Thread by @Richard_Autism

I end the video discussing why it seems PDA is another autism waiting to happen (see link below), with a thought experiment investigating non-autism PDA. Yet there is other pertinent information when considering what non-autism PDA presents like.

So the non-autism PDA research thought experiment is needs its own video providing an introduction to the topic. Here is a thread of the draft text for such a video.

Same as before, not including text from: title, conflict of interest, contact & resource information slides. Images of the reference slides will be provided, but not text from the slides.

Introduction.

PDA features continua diagram.
Examples over what PDA might be & predicted populations.
Context from PDA clinical descriptions.

Autism & co-occurring difficulties implications for PDA.
Examples of non-autistics in PDA literature.
Examples of PDA attributed as a standalone category.
Non-autism PDA Research Thought Experiment.

Text in previous tweets is from below is image is from slide 4.

Image below is slide 5, which has PDA features as a series of continua.

Examples debates over what PDA maybe & predicted populations.

1)“…whether the behaviours found in PDA can be explained within other disorders such as attachment disorder or personality disorder...” (Christie 2007, p3).
populations...” (Gillberg et al 2015, p983).

1)“A “manipulative child” in the 1970s might get the label of Pathological Demand Avoidance Syndrome in the 2000s.” (Goodley 2011, p10).

2)“Pathological (or extreme) demand avoidance is a term sometimes applied to complex behaviours in children within— or beyond—autism spectrum disorder.” (Green et al 2018, p455).

3)“…it is possible, albeit not probable (again based on clinical experience) that the phenotype could be present in up to a few per cent of non-ASD populations...” (Gillberg et al 2015, p983).

Text in previous tweets is from below is image is from slide 6.

Gillberg (2014) predicted PDA populations.

“PDA is not just encountered in ASD or ODD or as a ‘separate entity’. According to my own 40 years of clinical experience, it is not at all uncommon in language disorder,..."

"...ADHD (particularly inattentive subtype or ‘ADD’), selective mutism, school refusal, anorexia nervosa, certain behavioural phenotype syndromes (including 22q11 deletion syndrome and Marfan syndrome) and epilepsy..."

"...It is, very likely, a label that would fit almost perfectly with the phenotype of the Japanese ‘diagnosis’ of Hikikomori. Even though no prevalence estimate of PDA yet exists, I am convinced that it is not an extremely rare phenomenon.” (Gillberg 2014, p769).

Text in previous tweets is from below is image is from slide 7.

Biasing PDA research & descriptions.

1)Predicted PDA populations are based on Newson et al (2003), which are problematic viewing as autism (Woods 2022).

2)PDA descriptions changed away from indicating not autism, to become autism-like features. E.g., “manipulative” behaviours are not indicative of autism (Woods 2022).

3)E.g., “strategies of avoidance are essentially socially manipulative” (Newson et al 2003, p597) to “strategies of avoidance that are essentially ‘socially manipulative’” (O’Nions et al 2016, p415), then to “Uses social strategies as part of avoidance, eg, distracting, giving excuses” (Green et al 2018, p457).

Text in previous tweets is from below is image is from slide 8.

Implications of co-occurring difficulties for non-autism PDA.

1)Co-occurring categories can unpredictably interact.
2)Making some features more intense, while other characteristics less intense.

3)Sometimes creating novel features, that can be more intense than features associated with original categories; creating novel categories (Petrolini & Vincente 2022).

4)PDA maybe result of such unpredictable interactions between competing co-occurring conditions.

Text in previous tweets is from below is image is from slide 9.

Implications of co-occurring difficulties for non-autism PDA.

1)Co-occurring difficulties often present differently in autistics, compared to non-autistics (Kildahl et al 2021).
2)E.g., anxiety often has different causal mechanisms in autism vs non-autism (Green et al 2018).

3)PDA is likely to present differently in autism vs non-autism.
4)Cannot directly use autism-based PDA understandings to indicate if PDA is present in non-autistic populations, & how non-autism PDA might look like (Woods 2022).

Text in previous tweets is from below is image is from slide 10.

Examples of PDA is found in non-autistic persons.

1)Chapter 5 study has one CYP with diagnosed with Attachment Disorder & ADOS Score of 1 (O’Nions 2013, p226).
2)Chapter 8 study has 23% of CYP diagnosed with PDA are non-autistic. (O’Nions 2013, p176).

3)“As well as significant symptoms of PDA, the four children met criteria for a range of neurobehavioural disorders; all four had cognitive impairment (IQ < 85) and met DSM-IV-TR criteria for ADHD. Three, in addition, met criteria for ASD…” (Reilly et al 2014, p3236).

