by Rabbi Shoshana Meira Friedman
The PDA Safe Circle™ is my strengths-based approach to thriving
for PDAers of all ages.
What is PDA?
PDA stands for Pathological Demand Avoidance, or Pervasive Drive for Autonomy. The latter is preferred by many PDAers. While clinical research on PDA is lacking, there is a growing consensus among the PDA community that PDA is best understood as a nervous system disability. In the PDA community, PDA is a widely understood to be a non-stereotypical presentation of Autism, however there is not clinical consensus on this yet. My resources are geared to PDA Autistics.
Here is how I understand PDA.
Like other Autistics, PDAers have differences and/or disabilities in the areas of:
· Social interactions and relationships
· Language and communication
· Sensory processing
· The way our attention works, including special interests, repetition, monotropism, and bottom-up processing
In addition, PDAers are:
· Born with hypervigilant, extremely sensitive autonomic nervous systems that easily go into threat/survival mode when faced with a lack of autonomy, control, or social equality/social status. These threat responses include flop, fight/flight/freeze, and fawn.
· Particularly prone to two coping strategies for this threat response: Demand avoidance of every day tasks, and equalizing (asserting control or status over others or tasks to feel safe). We often use social strategies (like excuses, procrastination, or silliness) to explain our avoidance.
· Often socially outgoing and missed for Autism diagnosis, even though we meet Autistic diagnostic criteria as Autism is now defined.
· Often have special interests/controlling or obsessive behavior that is focused on other people.
· Often highly comfortable in imaginative and pretend play.
When in threat mode, our autonomic drive for autonomy is so intense it can override our drive to meet one or more basic needs, like eating, sleeping, using the bathroom, bathing, or staying safe. I believe PDAers are particularly disabled in Western society, due to its high levels of demands and low autonomy for children, and low levels of robust intimate social networks and belonging.
The PDA threat response response can also prevent us from doing an activity we want to do, or connecting with a loved one by letting down our guard, because these desires can be perceived as "demands" (i.e. threats) by our subconscious brain. A person's perception of threat is known as neuroception, a term coined by neuroscientist Dr. Stephen Porges as part of polyvagal theory.
PDA is not a behavioral disorder. It is best understood as a nervous system disability that requires accommodations in life style that help a PDAer feel safe.
Like other profiles of Autism, PDA is a lifelong brain difference. There are PDA babies, children, teens, adults, and elders in the world.
When we are regulated and accommodated, PDAers have many strengths. We tend to be gifted autodidacts (i.e. very good at teaching ourselves what we want to know), with a strong drive towards mastery of skills and topics we care about. We tend to be creative, imaginative, highly empathic, and have a strong drive towards fairness and justice in the world.
Some PDAers have accompanying cognitive disability. Some PDAers are gifted, with cognitive or creative skills well beyond what is typical for their age level. They may be identified as twice-exceptional (2e), a term that refers to someone who is significantly challenged or disabled in some ways and gifted in others. There is a lot of overlap between the 2e and Autistic communities, but certainly not all 2e people are Autistic and not all Autistics are 2e.
Why do "basic needs" and "threat response" have to do with demand avoidance?
Like most forms of neurodivergence, PDA was first described by people on the outside looking in. From the outside, PDA’s most defining characteristics are avoiding demands from other people, like parents or teachers or bosses, or the demands of daily life, often using "social strategies" for this avoidance, such as making excuses, role playing, or being silly.
But from the inside, the disabling experience of PDA much more about our feeling of threat response. Avoiding demands is simply one strategy we employ to cope with being born with such a sensitive nervous system and threat response. “Equalizing” is another coping strategy. Equalizing is a term for a PDAer acting in ways that protect our sense of autonomy or control in a situation. PDAers can equalize against another person (hiding a favorite item, pushing, yelling), our own body (withholding food or bathroom), or a task (i.e. only wearing skirts and no pants, only brushing teeth with a specific toothpaste, making strict dietary rules).
How do you get a PDA diagnosis?
