What is PDA?
The Basics
PDA stands for Pathological Demand Avoidance or, as is preferred by most PDAers, Pervasive Drive for Autonomy. It is an emerging neurodivergent profile or cluster of traits, depending on who you ask.
How we understand PDA at The PDA Safe Circle™
The PDA Safe Circle™ approaches PDA as a profile, meaning we support PDAers by looking at our patterns of disabilities and strengths, not only at "extreme demand avoidance" behavior which may or may not be present depending on the PDAer's level of distress. At The PDA Safe Circle™, we support people with a PDA pattern of behavior and/or inner experience and our loved ones in thriving, regardless of diagnosis status.
Co-occurring neurodivergence
Many identified PDAers are also Autistic and experience PDA as an unofficial profile of Autism. Many PDAers are PDA and ADHD, or AuDHD (Autistic + ADHD), or another vulnerable neurology.
Disparities
There are large and highly problematic disparities in access to PDA-affirming care. Black and brown children who fit a PDA profile are disproportionately diagnosed with the stigmatized Oppositional Defiant Disorder, which often leads to interventions that further disable and distress the child. White children with these same behaviors are more likely to identified as PDA, and their families are more likely to successfully push back against an ODD diagnosis if one is proposed.
Families with an ODD diagnosis are welcome here.
There are other disparities and co-occurring vulnerabilities in the PDA community. Families and PDA adults may face cultural barriers to acknowledging neurodivergence. Financial insecurity greatly increases the stress on PDAers, as do co-occurring chronic illnesses and other disabilities. Single-parents of PDA children are another extra vulnerable population inside our community.
These disparities are a big reason The PDA Safe Circle™ has an equity-based membership fee structure.
The state of research
Clinical research on PDA is scant but growing, and there is a lot up for debate in the research community, including the diagnostic criteria for PDA and what causes the patterns we see. PDA is described in clinical literature through outward behaviors such as extreme avoidance of everyday tasks, engaging social strategies as part of the avoidance, emotional dysregulation, and obsessive behaviors often focused on other people. These criteria often ignore the experiences of internalized PDAers, who are more likely to fawn, freeze or flop (shut down) than go into fight or flight.
For a readable overview of the science looking into PDA, check out Neurodivergent Well.
A grassroots movement
There is a growing grassroots mental health movement of PDAers and our loved ones who are not waiting for the science to come to consensus before we help each other thrive. When we listen to this population, we see a lot of evidence supporting the hypothesis that PDAers have autonomic nervous systems that very easily go into survival mode (i.e. fight, flight, freeze, flop, or fawn) when faced with a loss of autonomy, control, social equality, or – for some – co-regulation. We also see some patterns of common strengths that may stem from our nervous system sensitivity. The PDA Safe Circle™ starts by focusing on these strengths.
Is The PDA Safe Circle™ right for me or a loved one?
Read below and see if it resonates.
The following is a description of how The PDA Safe Circle™ understands PDA. If this resonates, our resources and community will be supportive to you/your family!
PDAers have highly reactive autonomic threat responses with certain triggers.
While everyone gets triggered or "activated" sometimes, PDAers' nervous systems sense danger when faced with a lack of autonomy, control, social equality/status, or a loss of co-regulation source in daily life. This threat response is disabling, which means that unless we receive accommodations the threat response limits our ability to function and thrive.
The PDAer may express the threat response in the moment, hold the threat response inside of them until it is safe to let it out, or they may accumulate a feeling of threat inside their bodies for years, unaware of why they are struggling.
PDA threat responses can include the following. Some people do one of these, some do several.
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Fight (i.e. critiquing, correcting, objecting, yelling, hitting, breaking, swearing, insulting, throwing)
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Flight (i.e. changing the subject, making excuses or rationales, manic silliness, running away or feeling that legs want to run, climbing on furniture, hiding, fainting)
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Freeze (i.e. situational mutism, racing heart with immobile body, slapping arms, rocking, being unable to move, "my legs don't work")
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Flop (i.e. situational mutism, sleepy, falling asleep, yawning, staring into space, slowing down thoughts, dissociating, being unable to move)
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Fawn (i.e. following all the rules, smiling even when scared, pleasing other people out of fear, making extra rules they need to follow)
When activated enough, a PDAer's nervous system triggers around autonomy and control will compromise or completely disable our ability to meet one or more needs of daily life. This is clinically called demand avoidance.
