Pathological demand avoidance in children and adolescents: A systematic review

 Abstract:

"Requests for pathological demand avoidance diagnoses have increased over recent years but pathological demand avoidance remains a controversial issue. We undertook a systematic review of peer-reviewed studies of pathological demand avoidance, using standardised appraisal and synthesis methods, to assess how pathological demand avoidance is identified and to explore the relationships between pathological demand avoidance, autism and other developmental/psychiatric disorders. A search of PsycINFO/PubMed/MEDLINE/Embase identified 13 studies meeting inclusion criteria. Narrative synthesis was chosen due to methodological heterogeneity of the identified studies. Autistic children/adolescents constituted the majority of participants in most studies. Most studies provided clearly defined inclusion criteria together with adequate descriptions of participants and study settings. Almost all studies relied on the parental report of pathological demand avoidance symptoms/diagnosis. Identification of pathological demand avoidance in all studies seemed to be, directly or indirectly, based on the criteria developed by Newson et al. While eight studies used objective criteria for the identification of pathological demand avoidance, the measures used have methodological limitations. Though associations with anxiety have been reported, few studies took account of possible relationships between pathological demand avoidance and other conditions, such as anxiety. Methodological limitations restrict current conclusions regarding the uniformity or stability of the constellation of behaviours associated with pathological demand avoidance or the characteristics of individuals displaying them. Clinical implications of current research are discussed."

Full open-access article can be viewed here. 

Autism and Neurodiversity in the Classroom Facebook post about PDA and ODD

"Oppositional Defiance Disorder and Pathological Demand Avoidance need to go in the trash.

Labeling someone ODD or PDA is a fancy way of saying "calm down," or "know your place." 

Refusing to put up with being oppressed, ignored, or abused is not pathological. It's survival.

Edit to summarize:

I absolutely believe that the experience/characteristics/symptoms of PDA are real and valid. In fact, I could probably tick a lot of boxes for both of my children. 

I do not believe that the label is at all helpful to the autistic community at large as it serves to further separate "those autistics" from "these other autistics." 

I'm seeing a missed opportunity to use what is being learned about the PDA profile to further support ALL autistic people."

Full thread can be found here. 

Questioning The Pathological Part Of PDA: A Talk With Dr. Deborah Budding by Shannon Rosa

"What exactly is PDA, or Pathological Demand Avoidance? How can we have conversations that are useful to people who identify with PDA, and that mesh with their experiences and support needs? We talked with Dr. Deborah Budding, an assessing neuropsychologist who specializes in sensorimotor and other underpinnings of neurodevelopmental and psychiatric conditions, and who has PDA conversations with clients and professionals alike."

Full interview here

PDA Has No Place in Neurodiversity by Ira Eidle

Originally posted on Tumblr.

Something you’re likely to come across in online autistic self-advocacy spaces is PDA-otherwise known as pathological demand avoidance, or to some, pervasive demand for autonomy. This is not a new idea-in fact, it has been present in the field of psychology since at least the 1980s, before the neurodiversity movement began in earnest. You can see discussion of PDA in autistic spaces from the late 90s-including skepticism of the idea. It is not an official diagnosis listed in the DSM or the ICD. Some people want it to be. It is considered by some to be part of the autism diagnosis, much like PDD-NOS and Asperger’s, which used to be separate diagnoses in the DSM-IV. I’m unsure whether these advocates wish for PDA to be like that or for it to appear under autism. I think either way, it is not a good idea. There are several reasons why I am against the idea of PDA. I think the condition itself is too broad and more importantly, I am afraid of the implications behind it.