If you are in the USA, where I live, there is no diagnostic code for PDA in the DSM-5. Some clinicians are becoming familiar with PDA as a profile of Autism, and some American Autism evaluations will list PDA as a child's Autism subtype/profile. But this is not an official clinical diagnosis in the US.
PDA is more commonly recognized in the UK, where clinicians are adding it under an Autism diagnosis. But it still does not have its own diagnostic code.
Many parents will self-diagnose their children as PDA after learning about it. Then they find community and resources from there. You do not need a clinical diagnosis in order to try out a PDA lens on yourself or your child.
Do you or your child make more sense if you consider you might have been born with an overactive threat response that gets triggered when faced with a lack of autonomy, control, or equality?
If so, you do not need to wait for a clinical diagnosis to try out accommodations at home, or to advocate for them in a school context. See next question for resources on school.
I am an educator. How can I support PDA students?
You can search for "school" on my blog for my posts about supporting PDAers in a school environment.
You can also check out:
PDA North America's resources on school.
What is the Difference between Oppositional Defiant Disorder and PDA? How can I tell if my child or student is one or the other?
Please see this blog post for a detailed answer to this question.
I avoid demands sometimes. Does that mean I am PDA?
Everyone is demand-avoidant sometimes. It’s part of being human, and other neurodivergent people or people with PTSD can be particularly demand-avoidant due to specific triggers. PDA is different. It is an underlying nervous system disability in which a person’s drive for autonomy, control, and equality consistently gets in the way of their ability to regulate and meet basic needs unless they have the right accommodations. See Dr. Neff's excellent blog on Demand Avoidance vs. PDA.
Are you born with PDA?
I believe the answer is a resounding yes, and that PDA is an underlying brain wiring you are born with. Like other forms of Autism and neurodivergence, it is part of the diversity of human brains. That said, many people can benefit from the accommodations for PDAers because they are based on nervous system safety.
In my work with PDAers, I am passionate about advocating that PDA is not actually about demand avoidance. Demand avoidance is simply the most externally obvious coping strategy that others see for when we feel unsafe, and the profile was named after that.
When regulated and well, PDA people tend to have certain strengths. PDAers are often gifted autodidacts (i.e. very good at teaching ourselves what we want to know), with a strong drive towards mastery of skills and topics we care about. We tend to be creative, imaginative, highly empathic, and have a strong drive towards fairness and justice in the world. PDA is emerging as its own identity within the neurodiversity movement.
Are you sure PDA is not just complex PTSD?
I stand firmly in the belief - supported by lived experience and a lot of anecdotal evidence – that like other forms of Autism, PDA itself is an underlying brain wiring with vulnerabilities as well as strengths. It is not caused by a traumatic lived experience. That said, how disabled we are depends on a lot of factors, including our culture, the parenting style our parents used, and our specific neurobiology. Being PDA can look like having complex trauma, and PDAers are at high risk of trauma because our brains perceive many situations as dangerous that a neurotypical brain would not. Essentially, we are easily traumatized by daily life.
If we understand PDA as a neurotype like other forms of Autism, it stands to reason that it will never be changed no matter how much trauma therapy we go to. However, nervous system toning and trauma informed therapies, along with PDA accommodations, can make a huge impact on how disabled we are by our neurotype and threat response.
Many PDAers, myself and my son included, were raised in stable, supportive homes with no obviously adverse traumatic experiences. Yet as babies and young children we exhibited fight/flight/freeze behavior you wouldn’t expect of a typical child, or even another Autistic child. PDA explains this difference by giving a name to the pattern: our brains perceive loss of autonomy, control, or equality as an existential threat.
Why is PDA associated with Autism?
While there is ongoing debate in the clinical world about whether PDA is best categorized under Autism, virtually every family I have been in contact within the PDA community has a PDAer who is either self- or clinically-diagnosed as Autistic.
Being Autistic means we have neurodivergence and/or disability in the following areas: social interaction, language/communication, repetition and routine, and sensory processing. These differences and disabilities can be obvious to an observer or they can be masked, camouflaged, or internalized.
Like other subtypes of Autism, PDAers can be more or less disabled depending on the person, accumulated stress, and the environment.
