Pathological Demand Avoidance
So let's talk about the concept of Pathological Demand Avoidance (PDA), sometimes referred to as Extreme Demand Avoidance. PDA is not a formal diagnosis in the DSM-5 or ICD-10, though it is more commonly acknowledged in the U.K. PDA is thought to be a subtype of autism. Individuals with PDA have intense negative reactions to typical daily demands, because the demands cause intense amounts of anxiety and sensory overload.
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). They 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 and sensory overload are so intense. There is an incredibly strong feeling of “I can’t have my freedom be impinged on by external demands.”
Individuals with PDA 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.When they get older, the rages can become scary or at times dangerous. They are high risk for school refusal and also have particular difficulty launching into adulthood. They often lack a deeper sense of who they are and what they want.
There are a number of common characteristics of people with PDA that make them particularly confusing to their parents and healthcare professionals:
These individuals do have autism, but they tend to have better eye contact and better social niceties (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 they are).
They also tend to be more socially savvy than most people with autism and can actually use manipulation pretty well (which is also not common with typical autism).
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).
They may not do as well with routine and may need more novelty than most people with autism.
There are a subset of people with PDA that only act out 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.
They often enjoy and engage in role playing.
All of this put together 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.
Understand that it is all based in overload. As Kristy Forbes has stated, “it’s an extreme form of anxiety…we are constantly in survival mode.” The overload is from (a) anxiety and (b) sensory overload.
Collaboration with the individual is critically important – allowing them to choose how to scaffold exposures in ways that they can handle. Particularly helpful to (a) teach them how to express their feelings – and make sure they know that you aren’t judging them – there’s a strong shame component to their reactions and (b) teach them to recognize when they are shutting down and develop coping strategies, and (c) treat the fight/flight/freeze as data for what will and will not work – not as deliberate avoidance.
Give them a sense of control. Ask, “what do you feel you can do today?” Having control reduces anxiety. These kids often go into intensive role-plays, use that. Be collaborative, be flexible, give them choices (but not too many).
Offer long and frequent recovery periods. The child and the family are almost always in either trauma phase or recovery phase.
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 PDA Paradox: The highs and lows of my life on a little-known part of the autism spectrum by Harry Thompson.
The PDA Society in the U.K.
Steph’s Two Girls (blog and Facebook page).
Harry Thompson YouTube channel.
Private Facebook groups.
Tilt Parenting #191, a conversation with Harry Thompson.
Tilt Parenting # 173, a conversation with Melissa Neff.