@judehea I have quite clear views on how I think PDA should be viewed. I have an essay on this submitted, awaiting to receive feedback.
@judehea The issue is that no-one can really be sure of what looks like, & thus exactly what it is. I try to give a comprehensive over view on the topic, from different outlooks. While also being clear that PDA is blatantly not an ASD.
@judehea Recent systematic review.
“Problems concerning definition and measurement in the reviewed studies currently limit any conclusions regarding the uniformity or stability of the behaviours described, or the characteristics of individuals displaying them.” (p1).
@judehea “evidence that PDA is either a separate disorder or constitutes a stable subtype or trait in autistic individuals is currently lacking.” (Kildahl et al 2021, p12).
@judehea This is compounded by small evidence base, general lack of consideration of alternative explanations in PDA research, & other issues like testing assumptions; PDA is meant to be anxiety-based, but hardly any anxiety specific tools used in its research.
@judehea Despite this
Researched PDA via their autism understandings (O’Nions et al 2016b).
“interest in the concept of PDA largely centres on the UK, it is at present a culture-bound concept” (O’Nions et al 2020, p398).
@judehea UK PDA interest has risen sharply over last 10 years & it way outstrips its research base (O’Nions & Eaton 2021).
Due to campaigning efforts persons can be on the look-out for PDA & is a potential source of bias (Woods 2020).
@judehea The potential bias from campaigning for PDA as an ASD is that bad, someone recently (mistakenly) said this about me:
“Richard does not believe in PDA but chooses to chase a trauma model.”
@judehea That quote is symptomatic of what appears to be pervasive bias on the topic. Seemingly high risk of bias in snowball sampling was enough for me to be advised not to use snowball sampling in my PhD...
@judehea The most fundamental issue is that how PDA has been pursued over last decade is unethical & unscientific, it has largely been about validating the single perspective PDA is an ASD.
@judehea I am approaching PDA from "typical" research norms; good quality inclusive scientific-method based, theory, research & practice.
@judehea 4 schools of thought on PDA.

Common mental health disorder (Gillberg 2014).
Rare autism subtype (Christie 2007).
Rebranded autism (Milton 2017).
Symptoms from interaction between autism & co-occurring conditions (Green et al 2018)..
@judehea Which I detail how they evolved in the literature below:
@judehea Even with these different schools of thought there are variations of it. So it debated if PDA is a form of attachment disorder, or a personality disorder.
@judehea 5 Different Behaviour Profiles.

Newson et al (2003).
O’Nions et al (2016a).
Green et al (2018).
Eaton et al (2018).
Woods (2019).
@judehea Which is why I aggregated them together here:
@judehea Then to cap off the uncertainty on the topic, there are several different diagnostic thresholds on PDA, & there is substantial variation across the threshold for PDA in the literature.
@judehea One of the reasons why I am the leading autistic expert on PDA, is that not arrogant enough to assume that only one narrow perspective on PDA is valid; i.e., it is rare autism subtype, has to look a certain way.
@judehea I try to an inclusive approach to PDA that accommodates as many different valid outlooks on PDA as possible.
@judehea So in my view the only school of thought on PDA which is not valid, is that it is a rare autism subtype/ profile/ subgroup/ disorder. I can go into great detail on why there is a strong & valid case for this position.
@judehea So I think that PDA can be viewed as a pseudo syndrome, a collections of symptoms resulting from interaction of autism & various co-occurring conditions. I.e, PDA features can be explained by accepted constructs.
@judehea Inherently PDA seems to pathologise features not associated with autism, which explains why results are indicating it is different from autism, as Newson's view that PDA is separate & independent from autism seem valid.
@judehea This makes sense as PDA is meant to be an anxiety based construct, & yet it is widely accepted that anxiety is not core feature of autism, but a co-occurring difficulty. PDA seems an independent clustering of features.
@judehea I think PDA is most likely a new type of Disorder.
@judehea I think PDA should (even only temporarily) be placed within OCD and Related Disorders diagnostic grouping.
@judehea I am interested in the demand-avoidance. Not demand-avoidance plus developmental features, not demand-avoidance plus developmental features plus social communication issues.
@judehea There are many good reasons to only focus on the demand-avoidance aspects of PDA.
@judehea This is from an email I sent with someone this week.