The drive for autonomy, control, and feeling socially equal or high status is so strong in a PDA person that it can override our ability to meet survival needs or do something the PDAer actually wants to do (from brushing teeth to trying a new food to attending a party to being kind to a loved one). This is not a matter of poor character or manipulative behavior - rather, it is an expression of the vulnerable PDA nervous system in distress.
Basic and secondary needs include:
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Eating
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Sleeping
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Bathing
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Tooth brushing
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Toileting
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Taking medication or medicine
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Staying physically safe
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Connecting with loved ones
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Communicating
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Wearing clothes
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Leaving the house
Some PDAers subconsciously manage our threat response by making up strict rules about how we meet basic and secondary needs.
Examples include rules around food that have nothing to do with taste or texture; only bathing in certain bathtubs or with certain soap; only wearing certain clothes; or only allowing certain people in the house.
The difference between PDA rigidity and the preferences of other sensitive people is that when the nervous system is activated, a PDAer cannot back down from our rules even if we want to, and even if a loved one reasons with us or cajoles us. This makes sense if the rule is stemming from a survival response to a subconsciously perceived threat.
When activated, a PDAer will often find ways to exert control or status over another person or people in a (usually subconscious) bid to regulate our nervous system.
This behavior is known as equalizing (coined by Casey Ehrlich) or leveling (coined by Kristy Forbes). Equalizing can be subtle (i.e. correcting, being the expert, critiquing, micromanaging) or overt (hiding or breaking a favorite object, swearing, yelling, hitting, insulting).
PDAers have more limited nervous system capacity than the neuromajority.
PDAers are easily exhausted and easily dysregulated by daily life. Many of us are dyregulated by preferred social stimulation and activities we love. Note that this dysregulation or exhaustion is often bottled up inside the person until it’s safe to let it out. Or it may not be outwardly apparent in “high masking” PDAers in childhood until they go into burnout later in life.
Conventional Western child-rearing practices don't work. PDAers can experience developmental trauma due to lack of accommodations, even in the absence of classically recognized adverse childhood experiences.
When troubling behavior in PDA children is met with conventional authority-based interventions (i.e. rewards, punishments, cajoling, strict boundaries, behavioral goals, and set routines) the child's distress and limitations increase, either right away or over time. Doubling down continues to make it worse. PDA children and teens, often misdiagnosed with ODD, can end up in cycles of crisis as well-meaning parents and professionals follow a rule book that fundamentally misunderstands how the PDA nervous system works.
People often find the PDA community when one or more of these things happens:
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Conventional parenting and/or therapy strategies are increasing your or your child’s struggles.
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You or your child are in burnout or a behavioral crisis and conventional interventions and professional advice like rewards, boundaries, rules, or institutionalization are making it worse.
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Professionals have said things like you/your child is “a complex case,” “has Oppositional Defiant Disorder,” is “maybe bipolar but doesn’t quite fit” or “can’t possibly be Autistic because they are too social.”
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The suspected PDAer has an Autism diagnosis but many meltdowns or rigid behavior have nothing to do with routine disruption or sensory distress.
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The family has been doing an intuitive version of low demand parenting or living, are being harshly judged by others, and are looking for an understanding community.
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You recognize you or your child as PDA from reading about PDA strengths, even if the level of disability and distress is not yet at crisis levels. You want to learn how to avoid burnout. (I love when this happens!)
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Your identified or not yet-identified Autistic child(ren) is struggling to attend school, school professionals are perplexed (as once at school the child “seems fine”), and conventional approaches to support school attendance are not helping and/or are making the child’s experience/wellness worse.