Do I have Pathological Demand Avoidance?

Note: In this blog, the terms “pathological demand avoidance,” “demand avoidance,” “PDA,” “pervasive drive for autonomy,” & more are used interchangeably. This is because we want to reach everyone seeking this information no matter what search terms they use. As the writing below describes, different communities have different definitions for these terms, & all deserve to be included here. We promise & commit that no matter what terms we use, we intend to include everyone & pathologize no one!

I repeatedly asked myself this question over nine days of doing anything and everything but creating this post (which I’m actually very excited to write!).

I felt no resonance when reading neurotypical articles on PDA. While sifting through the words of neurodivergent community members with this label, I radiated, “Yes! I think this might be me!” & another chunk of my life suddenly made sense. But I still have questions...

This reflects the inconsistent—and, dare I say, chaotic—and conflicting perspectives on Pathological Demand Avoidance.

When it comes to PDA, there’s disagreement & debate around what it should be called, what causes it, & how to classify & define it. So what do we know?

Since neurodivergent people are pure, primary sources for their own lived experiences (go figure! LOL), these are the voices we’ll center.

Important Context

Everyone with a heartbeat experiences demand avoidance sometimes, neurotypicals & neurodivergents alike! The intention behind this label is to draw a line between what is socially acceptable & what is problematic. (Which invites the question- “problematic for whom?”)

Many believe that the PDA label challenges the autonomy and personal agency of the people it’s used to describe.

Autism activists challenge this label, asserting that resistance is a rational response to the many social, sensory, & cognitive sensitivities autistics experience in neurotypical environments. They believe the label suggests that resistance is an innate trait rather than a reasonable reaction to distressing experiences, sensations, & environments.

It’s important to note that some people resonate with & fully claim the PDA label, even emphasizing the “Pathological” part because of how distressing & disruptive the symptoms can be in their daily lives. These people often self-identify as “PDAers” & can feel their experiences are invalidated by opposition to the label.

Many autistic researchers & activists advocate for a different name for this “profile” or grouping of traits because the current nomenclature is, well, pathologizing! They argue that the term “Pathological Demand Avoidance” was assigned by people who don’t understand these behaviors or the unmet needs driving them. (Much PDA research has not even sought the perspectives of those with the label. *sigh*)

Alternative names suggested by neurodivergent advocates include “Extreme Demand Avoidance,” “Rational Demand Avoidance," and my personal favorite, “Pervasive Drive for Autonomy.” (YASSSS!!!)

“The single most important thing to a PDA individual is their autonomy; to decide things for themselves & be in complete control of what they do & where they are going. We need equality and fairness; it doesn’t make sense in our brains why everyone isn’t on the same level & to be treated and respected equally. This is often a cause of why we buck against authority figures so much, aside from rejecting anyone who tries to tell us what to do!
– Jo Richardson, Different not deficient

Demand avoidance most frequently overlaps with autism but also with c-PTSD, ADHD, & oppositional defiant disorder (ODD). Prevalence is unknown because there is minimal research, & no standardized diagnostic assessment for PDA traits.

This brings me to my next point- PDA is not a diagnosis (!!!!) as it’s not included in the DSM-5 or any other diagnostic manuals.

In the 1980s, PDA was first conceptualized as an atypical subgroup of autism; then, this label was given its separate classification because “atypical” autism diagnoses were less helpful.

Despite its frequent co-occurrence with autism, PDA was associated with higher levels of eye contact & social prowess while autistics were not viewed as socially skilled enough to manipulate their way out of meeting demands. In addition, what traditionally works well for autistic kids (structure & routine) can be the opposite of what works for PDA kids (unstructured, low-demand environments).

This history has created a lot of confusion around distinctions (or lack thereof) between autism, its reasonable demand avoidant behaviors, & the evolving profile of “Pathological Demand Avoidance” as an independent label.

The Nuances of Demands

Demand Avoidance is described by the UK's National Autistic Society as “persistent and marked resistance to 'the demands of everyday life,’ which may include essential demands such as eating and sleeping as well as expected demands such as going to school or work.”

A “demand” could be a direct request such as an imposed chore or work assignment, a verbal instruction or suggestion, or a favor for someone.

An internal request could include engaging in a favorite activity, reading a long-awaited book, or using the bathroom.

Implied requests are trickier and might include a question requiring an answer or receiving food on a plate implying that this is the meal and now it’s time to eat.

