Thread by @Richard_Autism

"Sometimes this is asked alongside an existing autism spectrum disorder diagnosis, but can also be asked as an alternative to such a diagnosis or as an explanation for behavioural difficulties in children without any developmental disorder." Green et al 2018a, p456

This is a quote talking about requests to diagnose PDA in Green et al (2018a) review of PDA. Link below to the article.
thelancet.com/journals/lanch…

So why I am I mentioning this? It is from multiple authors from clinics across the UK.
The authors are: Jonathan Green, Michael Absoud, Victoria Grahame, Osman Malik, Emily Simonoff, Ann Le Couteur, Gillian Baird.

Image of the previous quote by Green et al (2018a) talking about how PDA is diagnosed in clinical settings. Obviously, this quote is reflective of multiple clinics experiences, due to authors backgrounds.

Why am I mentioning this?

"Examination of the current literature combined with the extensive clinical knowledge of the assessment team, led to the development of the following informal algorithm..." Eaton & Weaver 2020, p37.

Algorithm referred to was used to by Help4Psychology to diagnose PDA in those they suspect being autistic. I use suspect deliberately, as I am not confident all those persons with PDA are autistic due to potentially conflating non-autism PDA features with autism...

... The point is I am not confident if Help4Psychology says a person with PDA is autistic due to person meeting DSM-5 autism criteria, or because person presents PDA features & the clinic views PDA as being a form of autism...

Image with the quote from Eaton & Weaver (2020), p37.

Link to Eaton & Weaver 2020.
ingentaconnect.com/contentone/bil…

Why am I mentioning Green et al (2018a) quote on how PDA presumably diagnosed in broader clinical practice than Help4Psychology, a single clinic at the time of research in Eaton & Weaver 2020?

"Examination of the current literature combined with the extensive clinical knowledge of the assessment team," Eaton & Weaver 2020, p37.

Key part is with extensive clinical knowledge of the assessment team.

I.e., Help4Psychology assumed they know better than other clinicians on how PDA was diagnosed & what PDA is to create their algorithm. Yet the perspective of Green et al (2018) is not mentioned or discussed in Eaton & Weaver (2020). I wonder why?

Also Eaton & Weaver (2020) claim they examined the literature, which does have plenty of cases of PDA being diagnosed as a standalone diagnosis.

I present this information of examples of PDA being diagnosed as a standalone diagnosis here:
researchgate.net/publication/35…

At least 150 examples in Newson et al (2003), as they excluded cases which had autism features from their database.
adc.bmj.com/content/88/7/5…

Around 100 of 375 caregiver reported PDA diagnoses of large scale 2018 survey in the UK.

The Being Misunderstood Report views PDA as an ASD Profile.
pdasociety.org.uk/wp-content/upl…

EDA-Q validation study, contained 50 diagnosed CYP with PDA, it is unknown if any these individuals had an autism diagnosis. Research was conducted before widespread adoption of dual “ASD + PDA Traits”
diagnosis, many of these 50 are unlikely to have an autism diagnosis.

Link to that study.
acamh.onlinelibrary.wiley.com/doi/abs/10.111…

Logic for O'Nions et al (2014a) also applies to O'Nions et al (2014b), the examination of PDA behaviour profile study with 25 CYP diagnosed with PDA. journals.sagepub.com/doi/full/10.11…

I go into detail on how it is unlikely all of those 25 CYP diagnosed with PDA in the above are autistic in this thread below:
…emandavoidancecom.files.wordpress.com/2021/08/20-jun…

At least 9 PDA case studies have PDA diagnosed as a standalone entity.

These 9 examples are spread across multiple studies, so need to share articles on tweet at a time. First 4 cases in Reilly et al 2014.
sciencedirect.com/science/articl…

This has one, I also argue this one is likely non-autistic, but that is a tangent.
emerald.com/insight/conten…

There is an earlier case study from 2005 published in Good Autism Practice, which does not have a link to it. Here is one from 2011.
ingentaconnect.com/contentone/bil…

Last case study from Good Autism Practice, is Harvey (2012).
ingentaconnect.com/contentone/bil…

Final case study of diagnosing PDA as a standalone diagnosis is Eaton & Banting 2012. Diagnosed PDA as a standalone condition that is within the autism spectrum.
emerald.com/insight/conten…

I forgot to also state PDA while being diagnosed as a standalone entity, was viewed as being part of the autism spectrum here.

https://twitter.com/Richard_Autism/status/1551965536615022601

Where am I going with this?
Are there sufficient examples to suggest PDA can be diagnosed as a standalone entity, separate from autism? Well yes.
Is this supported by review paper of clinical practice broader than Help4Psychology? Yes.

