I realized that while I have lots more to say about threat responses, accommodations, and our journey, I may have jumped ahead of myself. After eight years with our sweet girl, it has become crystal clear to me that there is more going on with her than autism. This isn’t surprising, many, many autistic people have co-current conditions, things ranging from ADHD to Ehlers-Danlos Syndrome. Our daughter is one of many for whom a diagnosis of Autism just simply cannot explain everything. I have spent hundreds of hours, days, weeks, and months researching, observing, and note-taking. I have spoken to specialists in several disciplines. I have watched other children. I feel confident. Quite confident.
She is PDA.
PDA was originally named Pathological Demand Avoidance, but many are recognizing that a name such as Pervasive Drive for Autonomy is more meaningful and accurate. PDA is classified as a subcategory of autism, meaning that anyone who is PDA is also autistic, but not everyone who is autistic is PDA.
PDA is not listed in the DSM-V, the manual for mental disorders in the United States (and Canada). However, that does not mean that it does not exist. It is well known in the UK and Australia, and is becoming more well known in North America. I recently saw on a Facebook Group I belong to that a child in Ontario was given a PDA diagnosis at CHEO, which is exciting news.
“What makes PDA unique? It is a nervous system disability characterized by a survival drive for equality and autonomy that consistently overrides other survival instincts. This occurs in the moment and over time as stress accumulates. For example, the need for autonomy will consistently trump the instinct to seek safety when in danger, to eat when hungry, to use the bathroom when needing to, and to sleep when tired. This is not a matter of temperament or personality.” Casey Ehrlich
The PDA Society in the UK lists “key features” of PDA as follows:
- resisting and avoiding the ordinary demands of life
- using ‘social’ strategies as part of the avoidance
- appearing sociable, but lacking some understanding –
individuals may appear more sociably ‘able’ than one might
expect (with, for instance, more ‘conventional’ use of eye
contact or conversational skills) but this may mask
underlying differences/difficulties in social interaction and
communication - experiencing intense emotions and mood swings
- appearing comfortable in role play, pretence and fantasy –
sometimes to an extreme extent - focusing intently, often on other people – with PDA,
“repetitive or restrictive interests” are often social in nature,
relating to real or fictional people - a need for control which is often driven by anxiety or an
automatic ‘threat response’ in the face of demands - a tendency not to respond to conventional approaches in
support, parenting or teaching.
When I started looking into PDA, I was blown away. People were describing situations that exactly mirrored our experiences. Other children also would become situationally mute. Other children would also play that they were a cat, for months consecutively. Other children also have shown that they are capable of tasks, chores, learning, or behaving as required some times, and inexplicably were absolutely unable at other times. Other children also have repeatedly said, “My legs won’t work.” The more I learn about PDA, the more it matches our every minute experience.
What happens with PDA people is an inability to discern whether normal life demands and situations are threatening or not. The part of the brain which deals with threat responses is super sensitive, and reacts to all things in the same way, forcing the body into a fight/flight/freeze/fawn response. This happens unconsciously, and so even in situations where they have encountered that food, that chore, that activity before, even when it is something that they want to do, the survival part of the brain overrides the frontal cortex and thinking part of the brain. This can create situations where the child literally cannot do the thing.
Our girl says things like, “My body is scared and I don’t know why.” “I don’t think I can do that,” or, “I can’t, I can’t, I can’t!” when she is in a full panic situation. She can end up hyperventilating and unable to force herself to slow her breathing. She can end up hitting, screaming, or curled up on the floor.
“This “survival drive for autonomy and equality” is the same “root cause” to behavior that parent’s observe throughout their PDA child’s life with regards to basic needs. For example, the more they soothe their infant, toddler, or child to sleep, the more they resist sleep. This continues to the point where the child cannot succumb to slumber even if they haven’t slept in days and want to sleep.
The subtle perception of their parents’ expectation and desire that they sleep (perceived loss of autonomy and equality), registers in the survival brain as more dangerous than the danger of not sleeping at all. Carey Ehrlich
What seems to be a choice is not. What appears as defiance is not. When she can’t, she actually can not, it’s got nothing to do with behaviour, with obedience, with resilience, with choice at all. The only option she has is through the threat response to the other side. The only thing that helps, is genuine, authentic, safety and autonomy.
When we let her be in control, we are not being pushover parents. We are using the opportunity to create a relationship where her body feels in control, so that she can handle as much as possible. When we tie her shoes for her, or dress her, or give her foods that she can tolerate, we are not spoiling her. She is absolutely capable of putting on her shoes. What we are doing is adapting what we can, in order to create an environment where she isn’t pushed into fight/flight/freeze/fawn. It is intentional, educated, and effective. That’s really the biggest key. Nothing else we have tried has been effective, but the evidence I see when I come with this mindset shows me that this is the correct track.
Sometimes the causality between PDA neuroception and its impact on basic needs (overriding other survival instincts) is harder to see, because it results from an accumulation of stress in the system and the internalization of the fight/flight response in contexts that are perceived subconsciously as unsafe (e.g. school, therapy, ABA, etc.). The fight/flight response doesn’t “go away” when teachers, therapists, or parents don’t see it, but rather it gets internalized (more “freeze”) and builds in the body. Because the child is perceiving losses of autonomy over and over again, (circle time, quiet hands, walking feet!). The child perceives losses of autonomy over and over again over weeks, months, or even years until they are at a point where they are past their Threshold of Tolerance for going into fight/flight/freeze repeatedly. (We all have a Threshold as humans!) Their system can’t take anymore. They might stop eating, have a toileting regression, not be able to brush teeth or bathe, need to be carried because their “legs don’t work,” or they may have more and more trouble sleeping. They constantly are on the edge of flight/flight. This is not a conscious or rational process. It is not the same thing as wanting choice or needing autonomy sometimes. Or being “strong-willed” or “spirited.”
It is a complex disability occurring in the survival brain. My hypothesis is that if you studied it scientifically and physiologically, you would observe the child’s inability to down regulate the secondary vagal pathway to turn off the fight/flight/freeze response. I’ll leave that one to the brain scientists, though.” Casey Ehrlich
I have read that this is a paradigm shift. That seems accurate. It’s about coming at it from a perspective that recognizes a few super important key foundations.
- We are all good inside. My kids, all of them, are good inside and want to do good and be good. Not one of them choses to be defiant or lazy or create problems.
- Kids do well when they can. Which means that if they are not doing well, they can’t. This is the same key I wrote about years ago in Behaviour is Communication
- Real disability needs real accommodations and with the right ones, the disability is not so disabling. In this case, she cannot help the way that her brain literally is unable to discern genuine threats, and therefore she will need real support and accommodations her entire life. This is not going to be easy, it is not going away, and I have the power to make it a positive and meaningful experience.
Given the choice between thinking that my kid is a bad kid or a good kid having a hard time, I know that the truth is always that they are a good kid having a hard time. I am able to accommodate her needs and change things so that more often she is able to access her thinking brain. That’s what I want to do. If I can keep her survival brain calm, then she can be in her thinking brain. She can learn, behave, eat, sleep, play, and do what kids do.
Important links if you want to learn more about PDA:
Queen in Crazy Town 