The science behind the PDA controversy - Part 3
This is the third installment in a series investigating the science behind Pathological Demand Avoidance (PDA). In the first part of this series I talked about the controversy behind PDA. In the second part, I go into detail about the origins of PDA and investigate whether it is even a real phenomenon. If you haven't read parts 1 and 2 yet, I definitely recommend going back to them first.
In this article, I’ll discuss whether PDA is actually just autism, and what research supports or conflicts with that theory.
Research Supporting PDA as Autism
Autism may be the most obvious choice when we are looking for an underlying condition that manifests with PDA symptoms. And indeed, many in the online discussions are promoting the idea that PDA is JUST autism. This view says that PDA represents a certain manifestation of autism, but like aspergers, which was collapsed into autism, it likely isn’t distinct enough to warrant its own diagnosis.
And it makes sense, after all, that a condition originally separated from autism because of a few factors that didn't fit, and diagnosed under a label that now IS part of autism, would just be autism.
There is definitely some support for this view in the research. For one thing, many, if not all of the PDA traits can be found in autistic populations. A 2018 study by O’Nions et al, for example, looked at autistic children who met the EDA-Q’s criteria for PDA and did an in depth look at their symptoms. They found a wide range of characteristics considered to be PDA traits in the group of autistic children. They were also able to offer explanations of how each trait could be explained with previously identified autistic traits. This could potentially suggest that PDA requires no explanation beyond the variety of traits already present in the autism spectrum.
And many in online spaces have echoed this idea, sharing ways in which their demand avoidance could come from autistic traits like difficulty with transition, sensory issues, or difficulty recognizing their own internal signals.
Can PDA Emerge From Autism?
One theory for how PDA relates to autism is that PDA may emerge from autistic traits. A 2018 review of the PDA literature by Green et. al suggested that these difficulties can best be understood through understanding of social, sensory, and cognitive sensitivities in autism spectrum disorder. Seeing how these interact with frequently occurring comorbid conditions and the social environment of the child, could explain all the symptoms seen in PDA identified children.
O’Nions and colleagues followed this up with pieces in 2018 and 2020 explaining how PDA characteristics could emerge from autism. They explain that children with autism may be more likely to have seemingly unreasonable resistance to demands that may be simple tasks to others. Difficulties with communication may make it hard for them to express why a task is challenging to them. But a range of autistic traits, from difficulty transitioning between tasks, to sensory issues that make some tasks more uncomfortable, to executive functioning challenges that make some tasks more difficult, may offer very rational reasons why autistic children may be resisting these demands. But for those identified with PDA, demands may trigger distress even when no real reason can be found.
O’Nions and Eaton explain that this could be due to a feedback cycle. When children repeatedly have to avoid demands that their caretakers put on them, in order to avoid incredibly uncomfortable, painful or difficult situations, it can create a cycle of anxiety. In this cycle the unwanted demand provokes anxiety and behavior to escape the demand. Given the heightened nervous system arousal found in autism, this distress and anxiety could be very intense and lead to responses that caregivers see as extreme or dramatic - but from the child’s perspective are reasonable given their challenges. When the demand is successfully avoided, it relieves the anxiety.
The repeated anxiety from these demands may habituate the autistic child to continue to feel demand related anxiety, even at demands that might be otherwise easy for them. And then they may continue to try to escape demands - to find that relief they experienced in the past.
Trying to control the child’s response through punishment or even reward, may just exacerbate things, because it essentially removes the child’s one way of escape from the intolerable situation - which is how they are emotionally regulating.
This certainly rings true for me, as a potential explanation. As an undiagnosed autistic child, I spent a good deal of time trying unsuccessfully to explain why certain seemingly easy tasks were brutally uncomfortable for me. I always felt my parents didn’t understand how to help me and would unintentionally put me into situations that weren’t within my capacity - situations that seemed harmless to them but were nightmarish for me. I quickly developed a sense that I had to be the one making decisions for myself, and finding ways to escape all the demands that were put on me. As an adult I find myself avoiding even the reasonable demands I put on myself. The intense anxiety these demands provoke may be reasonable in some cases, but they have grown into a monster outside of my control - something that holds me back as much as it protects me.
But still, if this is the case - should this emergent demand avoidance really be considered “just autism”? Or is it a comorbidity that might arise from autism but be better be described as its own thing? Is it possible even that it could arise out of not JUST autism, but also out of other conditions that create a similar context with many rational aversions to demands?
Could PDA Be Autistic Self-Advocacy?
A related issue, that’s important to discuss, is whether formalizing PDA into a diagnosable condition could be harmful to autistic people’s attempts at self advocacy.
