17th OF MARCH 2020 BLOG POST: UPDATING MY CURRENT THOUGHTS ON THE MEDICAL NATURE OF DEMAND AVOIDANCE PHENOMENA.

17th OF MARCH 2020 BLOG POST: UPDATING MY CURRENT THOUGHTS ON THE MEDICAL NATURE OF DEMAND AVOIDANCE PHENOMENA.

 

Introduction.

This blog post discusses three different topics that explain some of my current thinking on Demand Avoidance Phenomena (DAP, otherwise known as Pathological Demand Avoidance).  First I update a list of possible medical natures of DAP. Secondly, I start to develop the Aggregated Profile to reflect diagnostic criteria found in the diagnostic manuals. Finally, I discuss why presently, I am OK with DAP being viewed as separate construct. I apologise in advance, I have been driven today to produce another blog post, as something to do. I would welcome feedback on Table 1 and my changes to the Aggregated profile.

 

Updating list of Possible DAP Ontologies.

In a recent article of mine (Woods, 2019b), there is a table listing possible medical ontologies (nature) of DAP and the prevalence rates of various co-occurring conditions in autism. A recent meta-analysis has been published including more accurate data on the prevalence rates of many co-occurring conditions in autism (Lai et al, 2019). Therefore, I have updated the Table 1 to reflect this. I detail other changes below it.

 

Table 1: Demand Avoidance Phenomena possible Medical Ontologies.

Possible Medical Ontology. Comorbid Prevalence Rates (%). Associated with childhood trauma/ adversities.
Autism, i.e. DAP is pathologising features associated to autism, it is not a distinct entity (also known as “Rebranded Autism”). Unable to source data. No.
Autism subtype/ of form Pervasive Developmental Disorder/ Female form of Autism. Unable to source data. No.
Autistic Trauma. Unable to source data. Yes (Woods, 2019a).
Form of Attachment Disorder. Unable to source data. Yes (Flackhill et al, 2017).
Form of Catatonia. 12 – 18% (Eaton, 2017). Yes (Allsopp et al, 2019).
Form of Personality Disorder. 0 – 32% (Lai et al., 2014). Some types can be caused by trauma. E.g. Borderline Personality Disorder (Eaton, 2017).
Heterogeneous Spectrum Condition. Unable to source data. Probably as most disorders are caused by trauma. Disassociation is associated to childhood trauma/ adversities (Allsopp et al. 2019), which fits Newson’s descriptions of persons with DAP using roleplay or fantasy with a doll as part of their demand avoidance.
Symptoms of Autism and Anxiety. 42 – 56 % (Lai et al, 2014). Yes (Allsopp et al, 2019; Pellicano, 2020).
Symptoms of Autism and Anxiety Disorders. 20% (Lai et al, 2019). Yes (Pellicano 2020; Woods, 2020).
Symptoms of Autism and Attention Deficit Hyperactivity Disorder (ADHD). 28% (Lai et al, 2019). Can be, ADHD can be linked to environmental factors associated to parental interactions (Flackhill et al, 2017).
Symptoms of Autism and Bipolar Disorders. 5% (Lai et al, 2019). Yes, and so are related disorders (Allsopp et al, 2019).
Symptoms of Autism and Depression. 12 – 70% (Lai et al, 2014). Yes (Allsopp et al, 2019).
Symptoms of Autism and Disruptive, Impulse-Control, and Conduct Disorders 12% (Lai et al, 2019). Can be, Conduct Disorder can be linked to environmental factors associated to parental interactions (Flackhill et al, 2017).
Symptoms of Autism and Dyslexia. Unable to source data. Unable to source data.
Symptoms of Autism and Dyspraxia. Unable to source data. Unable to source data.
Symptoms of Autism and Eating Disorders. 4 – 5% (Lai et al, 2014). Yes (Allsopp et al, 2019).
Symptoms of Autism and Obsessive and Compulsive Disorder. 9% (Lai et al, 2019). Yes (Allsopp et al, 2019).
Symptom of Autism and Schizophrenia. 4% (Lai et al, 2019). Yes, and are Psychotic Disorders (Allsopp et al, 2019).

Adapted from Woods (2019b).

