Let's talk about the concept of Pathological Demand Avoidance (PDA), though I prefer Tomlin Wilding's interpretation: Pervasive Drive for Autonomy. I prefer this name because it is less judgmental, but also because it focuses less on demand avoidance (which can be caused by an endless number of things) and more on the core issue: the drive for autonomy. PDA is not a formal diagnosis in the DSM-5 or ICD-10, and it is not well known in the U.S., though it is widely acknowledged in the U.K.
The core of PDA is an anxiety-driven need for autonomy. PDA causes someone to avoid demands and expectations for the sole purpose of remaining in control. When faced with a demand (even a really minor one), PDAers can have extreme reactions.
These intense reactions can be to demands that seem really minor to others (e.g., putting one glass in the dishwasher, doing one math problem, taking a shower). PDAers even have this intense negative reaction to demands that they themselves WANT to meet. They often really want to do it (be productive, be compliant, go to school, do the homework, have a job, etc.) but they cannot, because the anxiety is so intense. There is an incredibly strong feeling of “I can’t have my freedom be impinged on by external demands.”
PDAers are wired in a way that pushes them into fight, flight, or freeze incredibly easily. They typically have highly dysregulated meltdowns and often get diagnosed with a mood disorder such as Bipolar or Intermittent Explosive Disorder. They are high risk for school refusal and may have particular difficulty launching into adulthood.
There are a number of common characteristics of PDAers that make them particularly confusing to their parents and healthcare professionals:
These individuals tend to have better eye contact and better social reciprocity than most with autism, and they can often appear to be socially typical. Their relatively good superficial social skills often make people wonder whether or not they are really on the autism spectrum (but in my experience they are).
PDAers tend to be more socially savvy than most people with autism and can actually use manipulation pretty well (though I prefer strategy to manipulation, since all of their challenging behaviors are aimed at regaining a sense of autonomy).
PDAers have great difficulty seeing the social hierarchy. Parents and teachers say, "He doesn't know he's a kid" or "She thinks she's one of the adults."
Individuals with PDA can do really well for short periods of time and then (seemingly) all of a sudden stop doing well (Jekyll and Hyde), which makes it look like their behavior is entirely volitional (it isn’t).
PDAers may not do as well with routine and seem to need more novelty than most autistic individuals.
Some PDAers only struggle in one setting. So, they might do well at school (camouflage) then completely fall apart at home. Conversely, they might do well at home (if there are low demands) but fall apart with the demands of school.
PDAers often enjoy and engage in role playing, sometimes to an extreme.
All of this makes these individuals highly misunderstood; often they have experienced years of trauma (being persistently in fight or flight mode), and the years of trauma bring on new layers of anxiety and depression. It is also incredibly hard on families. It can dominate the household, wreak havoc with marriages, and affect siblings. These are parents who often have tried everything (therapy, medication, behavior plans, private schools, etc.) to no avail, leaving them feeling hopeless, helpless, and incredibly frustrated.
Recommendations:
Understand that this is all based in anxiety, almost like a phobia of a loss of autonomy. As Kristy Forbes (well known PDAer) has stated, “it’s an extreme form of anxiety…we are constantly in survival mode.”
Build relationships and practice radical acceptance.
Collaboration with the individual is critically important – allowing them to choose how to cope with demands in ways that they can handle. Give them a sense of control whenever possible.
Use their need for novelty and their interest in role play.
Do NOT threaten, give ultimatums, take it personally, or talk down to them.
Recognize their signs of anxiety and pull back when you see those signs.
Offer long and frequent recovery periods. The child and the family are almost always in either trauma phase or recovery phase (or walking on eggshells, waiting for the next unpredictable explosion).
Resources:
Websites:
PDA North America and The PDA Society in the U.K.
Steph’s Two Girls (blog and Facebook page).
Kristy Forbes' website (KristyForbes.com.au).
Podcasts:
Tilt Parenting # 173, a conversation with Melissa Neff.
Books:
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.
Me and My PDA: A Guide to Pathological Demand Avoidance for Young People by Gloria Dura-Vila and Tamar Levi.
The Educator's Experience of Pathological Demand Avoidance by Laura Kerbey
