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FAQs on PDA by a PDAer

by Rabbi Shoshana Meira Friedman


What is PDA?

PDA stands for Pathological Demand Avoidance, or Pervasive Drive for Autonomy. The latter is preferred by many PDAers. PDA is a widely understood to be a profile of Autism. A PDA is person is born with an overactive threat response that fires off when faced with a lack of autonomy, equality, or control. 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.


Our threat 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 spend less time in their survival brain, and more time with access to their "thinking" or "thriving" brain. Like other profiles of Autism, PDA is a lifelong disabling 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 experience of PDA is much more about our feeling of threat response. Avoiding demands is simply one strategy we employ to cope with the overactive threat response. “Equalizing” is another. Equalizing is a term for a PDA’er 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 feature of reality itself.


 

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 an official diagnosis in the UK.


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 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:


 

What is the Difference between Oppositional Defiant Disorder and PDA? How can I tell if my child or student is one or the other?



 

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?

Yes. 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. PDA is not only defined by demand avoidance. 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?

Being PDA can look like having complex trauma, and PDA’ers are at high risk of trauma because our brains perceive many situations as dangerous that a neurotypical brain would not.


But PDA itself is an underlying brain wiring. It is not caused by a traumatic lived experience. Our brain wiring will never be changed no matter how much trauma therapy we go to.


Many PDA’ers, 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.


Trauma therapy will not change our underlying brain wiring, though it can help with any concurrent PTSD.


 

Why is PDA associated with Autism?

PDA is widely understood to be a profile of Autism. That means that people clinical observed as displaying PDA characteristics also met diagnostic criteria for Autism.


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, PDA'ers can be more or less disabled depending on the person, accumulated stress, and the environment.


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?


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 consensus at this point.


I will also point out that non-stereotypical Autism is still significantly under-diagnosed, and PDAers tend to present as very different from 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. I do not have data to back this up, though.


 

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 I have a guiding line: Support the underlying nervous system disability, and the rest will follow. When we accommodate the disability, the PDAer will feel safer. Problematic behaviors dissipate, 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 disability's limits.


Specific accommodations for PDA include but are not limited to:

  • Dropping demands proactively (Low Demand Parenting for kids)

  • Collaborative problem solving (see the work of Ross Greene)

  • Using declarative language (Making statements instead of commands or questions. "I wonder if you'd like some lunch." instead of "What do you want for lunch?" or "Please get ready for lunch."

  • Allowing the PDAer to feel socially equal or high status (what I call healthy equalizing)

  • Sensory accommodations and pleasure

  • Non-reactivity and compassion in the face of the PDAer's threat response

  • An attuned, safe nervous system alongside them (for children this is usually a parent)

  • Flexibility with plans

  • Minimizing spoken language cues

  • Strewing items and ideas instead of directly asking, ordering, or expecting engagement.

  • Allowing deep engagement in special interests

  • Humor and silliness

  • Imaginal play/role play

  • Ample rest and time in their safe place

  • Many PDAers benefit from anxiety medication

  • Many PDAers benefit from unlimited access to screens

  • Offering PDA as a positive identity and framework for self-awareness and self-compassion


To learn more and get 1:1 support in supporting yourself as a PDAer or your PDA child, talk to me!



More on the Basics of PDA:


Connect to community, group classes, and teachers:

  • Amanda Diekman

    • "I help exhausted parents of kids with challenging behaviors to drop demands and create calm so you can embrace your kids with radical acceptance."

Instagram: @lowdemandamanda


  • Casey Ehrlich

    • "I am Casey Ehrlich, Ph.D, and I can give you the tools and strategies you need to support a PDA child or child with a hyper-sensitive threat response."

Instagram: @atpeaceparents


  • Kristy Forbes "Positive Autistic identity, culture, and family lifestyle"




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I bring the full power of my rabbinic training, lived experience, & deep study of Autism & PDA to my coaching sessions.

 

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