Do I Have a Pervasive Drive for Autonomy?

About the Author

Kendahl Damashek is a PDA Autistic mother raising four PDA neurodivergent children. Kendahl is a Parent Coach and the Director of Content and Curriculum at At Peace Parents. She has an educational background in psychology and neuroscience and a B.A. from Amherst College. Kendahl was the lead research assistant on a project studying Therapeutic Alliance at UMass Amherst and worked with middle school children in San Francisco before focusing her energy and creativity on parenting and caregiving.

Where to find her: At Peace Parents

@kendahldamashek on Instagram 

The medical model of neurodivergence is a complex, confusing cornucopia of shifting labels, diagnostic categories, and overlapping criteria. Labels like Complex Post Traumatic Stress Disorder (C-PTSD) and co-occurring ADHD+Autism (AuDHD) have yet to be added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), even as they are widely accepted by clinicians and corroborated by the lived experiences of those affected. Within this medical model, those of us with a disability that is not yet “officially” recognized become nomads, traveling between one “accepted” diagnosis and another, never quite settling, our evaluators housing us in makeshift shelters that should yield us refuge, and yet do not. 

As a young child, I had been flagged as highly gifted and was expected to achieve Great Things. Yet I faced challenges in adulthood that matched neither my intellect nor my talents. Studiously flipping through the pages of my college course catalogue, each semester I pieced together a schedule of fascinating classes I would barely attend. As a grant writer in San Francisco, I would find myself physically shaking when our executive director would sit casually above me on my desk to have a friendly chat or discuss a new grant opportunity, bursting into tears when she left. I slept through years of my life and was eventually diagnosed with narcolepsy. I struggled with paruresis – difficulty urinating in close proximity to others, like in public restrooms – so severely that I would sometimes be unable to urinate for 14 hours, even though I wanted and needed to.

Eventually, I married and had four beautiful, incredible, challenging children. In my journey to understand them and bring peace and joy into motherhood, something that had felt promised and proved elusive, I stumbled upon the concept of Pathological Demand Avoidance (PDA), a nervous system disability that described my children precisely. To learn more, I enrolled in The Paradigm Shift Program® with the organization At Peace Parents. During a call with Dr. Mel Hauser of the nonprofit All Brains Belong, I asked whether all the labels I’d been given over the years—depression, anxiety, paruresis, narcolepsy—had anything to do with each other. Dr. Hauser handed me Occam’s Razor, asserting they could be—and likely were—connected by neurodivergence, and beyond that, the nervous system. Through a PDA lens, my medical struggles—narcolepsy, paruresis, borderline ovarian tumors—and my “mental health” challenges—Autistic burnouts, anxiety, suicidal ideation—were finally linked. Armed with this unified theory, I could reframe my needs and create suitable strategies to support myself.

It is with this personal experience as a PDA Autistic woman, as well as professional insights from my work with PDA children, teens, and adults, that I intend to support other Autistic adults who think they may also have a survival drive for autonomy and equality. 

How do I know if I’m a PDA adult?

PDA first appears in the literature as characterized by Elizabeth Newson; as recently as 2003, she describes it as an “obsessional avoidance of the ordinary demands of life coupled with a degree of sociability that allowed social manipulation as a major skill.”(Newson, 2003) But Newson herself does not identify as PDA, and, rather than lived experience, clinical observations inform her depiction. Missing, then, is the root cause of these observed behaviors, without which our understanding of PDA remains constrained. 

Think about it like this: each of us, neurodivergent or not, has a survival part of our brain that is always scanning the environment for safety, danger, or life threat. (Porges, 2004) This “neuroception” happens subconsciously; our limbic system (or Survival Brain) (Siegel & Bryson, 2011) detects danger, informing our bodies to enter fight/flight, freeze/fawn, or shutdown (Porges, 2004). A PDA brain is no different, with the major exception that our Survival Brains attune to autonomy and equality. Each time a person or a system is placed above us, whether through expectation, control, preference, or agenda, we experience a loss of true autonomy. For many this feels irksome, and for some it may even feel safe. But for a PDA individual, this loss of autonomy and equality registers as peril: our nervous systems detect danger or life threat, and our bodies respond accordingly.

In order to return to safety, then, the PDA brain and body must exert control. In externalized or fight/flight presentations, the response is often observable—as physical aggression, avoidance, eloping, and controlling behaviors, for example. With internalized presentations, this response is hidden—the nervous system bypasses fight/flight, instead entering freeze/fawn/appeasement or shutdown. This can look like compliance, self-harm, suicidal ideation or attempt, or disordered eating, for example. In all cases, the PDA body undergoes physiological changes in response to the threat to autonomy and equality that, in accumulation, cause control to coalesce around basic needs. These are, without coincidence, things only the PDA individual can control, such as safety, toileting, sleep, hygiene, and/or eating. But with our presentation overlapping a diverse set of diagnoses (e.g., ODD, ADHD, anorexia, depression, anxiety), PDA individuals often receive the behavioral treatments traditionally applied to these ailments, even though the root cause is distinct. But behaviorism introduces hierarchy and inequality, inherently threatening autonomy and equality and increasing nervous system activation. Further, we often miss entire swaths of the struggling PDA population—especially compliant, internalized presentations.

