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What is PDA? Well, PDA Autism is NOT...

by Rabbi Shoshana Meira Friedman


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What is PDA?

PDA stands for Pathological Demand Avoidance, or Pervasive Drive for Autonomy. In the UK where it is more formally recognized, PDA is added to an Autism diagnosis. This is starting to happen in the USA as well. While there is a lack of clinical research and consensus about PDA, but there is a growing communal consensus led by neurodiversity-affirming NGOs, adult PDAers like myself, parent coaches, and therapists.


While the working clinical definition of PDA is based on observable behaviors, I much prefer to define PDA by our underlying neurology. The way I define PDA is as follows: PDAers are people born with an overactive threat response that fires off when we are faced with a lack of autonomy, control, or equality. This can result in us having trouble meeting basic needs because our autonomic nervous systems experience the demand to meet them as a threat. PDA is emerging as its own identity within the neurodiversity movement. PDA brains tend to have certain strengths as well as vulnerabilities. (For more basics on PDA, see my FAQs post.)


As PDA is gaining awareness, I’ve been noticing some trends of misinformation on social media. Hence this post.... Please note that the clinical research on PDA is in its infancy. I am basing the following information on a) lived experience b) testimony of thousands of families in community groups, c) testimony of other practitioners who find the same trends.


PDA is NOT psychological anxiety

Anxiety is defined as being afraid that something bad might happen. Anxiety can be helped with psychological tools like CBT, or exposure therapy. It bothers me when PDA is defined as “an anxiety-driven need for autonomy and control” because it makes PDA sound like a psychological issue, caused by bad experiences around autonomy and control. While a PDAer may ALSO have generalized anxiety (I do), I believe the PDA disability is different: an overactive autonomic threat response that lives in the person’s survival brain, or limbic system. You can’t use cognitive therapy or reason on the limbic system. Believe me. Before knowing I was PDA, I tried. For decades. It does not work, and can cause a lot of shame and despair. PDAers need specific accommodations instead.


PDA is NOT caused by trauma

PDA babies are born with a PDA brain that has a hypervigilant threat response. In infants this can look like lots of crying, sudden mood changes, difficulty sleeping or staying asleep, meltdowns while trying to nurse or after nursing. It can ALSO look like extremely “calm” babies who are actually in a sort of nervous system freeze. These kiddos may or may not start externalizing their threat response as toddlers or preschoolers. Anyone saying PDA is caused by trauma is confused. What is true is that PDAers are very vulnerable to trauma because our brains perceive so much of life as a threat. It’s also true that a PDAer will likely become more obviously demand avoidant after a traumatic event. But the PDA wiring was always there.


PDA is NOT caused by bad parenting

Like any neurodivergence, PDA is a natural variation in the human brain. It is not caused by parenting. It IS likely highly genetic, like Autism in general. (I have seen a pattern of parents realizing they or their partner are PDA after learning more about it for their children. I fall into this category.) In families, one sibling can be PDA and another not, with the same parents. Parenting does not cause PDA, but conventional power-over or rewards-based or strict rules parenting can contribute to a PDA child’s struggles. This is because the parents do not yet know how to accommodate the PDA nervous system.


PDA is NOT just demand avoidance

Yes, you read that right. Demand avoidance happens to everyone. People avoid tasks for many reasons - the task may be unpleasant, or the person may struggle with executive functioning or sensory discomfort or trauma. Kids and teens at different stages of development may resist requests by authority figures. People who are stressed or traumatized may struggle with demands of daily life. PDA is not synonymous with demand avoidance. Demand avoidance is just a common strategy PDAers subconsciously use to feel safer and in control when our threat response fires off. PDA demand avoidance also tends to impact at least one basic survival need. Not wanting to do the dishes does not mean you’re PDA!


PDA is NOT Oppositional Defiant Disorder

Oppositional Defiant Disorder (ODD) is a terrible name for the phenomenon of traumatized or extremely stressed young people who do not having healthy coping strategies and act “defiantly” towards authority figures. They are often unaccomodated ADHDers, or kids who have experienced adverse life experiences like poverty, neglect, or abuse. ODD is not inherent to who a person is. PDA is different. PDA is an underlying brain wiring. It is a disability. It is a neurology that often comes with strengths, too. For many of us it is also a positive identity. That is not the case with ODD. Check out my blog for helpful resources discerning between ODD v. PDA.


PDA is NOT helped by behaviorism or strict rules

In my work coaching PDAers and parents of PDAers, I have a guiding line: We accommodate the underlying nervous system disability, and the rest will follow. What I mean by this is that with PDA, it is never going to work to focus on changing the person’s outward behavior. There be dragons! Instead, we accommodate the PDAer’s nervous system. We lower demands. We change life style. We offer a calm nervous system, flexibility, social equality, compassion. We use declarative language. We seek and try medication that targets anxiety & physiological threat response (SSRIs, SSNIs, & beta blockers help many PDAers).When the PDAer feels safe, so much is possible. When we don’t feel safe, we will avoid demands or accumulate stress.


PDA is NOT consistently presenting day to day

PDA is what is known as a dynamic disability. This means the level of accommodations and support the PDAer needs will vary day to day, week to week, year to year. For example, if on Monday my child and I stay out all day on adventures, on Tuesday we both need to stay home and do very little. We look much more disabled on Tuesday. If we were to continue to push ourselves out on adventures each day, there would come a day where we could no longer leave the house at all for a long time. In addition to the Autistic stressors of sensory, emotional, and environmental stress, PDAer’s level of disability also depends on how much threat has accumulated in our bodies.


 

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