I know I am late to party on this paper @DrMBotha. Currently, & reflecting upon it. Already seeing parallels with it, and my own experiences & observations of engaging with PDA literature & agenda to make "PDA an ASD". frontiersin.org/articles/10.33…
There are parallel processes operating in similar/ same manner to what Monique describes in the paper. First off, there is lack of consideration of it divergent opinions on PDA are welcome or actively embraced.
I know from past experience, of myself & other dissenting voices we tend to be ignored, by "PDA as an ASD" leading experts, while attacked, or excuses made to not take our points credibly.
We know generally that divergent opinion is often not referenced, or even pertinent information is mentioned, let discussed in the PDA literature. E.g., check how often Elena Garralda's article is referenced by Christie/ O'Nions, i.e., ZERO times.
Another example is @HappeLab not discussing issues dividing autism in their (co-authored) PDA articles, despite them often frequently viewing PDA as a form of autism. Yes, there is a conflict of interest in Happe not discussing this.
It is highly telling that ongoing debates about autism, and how diagnose it, i.e., return to subtypes/ transdiagnostic processes, and broader debates around utility of disorders are largely absent from much of PDA discourse.
I accept that PDA to some extent can be helpful to some autistic persons, & their caregivers. I think it would be foolish to argue against that. That is not an excuse for failing to critically reflect upon what PDA is or to sideline divergent opinions on PDA.
For instance if PDA is likely to help some autistic persons, by explaining certain clustering of features, better than autism does; then it is also likely benefit non-autistic persons by better explaining certain clustering of features.
The last point is important, as "PDA as an ASD" supporters seem to relying on their experience, & perception as justification for lack of critically engaging with nonsensical notion PDA is an ASD.
One of the comments I have had against me, is that as there are thousands of persons in online social media groups who view PDA as an ASD, this is evidence that is a form of autism.
Simple rebuttal to is that there are thousands of persons who think the world is flat, or believe that vaccines causes autism.
Obviously anyone who challenges the notion of "PDA as an ASD" is attacked/ challenged by proponents "PDA as an ASD".
I am going to stop & reflect more upon @DrMBotha paper. As it is likely to be important to my talk to the PARC event on the 19th of October, "Demand-Avoidance Phenomena: as a biopower identity".
Just need to make one final point though.
I strongly urge those engaging with PDA to reflect upon how their values, & perceptions shape their understandings & perception of PDA.
P.S. I can show that PDA has been changed to conform to autism understandings.
*We know generally that divergent opinion is often not referenced, or even pertinent information is not mentioned, let alone discussed in the PDA literature. E.g., check how often Elena Garralda's article is referenced by Christie/ O'Nions, i.e., ZERO times.*
Point here is that Happe seems to have no issues discussing issues dividing in their autism scholarship, but does not mention it in their PDA work. One can argue she has benefitted from it.
*I strongly urge those engaging with PDA to reflect upon how their values, & perceptions shape their understandings & construction of PDA.*
Heck, there are thousands of persons who think ABA/ PBS is a good thing.
Just because there might be many persons in various groups who think is an ASD, does not mean PDA is part of the autism spectrum.
I am still reflecting upon it, but the article has made me more certain in my position in how "PDA as an ASD" is operating, that to view "PDA as an ASD" is unethical, & probably discriminating against non-autistic persons.
*non-autistic persons with PDA*
That vulnerable persons are likely being taken advantaged of.
The paper has increased my concerns over what is happening with "PDA as an ASD", that much greater scrutiny of it, is required.
I do not see how the current situation with "PDA as an ASD", as a "culture-bound concept" to the UK is going to end well.
I think one can question if "PDA as an ASD" narrative is hostile to "those engaging with PDA to reflect upon how their values, & perceptions shape their understandings & construction of PDA".
"Debating what DAP could be, distracts from purpose of diagnosing DAP, as an ASD (Christie 2007; Christie et al 2012; Fidler & Christie 2019).
“…maintain the integrity of how the condition is understood…” (Christie 2016; Christie 2018; Christie 2019)."
When "leading" "PDA as an ASD" "experts" take position for over an decade. How exactly one is meant to reflect upon how their values shape their understandings & constructions of PDA. Let alone embrace divergent opinions which undermine notion "PDA as an ASD"
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Crikey, does anyone else get moments of inspiration when they are doing nothing serious, i.e., "trivial" activities (e.g., for me, making cups of tea, going to the shops, in the bathroom etc)?
Subtext to this, I just had a potentially important one. Yesterday's one about @PDASociety acting like a disreputable information source on PDA by claiming research has not disclosed conflicts of interest as "more authoritative".
For the record, I do not view the PDA Society, or the clinic which did that research as particularly reputable information sources on PDA. Presently viewing them akin to reputability of "pro" ABA/ PBS supporters on ABA/ PBS.
Thought experiment to the floor.
Suppose I designed & conducted a PDA research.
I created PDA definitions based on my experience.
Ignore how PDA can be diagnosed at lower diagnosed thresholds.
Ignore how PDA can be diagnosed in non-autistic persons.
...
...
Ignore DSM-5 threshold for when something becomes "pathological", i.e., threshold for PDA.
Ignore accepted understandings anxiety is not a feature autism.
Used ADOS which is not design to assess for PDA features.
...
...
Only diagnosed PDA in persons I thought were autistic.
Only diagnosed PDA in a dual ASD + PDA traits diagnosis.
...
I naturally spend time reflecting upon things. I naturally try to evolve & learn from situations. This is very much a central aspect of who I am.
Over the last several weeks, I spent more time reflecting than I naturally do; this is a resource intensive act, in time & spoons. It also means being horrifically open to being mistaken, so open that you can shake & mould your own sense of identity.
This process is also highly organic, it is not something that is done as part of a "routine".
Something that has been bothering over the last two days. Is how some "PDA as an ASD" supporters seem to be confusing anxiety based RRBI's with autism's social communication issues.
Routed to DSM-5 autism criteria, Category A, social communication issues.
A—Deficits in social communication and interaction
A1—Deficits in social-emotional reciprocity
A2—Deficits in nonverbal communication
A3—Deficits in relationships
(Evers et al 2021).
Context for this: I spend substantial amount of time reflecting upon aspects of myself & actions, to try & better understand myself to regulate potentially problematic features. Some of communication style seems to be due to ADHD.
As I have not engaged much ADHD, & awaiting to be assessed for ADHD, there are potentially parts of myself I lack appreciation of how are viewed by others. Which then makes me on how we go about identifying aspects of persons.
So, yes, I accept that various diagnoses can be used to increase understanding for persons. Like how PDA pathologises different features to autism, hence why some persons find a PDA diagnosis better explains them than autism does.
I am critical of:
Much of its research.
How it is often theorised.
How it is being propagated.
Lack of ethical debate on it.
Generally, situation with PDA is bad. How bad, needs being investigated!
@NDx5fam I think PDA can be validly viewed as:
Rebranded autism.
A pseudo-syndrome made of features from accepted cosntructs.
A common disorder.
I think it is obvious nonsense that PDA is not autism, & it never should have been viewed as such.
@NDx5fam The situation with PDA, is appears akin to ABA, we know its practice & research are extremely shoddy, but we did not know how bad its research ethics necessarily were until research like this: frontiersin.org/articles/10.33…