What does this mean for Eaton & Weaver (2020) studies?
It tells us that their definitions are not representative of how PDA may present in its full breadth (spectrum nature), as Help4Psychology PDA definitions & clinical practice are not fully representative.

I.e., Eaton & Weaver (2020) are biased & cannot generalised into broader clinical practice.

Should Eaton & Weaver 2020 assumed their "extensive clinical knowledge of the assessment team" was sufficient to over rule divergent opinions on what PDA presents like. I.e., should Help4Psychology have assumed their opinions allows them to create a PDA algorithm?

I think answer to this question is a no. Why do I say that? Arbiters of clinical practice, NICE, BPS & RCP have not prioritised Help4Psychology PDA definitions/ views when recently reviewing PDA in clinical guidelines. I wonder why (rhetorical)?

Images are from pages 10 + 47 of @NICEComms review of evidence for autism.

Link to NICE's review.
nice.org.uk/guidance/cg128…

Image from pages 30-31 of @rcpsych guidance for autism, where it discusses PDA. Interestingly this describes PDA as not having social communication issues.

Link to RCP's guidance on autism is below
rcpsych.ac.uk/docs/default-s…

Image is from page 18 of @BPSOfficial guidance on working with autistic persons, where it discusses PDA.

Now, these documents are from 2020 - 2021, mainly after Eaton & Weaver (2020) was published. This does not reduce the validity of my point that Help4Psychology should not have assumed their opinions are enough to create a PDA algorithm/ assume they know better than others on PDA.

PDA has been controversial since at least 2002 & challenged in the literature since that time. Help4Psychology is aware of the limited & poor quality evidence base for PDA at the time of conducting research in Eaton & Weaver (2020).

The ethical & quality standards the likes of NICE, BPS & RCP working towards, in addition to broader context of PDA were insignificantly different when NICE/ BPS/ RCP recently reviewed PDA vs when Eaton & Weaver (2020) was published.

In particular most of the examples in PDA literature of it being diagnosed separately were from before 2016. Green et al (2018a) came out 2 years before Eaton & Weaver (2020)...

... The reasons for equally respecting other clinics & topic experts views on PDA were sufficient before NICE/ BPS/ RCP reviewed PDA in 2020 - 2021. Help4Psychology do not have a good excuse for ignoring it...

... End of the day those who disagree with Help4Psychology have been, are & will continue to conduct PDA research & gaining evidence for their own views, that disagrees with Help4Psychology's views on PDA...

... Help4Psychology believe that only they understand what PDA is, & how PDA should be diagnosed? If so, they are likely to be proven mistaken in the future.

An example of those who disagree with "PDA Profile of ASD" conducting research into PDA & producing results which do not support Help4Psychology outlook on PDA.
doi.org/10.1186/s12888…

This thread just shows how "wild west" some PDA clinical practice & research is.

On that note, @threadreaderapp please can you unroll?

Thank you in advance.

I have accidentally forgotten two more examples of where there are persons diagnosed with PDA as a standalone entity.

Four out of 22 individuals with PDA in a medium scale research into CYP with PDA educational experiences had a solo PDA diagnosis.
nasenjournals.onlinelibrary.wiley.com/doi/abs/10.111…

I think the sample in the above is exactly the same as this other study on caregiver experiences of professionals, by the same authors.
tandfonline.com/doi/abs/10.108…

There are also three CYP diagnosed with PDA, who are non-autistic in Chapter 8 study in O'Nions PhD thesis.

The thesis was not publicly available at time of Eaton & Weaver (2020) was conducted. Yet, they did have feedback from O'Nions on the manuscript. Maybe unfair to expect Help4Psychology to be aware of these 3 cases at time they conducted their research in Eaton & Weaver (2020).

Also there is an example of case with PDA in attachment disorder & ADOS score of one in O'Nions thesis. Chapter 5 sample. Image from p226. Again might be unreasonable to expect Help4Psychology to be aware of this example when conducting Eaton & Weaver (2020).

Link to O'Nions thesis is below.
ethos.bl.uk/OrderDetails.d…

Point of the above examples PDA can be seen/ diagnosed as a standalone entity to make point against Help4Psychology (Eaton & Weaver 2020), creating their own PDA definitions & algorithm, as previously set out in this thread.

I am done adding to this thread. So I will end it here.

This thread just shows how "wild west" some PDA clinical practice & research is.

On that note, @threadreaderapp please can you unroll?

Thank you in advance.