A DRAFT OF THE PATHOLOGICAL DEMAND AVOIDANCE – BALANCED LITERATURE TOOL (PDA-BLT).

A DRAFT OF THE PATHOLOGICAL DEMAND AVOIDANCE – BALANCED LITERATURE TOOL (PDA-BLT).

Introduction.

This is a quick blogpost to introduce a draft of a tool to screen PDA literature with, which assesses how balanced an overview to PDA has been adopted in the article/book chapter/ book/ report etc. I detail the rationale and development of the draft tool in a pdf. The PDA-BLT should be used to assess PDA literature as part of its quality appraisal. I have also included other pdfs of my recent reflections on PDA. Before I introduce you to the PDFs, below is my latest diagram, on the Gaussian curve of estimated PDA population at different population thresholds (please do not reify it).

PDFs of my recent twitter musings on PDA.

II have updated the pdf containing the thread on the rationale to justify the PDA-BLT, in the “Oddities with creating PDA is an ASD research agenda in 2011” pdf. Mainly because it has become clear just how inappropriate an act it has been to pursue PDA as an autism subtype/ subgroup/ profile/ disorder. Please see the the 7 pdfs below.

Table 1: Pathological Demand Avoidance – Balanced Literature Tool (PDA-BLT).

Number.Item.Yes.No.Cannot tell.Comments.
1Newson created her own diagnostic grouping Pervasive Developmental Coding Disorders, and PDA was originally one of these.    
2Newson viewed PDA to not be an Autism Spectrum Disorder (Profile/ Subgroup/ Subtype).    
3Newson’s cohort included non-autistic children, young persons, and adults.    
4Not all of Newson’s eight PDA traits were required for a PDA diagnosis.    
5Newson’s research did not establish the validity of PDA as a separate Disorder (Syndrome).    
6PDA was a distinct Autism Spectrum Disorder (Profile/Subgroup/ Subtype).    
7PDA maybe a female Autism Spectrum Disorder (Profile/Subgroup/ Subtype).    
8PDA may share some key features with autism, e.g., PDA having social interaction issues and restricted and repetitive behaviours and interests (RRBIs).    
9PDA maybe a form of Attachment Disorder/ Personality Disorder.    
10PDA may not be caused by autism (PDA might be a “double-hit”).    
11PDA has little to no Theory of Mind deficits.    
12PDA does not conform to accepted (conventional/ traditional) autism understandings.    
13PDA has obsessive demand avoidance, which seems to be driven by high anxiety.    
14Anxiety is co-occurring difficulty to autism.    
15Children, young persons, and adults can transition into PDA throughout their lifespan.    
16Features of PDA can be found throughout the entire autistic population (are present in all autism subtypes).    
17PDA might contain features of non-autism constructs, like Attention Deficit Hyperactivity Disorder/ Oppositional Defiant Disorder/ Social Anxiety Disorders.    
18PDA may have autistic-like traits/autism, conduct problems and anxiety, i.e., a “triple-hit”.    
19Children, young persons, and adults with PDA may have precursors for Schizotypal Disorder.    
20Children, young persons, and adults with PDA may have had comorbid developmental and psychiatric problems, e.g., a “double-hit” of autism and conduct problems.    
21PDA has no feature that is specific to it.    
22PDA is not Disorder (Syndrome).    
23PDA is clinically useful.    
24PDA is not clinically useful.    
25PDA as a diagnostic entity (Disorder/ Profile/ Syndrome) is controversial.    
26The “pathological” descriptor is controversial.    
27Some PDA features are difficult to reliably measure, e.g., “has a sense of right or wrong”.    
28PDA may have different educational strategies compared to traditional autism strategies.    
29There is lack of evidence of differential treatment between autism subtypes.    
30There is a lack of significant differences between autism subtypes.    
31Autism subtypes were removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) to reduce stigma, for all autistic persons.    

This is only a draft version of the PDA-BLT, the wording might be changed slightly in the future for ease of wording and to avoid any statement being ambiguous. Some items might be folded in, or removed, and possibly added as part of further reflection on the tool. I have updated it to add a valid comment from Garralda (2003), that some PDA features are difficult to reliably measure. I have subsequently further enhanced the literature review and added four more questions to the PDA-BLT. I would welcome feedback on PDA-BLT.

References.

Garralda, E. (2003). Pathological demand avoidance syndrome or psychiatric disorder? (Online only article). Archives of Disease in Childhood. Retrieved from: https://adc.bmj.com/content/88/7/595.responses (Accessed 22 May 2021).

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3 Comments

  1. Thank you for your work and focus. You are providing for me insight into autism which helps me connect dots and validates co-existing/complex issues across diagnostic categories. I have been involved with programs which have been cross categorical and been around long enough to provide services before the categories/diagnosis where introduced. Key to facilitating student success was to listen so the student is heard and actively problem solve with the student being part of the designed solution which often would make it better for other students in the process. The main focus was to provide a safe space which meant student input for problem solving.

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  2. Hi Richard,

    My name is Charlie and I am an undergrad psychology student. I have been researching PDA lately, out of curiousity. Also… Whether you believe it or not, I have this disorder myself. From my experience with it, I am absolutely, 100% certain that PDA exists and as it’s own individual phenotype. Please email me back so we can discuss PDA further. You are one of the only people I have found in the literature who takes this issue seriously and is willing to spend time researching it. I want to discuss your very interesting theories on this ‘disorder’ with someone (me) who has it themselves. And believe me when I say this does exist and that I do in fact have it. I myself spend almost every waking moment of each day struggling in an exhausting battle with my symptoms. PDA NEEDS the professional recognition that it deserves, less the individuals with it, their families, teachers, etc., will continue to struggle.

    Regards,

    Charlie.

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    1. Thank you for your comment, and I appreciate the time and effort spent writing the comment.

      I do think there are a few things which need to be clarified.

      I having nothing against anyone identifying with PDA, it is however, in my view unwise to be emotionally attached to PDA, it seems like a good way to get hurt. The reasons for this is that there is no consensus over what PDA is, and due to the lack of evidence, anyone can pretty much treat PDA (anyone strongly identifying with it) as they wish to. Divergent opinions on PDA also await direct empirical testing, it is likely that how PDA is currently viewed by some persons, is not how PDA will probably be viewed in 5/ 10/ 20 years time (i.e., PDA is not a form of autism).

      There is a general misconception that “I do not believe in PDA”. I accept that there is a huge diversity of opinions on PDA, and that it can present in a many varied ways. I view PDA to be a broad spectrum/ continuum/ manifold way of being (Disorder). So at one end you have “Extreme/ Pervasive Demand Avoidance” through to Demand-avoidance which is only seen in certain contexts like schools.

      I think the case that PDA is not clinically needed is valid. Yet, I fully support the view that those identifying with PDA should have their “needs” recognised and supported. This can be done without diagnosing/ accepting PDA as a distinct entity. I mainly advocate for PDA to be Disorder as it seems some persons will always diagnose PDA, irrespective of what anyone else will say.

      My position on PDA is nuanced, and so it can be difficult for someone to appreciate and understand it. I do “believe in PDA”, just not everything said about “PDA is an ASD” outlook of PDA. As I said previously, for me PDA should be substantially broader than that.

      I discuss my views on PDA here:
      https://threadreaderapp.com/thread/1426442753538465794.html

      If you wish to contact me, my email address is richardwoodsautism@gmail.com

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