Thread by @Richard_Autism

@egstirling Does no-one else read @NICEComms, @BPSOfficial, @rcpsych positions on PDA, or @ArvidNK systematic review?!?

@egstirling @NICEComms @BPSOfficial @rcpsych @ArvidNK So this tweet below covers @NICEComms views on PDA, in which it recognises that topic expert views on PDA are conflicted & that PDA's demand-avoidance can be described as Oppositional Defiant Disorder.

https://twitter.com/Richard_Autism/status/1571244894890479618

@egstirling @NICEComms @BPSOfficial @rcpsych @ArvidNK Below four images show @NICEComms on PDA. PDA is only mentioned in one of three autism guidelines by NICE. It is not mentioned in assessing or identifying autism one.

@egstirling @NICEComms @BPSOfficial @rcpsych @ArvidNK Below image is @BPSOfficial position on PDA from 2021, for its guidance for working with autistic persons. It acknowledges debate if PDA is seen in non-autistic persons.

@egstirling Below image is from @rcpsych review of PDA. Again it mentions debate if PDA is specific to autism. Again it acknowledges debate if PDA is distinct thing or not. Also describes PDA without social communication issues...

@egstirling @rcpsych "majority of participants with PDA in most of the included studies were autistic, and apart from Study (3), there have been few comparisons or analyses of PDA symptoms in other groups. Although one of the case studies reported co-occurring ADHD and epilepsy" @ArvidNK et al p10.

@egstirling There are other examples of non-autistic persons with PDA in literature, example is from O'Nions 2013, p176.

@egstirling "PDA Profile of ASD" supporters seem to ignore them. I have seen claims by them some cases of PDA in literature are not actually PDA, as they do not conform to their (biased) preconceived notions of PDA looks like.

@egstirling I follow typical ethical standards on research & practice. Including legally, I have to treat non-autistic persons with PDA the same as autistic ones. Also treat the same persons with PDA who do not believe in PDA, as "PDA Profile of ASD" supporting PDAers
researchgate.net/publication/36…

@egstirling From what I can tell, I am doing, what I should be doing on PDA. Taking a balanced perspective, being inclusive of various competing views on PDA & respecting PDA's, often notoriously poor quality research as much possible. It seems it is not me who is the problem on PDA.

@egstirling There is MASSIVE clues I am not the problem with PDA. Focusing on a PDA as "Profile of ASD" biases PDA research, its behaviour, & I would suggest tells us very little about PDA itself.

@egstirling For one PDA is being diagnosed at lower diagnostic thresholds, than PDA Society seems comfortable with. Those lower diagnostic PDA diagnoses would have been made due to a clinical need, i.e., people would probably need help & so clinicians made "extra" PDA diagnoses.

@egstirling If one accepts PDA's clinical need, which not everyone does, as PDA is not diagnosed universally across the UK. The three main studies which indicate clinical need for PDA, are likely to have cases of PDA at lower diagnostic thresholds.

@egstirling Yet PDA Society wrote this:
"Equally contributors have noted that, with increased awareness, there has been some over-identification by other practitioners. Both can be problematic..."
Because it SO respects clinical opinion of those diagnosing PDA at lower diagnostic thresholds.

@egstirling Previous quote is from PDA Society (2022, p1).

@egstirling We know that Disorders tend interact with co-occurring Disorders, this happens in autism too. So autism tends to interact with co-occurring conditions, meaning they tend to present differently inside autism versus outside of autism.

@egstirling This means that anxiety for example can present differently in autistic persons, with different causal mechanism to non-autistic persons. This is mentioned in Green et al (2018) & in Kildahl et al (2021, p2), see below image of highlighted text.

@egstirling Point about co-occurring conditions presently differently in autistic persons versus non-autistic persons is a factor why often tools for anxiety/ depression etc need to be validated on autistic persons.

@egstirling That means PDA probably presents slightly differently in autistic persons to non-autistic persons. Which means that conducting research on entirely/ or suspected entirely autistic populations biases PDA research & biases PDA clinical descriptions.

@egstirling Yet, PDA Society Society seems to be claiming that as PDA probably presents differently in suspected autistic persons, that PDA must be part of the autism spectrum. It is horrifically circular.

@egstirling This takes me to your other tweet, I have not responded to. PDA Society is claiming that there are differences between ADHD & PDA demand-avoidance, when research would suggest that demand-avoidance in PDA & ADHD is often for same reasons.

@egstirling Because charity has ignored that empirical evidence, it casts doubt about accuracy & validity of PDA descriptions provided by PDA Society & 12 clinicians who charity consulted.

@egstirling We cannot be sure if PDA overlapping ADHD, & present in ADHD independent of autism, as appears the case, PDA Society is happy to ignore empirical because it & some clinicians think they know better than empirical evidence & other topic experts opinions.

@egstirling Which is an example of why I think viewing PDA as a "Profile of ASD" scientifically tells us very little.

@egstirling Focusing on PDA as a "Profile of ASD", has to some studies investigating clinical need for PDA in autistic persons. Yet, there are examples of PDA diagnoses in non-autistic persons, indicating there is a clinical need for PDA in non-autistic persons.