It can be very helpful to understand PDA through an neurodiversity-affirming Autistic lens because it emphasizes the importance of sensory accommodations, communication differences, and special interests. However, PDAers need a different application of many accommodations used widely for Autistic people (i.e. schedules, widely used to support Autistic children, can increase anxiety for PDAers since they are perceived as a loss of control or autonomy).
The most important thing is to look at the person in question and experiment with what accommodations and identities will best support them.
Research and understanding of both the diversity of Autistic presentations and of PDA (including internalized presentations of PDA) is always evolving. See the PDA Society of the UK for more information.
Can you be PDA and not be Autistic?
To understand this question, we need to back up a bit. Demand avoidance is a coping strategy that we see in many people, including ADHDers and traumatized or stressed neurotypical people. But when I talk about PDA, I am talking about a full profile, a subtype of human brains that has common vulnerabilities, strengths, copings strategies, and developmental patterning. By this definition, most PDAers seem to fit diagnostic criteria for Autism, and in my work I assume that a PDAer is Autistic unless they feels strongly otherwise. This is important because working with Autistic brain wiring instead of against it is vital to thriving for PDA Autistics.
There are definitely people who question whether all PDAers are Autistic. I am not personally invested in any particular finding about PDA and Autism. I'm invested in human beings living well and feeling safe and whole. I'm invested in neurodivergent people having positive identities that lead us to the community, support, and accommodations that we need to be healthy and happy.
In my blog and on Instagram I talk about PDA as a profile of Autism because that’s what I have experience with, and that is the general community consensus (though it is still debated clinically).
I will also point out that non-stereotypical Autism is still significantly under-diagnosed, and PDAers tend to present as very different from Autistic stereotypes. We tend to be social, charismatic, and often "mask" our Autistic traits and disability when in public or school. I hypothesize that many "non-Autistic PDAers" are simply not yet diagnosed as Autistic.
How did you learn you and your son are PDA?
I heard about PDA from a friend, and looked up the criteria at PDASociety.co.uk. I brought the idea to my son’s Occupational Therapist because the criteria fit my son perfectly. The OT agreed – and she realized that despite knowing about PDA, she had missed my son being PDA because he and I had deeply trusting relationship. In short, he was in better shape than most of the PDA kids she had worked with. However, he was also very clearly PDA once we looked at the pattern of his behaviors since birth.
When I first learned about PDA, I laughed and said I had "Pathological Compliance Disorder." Then I learned about internalized PDA, and how the threat response can be turned inwards toward controlling oneself. This fit my experience of life since very early childhood. I worked with a PDA therapist who agreed with my self-diagnosis. Since I live in the US, there is no clinical diagnosis for either my son or me. We are, however, both diagnosed Autistic.
How do I help myself as a PDAer, or support my PDA child, partner, or student?
The best way to support a PDAer is to shift away from a mindset of PDA as a behavioral problem, and instead understand it as a nervous system disability. In my coaching practice, I work with PDAers and parents of PDAers with a guiding line: Help the PDAer's nervous system feel safe, and the rest will follow. I am passionate about advocating that PDAers are not inherently avoidant. Our avoidance is a symptom of an underlying intense threat response that can calm down with the right accommodations. With these accommodations, problematic behaviors dissipate, and we can access more basic needs, joy, learning, socializing, and overall thriving. These are all signs that our overall mental health is improving. We will always be disabled, and always need accommodations. But with the right accommodations we can live well within our limits.
The PDA Safe Circle™ is my strengths-based approach to thriving
for PDAers of all ages.
More on the Basics of PDA:
Brief & thorough overview of PDA in The Sunfield Center, includes discussion of internalized PDA
Interview with Kristy Forbes in Forbes Magazine on PDA as an emerging neurodivergent identity.
PDA vs other forms of demand avoidance, by Dr. Neff of @NeurodivergentInsights
The PDA Society in the UK has excellent resources, and includes testimonials from adults.
PDA North America puts on webinars and has very helpful free resources. They also have a new book out!