Milton in 2014 and Woods in 2017 point out how PDA could be a problematic way of pathologizing autistic people’s self-advocacy. While looking at demand avoidant behaviors from the outside, they may seem irrational or pathological, but viewed from the autistic person’s internal experience, they may represent that person’s rational needs and attempts to advocate for them. For instance, it may look irrational for a child to refuse something like wearing a pair of pants. But if all the waistbands on their pants make them so uncomfortable that they can’t focus on anything else, this would be totally rational to refuse. Because the sensory, executive functioning, and social differences are so varied in autism, it may be difficult for caregivers to understand why these refusals are happening, but that doesn’t make those refusals pathological. Characterizing them this way could interfere with autistic people’s ability to self-advocate. It could even impact autistic people's view of their own refusals, leading them to seem more pathological to the autistic person themselves after being gaslit for so long that they are unreasonable.
Moore echoed these sentiments in a 2020 paper, adding that often autistic people are accused of being defiant when they are simply trying to understand the world around them. She points out that girls, who are systematically underdiagnosed with autism but more evenly identified as PDA, may be particularly vulnerable to be misunderstood and pathologized as defiant when they resist ordinary demands.
Since most studies rely on caretaker reports rather than reports from individuals with these traits, it is difficult to discern whether this is the case. Kildahl et al argue in their 2021 review that more studies need to be done to understand the perspectives of individuals with PDA to untangle these issues.
Still, online, many adults with PDA mention that much of their PDA responses feel irrational to them. They argue back that they want recognition that they have this intense threat response to demands - even to ones that they put on themselves. Some even say that the term ‘pathological’ feels like a good fit for this experience.
I resonate strongly with this feeling. While there are many things I resist because of sensory issues or other challenges, there are also times where I want to do something that I am otherwise perfectly capable of, but a pressure to do it keeps me from completing the task. Perhaps, as O’Nions suggests, this is because I have already internalized a fear of demands and a pattern of finding relief from resisting them. Either way, understanding my stress response as demand avoidance has helped me to work with its challenges much more effectively. Those of us with this response need resources for working with it – and those will only come with acknowledging that often these demands feel irrational even to us.
A balance needs to be struck between offering help to those who feel trapped by their demand avoidance, and respecting when others share that their demand avoidance is totally rational because of their atypical challenges.
Reasons to think PDA is Not Just Autism
Despite the reasons above to think that PDA traits are rooted in the autism spectrum, there are also good reasons to question this. One of the most obvious reasons is that PDA traits are found outside of the autism spectrum. Multiple studies have found individuals who meet the PDA criteria but do not meet the criteria for autism. And clinicians report finding PDA behaviors in all sorts of conditions beyond autism. Of course, it’s possible that these individuals ARE autistic and have simply been missed in the diagnostic process - as many of us are.
But the evidence doesn’t end there. Studies have also found PDA was more predicted by other factors like ADHD, anxiety, emotional instability and antagonism traits than by autism itself.
The lack of conclusive evidence supporting PDA as autism, along with the evidence suggesting that it isn’t exclusive to the autistic population, suggests that autism is not a requirement for PDA. This means the idea that PDA is always JUST autism is contradicted by our current evidence.
In 2018 and 2022, Woods points out that the evidence does not support the idea that PDA is a subset of autism, and says it is best viewed as a novel impairment category. He suggests that the social construct of PDA has taken on characteristics of autism in the last few decades due to the unfounded assumption that it is a subset of autism, and the restricted study of it within the autistic population. The fact that it has been studied as related to autism from the start may create problems with circularity that skew the research towards the autism hypothesis. Given the fact that PDA traits show up in non-autistic people, we should broaden our research to avoid confirmation bias.
Malik and Baird similarly argued in 2018 that PDA traits overlap with many conditions that are comorbid with autism - and so it is possible that PDA is related to these or that it has a separate underlying basis. Only more research - across all these populations (not just autism) will help us to disambiguate PDA’s cause and find ways to treat it. This is vitally important to PDArs and their families who continue to report these symptoms and the challenges in treating them.
Other researchers point to more behavioral explanations of PDA. For example, Gillberg a 2014 paper and Kamp-Becker et al in a 2023 review of the literature, both argue that PDA is unlikely to be a variant of autism. Rather, they suggest that it is a sort of behavioral profile. Gillberg argues that PDA could arise in response to any early symptomatic syndrome like autism, ADHD, ODD, mild intellectual disability or language disorder. Kamp-Becker says it could possibly arise due to illness and unfavorable outcomes from the caregivers approach.
Their views are similar to O’Nions view of how PDA could emerge from autism, but suggest that it could emerge in a variety of contexts in addition to autism.
So we can see that the research doesn’t really quite line up with the view that PDA is always JUST autism. Instead, most researchers seem to be suggesting a more nuanced view, that PDA could emerge from autism or other conditions alone, or from autism in combination with other conditions or factors.
If that’s the case… What co-occuring conditions or factors could this behavioral profile emerge from? We’ll look at this question in part 4 “What Causes PDA and How Should We Treat It?”
This article is the third in a series investigating the science behind PDA. You can find Part 4 “What Causes PDA and How Should We Treat It? ” here.
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