Thread by @Richard_Autism

Here is the draft text from slides for video of:
Why “Pathological Demand Avoidance (PDA) Profile of ASD” (PDA) seems to be another autism scandal awaiting to happen.
I will quote the text from each slide & place screen shot of it.

I will not be including slides for references & other "standard" slides of mine, so that is title, conflicts of interests, my bias, & contact information. That information is publicly available.

Introduction.

Video series introduction.
PDA features as a continua.
Broader cultural context of “PDA Profile of ASD”.
How “PDA Profile of ASD” is being socially constructed.
Pertinent information to non-autism PDA.

Thought experiment on research investigating non-autism PDA.

Below image is the slide the previous text is from.

Serious introduction.

Video series, mainly of short videos explaining my present thinking on PDA.
About 10 videos, may change.
“PDA Profile of ASD” Constructed, what is ignored, & implications trilogy.

What I think PDA, what to practically do, & contrasting my approach to PDA with “PDA Profile of ASD” advocates trilogy.
Critiquing PDA strategies, PDA BBC Panorama video, & Defending “PDA Profile of ASD” trilogy.

Thought experiment will have a solo video.
Produced, when possible, over rest of 2023.

Below Below image is the slide the previous text is from, which is slide 5.

Below image is from slide 6, it is my diagram which shows PDA features as a series of continua.

Below Below image is the slide the previous text is from, which is slide 6.

Those attributed with PDA & caregivers are vulnerable persons.

1)“Parents of children with PDA and suspected PDA are identified as an ‘at risk’ group.” (Good 2016, p59).

2)“the anxiety levels of parents of children who have PDA patterns of behaviour are higher than those of parents of children with autism and conduct disorder. Being calm and positive when you are being challenged by your child’s daily avoidance of demands or when dealing with a meltdown is indeed not an easy task.” (Durà-Vilà & Levi, p141).

3)Caregivers are highly motivated to take part in research (O’Nions et al 2016b).

Below Below image is the slide the previous text is from, which is slide 7.

Strong demand for “PDA Profile of ASD”.

1)UK PDA interest has risen sharply over last 10 years & it way outstrips its research base (O’Nions & Eaton 2021).

2)1445 responses in two weeks of March 2018 (Russell 2018).
3)11,188 responded to a 2018 UK petition.

4)“A doctor diagnosed my son with PDA. I had a judge order my son to be seen by C.A.M.H.S to support the psychologist diagnosis but they do not commission PDA so we're stuck in limbo. To the point of social services wanting to put my son in foster care but luckily it was the judge that saw there was a problem and now back at the beginning.” (UK Government and Parliament 2018).

Below Below image is the slide the previous text is from, which is slide 8.

Some PDA proponents seem to be benefitting from premature hype.

1)NAS PDA conference fees £90-£474 (Woods 2017)
2)Oversubscribed NAS PDA conferences 2011-2019 (O’Nions et al 2014a; O’Nions et al 2014b; O’Nions et al 2016a).

3)“a growing number of private providers have emerged who are willing to offer a diagnosis of autism with a PDA profile but that can cost anywhere between £1000 and £3500” (Moore 2020, p42).

4)11 of 12 contributing clinicians are involved in private practice (PDA Society 2022).
5)111 out of 351 (31.6%) assessments ASD + PDA (Eaton 2018).

6)“Phil Christie is a Consultant Child Psychologist who now works on an independent basis and with colleagues as part of Autism Associates. Phil was Director of Children’s Services for a regional charity (now Autism East Midlands) for 30 years, until standing down in 2013.” (Christie 2019).

Below Below image is the slide the previous text is from, which is slide 9.

Autism criteria biased towards males is constructed.

1)Methodological bias, resulting from the inclusion of predominantly male samples, as well as the use of clinical tools designed to fit the male autism presentations.

2)Stereotype autism is a “boy’s disorder”
3)Males are many times more likely to referred than females.

4)When autism features are comparable levels, females are less likely to be attributed with autism than males.
5)Autistic females are often being missed, diagnosed later than males or misdiagnosed (Lockwood-Estrin et al 2021).

Below Below image is the slide the previous text is from, which is slide 10.

“PDA Profile of ASD” is constructed via similar processes.

1)“It should be noted that, so far, we have approached this profile from the starting point of our expertise in ASD.” (O’Nions et al 2016b, p2).

2)“As a result of this broadening of the way that autism and the autism spectrum are seen, the contributors’ view is that PDA is currently best understood as a ‘profile’ (or cluster of traits) on the autism spectrum.” (PDA Society 2022, p3).

3)Investigating population prevalence in autistic persons (Gillberg et al 2015).
4)Exploring PDA’s behaviour profile in suspected autistic person’s (Eaton & Weaver 2020).

Below Below image is the slide the previous text is from, which is slide 11.

“PDA Profile of ASD” is constructed via similar processes.

1)EDA-Q, EDA-8, & 11 Revised PDA DISCO items are validated in supposedly entirely autistic samples (O’Nions et al 2014a; O’Nions et al 2016b; O’Nions et al 2021).

2)Viewed PDA as an autism subgroup & a meaningful subgroup is seen in less than 30% of autistics (O’Nions et al 2016a).

3)“within their autism diagnosis, there is a range of terminology that is used in formulations, including ASD with:
• a PDA profile/a Pathological Demand Avoidance profile
• a demand avoidant profile/a profile of demand avoidance
• extreme/pervasive demand avoidance” (PDA Society 2022, p20).

Below Below image is the slide the previous text is from, which is slide 12.

Examples of PDA is found in non-autistic persons.

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

5)“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).

6)8 out of 11 (73%) CYP with PDA are non-autistic (Kaushik et al 2015, p8).
7)7 out of 24 (29%) CYP with PDA are non-autistic (McFadzen 2020, p27).

Below Below image is the slide the previous text is from, which is slide 13.

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).

EDA-Q validation study, contained 50 diagnosed CYP with PDA, it is unknown if any these individuals had an autism diagnosis (O’Nions et al 2014a). Before widespread adoption of dual “ASD + PDA Traits” diagnosis, many are unlikely to have an autism diagnosis.

4 out of 22 PDA diagnoses, was a standalone PDA diagnosis (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).

“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).

Below Below image is the slide the previous text is from, which is slide 14.

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).

Below Below image is the slide the previous text is from, which is slide 14.

Pertinent factors to consider with non-autism PDA.

PDA descriptions changed away from Newson et al (2003), which are problematic assuming PDA is autism, to become autism-like features (Woods 2022).

Predicted categories in which PDA might co-occur are based on Newson’s PDA descriptions (Woods 2022).
Co-occurring issues tend to present differently in autism vs non-autism (Kildahl et al 2021).

PDA is likely to present differently in autism vs non-autism.
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).

Below Below image is the slide the previous text is from, which is slide 16.

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?

Below Below image is the slide the previous text is from, which is slide 17.

There are five reference slides.

Below is the image for the first reference slide.

Below is the image for the second reference slide

Below is the image for the third reference slide.

Below is the image for the fourth reference slide.

Below is the image for the fifth & last reference slide.

@threadreaderapp please could you unroll?

Thank you in advance.