 

I have added Bipolar Disorders as it overlaps DAP, as mentioned in Thompson (2019). I have updated the prevalence rates from a systematic review and meta-analysis (Lai et al, 2019). I have taken out OCD from Anxiety Disorders as OCD is in own diagnostic grouping in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM5). Furthermore, I have folded Oppositional Defiant Disorder in with Disruptive, Impulse-Control, and Conduct Disorders. The last other change, is I folded in DAP being a female form of autism into Pervasive Developmental Disorder/Autism Subtype entry. There are currently 18 different possible medical natures listed, it is clear that there is still debate over if DAP is distinct entity or not, for the most recent discussion see Green (2020). While DAP can be identified in some persons, it can be worthwhile viewing DAP as symptoms resulting from the interaction between various co-occurring conditions. While the DAP literature indicates it is found in non-autistic persons (O’Nions et al, 2016; Reilly et al, 2014; Woods, 2019b), these entries reflect how DAP is mainly identifications in autistic persons. It is probable as more research and identifications of DAP in non-autistic persons occurs, this list will expand substantially.

 

I have added if a medical nature is associated to by trauma or aversive life experiences. This is important, if one notes the sheer number of possible ontologies DAP has that are associated to trauma; it indicates that DAP is also associated with trauma, if this is the case it means that it is unlikely to be a form of autism as autism itself is not associated with trauma. It is worth mentioning that social communication issues, relationship problems and sensory differences are seen in other conditions, such as sensory differences can be linked to symptoms in Obsessive Compulsive Disorder (Eaton, 2017). Meaning associating DAP traits to autism can be misleading and undermines understanding of what DAP could be by persons misattributing features to autism. For instance, Wing et al (2011) mention CYP with DAP might have additional problems that are not caused by autism.

 

The last point on this, is that I am unsure if anyone else is also listing possible medical natures of DAP. If not it raises some interesting questions as to why no-one is?

 

Mapping DAP Diagnostic criteria.

Recently I have been thinking about updating the Aggregated DAP profile, to make it more representative of diagnostic criteria in the diagnostic manuals. Below is my current thinking on the topic.

 

Restricted and Repetitive Behaviours and Interests:

  • Comfortable in role play and pretend.
  • Continues to resist and avoid ordinary demands of life
  • Obsessive behaviour often focused on other persons.
  • Sensory differences (Optional).
  • Strategies of avoidance are often essentially socially manipulative.

 

Distress Response/ Indicating Trauma.

  • Lability of mood and impulsive.
  • Surface sociability, but apparent lack of sense of social identity, pride, or shame

 

Neurodevelopmental:

  • Delayed speech development (Optional).
  • Neurological involvement (Optional).
  • Passive early history (Optional).

 

I initially revised the Aggregated Profile to reflect diagnostic criteria in the DSM5, to stimulate debate around how to ethically view DAP. It also has a practical implications for how DAP is conceptualised and therefore how persons with DAP are treated. For comparison of the above changes to the part of the autism criteria from the DSM5:

 

“A—Deficits in social communication and interaction

A1—Deficits in social-emotional reciprocity

A2—Deficits in nonverbal communication

A3—Deficits in relationships

B—Restricted, repetitive behaviour, interests or activities

B1—Stereotyped/repetitive behaviours

B2—Insistence on sameness and routines

B3—Restricted, fixated interests

B4—Hyper- or hyporeactivity to sensory input

C—Early onset” (Evers et al, 2020, p5).

 

DAP seems to be associated with trauma and is probably caused by it. Elizabeth Newson viewed most DAP traits as being obsessive in nature and some of its behaviours as resulting from panic (Newson et al, 2003). Later Phil Christie suggested DAP’s central impairment is high anxiety (Christie et al, 2011). We know that as a person becomes distressed, they tend to express more Restricted and repetitive behaviours and interests (RRBIs) increase and especially are associated to trauma. An example of how this relates to DAP is that childhood trauma and adversities is associated with disassociation (Allsopp et al, 2019) and is reflected in Newson’s descriptions:

 

“Withdrawing into fantasy, doll play, animal play: talks only to doll or to inanimate objects; appeals to doll, “My girls won’t let me do that”, “My teddy doesn’t like this game”; “But I’m a tractor, tractors don’t have hands”; growls, bites. *” (Newson et al, 2003, p597).

