Pathological Demand Avoidance (PDA)
Elizabeth Newson developed the concept of pathological demand avoidance (PDA) to describe a subset of children referred to her clinic based in Nottingham, UK, in the 1970s (Newson et al. 2003), Newson applied the term PDA to children that were traditionally diagnosed as either having pervasive developmental disorder-not otherwise specified or atypical autism, yet both parents and clinicians thought these terms did not adequately describe the child’s presenting difficulties (Newson et al. 2003). Consequently, PDA was first proposed in 1980 as a distinct pervasive development disorder with the following behavior profile (Gillberg 2014): consistent resistance to every day demands, ease at role play and pretend, language delay due to passivity, lability of mood and impulsivity due to need for control, neurological involvement, obsessive behavior, passive early history, and surface sociability that lacks social identity/pride/shame (Newson et al. 2003).
The modern profile provided by a charity has been reduced by removing delayed speech development, neurological involvement, and passive early history (Green et al. 2018). This is due to focus on diagnosing PDA as a specifier for education support, producing autism spectrum disorder + PDA traits diagnosis by some UK clinicians (O’Nions et al. 2018). However, the higher prevalence rates being reported than Newson and colleagues originally observed (Green et al. 2018) are generating concerns about whether if these profiles are representing the same underlying condition. PDA is viewed as clinically useful (Christie 2007; O’Nions et al. 2016), due to its behaviors and educational needs being distinct from autistic persons. These will be explored later.
PDA is frequently contrasted against autism profiles, with growing interest arising from parents, clinicians, and educational practitioners (Christie 2007; Langton and Frederickson 2016). A medium size early investigation compared PDA to classical autism and Asperger’s syndrome. This study suggested that the following behaviors are more common in PDA than established autism subtypes (Newson et al. 2003): (1) strategies used for avoidance are socially manipulative, such as by distracting the adult, acknowledging the demand but excusing themselves, physically incapacitating themselves, retreating into fantasy and roleplay (these are examples of demand avoidance); (2) not identifying themselves as a child, (3) instantly changing mood, (4) taking on second-hand roles such as those of a teacher; and (5) their obsessions are often focused on other persons. Significantly, PDAers (preferred terminology of those identified with PDA) make more sustained eye contact than those with autism (Newson et al. 2003). Contemporary, research into demand avoidance behaviors that indicate that they could be described as strategic instead of “manipulative” and are also identified with many triggers of changes in mood or avoidance ranging from uncertainty to novelty (O’Nions et al. 2018); the latter is also expressed by autistic persons, highlighting the overlap between the PDA and autism profiles. While PDA has a behavior profile, this is not proof of it existence as a separate entity and so it has many competing ontologies which are discussed next.
As a proposed syndrome, there are various attempts to explain and categorize PDA, which due to its omission from the diagnostic manuals is fiercely debated, in part because of PDA lacking substantial and compelling evidence to settle the debates for its inclusion into the diagnostic manuals (Green et al. 2018; O’Nions et al. 2016; Woods 2017). Previously, PDA was not included in International Classification of Diseases 10th Revision, neither is it recognized in the 11th Revision of the International Classification of Diseases (World Health Organisation 2018). Some view PDA as a pervasive developmental disorder (Newson et al. 2003). The dominant ontology views PDA as part of the autism spectrum (Christie 2007; Langton and Frederickson 2016; O’Nions et al. 2018), as a consequence of commonly referring to umbrella pervasive developmental disorders as autism spectrum disorders. Additionally, arguing against debating it’s ontologically, as it distracts from diagnosing PDA and thus utilizing its strategies (Christie 2007).
PDA’s less widely accepted ontologies range from it being autism, a product of autism interacting with its comorbidities in a person (Green et al. 2018), a female form of autism, variations of attachment disorder or personality disorder (Christie 2007), and an expression of autistic trauma (Milton 2017). Particularly, the behaviors associated with the PDA profile overlap with common comorbidities in autism, specifically: attachment disorder (Milton 2017), anxiety disorder, attention deficit and hyperactivity disorder, conduct disorder, and oppositional defiant disorder (Green et al. 2018). PDA behaviors may eventually be shown to have heterogeneous origins and mechanisms involving many comorbid conditions (Gillberg 2014). Lastly, its’ cultural construction is being questioned, notably as the commodification of autism, by pathologizing autistic self-advocacy (Woods 2017), via the double empathy problem, and how different autism stakeholders frequently have different outlooks compared to each other, autistic persons self-agency is pathologized (Milton 2017).
Much of the ontology debates focus on the cause of high anxiety levels found in PDA. The dominant ontology, as a form of behaviorism (Milton 2017), views the high anxiety level to be intrinsic to the PDAer (Green et al. 2018). Conversely, its critiques contest that the demand avoidant behavior is caused by anxiety through an interactive, transactional process, wherein differences in the subjective experiences of PDAers render different types of activities aversive compared to the experiences of neurotypicals, promoting anxiety and avoidant behavior (Green et al. 2018; Milton 2017). Until an overwhelming empirical case is presented or it is adopted in the diagnostic manuals, there will be ample debate and confusion over the nature of PDA. Nonetheless, PDA has specific strategies and so potentially remains clinically relevant; for its diagnostic and screening tools, see O’Nions et al. (2014) and O’Nions et al. (2016).
Phil Christie assisted Elizabeth Newson in the development of PDA as a concept and later refined its educational strategies with input from staff at an autism specialist school (Christie 2007). The strategies for PDA include: having a specific keyworker to build a trusting relationship, making demands in an indirect way rather than using direct language, avoiding conflict, being flexible, adapting and negotiating by providing choices to pupils. Other recommendations were to develop a positive relationship, providing indirect praise, using humor to control the child, use of role play, novelty, and variety in lesson material to engage the child capturing their interest (Christie 2007). Newson et al. (2003) argued that these strategies are needed because traditional autism strategies emphasizing adherence to routines and structure reportedly do not work on those with PDA. Notably PDAers are disruptive in specialist autism classes and have high exclusion rates, necessitating these precise strategies, which is an important motivation for clinical recognition or diagnosis of PDA (Christie 2007). Pertinently, the PDA strategies are not to be practiced separate from autism strategies and each individual is to receive bespoke support.
Langton and Frederickson (2016) explore the educational needs of pupils with PDA, comparing their results to those for autism; their findings suggest that need for extra support for PDA is no more than that of autism and casts doubts about the need for an additional diagnostic label of PDA. Critique of PDA strategies include that in the time since Newson’s description of PDA, there has been a move away from rigidly practiced educational support to bespoke packages (Green et al. 2018). Milton (2017) argues that many of PDA strategies are suitable for other children and that many autism strategies do not work with autistic persons. Though for the foreseeable future its ontology is contested, there is an urgent need for more research into it and adoption of PDA strategies.
References and Reading
- 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.Google Scholar
- Milton, D. E. M. (2017). A Mismatch of Salience: Explorations of the nature of autism from theory to practice. Hove: Pavilion Publishing and Media Ltd..Google Scholar
- O’Nions, E., Viding, E., Floyd, C., Quinlan, E., Pidgeon, C., Gould, J., & Happé, F. (2018). Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’ demand avoidance. Child and Adolescent Mental Health, 23(3), 220–227.CrossRefGoogle Scholar
- World Health Organisation. (2018). ICD-11: The 11th revision of the international classification of diseases. Geneva: World Health Organisation. Available at: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/120443468.Google Scholar