Thread by @Richard_Autism

@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".

@ndhumanoid The results are an opportunity for the "PDA is an ASD" community to show it is genuinely open minded and reform itself, to hold itself to the highest possible standards. Although, based on its response to past critique, it will stay dogmatic.

@ndhumanoid Here is one indicator the "PDA is an ASD" will not reform itself, or at least the difficulties to it reforming itself. Note the assumptions that they know what PDA is and looks like.

@ndhumanoid Second indicator of the "PDA is an ASD" community will not reform itself, goes to the @PDASociety. Examples from its recent newsletter.

@ndhumanoid @PDASociety "This postcode lottery is a huge barrier to individuals receiving the understanding and support they need, which is leading to unnecessarily poor outcomes for this group of autistic people and their families."

@ndhumanoid @PDASociety Again, what is it that is exactly being understood? What evidence is there that PDA leads to persons receiving better outcomes than those not receiving a diagnosis? From my understanding it is not from here:
tandfonline.com/doi/full/10.10…

@ndhumanoid @PDASociety Lack of consideration by the @PDASociety that there is a postcode lottery for a reason, mainly due to the lack of good quality evidence to suggest what PDA is and is not.

@ndhumanoid @PDASociety "With the appointment of our first Chief Executive, we look forward to furthering our reach and remit to improve acceptance of PDA.”

@ndhumanoid @PDASociety So furthering their reach and remit to improve PDA as a form of autism, despite lacking the evidence to say PDA is a distinct anything. Anyone seeing the problem with the @PDASociety here?

@ndhumanoid @PDASociety

@ndhumanoid @PDASociety " We'll be working with all involved to explore how the PDA profile is understood within the new plans and services."

@ndhumanoid @PDASociety In relation to 2021 England autism strategy, which seems not to mention PDA. Begs the question why are they working with anyone to help understand PDA?

@ndhumanoid @PDASociety Again worth mentioning @PDASociety is portraying itself as an autism stakeholder even though PDA lacks evidence to suggest it is a distinct anything, & there are non-autistic persons with PDA in the research base...

@ndhumanoid @PDASociety I think this is for the second example on how the "PDA is an ASD" community will not reform itself.

Yes, this will be running thread, updated with examples.

@ndhumanoid @PDASociety Third example the "PDA is an ASD" community is unlikely to reform itself comes from a responses to a post of mine highlighting the issues with PDA, responding to "Are there any autistics here who view PDA as an inappropriate label?" on facebook.

@ndhumanoid @PDASociety I could pick many different examples but I am going to go this one:
"Richard does not believe in PDA but chooses to chase a trauma model."

So apparently, one needs to believe "PDA is an ASD" for them to be OK with you.

@ndhumanoid @PDASociety Such examples highlight the problems faced with PDA research, when there is a community that has essentially already decided what PDA is. Dogma, much?

@threadreaderapp please could you unroll again?

Thank you in advance.

@ndhumanoid @PDASociety @threadreaderapp Fourth example that "PDA is an ASD" community will not reform itself to hold PDA and itself to the highest possible standards is this "PDA test for adults".

@ndhumanoid @PDASociety @threadreaderapp Fifth example goes to @PDASociety for being a repeat offender. This time for its recent newsletter. First for not even mentioning recent systematic review, or the position of @BPSOfficial , or @NICEComms

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms Sixth example goes to @thepdaspace #PDASpace for not updating its PDA information to an ethical position. Essentially the reasons why the @PDASociety are at example number 5, are applicable to PDAspace.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Seventh example goes back to @PDASociety for viewing PDA as a form of autism. Likewise pretending to be an autism stakeholder by " We'll be working with all involved to explore how the PDA profile is understood within the new plans and services."

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Screenshot from its October newsletter on the topic.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Screenshot of their website stating PDA is part of the spectrum.

Link here:
pdasociety.org.uk/the-pda-societ…

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace At least the newsletter includes a link to recent systematic review, but predictably does not discuss importance of the systematic, that charity lacks evidence to say PDA is a form autism & thus undermines its efforts to work with other organisations.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Link to Kilhahl et al (2021) systematic review on its website.
pdasociety.org.uk/resources/path…

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Screenshot of the PDA Society's page on the systematic review. Highlighting their claim Eaton & Weaver is " more authoritative clinically-based research".

