you want for breakfast?” could be activating because it expects an answer. When I adopted the more invitational approach of, “you can have a bagel for breakfast” it was less activating and led to a more peaceful breakfast. Practice by using phrases like “I can” “you can” “we can” and making observations like “I notice” or “I wonder.”
5. Foster connection through play and humor. Humor is a great nervous system interruptor and can cut through emotions that seem locked in. Bringing silliness into difficult moments can help both you and your child reset and provide signals of safety and connection to your child. So make the face, tell the joke, and look like a fool! And through play, you can strengthen the foundation of trust between you and your child. After months and years of power struggles and nervous system activation, many PDA kids feel that their parents are out to get them. Child-directed play can provide a non-threatening activity to rebuild the trust and felt sense of safety between you and your child.
6. Stay focused on what is actually happening. When something goes wrong with your PDA child, try to stay focused on what actually happened. It’s so easy to let the mind interpret the event and tell stories about what it means about your parenting or about your child’s future, but that’s not helpful and may be harmful. And those stories that the mind spins are often not even true! In a difficult moment, it can be helpful to ask yourself if what you are reacting to is the “actual cost” of what happened or is it the “imagined or fear cost”?
7. Look within to meet your more spacious self. As a parent it’s easy to get sucked into the vortex of fear. Maybe we had preconceived notions of what kind of parents we were going to be. Here is the equation: PDA kid + preconceived parental notions x societal pressures and judgements = vortex of fear. This is the land of the “should’ve,” “could’ve” and “would’ve”. It’s in this vortex that your small self lives. Your small self might even feel trapped in the vortex. But, good news, within each of our small selves lives a more spacious self. And this larger self is big enough to contain it all: the fear, the exhaustion, the anger, the doubt. The compassion of your larger self is infinite and it’s always available inside of you.
References
Erlich, Casey. Helping Autistic PDAers Feel Safe. Two Sides of the Spectrum podcast. Episode 66, 3/15/2023. https://learnplaythrive.com/podcasts/66-helping-autistic-pdaers-feel-safe-with-casey-ehrlich/
Me and My PDA: A Guide to Pathological Demand Avoidance for Young People by Gloria Dura-Vila and Tamar Levi.
PDA North America website: https://pdanorthamerica.org/
PDA society: https://www.pdasociety.org.uk/
Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers, and Other Professionals by Phil Christy, Margaret Duncan, Ruth fiddler, and Zara Healy.