CAN REINFORCEMENT BASED APPROACHES CAUSE BORDELINE PERSONALITY DISORDER IN PERSONS WITH PATHOLOGICAL DEMAND AVOIDANCE?
This is the first of the few blog posts I will be producing over the coming months to mark PDA day 2020 (15th of May 2020). This is a version of an essay I submitted in response to a recent article by Liz O’Nions in Journal of Autism and Developmental Disorders. I have left it largely as submitted, so it has been anonymised. It was rejected due to the journal receiving too many submissions. I am currently in the process of substantially redrafting it to discuss in greater depth the overlap between PDA, trauma and Borderline Personality Disorder. The revised essay will be submitted as a sample chapter for a book proposal.
Other planned blog posts include a rebuttal to a particular blog by Robert Chapman and an ethics essay on PDA. I might even finish the blog post on how PDA Community is acting like a cult, which would be interesting to complete!
I also include links to recent research and a call for participants in some PDA research being conducted at University of Nottingham.
Can reinforcement-based approaches cause Borderline Personality Disorder in persons with Pathological Demand Avoidance?
Letter to the Editor.
A recent article discussing the validation of a questionnaire that measures the parenting strategies of carers of children and young people (CYP) with autism, often mentions the proposed autism subtype Pathological Demand Avoidance (PDA) (O’Nions et al, 2020), without discussing its’ controversies. PDA has several essential criteria, which are: (1) comfortable in role play and pretend; (2) continues to resist and avoid ordinary; (3) demands of life demand avoidance can use social strategies; (4) lability of mood and impulsive; (5) obsessive behaviour that is often focused on other people; surface sociability, (6) but apparent lack of sense of social identity, pride, or shame. Additionally, there are few optional traits include: (7) delayed speech development; (8) neurological involvement; (9) passive early history; (10) and sensory differences (Author/s, Date). Initially, I seek to challenge contentious aspects of PDA mentioned by O’Nions and colleagues (2020). Later, I build on the practical implications of their research to hypothesis reinforcement-based approaches involving rewards and consequences can lead to CYP with PDA developing Borderline Personality Disorder (BPD).
O’Nions et al (2020) mention how demand avoidance behaviour in PDA is frequently attributed to high anxiety levels, while citing this to Newson et al (2003). A more accurate reflection of the literature would observe this link does not originate from Elizabeth Newson, but instead Phil Christie. Newson and colleagues describe demand avoidance as being obsessive in nature and their article does not include the word anxiety. However, the first PDA scholarship to link anxiety to demand avoidance is Christie (2007). This point is later expanded upon where high anxiety driven demand avoidance is the central impairment of PDA, and that CYP with PDA’s anxiety levels are in the top 2% of the human population (Christie et al, 2011). Generally, the fact that anxiety is not an autism symptom but a co-occurring difficulty (Author/s, Date), is generally not considered in key literature, while it is in fringe articles such as Gould and Ashton-Smith (2011). Pertinently, it is inappropriate to include PDA in the autism spectrum if it fundamentally does not conform to established understandings of autism (Author/s, Date).
It is mentioned that PDA is largely centred in the United Kingdom (UK) and thus is culture specific (O’Nions et al, 2020). In the UK demand for it is partly driven by cuts in support services for all persons with autism (Author/s, Date). PDA is not identified in all areas of the UK. PDA views anxiety as the cause of CYP with PDA atypical behaviour. Thusly, it de-stigmatises the CYP and carer from not following traditional discipline based parenting approaches (O’Nions et al, 2020). Yet autism subtypes were removed from the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM5) partly to reduce the stigma for all persons with autism (Author/s, Date; Kapp and Ne’eman, 2019). While PDA is culture specific, one could argue PDA should not be identified on two different grounds. Firstly, its clinical need is contested (Author/s, Date). Secondly, autism subtypes were intentionally removed from the DSM5 (Author/s, Date; Kapp and Ne’eman, 2019). These points are not covered by O’Nions and colleagues (2020). It is worth discussing such matters in future research that utilises samples with a large proportion of participants interested in PDA.
As part of the practical implications of their research, the need to reduce the anxiety of CYP with autism is discussed to prevent sustained escalation of distress (challenging) behaviours (O’Nions et al, 2020). PDA strategies comprising flexible and collaborative approaches can be viewed as good practice with all CYP (Author/s, Date). In their earlier research, they discuss how using reinforcement-based rewards and punishment approaches may cause further problems; as the CYP can be blocked from utilising their single coping mechanism and risk the CYP not having a functional response to extremely aversive experiences. Such reinforcement based approaches are the mainstay of most parenting interventions for disruptive behaviour disorders (O’Nions and Neons, 2018). One can imagine such a situation is logically highly distressing to any CYP. For example, PDA parent Jane Sherwin observes that when using traditional reinforcement-based parenting approaches with her daughter, subsequently their behaviours became more extreme (2015). It is worth noting such scenarios are linked to the development of PBD:
“The invalidating and ignoring of a child, as well as punishing to control behavior, and not taking seriously the child’s needs are all common and even recommended responses to SIB in the autistic population, despite these responses being linked to the development of Borderline Personality Disorder.” (Shkedy et al, 2019, p. 6).
