FOOD FOR THOUGHT: IS IT IMPERATIVE THAT THE PDA LABEL BE ACCEPTED?
From talking to PDA supporters on twitter today, they seem to know that the autism label has issues when it is sub divided as argued in Green et al (2018) (also seem to ignore issues of subdividing autism label such as hardening of stereotypes) and it is unlikely to find a specific PDA bio-marker (the below points highlights the latter point).
We do not know what PDA is from:
– Autism (Green et al 2018; Milton 2017).
– Autistic trauma (my own critique).
– Attachment Disorder (Christie 2007; Flackhill et al 2017).
– Used EDA-Q to screen for PDA in a random sample (N = 25), suggesting PDA is seen outside of autism (3 of 11 meeting threshold value) (Kaushik 2015).
– The critique from the 2 recent literature reviews (Green et al 2018 and the Philip and Contejean 2018) are critical about the research that has gone and are interpreting PDA in their own ways. Philip and Contejean (2018) argue the DISCO needs to be calibrated to account for PDAer “craze for the imaginary”.
Most of the PDA research being co-ordinated from the PDA development group; its validity is questionable due to many reasons, significantly because:
- Christie et al (2012) they are awaiting research to confirm their clinical based understandings.
- Leading research to get PDA into the diagnostic manuals (Christie et al 2012). Using research that confirms their clinical understandings of PDA?
- PDA Society survey suggests (along with other evidence) that the PDA community largely supports the PDA development group’s agenda of getting PDA into the diagnostic manuals and to be accepted (Russell 2018).
These interact to contribute to a researcher bias, a participant bias and questionable methodology being used at times, such as looking for PDA in only autistic population samples (ignoring PDA’s other ontologies).
Subdividing autism has too many issues and the case for PDA is poor; why is the PDA lobby (PDA campaign and PDA development group) trying to get PDA into the diagnostic manuals or accepted? What is being told to PDA community to encourage them to think PDA is going to be accepted? Are they just assuming the main PDA discourse is correct (there is some evidence support this)?
Why for 7 years (start of PDA development group [Christie et al 2012]) has the PDA lobby not done empirical research into the strategies to allow them to be used more widely? Maybe the answer is a lack of critical engagement with PDA within the PDA lobby; it explains why they have not done research checking for negative side effects of PDA or its strategies (that I am aware of). If the agenda of the PDA lobby was to ensure that people received PDA strategies they could have done all the research to get it accepted by NICE by now, this should allow all PDAers to receive PDA strategies regardless of their specific SEND label.
With the admission PDA is not likely to be accepted in the diagnostic manuals, in many places and many clinicians do not accept PDA (Christie et al 2012; Russell 2018). The definition of insanity is doing the same thing over and over again and expecting a different result. Russell (2018) suggests the psychological impact this rejection is having on PDA community members, logically negatively experiencing rejection to something a person is emotionally invested in (which many PDA supporters are for PDA). I am providing a solution to avoid the psychological effects of people predictably rejecting the PDA label, which is plausible for the foreseeable future considering its conflicted ontology & the state of its research. Why am I being vilified when I am offering the PDA lobby a way to ensure they access support and services that is independent of their efforts to get PDA accepted (which is pertinent if you accept Kaushik  results)? Is it because of how I am presenting my views? Is it because my views run counter to their agenda? Is it a symptom of arguing that PDA should be diagnosed instead of debated, as suggested by PDA advocates (Christie 2007; Christie et al 2012)?
I suspect the answers to the questions raised here will depend on:
- One’s own bias to PDA.
- If you have something to gain from propagating the main PDA discourse.
Latest article published.
I and others have a new article published Critical Autism Studies: a more Inclusive Interpretation, which can be viewed at the link below:
Autism Policy and Practice Call for Papers.
The autistic-led (emancipatory) good practice journal Autism Policy and Practice has issued a call for papers available at the link below:
Grace Trundle’s Call Research Participants.
The purpose of this study is to investigate the relationship between Autism, ADHD, and personality and PDA. It also examines the relationship between PDA, conflict with the law, impulsivity, and emotionality. We are striving to further understanding of the aetiology of PDA.
The link to the study is – https://nottingham.onlinesurveys.ac.uk/individual-differences-autism-spectrum-disorder-and-patho-2
Christie, P., 2007. The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice, 8 (1), 3-11.
Christie, P., et al., 2012. Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.
Flackhill, C., et al., 2017. The Coventry Grid Interview (CGI): exploring autism and attachment difficulties. Good Autism Practice, 18 (1), 62 – 80.
Green, J., et al., 2018. Pathological Demand Avoidance: symptoms but not a syndrome. Lancet Child & Adolescent Health. DOI: https://doi.org/10.1016/S2352-4642(18)30044-0
Kaushik, A., 2015. Extreme Demand Avoidance: towards a dimensional approach in children presenting with complex neurodevelopmental disorders and avoidance of demands. (Conference talk to Royal College of Psychiatrists Faculty of Child and Adolescent Psychiatry Annual Conference, Hilton Brighton Metropole Hotel). 16 September 2015.
Milton, D., 2017. A Mismatch of Salience: Explorations of the nature of autism from theory to practice. Hove: Pavilion Publishing and Media Limited.
Philip, A. and Contejean, Y., 2018. The syndrome of pathological avoidance of requests: autistic psychopathy? Asperger Syndrome ? Atypical autism? Or specific pervasive developmental disorder (PDD)?Pathological demand avoidance syndrome: Autistic psychopathy? Asperger syndrome? Atypical autism? Or specific pervasive developmental disorder (PDD)? Neuropsychiatry of Childhood and Adolescence, 66 (2), 103 – 108.
Russell, S., 2018. Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile (online). United Kingdom: PDA Society. Available at: https://www.pdasociety.org.uk/files/download/785bb77d7afa7fe (Accessed 04 June 2018).
I forgot to add the method of accessing PDA strategies is: that they can and should be accessed regardless of the SEND label a person has. For instance they can written into an EHCP or IEP without a PDA diagnosis.
I should clarify; to find out what the main PDA discourse, it can be found described below:
I also need to say, Damian notes PDA can be described as autistic trauma in the traditional psychological sense, that the trauma presents differently due to autistic being. My version of this is trauma from environmental causes, such as from a dog barking causes physical distress to an autistic man, see Chown (2017) for details.