The science behind the PDA controversy - Part 1
PDA has become a controversial topic these days. If you’re following the conversations on social media, you may have seen a variety of posts on the topic already. PDA refers to a cluster of symptoms characterized by an avoidance of everyday demands and a strong need for autonomy. It isn’t part of the DSM or ICD and isn’t officially diagnosed, but many people, including myself, have come to identify with the profile.
With PDA, even the name brings up controversy. Originally standing for ‘pathological demand avoidance,’ it is also known by extreme demand avoidance, persistent drive for autonomy, rational demand avoidance, and demand avoidance phenomena. (I will use PDA throughout for simplicity, since it's most commonly referred to this way.)
When I first started learning about PDA, it was in online spaces, where others who identify with PDA shared how it manifests for them. These PDArs described an experience characterized by an intense threat response to a perceived loss of autonomy. It could be triggered by anything that presents as a demand or expectation - from an authority figure giving direction, to the need to respond to bodily functions like drinking water or going to the bathroom. The primary symptom for those of us who identify with PDA is that if you feel pressure to do something (even if the pressure is coming from your own mind or body) it causes a debilitating stress response that makes it incredibly difficult to do the thing. PDA is also said to be tied to factors like using social strategies to avoid these demands and expectations, not seeing authority figures as real authorities, and having an intense need for control over your own situation and environment.
When I discovered PDA, I was investigating whether I might be autistic (spoiler alert: I am). While I fit the autism criteria, the wide variety of autistic manifestations meant that I didn’t always recognise myself in descriptions of autism online. But when I learned about this thing described as the “PDA profile of autism” I instantly knew that it described me. It fit me perfectly and explained so much about my life and why it had been so challenging.
It was like a breath of fresh air to see myself reflected in the description. The conversation about autism seemed full of conflicting opinions about whether there was anything I could do to help improve my situation, and warnings that much of the approved treatments for autistic people were actually harmful in the long run. But the discussions on PDA led me directly to methods I could try - like adopting a low-demand lifestyle and sharing PDA triggers with loved ones so they could stop triggering them. These helped to drastically improve my life, almost immediately.
So you may be able to understand the sinking feeling I got when the conversation online suddenly seemed to shift to a debate about whether PDA was even real and whether it was actually harmful or ableist to identify with it. I felt an intense rush of frustration and a desperation to explain why these critics had it all wrong, but I held myself back from joining in on the rush of comments and videos. I knew I had to understand the situation myself, fully, in my beautifully autistic, hyper-fixated, bottom-up thinking, kind of way, before letting my emotions get the better of me.
What I wanted to see in the world was an article with linked citations, explaining the debates so far and what research backed the various views offered. I didn’t find that outside of academic journals, so I decided to make it myself.
I’m a science journalist with a PhD in the philosophy of science. My academic and professional background are in analyzing new or underdeveloped areas of science to determine whether they are methodologically sound. My work has had a particular focus on psychology and methodologies that gather scientific data about internal subjective experiences. And I’m particularly interested in science on stigmatized topics, where researcher bias is likely to impact how that research is conducted. The questions about PDA fall right into this category.
So, I quickly found myself diving into the first-hand research on PDA trying to gain some insight into the debate. I also kept listening to those online, my fellow PDAr’s on all sides of the discussion. I knew that their perspectives were important to understand before jumping in with my own instinctive reactions. And honestly, the critics of how PDA was being discussed had some really good points. I started to see my PDA in different ways, and unlock new insights into what other conditions might be underlying the experiences I was having.
I was particularly appreciative of the forum discussions held on TikTok by @diversityinnd on PDA and its potential explanations, the collection of full text research papers on PDA (and many other topics related to autism) compiled and offered by @_kaligirwa on TikTok, the evidence-based perspectives of @ND_psych on PDA, and @auticorrect‘s honest and vulnerable description of how they were impacted by the PDA discussions.
These were incredible resources for me and I encourage everyone to check them out.
After a few weeks absorbing all this information and compiling a giant collection of citations for this article, a picture started to emerge. What I discovered showed me just how complicated the situation is with PDA… and how much we still have to learn.
The PDA Controversy
Ok, so why is PDA so controversial right now? It’s not just one issue. Still, much of it stems from the fact that PDA is often being referred to as a profile of autism or as its own independent neurotype, when research has yet to confirm either claim. This has led to a debate on whether people are spreading misinformation about PDA, as well as opening up big questions about what PDA is.
Is PDA even a real thing, or is it just one manifestation of autism being repackaged under another name? Is it its own neurotype or syndrome? Should we understand it as autism plus some other underlying condition like anxiety, trauma, ODD or ADHD? Could it actually just be another underlying condition that’s associated with autism? Should we even be using the name?
On the extreme ends of the debate, one side seems to suggest that using the PDA label is an ableist way to distance oneself from an autism diagnosis and should be abandoned completely. They point out that the research on PDA is methodologically weak. Its causes and mechanisms are not well understood. It doesn’t have a standardized or operationalized criteria for diagnosis, and it is difficult to differentiate it from other conditions. They argue that it’s unnecessary to create a whole new condition to explain symptoms that can be attributed to autism or other already diagnosable conditions. They point out that using the PDA label may actually keep people from understanding the underlying causes of their symptoms. This could keep people from accessing the help they really need.
Relatedly, some argue that PDA pathologizes behavior and responses that are actually rational, like wanting to have autonomy in your own life, and resisting things seen as “normal” to neurotypical society. This could take away access to self-advocacy for autistic people (and perhaps those with other diagnoses) because it labels their demand avoidance as pathological rather than seeing it as a rational response to their situation.
For all these reasons, this side of the debate argues that the PDA label should be dropped and we should refocus on autism and other related conditions.
On the other extreme end of the debate, the critics of those who would do away with the PDA label say that PDA is a really helpful way to understand their identity and their challenges. They say it has helped them find resources to finally shift things in a better direction. They argue that it's not up to other people to define their identity, and that autism and other conditions don’t explain their symptoms fully. They point out that others shouldn’t assume they know more about their internal experience than they do, by trying to explain away their symptoms with references to other conditions. They say “If other diagnoses fit you, great! But they don’t fit me. That’s why I was left without answers or help until I discovered PDA.”
Somewhere in the middle, you find people who point out that research is not there yet and we still don’t really know what PDA is, what causes it or if it’s a distinct neurotype. But one thing is for sure - there are people who strongly identify with it and say the resources surrounding it have helped them. If it’s helpful for some to conceptualize themselves this way… why not keep studying the phenomenon and keep directing people to resources that seem to help them?
Of course, this debate is not just on social media. This controversy is reflected in the scientific literature itself. Still, my review of the scientific literature suggests to me that these viewpoints are actually not as conflicting as they initially seem. Both sides make important point that need to be integrated to bring us to the most accurate picture of PDA and how to approach it in a scientifically-informed way. But to understand how to integrate these views, we need to go back to the research, to understand the complex situation that PDA represents.
This article is the first in a series investigating the science behind PDA. As we go through its five parts, I’ll outline the research behind these views and offer my own perspective on how to understand that research. You can find Part 2 “PDA’s Origins & Criteria” here.
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