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Considering that study appears highly biased, & informed by clinicians experience, & not broader literature. Also its highly circular nature, & possible conflation of anxiety based RRBIs with autism social communications issues.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Claim "more authoritative clinically-based research (such as Eaton and Weaver)." is problematic putting it mildly. From what I can tell a more accurate description is that research is self-validating pseudoscience, done to support outlook PDA is an ASD.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Important to note Kildahl et al (2021) did not view PDA as a form of autism, acknowledged there were non-autistic persons with PDA in the literature, which contradicts position adopted in Eaton & Weaver (as they only dx PDA in autism).

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Also positions adopted by NICE & BPS that lack of evidence to say what PDA is, or linking it to autism. Equally treating divergent opinions on the topic. Obviously, if one respects opinion PDA is seen outside of autism.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace One cannot say PDA is part of the autism spectrum.

Simply not good enough by a charity pretending to be an autism stakeholder, which is meant to be "working with all involved to explore how the PDA profile is understood within the new plans and services."

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace If I was working with the PDA Society, I would such information to be readily available & presented if reputable independent groups took a substantially position to it.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Not to mention if I was a vulnerable person looking for information on PDA.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace

https://twitter.com/Richard_Autism/status/1434426365613314053

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace

https://twitter.com/Richard_Autism/status/1434426663262167042

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace That is it for this example of "PDA as an ASD" proponents being dogmatic on the topic.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Example on why Eaton & Weaver is not ""more authoritative clinically-based research". The paper acknowledges that not ALL of Newsons cohort meet DSM-5 autism criteria.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace "... it is likely that many of the original cohort of children assessed by Newson and her team would today meet the diagnostic criteria for Autism Spectrum Disorder using DSM 5." (Eaton & Weaver 2021, p34).

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Screenshot of the above quoted text.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace If not ALL of all Newson's cohort are autistic, then there are some non-autistic persons in Newson's research who are NOT autistic. Kildahl et al 2021 noted non-autistic persons in PDA samples.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace "The majority of participants with PDA in most of the included studies were autistic, and apart from Study (3)" (Kildahl et al 2021, p10).

See below screenshot.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Kildahl et al (2021) also described issues with PDA research from biased recruitment methods for many of its samples, that it is possible for same participants to be recruited in multiple samples.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace Just because most samples have a high number of autistic persons in it, does not mean that PDA is a form of autism. Jumping to that conclusion, is an example of texas sharpshooter fallacy @KatyBenson20 suggested on the topic.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 This issue is also compounded because PDA probably presents slightly differently in non-autistic persons, as autism & co-occurring conditions frequently simultaneously interacts with each other.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 Combine these issues with the fact that Eaton & Weaver (2020) only diagnoses PDA in autistic persons, & not as a standalone diagnosis, undermines the utility of that research; it is difficult to describe it as "more authoritative clinically-based research"."

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 That is only one example why it is problematic to view Eaton & Weaver (2020) as "more authoritative clinically-based research".

I am done this time.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 I also need to add that the fact the PDA Society described Eaton & Weaver as "more authoritative clinically-based research" is highly concerning for multiple reasons.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 I am not happy about these reflections that led to this. The charity described some research which has NOT disclosed any of its conflicts of interests as "more authoritative".

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 So obviously, it is acceptable for "PDA as an ASD" supporters for it ignore typical research standards & practice of disclosing conflicts of interest.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 Also should be noted the charity does disclose its own conflict of interest, as it has a working relationship with Judy Eaton, at least through the PDA Development Group, both are members of.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 This is not exactly actions of a reputable organisation/ information source for PDA. If I was working with PDA Society or a vulnerable person looking for information on PDA, I would want to know the charity was following typical research & practice standards.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 At the moment that simply cannot be said of the PDA Society.

I am disheartened by these reflections, really the PDA Society, & other prominent "PDA as an ASD" supporters should be doing better than this. Such actions are likely to add controversy around PDA.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 This is not a trivial matter. Considering poor quality research standards, tend to be associated with poor quality ethics. We that these are issues with much autism research & practice, especially non disclosure of conflicts of interest.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 There are efforts to raise the standards of autism research & practice both in quality & ethics. Which leading "PDA as an ASD" advocates seem happy to ignore. This upsets me as, autistic persons & those with PDA (autistic or not) deserve better than this.

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 Screenshot of where PDA Society describes Eaton & Weaver as "more authoritative clinically-based research (such as Eaton and Weaver)".

Link to the page is below:
pdasociety.org.uk/resources/path…

@ndhumanoid @PDASociety @threadreaderapp @BPSOfficial @NICEComms @thepdaspace @KatyBenson20 @threadreaderapp please can you unroll again?

Thank you in advance.