The way I see PDA described leaves open a lot of room for interpretation. This could lead to an overdiagnosis (or false diagnosis altogether), though that’s not so much of a concern of mine as it is that there are many reasons why someone may refuse demands or ignore obligations. It could be as simple as executive dysfunction-which I believe is diagnostic criteria for autism and ADHD. People describe PDA as extreme anxiety someone feels when given a task to complete. Again, there are several possible explanations for this behavior-simply chalking it up to “PDA” doesn’t really tell you much. Ok, someone tends to avoid demands-perhaps to a disabling degree-but I feel like the reason for that goes much deeper than just calling it PDA. A lot of things I do probably qualify as PDA to those who believe in it. I have a harder time than most staying on task or starting something I have to do. Also, no, framing it as a “pervasive demand for autonomy” does not change anything. If I don’t want to do something I’m asked to do, it’s definitely not because I only ever do things I want to do. It can sometimes mean that, but it still hardly qualifies as “PDA”. So this leads me to my next point, the implications of PDA.

There are two main concerns I have with the implications behind a PDA diagnosis or label. Not only do I think it’s not specific enough, I am worried about how people use it as an excuse for genuinely shitty behavior. While this does happen with a number of disabilities, including autism, the broadness of PDA, as I previously described, only accentuates this. I’ve already seen it happen. I’ve seen somebody accuse people for their “PDA acting up” simply for not addressing an issue to their satisfaction. That leads me to the second issue-how staff could (and likely already do) use it against people in their care. Pathologization already leads to this in institutional settings. If, hypothetically, someone with a diagnosis of PDA doesn’t stick to their behavior plan, or generally just doesn’t follow directions, the staff could just shrug it off as PDA instead of thinking more critically about the actual cause of their behavior. Alternatively, they could use that against them. This is far from an unrealistic expectation. This already happens with other disabilities. This would just make it worse. Calling it a “pervasive demand for autonomy” would yield the same result. This is also the issue with Cluster B Personality Disorders, which are actual diagnoses. The psychiatric system exists to pathologize and strip people of their self-determination. This isn’t to say the entire DSM is invalid-just that there's a severe power imbalance at play here.

There are traits that are distinctively neurodivergent. Even then, just chalking behaviors up to diagnosis is unhelpful. However, there’s enough evidence that a neurodivergent brain works differently from a neurotypical brain to justify calling it autism, ADHD, tourettes, etc. PDA is not that. It reeks of Asperger’s and PDD-NOS. I thought we were done using Asperger’s? Apparently the only reason why many people don’t like Asperger’s is simply because of Hans Asperger possibly being a nazi and not for the actual issue with it-which was the false sense of hierarchy and separatism that came with it. Supporting the use of PDA is proof of that.

Pathological demand avoidance: What and who are being pathologised and in whose interests? By Allison Moore

Abstract:

"The term ‘pathological demand avoidance’ was first coined in 1983. In recent years, diagnostic tools have emerged to enable practitioners to identify, name and treat pathological demand avoidance and, at least in the United Kingdom, there is an increasing number of children who attract this label. In addition to what are defined as the core ‘deficits’ of autism, including assumed difficulties in social communication, difficulties in social interaction and restrictive interests, children with pathological demand avoidance are thought to have an extreme anxiety-driven need to control their environment and control the demands and expectations of others. This article will argue that we must exercise extreme caution in accepting the validity of pathological demand avoidance and will suggest that it can be seen as an attempt to psychiatarise autistic children’s resistance, which, in so doing, restricts their agency. First, it will draw on the arguments put forward by some autistic scholars who have claimed that pathological demand avoidance is better understood as rational demand avoidance – an understandable and rational response to the circumstances that one finds oneself in. Second, it will consider the intersection between autism and childhood. When one of the defining characteristics of pathological demand avoidance is an inability to recognise and, presumably, respect social hierarchy, children’s competencies as social actors and active meaning makers of their world can easily become pathologised as defiance. Finally, the article will address the intersections of autism, childhood and gender. Girls are much less likely to be diagnosed as having an autism spectrum condition than boys are, with a ratio traditionally estimated at approximately 1:4. However, pathological demand avoidance diagnoses are fairly evenly spread between boys and girls. It will be argued that it is girls’ resistance to the ordinary and everyday demands of her as a girl and her subsequent rejection or transgression of those expectations that is being pathologised"

Full article available here.