4)1 out of 27 (3.7%) attributed with PDA did not threshold for autism (O’Nions et al 2016).
5)8 out of 11 (73%) CYP with PDA are non-autistic (Kaushik et al 2015, p8).
6)7 out of 24 (29%) CYP with PDA are non-autistic (McFadzen 2020, p27).

Text in previous tweets is from below is image is from slide 11.

EDA-Q initial validation study example.

1)EDA-Q initial validation study, 50 CYP attributed with PDA.
2)Caregiver reported diagnoses, no autism screen & potential indicators used (O’Nions et al 2014a).

3)Before widespread adoption of dual “ASD + PDA Traits” diagnosis, many are unlikely to have an autism diagnosis.

4)During 2012–2013 in UK, 5 out of 1047 (0.48%) CYP attributed with autism attributed with co-occurring PDA (Crane et al 2016).
5)No consensus on PDA, or how to formally diagnose PDA (O’Nions et al, 2014a; Moore 2020).

6)No feature specific to PDA (Eaton & Weaver 2020; Woods 2019), & overlaps many other conditions, including predicted populations (Gillberg 2014; Green et al 2018; Woods 2019).
7)Many of 50 CYP attributed with PDA are likely to be non-autistic!

Text in previous tweets is from below is image is from slide 12.

Examples diagnosing PDA as a standalone category.

At least 150 cases in Newson PDA database (Newson et al 2003).
Around 100 of 375 caregiver reported PDA diagnoses of UK survey (Russell 2018).

“Data screening identified 91 cases that needed to be excluded from the final sample… or he or she had a primary diagnosis of pathological demand avoidance…” (Crane et al 2016, p155).

4 out of 22 (18.2%) PDA diagnoses, are standalone PDA diagnoses (Langton & Frederickson 2016).

9 PDA case studies have PDA diagnosed as a standalone entity (Carlile 2011; Eaton & Banting 2012; Harvey 2012; Jones 2005; Reilly et al 2014; Trundle et al 2017), but 2 viewed PDA as an ASD (Eaton & Banting 2012; Trundle et al 2017).

Text in previous tweets is from below is image is from slide 13.

Examples of studies indicating problematic viewing PDA as autism.

PDA behaviours may not be caused by autism, i.e. “double-hit” (Wing et al 2011). PDA is caused not autism, but is by hyperactivity & conduct problems (Egan et al 2020; Green et al 2018), anxiety (Green et al 2018).

Maybe “triple-hit” of autism, conduct problems & anxiety (O’Nions 2014b).
“Both autistic traits and anxiety were unique and equally important predictors of demand avoidance.” (White et al 2023, p2680).

A + B + C ≠ A, PDA cannot be something it is more than.
“…support the notion that anxiety and IU continue to play a role in the maintenance of PDA behaviours in adulthood,…” (Johnson and Saunderson 2023, p1).

Text in previous tweets is from below is image is from slide 14.

Thought experiment.

Setting: An inpatient unit.
Screens: EDA-QA, AQ, GAD-7, PHQ-9, SDQ.
Semi-structured interview: 11 Revised PDA DISCO items.
Cases: 20 Non-autistics scoring high on 2 PDA tools.

Quantitative results: PDA features predicted by conduct problems, hyperactivity, anxiety, but not autistic traits.

Qualitative results: Demand avoidance, socially “manipulative” avoidance, rapid mood change, impulsivity, lacking own identity, various criminal & “problematic” behaviours”
Would these 2 studies indicate cases of non-autistic PDA?
Why?

Text in previous tweets is from below is image is from slide 4.

This video should actually be between 15 - 20 minutes with being 11 slides of discussion points. I deliberately removed a few slides containing other points; but the excluded material should appear in other videos in the series.

There are 4 reference slides for this presentation.

Below is image of the first reference slide.

Below is image of the second reference slide.

Below is image of the third reference slide.

Below is image of the fourth & last reference slide.

Most of the material above is presented elsewhere, in some form, but first time it is presented cohesively on this topic.

For example material on slide is mostly from the below blog post of mine:


I added supporting evidence from Crane et al (2016, which adds credence to notion is likely many non-autistic CYP attributed with PDA in O'Nions et al (2014a).rationaldemandavoidance.com/2021/04/25/pda…

Link below to where I analyse how PDA's behaviour profile changed over time to become autism-like; it is more than just the "manipulative" to "strategic" avoidance behaviours change. This change seems to be constructed:
researchgate.net/publication/36…

I do not have time to discuss why I think that seems constructed in this video. It should be for the "PDA Profile of ASD" appears constructed video.

I will end this thread here.

I hope others find this thread interesting/ helpful.

@threadreaderapp please can you unroll?

Thank you in advance.