to be neuroaffirmative is to flip the finger to medical “pathology” narratives. one such example—the best example, frankly—is PDA.
coined originally as PDA, for Pathological Demand Avoidance, it’s a term that’s sadly still more predominant than its younger cousin, Persistent Demand for Autonomy, which has decidedly more respect baked in for the inherent human need for self-determination.
PDA is described as a behavioural profile within autism. British developmental psychologist Prof Elizabeth Newson first described it in the 1980s, proposing it as a distinct syndrome within the Pervasive Developmental Disorders (PDD) umbrella. in 2013, the DSM-5 brought several existing PDD diagnoses together under Autism Spectrum Disorder (ASD); PDA itself wasn’t reclassified. Newson and colleagues’ first peer-reviewed paper on PDA, published in 2003, calls for PDA to be recognised as a separate syndrome within the PDD umbrella: Pathological demand avoidance syndrome: A necessary distinction within the pervasive developmental disorders. (spoiler alert: PDA still isn’t a standalone diagnosis in the DSM-5-TR or ICD-11, and experts are yet to agree whether it constitutes a distinct profile or condition, or how it relates to autism.)
in honour of knowing what it takes for someone with PDA to write and actually finish a book on anything—especially, since there are so few resources available, on PDA—I want to celebrate Harry Thompson’s accomplishment by quoting from his 2019 book, The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum:
on PDA:
“I sometimes wonder if ‘Pathological Procrastinating’ may be a more befitting name, or perhaps ‘Pathologically Free-Spirited’, or even ‘Pathological Curiosity’. After all, it is of utmost importance to know ‘why’. ‘Don’t play with fire!’ may seem like a reasonable injunction. If someone were to give me such an order as a child, I’d ask ‘Why?’ And if they gave me a valid and informative answer then that might’ve worked as a deterrent. But if they were to say, ‘Because I said so,’ then it would reinforce my curiosity and there’d be a chance I’d be rushed to A&E a few minutes afterwards.”
on autism:
“If I were to encapsulate what it feels like to be autistic, then the short answer would be, surprisingly, ‘normal’. This is just the way I am. I am not broken; I do not require any improvements. A longer answer would be: when I am around human beings, I feel like an alien, or a different species. They do things that I cannot get my head around, and vice versa. When I feel forced to live in the real world and do as the humans do, I resent who I am. When I am around my kind and doing things that make sense to me then I understand how being this way is a gift, and I wouldn’t give it up for the world.”
everyone needs autonomy. with PDA, though, a perceived demand can make everyday things overwhelming—even things you actively want to do. you might genuinely want to reply to a friend, then find yourself unable to once replying becomes something you must do. the pressure doesn’t have to come from someone else: your own expectations can do the job perfectly well, thank you! when this repeatedly interferes with things you want or need to do, we’re talking about something considerably more disruptive than a mere preference for doing things your own way (also, Frank Sinatra’s My Way might as well be the PDA anthem).
living with PDA is truly an experience rooted in a profound demand for autonomy, which is how I prefer to term it:
- P—Profound: it’s not a casual preference, nor is it a whim, but a deep-rooted, existential necessity.
- D—Demand: “demand” can be what other people place on you (and what you place on yourself), but even if you somehow manage to avoid all that, you’re still left with an uncompromising requirement for respect and space.
- A—Autonomy: to be alive is to have your being centred around, for better or worse, the core human right to govern your own body, mind, and actions, and have an impactful say in your environment.
labels can be harmful when they box us, but they can also help heal when they help define the nature of our innate challenges so that we may work with, rather than against, the material that makes us us. to acknowledge the experiences described as PDA (they’re real, whatever you call them), it’s important to move away from a definition that emphasises behavioural non-compliance (what’s the point of that, self- and other-imposed guilt-trippin’?!) and embrace neuroaffirmative self-determination.
an autistic person with a PDA profile can have a profound need for equality, agency, and threat-free connection. it can feel as though their nervous system is coded to operate under conditions of self-governance no matter who, what, when, where, why, or how. why use a lens in which their behavioural responses are viewed as mere defiance or wilful avoidance, when it’s so much more helpful to them and everyone else concerned to understand how those responses can protect basic freedom and agency?
here’s Harry on PDA on the Neurodiversity Podcast:
#100DaysToOffload/10