 

I split the 3 optional developmental traits as Newson and colleagues describe how DAP criteria starts from Passive Early History, which can involve Delayed Speech Development progresses into Continues to resist and avoid ordinary demands of life. Features of neurological involvement are present in infancy (Newson et al, 2003). These descriptions suggest the 3 developmental traits are neurodevelopmental in nature.

 

The remaining 2 traits tend to be seen in the trauma and attachment difficulties literature. Sensory differences can be found in trauma based constructs such as Attachment Disorder and can be experience transiently outside of trauma when a person is highly distressed; presently it is a judgemental call where sensory differences should be placed. My structuring of the Aggregated Profile is a work in progress that is subject to change as more research and information becomes available.

 

I think ultimately to appropriately stabilise the DAP profile we need much more research into it, investigating all 10 diagnostic traits in autistic and non-autistic populations. To do this we need to develop new screening and diagnostic tools for DAP, as the current validated tools [Extreme Demand Avoidance-Questionnaire (EDA-Q) (O’Nions et al, 2014), Extreme Demand Avoidance Questionnaire-Questionnaire for Adults (EDA-QA) (O’Nions et al, 2016), and 11 DAP items in the Diagnostic Interview for Social and Communication Disorders (DISCO)] only assess for several DAP diagnostic traits.

 

Most diagnosis of disorders in the DSM5 use information collected from various sources including semi-structured interviews or observation schedules. However, it seems have become accepted practice that DAP can be identified using the EDA-Q, for examples of clinicians using research tool in this capacity see Eaton (2019), Lyle and Leatherland (2018), Reilly et al (2014). The EDA-Q is only a research tool, it is not designed to be used to formally identify DAP akin to a diagnosis. One might assume then that DAP supporters would be OK if a supplementary checklist is used as part of DAP identification (there is substantial debate around if DAP can be formally diagnosed, primarily because of the lack of agreed diagnostic criteria and undetermined validity of instruments used to assess for DAP, for information see Moore, 2020). I currently have a prototype checklist under peer review that assesses for features in all 10 DAP traits, if this tool is used in sufficient quantities from either research and/ or clinical practice; synthesising the results from this tool should produce a clear picture of what features are essential for a DAP diagnosis and thus stabilise its behaviour profile.

 

My evolving perspective.

Since my recent articles have been published, I have changed my stance towards DAP. I accept that persons do meet the DAP profile (which ever profile a person prefers). Persons with DAP and their carers both require appropriate support. Upon wider reading and reflection, I recognise that all psychopathology constructs (Disorders such as Obsessive Compulsive Disorder and Autism Spectrum Disorder) are essentially arbitrary and circular in nature. The simple reason for this is that all constructs in the DSM5 are behaviour based, as they lack evidence directly linking a disorder to the body and as such they should not be treated too seriously (Rutter and Pickles, 2016). An example is the former Pervasive Developmental Disorder (autism subtype); Rett Syndrome was removed from the DSM5 due to evidence associating it to a specific gene (Thomas, 2017). Even so, the constructs described by the DSM5 can still have properties of natural entities. Most psychopathology constructs lack features that are unique to them and overlap each other (Rutter and Pickles, 2016). It seems a weak argument to value the integrity of already accepted arbitrary-based constructs above DAP; we should accept DAP as a stand-alone construct.

 

Despite this, for DAP to be clinically accepted it needs substantial amounts of good quality research. Non-circular scientific method research is urgently required to assist this process, for instance see Green (2020) for an example of why this matters. Crucially, one would expect DAP supporters to want the construct to have such an evidence base to prevent the construct being easily dismissed, if not DAP is essentially a chocolate fire guard (so to speak). There is an unresolved ethical debate in the DAP literature over how to view and treat the construct, until such time there is resolution to it, there will be a great diversity and polarisation over how to conceptualise and treat DAP.

 

My latest research.

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.

https://www.researchgate.net/publication/337146735_Demand_avoidance_phenomena_circularity_integrity_and_validity_-a_commentary_on_the_2018_National_Autistic_Society_PDA_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.

https://doi.org/10.1007/s10803-019-04287-4

A book chapter describing what the sub-discipline Critical Autism Studies is, I lead authored it and it can be found here:

https://link.springer.com/referenceworkentry/10.1007%2F978-1-4614-6435-8_102297-1

 

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:

https://www.openaccessautism.org/index.php/app/issue/view/4

 

References.

