Thread by @Richard_Autism

Jonathan Green's response to Gillberg et al (2024) has also been published. Among other things, it calls for a transactional approach to PDA & transdiagnostic approach to PDA research.
thelancet.com/journals/lanch…

Gillberg et al (2024b) response article seems relatively well balanced. Recognises points both Jonathan Green & I make, while arguing for their proposed PDA research agenda. Key point is importance of external observer value judgement about nature of PDA though!

Gillberg et al (2024b) calls for further research across stakeholders, moving away from mainly caregiver report. Which I agree with, e.g., see below:
frontiersin.org/research-topic…

"Our considerable clinical experience with EDA or PDA has shown us that it refers to cases of children who have very low tolerance to demands or demands that are not proportionate to the reactions, protests, or behaviours of the child (at least not to an external observer)."

"We also agree with Richard Woods that it remains to be seen if EDA or PDA will fit into future psychiatric diagnostic systems, and whether it is desirable at all to retain it as a unitary condition."
Gillberg et al (2024b).

"What we already know is that situations that lead up to what we describe as EDA or PDA phenomena represent a severe burden to parents, and that it is likely that it is also a very considerable burden for the children, and for people interacting with the affected family"

Previous quote is from Gillberg et al (2024b). Which is a sentiment I share in my article.

"I share their concern about the difficulties, which can be extreme in nature, of children, young people, and adults attributed with demand avoidance phenomena and their families’ experience, and that these individuals need to be appropriately supported."
Woods (2024).

Reason for mentioning this, is that both pro PDA advocates & PDA critics recognise the difficulties & pressures faced by the difficulties experienced by PDAers & their families.

Highlighted blue text is this Gillberg et al 2024b quote:

"We also agree with Richard Woods that it remains to be seen if EDA or PDA will fit into future psychiatric diagnostic systems, and whether it is desirable at all to retain it as a unitary condition."

I am running off to the hills with that quote (metaphorically)...

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Thank you in advance!

https://x.com/PaulWhiteleyPhD/status/1837044522041102457

Reflecting further on Green & Gillberg et al letters. It is clear that it is a choice how one models PDA & approaches it in practice (which is something I said before).

Below image shows Gillberg et al 2024 view PDA should be modelled as a within person phenomena.

I have issues over this, there is obviously a sampling bias, on basing this definition on their own clinical opinion, considering general disagreement over what PDA is.

"...clinical experience with EDA or PDA has shown us that it refers to cases of children who have very low tolerance to demands or demands that are not proportionate to the reactions, protests, or behaviours of the child (at least not to an external observer)."

They are saying we should define PDA by external observers value judgements. It ignores how responses might be reasonable from PDAers perception, & that the demands might be unreasonable from PDAers perception.

"This definition would mean that to better understand what EDA or PDA is all about, future research that uses a within-child approach would be as important as a focus on the environment and what it might be in a particular context that triggers the EDA or PDA behaviours."
Gillberg et al (2024).

This is frankly nonsense, & a within person approach to is unnecessary from this perspective. Green calls for modelling & research to investigate which research are triggers for PDA. If one is using PDA strategies, they should be considering demands are triggering anyway.

As Jonathan Green points out in their article, that transactional based approaches should already be used with Autistic anyway. It is a point which was made in 2018 by Green et al (2018b).

There's a growing recognition within autism research & practice of transactional aspects of Autistic features & behaviours being expressed at any one given moment. If one Low Arousal based strategies, one will be automatically which stimulii demands are triggering to PDAers.

This matters as, why should we only view demand-avoidance to be within the child, when it is likely to be a general transactional process in PDA vs non-PDAers (I do not recognise the proposed split on that)?

This matters considering the broader issues faced by the Autistic population, & their families face, e.g., see all the parent blame problems Autistic mothers face! So only PDAers demand-avoidance should be viewed as within person?!?

Here is the point, it is a choice to define PDA by value judgements, &/ or locate it within the person. If one does that, they are constructing PDA into a that!

There are obvious ethical issues, if one choosing to define PDA as a singular within person phenomena; when there is no guarantee research will indicate PDA is that. Or PDA will be accepted into diagnostic systems. Or desirable to view it as such.

This much?!?
tandfonline.com/doi/full/10.10…

I done.

@threadreaderapp please unroll.

Thank you in advance.

Reflecting on this more, especially how transactional nature of features & behaviour presentation in Autistics is increasingly being recognised in research & practice. It is really a step backwards to locate demand-avoidance within-person, as proposed by Gillberg et al (2024b).