It has been suggested PDA might be a form of Personality Disorder (Christie, 2007), or maybe an expression of autistic trauma (Author/s, Date). Clinical symptoms possibly indicating the presence of traumatic stress reactions in response to an adverse event include: fear behaviours and tantrums; new behavioural difficulties increased restricted interests and repetitive behaviours; deterioration of social communication skills; adaptive functioning; alterations in vegetative functions (Peterson et al, 2019). These symptoms substantially overlap the PDA profile. One can hypothesise that not using accommodation techniques increases the risk of persons with PDA developing Borderline Personality Disorder (BPD). It must be stressed that if this is the case, most trauma resulting from using reinforcement-based approaches is unlikely to be from the carers deliberately harming their child; as such approaches are widely encouraged. Longitudinal research is needed to explore if BPD is developed by not meeting the support needs of respectively of both CYP with autism and PDA.
O’Nions et al (2020) propose longitudinal research into autism carers parenting strategies is required. I build on their work to clarify the nature of demand avoidance in the PDA literature, while contextualising their work in wider autism debates. Particularly, I detail how O’Nions and colleagues (ibid) research fits into concerns that utilising reinforcement-based rewards and sanctions type approaches can possibly traumatise CYP with PDA. There is an urgent need for investigations into if characteristics that are pathologised by the PDA construct represent distress and trauma, instead of autism. Going forward a portrayal of PDA that does not assume it is an autism subtype is required.
[Insert Author/s Name/s].
My latest research.
My most recent conference paper is:
- Is the concept of Demand Avoidance Phenomena (Pathological Demand Avoidance) real or mythical?
I have recently had a commentary article published in Good Autism Practice:
– Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society DAP Conference.
Additionally, I and others have had a short essay published in Journal of Autism and Developmental Disorders:
– Empathy and a Personalised Approach in Autism.
A book chapter describing what the sub-discipline Critical Autism Studies is, I lead authored it and it can be found here:
Autism Policy and Practice.
The autistic-led good practice journal, Autism Policy and Practice has published its first edition under the current editor team. This can be accessed via the link below:
PDA Research Call for Participants.
Sian Brown, is doing a study on externalising and internalising experiences in persons who describe behaviours associated with PDA. If you are interested in taking part, please complete the form below:
Author/s. (Date). Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 20(2), 28-40. https://www.ingentaconnect.com/contentone/bild/gap/2019/00000020/00000002/art00004
Author/s. (Date). Commentary: Demand Avoidance Phenomena, a manifold issue? Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents: a commentary on Stuart et al. (2019). Child and Adolescent Mental Health. DOI: https://onlinelibrary.wiley.com/doi/abs/10.1111/camh.12368?af=R
Author/s. (Date). Empathy and a Personalised Approach in Autism. Journal of Autism and Developmental Disorders. DOI: https://link.springer.com/article/10.1007%2Fs10803-019-04287-4
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., Duncan, M., Fidler, R., & Healey, Z. (2011). Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.
Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. Good Autism Practice, 12(1), 34-41. https://www.ingentaconnect.com/contentone/bild/gap/2011/00000012/00000001/art00005
Kapp, S., & Ne’eman, A. (2019). Lobbying Autism’s Diagnostic Revision in the DSM-5. In: Kapp, S. (Ed.), Autistic Community and the Neurodiversity Movement (pp. 167-194). New York: Springer Nature.
Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595–600. https://adc.bmj.com/content/88/7/595
O’Nions, E., & Neons, I. (2018). Commentary: Conceptualising demand avoidance in an ASD context – a response to Osman Malik & Gillian Baird (2018). Child and Adolescent Mental Health, 23(4), 389-390. https://onlinelibrary.wiley.com/doi/abs/10.1111/camh.12287
O’Nions, E., Ceulemans, E., Happé, F., Benson, P., Evers, K., & Neons, I. (2020). Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour. Journal of Autism and Developmental Disorders, 50(2), 386-401.https://link.springer.com/article/10.1007%2Fs10803-019-04219-2
Peterson, J., Earl, R., Fox, E., Ma, R., Haidar, G., Pepper, M.,…Bernier, R. (2019). Trauma and Autism Spectrum Disorder: Review, Proposed Treatment Adaptations and Future Directions. Journal of Child & Adolescent Trauma, 12(4), 529-547. https://link.springer.com/article/10.1007/s40653-019-00253-5
Sherwin, J. (2015). Pathological Demand Avoidance Syndrome: My Daughter is Not Naughty. London: Jessica Kingsley Publishers.
Shkedy, G., Shkedy, D., & Sandoval-Norton, A. (2019). Treating self-injurious behaviors in autism spectrum disorder. Cogent Psychology, 6(1), 1682766. DOI: https://doi.org/10.1080/23311908.2019.1682766