“With my PDA kids, they will avoid things they want to do, if I put their favourite food in front of them they’ll have a meltdown because it ‘wasn’t what they asked for’ or they ‘can’t eat it right now’ or I ‘used the wrong colour bowl’. They want to eat it, they just can’t because it’s a demand...”
– Riko Ryuki, Autistic demand avoidance – an example

Here are a few stories in favor of me having PDA, both illustrating implied demands:

I once had a meltdown because my mother placed a pile of mail at eye level on the stairs leading up to my room. I felt I had no choice but to deal with this barrage of mail before entering my sanctuary, but I didn’t have the bandwidth. I became so distressed by what felt like an inconsiderate invasion of my consciousness & autonomy.

Another time, I had a meltdown & ran out of a bodega because the owner poured unsolicited hot sauce all over my cheddar cheese omelette, “I make it special for you!” the perpetrator reassured me. Crying hysterically in the street, I felt so violated & horrified that he imposed his will upon me because he believed he knew better than I did about what I wanted to eat. (WTF!?) My neurotypical friend was flabbergasted & didn’t understand why I couldn’t just calmly ask him to remake my food.

Demand Avoidant Responses

This list is not comprehensive & all of these responses are typically out of the PDAer’s control:

Meltdowns
Running away
Saying “no!”
Physically resisting
Laying down
Not responding
Dissociating
Distracting
Manipulating
Engaging in roleplay or fantasy
Making excuses (sometimes remarkably creative excuses)
Self-harm &/or aggressive responses (in cases of panic & overwhelm)

“Demands, particularly external ones, cause me great distress, even if I want to participate or do the action, every suggestion always has a knee-jerk ‘NO!’ response.”
– Kyra Chambers, For the love of roleplay

It’s believed that people with demand avoidance experience resistance as a result of fear of not meeting demands, need for control, strong drive to preserve autonomy & agency, & a need for certainty.

"... I prefer to describe PDA as an 'instinctual desire to be free' rather than 'an anxiety-driven need to remain in control.' Alas, anxiety is still a prevailing theme of PDA… PDAers, & many other people on the autism spectrum, feel caged in a world which does not make sense to them. Anxiety, after all, is the heart’s way of saying, ‘come back to me.’”
- Harry Thompson, The PDA Paradox: The Highs & Lows of My Life on a Little Known Part of the Autism Spectrum

Individual Impacts of PDA

Difficulty with daily living activities - including sleeping, waking, showering, eating, drinking, toileting, & household tasks like cleaning & paying bills
Anxiety, panic attacks, meltdowns, emotional distress, self-regulation challenges
Physical health challenges
Relationship & social difficulties
Legal issues & court involvement
Difficulty or inability to attend or excel in school/work as a result of distress &/or burnout

PDA can be highly complex- but deep, compassionate understanding & person-centered support can significantly reduce barriers.

If you suspect that demand avoidance, PDA, or a “pervasive drive for autonomy” may impact your life, we’d feel privileged to serve you with NeuroSpark Health’s affirming assessment, coaching, therapy, and accommodations consultation. You can also check out our PDA checklist. In addition to professional expertise, our compassionate team members are equipped with their own lived understandings of neurodivergence.

We Get It. We See You. We Welcome You. We Are Rooting For You. We Want To Be Connected.

You have unique strengths and assets that only you can bring to the table.
With support, you can be amazed by what you can do.

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References

About NeuroSpark. ADHD & Autism Specialists | Dr. Julie Landry, PsyD. (2023). https://www.neurosparkhealth.com/about-neurospark

Au, J. R. (2019, November 15). What is PDA?. Autism awareness | Www.differentnotdeficient.co.uk. https://www.differentnotdeficient.co.uk/post/what-is-pda

Chambers, K. (2021). For the love of roleplay. Humans. https://vocal.media/humans/for-the-love-of-roleplay

Demand avoidance (sometimes known as ‘PDA’). National Autistic Society. (n.d.). https://www.autism.org.uk/advice-and-guidance/topics/behaviour/demand-avoidance

Identifying & assessing PDA. PDA Society. (2023, June 8). https://www.pdasociety.org.uk/what-is-pda-menu/identifying-assessing-pda/

Kildahl, A. N., Helverschou, S. B., Rysstad, A. L., Wigaard, E., Hellerud, J. M., Ludvigsen, L. B., & Howlin, P. (2021). Pathological demand avoidance in children and adolescents: A systematic review. Autism, 25(8), 2162–2176. https://doi.org/10.1177/13623613211034382

Milton, D. E. (2013). “Natures Answer to over-Conformity”: Deconstructing Pathological Demand Avoidance.

Ryuki, R. (2022, October 26). Autistic demand avoidance – an example. Riko’s blog: PDA and more. https://dragonriko.wordpress.com/2022/10/26/autistic-demand-avoidance-an-example/

Thompson, H. (2019). So What the Devil is this PDA Malarkey Anyway? In The PDA paradox: The highs and lows of my life on a little-known part of the autism spectrum. essay, Jessica Kingsley Publishers.