Worth mentioning that "Profound Autism" is critiqued for representing a step backwards too...

"Our... clinical experience... PDA has shown us that it refers to cases of children who have very low tolerance to demands or demands that are not proportionate to the reactions, protests, or behaviours of the child (at least not to an external observer)."
Gillberg et al 2024b

"...know is that situations that lead up to what we describe as EDA or PDA phenomena represent a severe burden to parents, and that it is likely that it is also a very considerable burden for the children, and for people interacting with the affected family."
Gillberg et al 2024b

I am mentioning above 2 quotes to note significance of the case for further PDA research, & modelling PDA as a within-person phenomena is routed into its impact of PDA on others (Yes, Gillberg et al 2024b acknowledge impact on PDAers too).

Why is the impact of PDA on other people important? A claimed justification for "Profound Autism" is its impact on caregivers, other people, mainly due "high support needs".

Perhaps, just perhaps, there is may possibly be a small iota of accuracy in the below diagram comparing how "Profound autism" & "PDA Profile of ASD" are often modelled (understated hyperbole).

Sometimes it is feels good to have one's work seem to be "vindicated". Other times, like this it is exasperating!

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Thank you in advance.

Reflecting on a piece from Green (2024). Specifically this bit talking about defining & measuring PDA as a transactional process within a person.

"Studies would thus need operational criteria for PDA based on observed and reported patterns of reactive and resistant behaviours in context. Sampling with such criteria could then investigate the child characteristics involved,..."

"...including developmental factors and co-occurring conditions (of which anxiety is very common), as well as those of the co-occurring environments and the dynamics between them."
Green (2024).

Why am I mentioning it?

"Like anything else in the social sciences, it depends on how defines & measures it."...

If one wishes to appropriately test transactional models of PDA, then one should be defining PDA as a transactional process; this then feeds through into methodology, results interpretation etc. I.e., it biases the research produced.

However, that also means that if one is defining & measuring PDA as a "Profile of ASD", it then biases PDA research which adopts such an outlook.

Crucially, it means that in order to appropriately test specific hypotheses, one needs to define & test for PDA along the lines of that hypothesis. So defining PDA as "Profile of ASD", & testing it as such, is not necessarily going to answer hypotheses, like seen in Green (2018).

"Within this I would include the notion of equifinality; that PDA-type patterns of interaction are likely the final common pathway for a variety of child vulnerabilities and environmental conditions, rather than one developmental entity."
Green )2024).

Worth pointing out, that transactional models for PDA, predict that people can transition into PDA, pretty much any time in their life; i.e., it is not inherently developmental in nature.

"Transactional perspectives further suggest that the behaviours described as PDA may develop gradually (Orm et al., 2019) or appear in circumscribed settings (such as school) prior to becoming more generalised..."

"...In such cases, conceptualising PDA as a categorical phenomenon (i.e. a formal diagnosis which one either has or not) may be counterproductive to its early detection and prevention."
Kildahl et al 2021, p12.

Highlighted blue text in below image is from Kildahl et al (2021, p12).

It discusses transactional accounts mean people may develop into PDA gradually. It goes on to say conceptualisating PDA as a distinct category, might be counterproductive.

One of my own critiques of "PDA Profile of ASD" accounts is that its social communication issues, Can be explained as the result of social avoidance behaviours negatively effecting quantity &/ or quality of social interactions, thus leading to social communication "deficits".

See the below transactional developmental model for PDA's demand-avoidance traits below.

I should point, how Jonathan Green, & myself view transactional models of PDA as a transactional proces in people. While different to locating PDA as a purely within-person condition, still views PDA as a form of neurodiversity; processes can be "things", e.g., OCD.

Some of my critics might wish to note the above tweet, before getting irate at me again!

Talking about transactional models for PDA is relevant due to showing the relevance of the outlook & providing specific predictions, which can be tested.

Bringing back to reason for extending this thread.

So if one wishes to suitably test PDA hypotheses, they likely need to define & measure PDA in a way conforming to the hypothesis.

E.g., PDA is a form of Attachment Disorder. The one likely should be defining & measuring PDA as a form of Attachment Disorder.

For instance, can one appropriately test PDA as a form of Attachment Disorder, if they view it to not be caused by trauma? If one is does not diagnose PDA in CYP with attachment difficulties?!?

I think I am done this time.

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Thank you in advance.