For these reasons, we choose not to define PDA as an anxiety-based need for control. Rather, we define PDA as Pervasive Drive for Autonomy – a survival drive for autonomy and equality that consistently overrides other survival instincts such as safety, toileting, sleep, hygiene, and/or eating either in the moment or over time. For an Autistic adult who identifies as PDA, the neurotype’s most disabling factor is its impact on basic needs and activities of daily living, rather than differences in social communication. If an evaluator or clinician looks primarily at social communication, the Autistic individual may appear to have low support needs; however, they may still be disabled by their neurotype. Patterns we’ve observed professionally include misdiagnosed anorexia in which eating is restricted for increased control, rather than body image; chronic constipation or encopresis misattributed to anxiety or poor diet; or stool or urine leakage incorrectly thought to be the result of low muscle tone. 25-hour sleep cycles are commonly misidentified as a circadian rhythm disorder, when in the case of PDA, the actual feeling of sleepiness can register in the nervous system as an internal loss of autonomy. The PDA individual then equalizes against the feeling by pushing through the tiredness until they either fall asleep involuntarily or reach a point where the idea of falling asleep feels autonomous. Increased history of UTIs can indicate withholding as a result of nervous system activation rather than anxiety. Self-harm is often an internalized form of equalizing against self that resolves with the nervous system regulation facilitated by PDA accommodations. Even suicidal ideation can be an indicator of a nervous system shutdown response, rather than traditional diagnoses.

1. “Equalizing:” When a PDA individual’s nervous system activates due to a loss of autonomy or equality, the nervous system reflexively and automatically seeks to replace the stature, authority, power, position, or control it has lost. Equalizing often occurs as a result of accumulated nervous system stress, rather than subsequent to a clear antecedent. In my personal experience as a mom to four PDA children, this has looked like one of my children shoving his way in front of his siblings to exit the car first, another child constantly correcting how his sister pronounces “expectation” until she’s in tears, criticizing me harshly for not explaining (even though I most definitely did) that there was money for the book fair on their Scholastic e-wallet, or seemingly random acts of physical aggression. 

But it isn’t always observable or externalized; as an internalized Autistic PDA woman, I often equalize against self. Rather than targeting another person, an internalized PDA individual will target themselves, either with disparagement, self-sabotage, or physical harm. As a young child, I would shut myself in my room and bite my arm hard enough to leave a mark. At 40, I will still do this when dysregulation peaks. I have engaged in prolonged periods of negative self-talk. Internalizers will also equalize against self by destroying their own opportunities or belongings. In 9^th grade, for instance, I was offered 1:1 Spanish private study because I was the only native speaker in my small private school. But the teacher had such strong expectations of our time together that, even though I was interested in the curriculum, I failed to complete most of the assignments and skipped class often. My more internalized child, during more activated periods, refuses to keep a protective cover on his iPad. AppleCare has seen us through five replacements in the past 18 months. Other internalized examples of equalizing include head-banging, picking eyebrows, and dissociative daydreaming.

2. Masking: Most Autistic individuals will be familiar with masking as a manual imitation of neurotypical norms, and Autistic PDA individuals may also have experience with this. PDA masking, however, is autonomic. The PDA individual reflexively bypasses a fight/flight response and either mobilizes further into appeasement, which recruits the social engagement system, or immobilizes into freeze, fawn, or shutdown. As a bookish Autistic child, for instance, I had acquired a relatively academic vocabulary. When with friends, however, I would automatically adopt their mannerisms, valley girl “accent,” and lexicon: my nervous system was appeasing. After playdates, I would collapse on my bed, almost comatose, for hours. For more externalized PDA individuals, this may look like compliance at school and defiance, opposition, and/or physical aggression at home.

3. Burnout: For PDA individuals, perceived threats to autonomy and/or equality accumulate in the nervous system over days, weeks, months, and even years. Eventually, if not accommodated, the accumulated threat will extend beyond their Threshold of Tolerance, or “the point at which a PDA child or teen’s cumulative nervous system activation becomes disabling.” When a PDA individual consistently operates beyond their Threshold of Tolerance, basic needs access becomes less and less accessible, as noted earlier. The nervous system may also engage more “immobilized” strategies: PDA adults may have difficulty with job attendance, leaving the house, or engaging in such basic forms of self-care as bathing or eating. Attempts to “motivate” or “rationalize” the PDAer into action entrench the behavior further, as the loss of autonomy inherent in the outsiders’ expectations only further activates the nervous system.

4. Constant need for 1:1 nervous system coregulation: The PDA nervous system constantly scans for signals of threat—but by the same token, it also picks up signals of safety. When in the presence of another regulated, available nervous system, the PDA individual will perceive and trust the safety it reads. This can be in the form of a partner, a parent, an assistant, an animal—any being that can provide signals of safety “mammal-to-mammal.” As the nervous system learns that it can relax in the presence of another safe human or animal, it will begin to seek these signals of safety. In children, this can look like dysregulation when a parent needs to take a phone call or talk to another adult. It might look like serial dating or extremely close best friendships in teens or young adults. An adult may be unable to complete mundane tasks when their spouse goes on a work trip.

Why this matters

Understanding the root causes of our challenges extends us flexibility, both in the language we use to describe our challenges as well as the frameworks we use to support ourselves. Defining Pathological Demand Avoidance as a nervous system disability lends us precision. Framing PDA as a survival drive for autonomy and equality that consistently overrides other survival instincts such as safety, toileting, sleep, hygiene, and/or eating either in the moment or over time, our once-perplexing struggles fall into place. With improved understanding of this neurotype, we can employ practical strategies to support ourselves with the autonomy and equality our nervous systems require and reframe our lived experiences through a compassionate lens, relieving us from the shame and self-loathing that often accompany misunderstanding.