"I am also not specifically looking at PDA’s developmental traits. There are good reasons to discard them from the PDA profile.
@judehea The definition for Disorder in the DSM-5 does not require it to be “Developmental”, or “Pervasive” in nature. Neurological Involvement trait awaits systematic research into its links with PDA. Passive Early history seems not to cluster with other PDA traits.
@judehea The PDA developmental traits are generic, and O’Nions (2016) removed them from the profile for being too common in the autistic population. There is a general approach to reduce number of PDA traits down to those essential for a diagnosis.
@judehea The most used PDA tools with CYP either do not measure developmental features or are not required to meet threshold. Multiple PDA authors have presented the PDA behaviour profile lacking the developmental features.
@judehea Under transactional perspectives a person can transition into PDA. There are clinical accounts of persons transition into PDA.
@judehea I am focusing on the core PDA traits, which are linked to the generic negative feedback cycle that seems to develop and maintain PDA features.
@judehea Based on some of O'Nions PDA research, the OCD cycle, broader mental health literature & expert opinion. I created the Demand Management Cycle.
@judehea The Demand Management Cycle seems to underpin the development & maintenance of PDA features. Also reflects how the avoidance features can become "hot-wired", and generalise.
@judehea It is through focusing on the demand-avoidance of PDA, fundamentally taking a transactional outlook which views to be a PDA process, not a collection of "deficits" that are located in the person, why I think PDA should go in OCD & Related Disorders.
@judehea At the same time, I also acknowledge there is likely a good case PDA can go into & disruptive, impulse-control, & conduct disorders.
@judehea My own view, is that PDA seems to be intrinsically about stress management. E.g, this image from PDA Society.
@judehea I need to be clear, I accept that some think PDA is from early infancy, and is pervasive in nature. For me that represents a tiny window of what PDA probably looks like.
@judehea If one views PDA to be a Disorder. The demand-avoidance should become "pathological" at a "non-pervasive" level, so around the EDA-Q, with it presenting in a single context, such as school.
@judehea PDA presents as a continuum in human population.
Fluid & transient over lifespan & diverse situations.
"the disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.“ (APA 2013, p21).
@judehea “…start to display avoidant behaviour and challenging behaviour in response to a particular stressor…” (Eaton 2018, p20).
Around EDA-Q threshold and/ or “problematic demand avoidance” (O’Nions et al 2018b).
@judehea If one accepts the clinical arguments for PDA, then most/ all of them are applicable to PDA in non-autistic persons and to lower diagnostic thresholds.
@judehea There does appear to be many studies with non-autistic persons with PDA in, includes Newsons cohort. Many experts saying PDA is seen in non-autistic persons.
@judehea This gets back to my point, I am not arrogant enough to think that only a narrow outlook (PDA is an ASD) which contradicts established understandings on Disorders & autism is the only valid way to view PDA.
@judehea I respect others opinions and research results that indicate PDA is seen in non-autistic persons, just as much as I accept that Help4Psychology are seeing a particularly narrow version of PDA.
@judehea This is my point, I am trying to take an inclusive approach to it.
@judehea While I think most of the arguments for clinical need for PDA have merit. I also think that two main reasons for PDA being not clinically needed are valid.
@judehea Which is that PDA features can be found in accepted constructs, & PDA can be modelled as a pseudo-syndrome. That PDA strategies, or equivalent approaches are widely practiced independently of PDA.
@judehea Actually the case for PDA being a pseudo-syndrome makes sense as strategies/ treatments, tend to be issues/ symptom specific, not diagnoses/ syndrome specific.
@judehea I only argue that PDA should be diagnosed as a Disorder because I think some persons (mainly those who view PDA to be an ASD) are going to diagnose PDA irrespective of divergent opinion. I am trying to be pragmatic about it.
@judehea Just because PDA overlaps many accepted constructs, it does not prevent it being it's own distinct "thing". Most Disorders in DSM-5 overlap other Disorders in there.
@judehea What PDA cannot be, is something it is more than. Basic logic, so A + B + C ≠ A, e.g., PDA cannot be a form of autism.
@judehea In short, I think PDA can be diagnosed, & at a much lower threshold than some would advocate. Although, I think overall we should be treating PDA with extreme caution, only diagnosing it rarely due to uncertainty over it.
@judehea I also think PDA is being used to control the autistic population, & broader autism community, I will be talking more about this at a PARC event in October. I suspect this is out of scope of your questions.
@judehea Have I answered your questions? Do you have any other questions?
@judehea Actually I need to point out, that if one views PDA to be about stress management, logically its etiology is trauma &/ or aversive childhood experiences.
@judehea @threadreaderapp please could you unroll?