@egstirling Logically if one accepts PDA is seen in non-autistic persons, then PDA cannot be a "Profile of Autism". So what do you do, instead claim non-autistic persons with PDA, are actual cases of PDA, as they do not conform to narrow (biased) views of PDA.

@egstirling Also biased descriptions of PDA, which are based on autistic persons, when one would expect PDA to present differently in non-autistic persons, anyway.

@egstirling Yet, because PDA probably presents differently in non-autistic persons, non-autistics with PDA cannot actually be PDA because they are different to biased understandings of PDA, from focusing on PDA as a "Profile of ASD".

@egstirling Back to studies investigating PDA's clinical need. Essentially, there are no studies investigating PDA in non-autistic persons, so there is little to no-evidence to say PDA should ONLY be diagnosed in autistic persons.

@egstirling Absence of evidence, is not evidence of absence of evidence.

PDA would need to be diagnosed in non-autistic persons & its clinical need to investigated in non-autistic persons, to show that there is NO clinical need for PDA in non-autistic persons.

@egstirling Yet, PDA Society, 12 clinicians who informed PDA Society (2022), seem happy to ignore clinical need for PDA in non-autistic persons, from cases of non-autistic person with PDA diagnoses. Arbitrarily choosing to ONLY diagnose PDA in autistic persons.

@egstirling Scientifically, there is little to nothing to justify that decision to ONLY diagnose PDA in autistic persons. There are good scientific reasons to diagnose outside of autism, to get accurate & balanced research & clinical descriptions of PDA.

@egstirling Yet, PDA Society seems to only be concerned with pursuing PDA as a "Profile of ASD", despite from what I can tell, scientifically it tells us very little. While seemingly undermining the integrity of autism, PDA itself, & other diagnostic constructs.

@egstirling I do not see how it is ethical to arbitrarily choose to only support a minority of PDA diagnoses, despite evidence indicating they also clinical need to adequately support ALL PDA diagnoses.

@egstirling PDA Society's apparent actions are unsurprising when one considers that poor quality research & ethics often go hand in hand.
tandfonline.com/doi/abs/10.108…

@egstirling As I said, it seems I am not the problem in relation towards PDA. It seems I am doing what I should be doing.

@egstirling The final sentence in below tweet is hyperbole.

https://twitter.com/Richard_Autism/status/1600209919923220482

@egstirling From a scientific perspective, most of our PDA studies involve the EDA-Q, so it makes little sense to substantially deviate from EDA-Q threshold, or to ignore its results. If one substantially deviates from EDA-Q threshold one cannot be sure of generalising research results.

@egstirling Yet PDA Society wrote this:
"Clinical practice has shown that in some cases with high EDA-Q scores the marked demand avoidance can be better explained by other underlying reasons and not a PDA profile." PDA Society 2022, p17.
I.e., some clinicians think EDA-Q has false positives

@egstirling That would not be response to EDA-Q detecting PDA in non-autistic persons. I would stop assuming PDA is a "Profile of Autism" & revise my views on PDA, so we can generalise EDA-Q study results. So i revised my views on PDA to mirror EDA-Q threshold.

@egstirling "PDA Profile of ASD", seems to not be about science, or actually helping all those with a PDA diagnosis. It seems to be an exercise in validating perceptions of "PDA Profile of ASD" proponents. If one considers that, it explains actions of PDA Society & others.

@egstirling The point about EDA-Q matters. What is the point of conducting PDA research with EDA-Q, if one cannot be sure results will generalisable, because a charity & 12 invited biased clinicians think EDA-Q has falsely detects PDA in non-autistic persons?

@egstirling What is the point of conducting PDA research if PDA Society due to choosing to invite 12 biased clinicians to consult in producing document it claims to be clinical guidance, will seemingly happily ignore, because they seemingly think they know better than PDA research?

@egstirling How can one take PDA Society & the 12 clinicians it consulted views seriously as reputable & credible, if they seemingly think their opinions are better than opinions over other topic experts, over other PDA diagnoses & PDA research?

@egstirling The problem is, we cannot be sure what they choosing to ignore due to reasonable/ valid reasons. It makes it exceedingly difficult to trust accuracy & validity of materials & descriptions they produce, due to circularity of "PDA Profile of ASD", high risk of bias present.

@egstirling So PDA is a "Profile of ASD", because they claim PDA is best viewed as part of autism spectrum. Autism has expanded to include PDA, because they say it is despite fact they need to write how PDA is different to broader clinical practice. EDA-Q is wrong, because they claim it is.

@egstirling First image form PDA Society 2022, p6
Second image is from PDA Society 2022, p17
Third image from PDA Society 2022, p3
Image for sentence. Autism has expanded to include PDA, because they say it is despite fact they need to write how PDA is different to broader clinical practice.

@egstirling PDA has been over diagnosed, because they say PDA has been.

"Equally contributors have noted that, with increased awareness, there has been some over-identification by other practitioners." PDA Society 2022, p1.

That is NOT scientific in the slightest.

@egstirling I will stop here, but I could continue, highlighting how "PDA Profile of ASD" seems not be scientific, or ethical.

@threadreaderapp please can you unroll?

Thank you in advance.