Allsopp, K., Read, J., Corcoran, R., & Kinderman, P. (2019). Heterogeneity in psychiatric diagnostic classification. Psychiatry Research, 279(209), 15-22.

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

Eaton, J. (2017). A guide to mental health issues in girls and young women on the autism spectrum: diagnosis, intervention and family support. London: Jessica Kingsley Publishers.

Eaton, J. (2019). Further exploring the PDA profile- evidence from clinical cases (Conference paper). Retrieved from: https://network.autism.org.uk/sites/default/files/ckfinder/files/Further%20exploring%20the%20PDA%20profile%20-%20evidence%20from%20clinical%20cases%20-%20Dr%20Judy%20Eaton.pdf  (Accessed 29 December 2019).

Evers, K., Maljaars, J., Carrington, S., Carter, A., Happé, F., Steyaert, J.,… Noens, I. (2020). How well are DSM‑5 diagnostic criteria for ASD represented in standardized diagnostic instruments? European Child & Adolescent Psychiatry. DOI: https://doi.org/10.1007/s00787-020-01481-z

Flackhill, C., James, S., Soppitt, R., & Milton, K. (2017). The Coventry Grid Interview (CGI): exploring autism and attachment difficulties. Good Autism Practice, 18(1), 62-80.

Green, J. (2020). Commentary: Anxiety and behaviour in and beyond ASD; does the idea of ‘PDA’ really help? – a commentary on Stuart et al. (2020). Child and Adolescent Mental Health. DOI: 10.1111/camh.12336

Lai, C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W.,…Ameis, S. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829.

Lyle, C., & Leatherland, H. (2018). Preventing school exclusion: a case study of a primary aged autistic child with ADHD and a PDA profile. Good Autism Practice, 19(2), 33-42.

Moore, A. (2020). Pathological demand avoidance: What and who are being pathologised and in whose interests? Global Studies of Childhood, 10(1), 39-52.

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.

O’Nions, E., Christie, P., Gould, J., Viding, E., Happé, F. (2014). Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): preliminary observations on a trait measure for Pathological Demand Avoidance. Journal of Child Psychology and Psychiatry, 55(7), 758–768.

O’Nions, E., Gould, J., Christie, P., Gillberg, C., Viding, E., & Happé, F. (2016). Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO). European Child & Adolescent Psychiatry, 25(4), 407-419.

Pellicano, E. (2020). Commentary: Broadening the research remit of participatory methods in autism science – a commentary on Happe and Frith (2020). Journal of Child Psychology and Psychiatry, 61(3), 233–235.

Reilly, C., Atkinson, P., Menlove, L., Gillberg, C., O’Nions, E., Happé, F., & Neville, B. (2014). Pathological Demand Avoidance in a population-based cohort of children with epilepsy: Four case studies. Research in Developmental Disabilities, 35: 3236–3244.

Rutter, M., & Pickles, A. (2016). Annual Research Review: Threats to the validity of child psychiatry and psychology. Journal of Child Psychology and Psychiatry, 57(3), 398–416.

Thomas, H. (2017). Beyond the Spectrum: Rethinking Autism (Online only article). Disability Studies Quarterly. Retrieved from: https://dsq-sds.org/article/view/5375/4551 (Accessed 02 March 2020).

Thompson, H. (2019). The PDA paradox: the highs and lows of my life on a little-known part of the autism spectrum. London: Jessica Kingsley Publishers.

Wing, L., Gould, J., & Gillberg, C. (2011). Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV? Research in Developmental Disabilities, 32(2011), 768-773.

Woods, R. (2019a). An updated interest based account (Monotropism theory) & a Demand Avoidance Phenomenon discussion (Conference paper). Available from: https://www.researchgate.net/publication/332727790_An_Updated_Interest_Based_Account_Monotropism_theory_a_Demand_Avoidance_Phenomenon_discussion (Accessed 02 March 2020).

Woods, R. (2019b). Demand avoidance phenomena: circularity, integrity and validity – a commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 20(2), 28-40.

Woods, R. (2020). 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

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