Thank you in advance.

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More from @Richard_Autism

14 Aug
@sallycatPDA @cassie_davies @DrJudes03 @Help4Psychology @Autism @PDASociety @autresearchuk Interesting question. I would point out surely you are contradicting yourself, considering you view PDA to be an ASD, so by your own logic "pathological" demand avoidance is autistic demand avoidance...

Which is not a position I would readily accept.
@sallycatPDA @cassie_davies @DrJudes03 @Help4Psychology @Autism @PDASociety @autresearchuk Considering the lack of evidence & ongoing debate over PDA, how PDA features are generic & the seemingly pervasive bias seen in the PDA community (which seems to ignore divergent opinion & how PDA is seen in non-autistic persons).
@sallycatPDA @cassie_davies @DrJudes03 @Help4Psychology @Autism @PDASociety @autresearchuk What is it exactly that you and others think you have identified with?
Read 12 tweets
11 Aug
I really dislike listing out ethical issues with PDA, pointing out what it should be doing. Where autism research & practice is. Where PDA research & practice is. It is rather depressing.
Example: I simply should not be able to write this:
I have a COI for advocating for DAP to be a common Disorder.
Clearly those advocating for DAP to be a form of autism have a COI.
E.g., Francesca Happé was committee that set DSM-5 autism criteria (Happé 2011).
Is aware that all attempts to autism have failed (Happé 2011; Fletcher-Waton & Happé 2019; Happé & Frith 2020).
Read 4 tweets
3 Aug
That moment when you realise just how dogmatic & pervasive a worldview must be to endlessly pathologise different characteristics of autistic persons. You could probably say it is a pathological tendency (irony is not lost on me).
The sheer ceaselessness of it (habit of pathologising any features seen in autistic persons), is highly disconcerting when you stop to think about it, & its implications. It is used to justify all sorts of poor standards & treatment towards us.
It makes me even more annoyed at the arrogance of "PDA is an ASD" supporters assuming PDA is an ASD due to potential similarities in behaviour presentations. Also that autism understandings will evolve to encompass PDA. Who the hell do they think they are?!?!
Read 4 tweets
31 Jul
@DrJudes03 @DrJoelSchwartz @PDASociety It is perfectly reasonable when
1) Help4Psychology produce an algorithm that is not representative of broader literature. E.g. see:
@DrJudes03 @DrJoelSchwartz @PDASociety 2) Goes against Christie's views to reduce number of PDA traits.

"refine our understanding of the essential criteria and the core difficulty with social identity" Christie, 2016, s60.
@DrJudes03 @DrJoelSchwartz @PDASociety From O'Nions and Eaton, 2021, p413. There are more traits there, than in most PDA behaviour profiles.
Read 28 tweets
28 Jul
@ndhumanoid I am unsure it is necessarily twaddle. Those who identify/ or are diagnosed with PDA often do experience substantial issues around stress caused by aversive demands & do need be supported.
@ndhumanoid Simply because the evidence base is small & poor quality does not mean it is "twaddle". It does mean anyone advocating for PDA needs to making claims in line with the current evidence base, & update their practice to reflect evidence base.
@ndhumanoid I.e., stop claiming PDA is anything specific to autism, and start being more inclusive about PDA with non-autistic persons. Or at least what I would do.

The results should be seen as a warning to those who have built a career on notion "PDA is an ASD".
Read 29 tweets
24 Jul
@KatyBenson20 @PughJoanne ADHD does have social communication issues, often receiving social communication interventions. Also strong case ADHD should be moved into disruptive, impulse-control, & conduct disorders. It was not due to some research (I am unaware of exact details).
@KatyBenson20 @PughJoanne Persons most likely to have ODD & Conduct Disorder are those with ADHD (From my understanding).
@KatyBenson20 @PughJoanne Also ODD & Conduct Disorder also often have social communication issues & receive interventions for that. PDA maybe social communication issues really is no excuse for it to remain in autism.
Read 28 tweets

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