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From Luke’s Journal Nov 2024 | Vol.29 No.3 | Mental Health II

Pathological Demand Avoidance (PDA) is a controversial profile that has gained increasing attention in recent years, particularly within the autism community. This article explores various aspects of PDA, including its history, different theoretical frameworks for understanding it, geographical differences in its recognition, some treatment implications and the controversies surrounding it.

History

The concept of Pathological Demand Avoidance was first introduced by Elizabeth Newson in the 1980s. Newson, a developmental psychologist at the University of Nottingham, observed a group of children who displayed a distinct set of behaviours that did not fit neatly into pre-existing diagnostic categories. These children showed a need to avoid or resist everyday demands and expectations, often using social strategies to do so.

Newson and her colleagues published their initial findings in a 2003 paper, describing PDA as a pervasive developmental disorder distinct from, but related to, autism (Newson et al., 2003). They characterised PDA by several key features:

1. An obsessive resistance to everyday demands

2. Use of social strategies to avoid demands

3. Surface sociability, but lack of social identity, pride, or shame

4. Lability of mood and impulsivity

5. Comfortable in role play and pretend

6. Language delay, often with a good degree of catch-up

7. Obsessive behaviour

8. Neurological involvement (e.g., clumsiness, physical awkwardness)

Since Newson’s initial description, PDA has been a subject of ongoing research and debate within the autism and broader psychological communities. There is no agreed upon framework for understanding PDA. The most common are outlined below.

Anxiety Framework

The most widely accepted framework for understanding PDA is rooted in anxiety. This perspective suggests that the extreme avoidance behaviours characteristic of PDA are driven by an overwhelming anxiety response to demands or expectations. The anxiety then leads to avoidance behaviours. The anxiety is often related to a fear of failure, uncertainty or a loss of perceived control. Newson et al. suggest that individuals with PDA often show a remarkable interest in and ability to engage in role-play as a coping mechanism in order to deal with the anxiety provoking stimuli. Researchers like Elizabeth O’Nions and Francesca Happé have contributed significantly to this understanding, suggesting that PDA might be best conceptualized as an anxiety-driven need for control (O’Nions et al., 2016).

Trauma Framework

More recently, some professionals have begun to explore PDA through a trauma-informed lens. This perspective suggests that PDA-like behaviors could be understood as responses to trauma or chronic stress (Miller, 2021). In this framework, extreme avoidance behaviours can be seen as coping strategies developed in response to overwhelming stimuli. Social strategies employed by individuals with PDA could be adaptive responses learned to navigate challenging environments. The ongoing emotional dysregulation may then be related to traumatic experiences and/or chronic stress. This trauma could be subtle (i.e. deemed as not traumatic by other individuals), cumulative, related to misunderstandings, sensory overload or other challenges associated with being neurodevelopmentally atypical. This approach often results in a more compassionate understanding of and intervention to PDA behaviours, viewing them as adaptive responses to traumatic stimuli rather than wilful disobedience.

Polyvagal Framework

Some professionals have begun to apply polyvagal theory, developed by Stephen Porges, to understanding PDA. This theory provides a neurophysiological framework for understanding how the autonomic nervous system responds to perceptions of safety, danger, and life threat (Porges, 2007). In the context of PDA, demand avoidance can be conceptualised as a response to perceived threats. The social strategies employed by individuals may be attempts to engage the social system in order to mitigate perceived threats. The shutdown behaviours or emotional dysregulation can be understood as a dorsal vagal response when other strategies fail, often appearing as attempts to flee or to demonstrate dominance as reptilian brain responses. This approach to PDA always comes with a warning about a behaviourist approach to PDA as they can increase rather than decrease the perception of threat, and a consistent finding among PDA researchers observe that behaviourist approaches tend not to be effective.

This framework is still in its early stages of application to PDA and requires further research and validation, which is true of all polyvagal theories.

Geographical Differences

The recognition and understanding of PDA vary significantly across different countries. In the United Kingdom, PDA is widely recognised and discussed, with the National Autistic Society acknowledging it as a profile within the autism spectrum (National Autistic Society, 2024). Many UK clinicians consider PDA in their assessments and diagnoses, and a significant portion of PDA research originates from UK-based researchers. Many schools and educational psychologists in the UK recognise PDA and adapt their strategies accordingly.

In contrast, PDA is less widely recognised in Australia compared to the UK. Major autism organisations in Australia do not officially recognise PDA as a distinct profile, and most clinicians do not routinely assess for or diagnose it. There is limited Australian-based research that is specifically focused on PDA, and schools and educational psychologists generally do not incorporate PDA-specific strategies in their approach to autism support.

The United States shows even less recognition of PDA than in Australia. Major autism organisations in the US do not officially recognise PDA, and most clinicians are unfamiliar with the term or concept. There is very limited US-based research on PDA, and it is not typically included in professional training programs for psychologists, psychiatrists, or special educators.

These geographical differences highlight the ongoing debate about the validity and utility of PDA as a distinct profile or diagnosis (Green et al., 2018). They also underscore the need for more international collaboration and research to better understand and address the needs of individuals who may fit the PDA profile.

Controversies

PDA remains a controversial topic within the autism and broader psychological communities. This is because there is ongoing discussion about whether PDA is a distinct syndrome, a profile within autism, or a collection of symptoms that may occur across various symptoms or because of aspects of the family system (Egan et al., 2019). There is a lack of large-scale, controlled studies into the concept (Woods, 2019). However, that is likely to change in the near-medium future. There are many concerns amongst some professionals about the potential for misdiagnosing trauma or other responses as PDA.

My own observation is that there are also debates about the most appropriate way to treat PDA, which can be influenced by the social and political views or the personal experiences of the PDA experts, who are more often than not based in the social media world. My experience is that most interventions on social media are overwhelmingly about changing a child’s environment so that they are not exposed to anxiety-provoking stimuli.

Treatment Implications

The conceptualisation of PDA can have a significant impact on the recommended treatment goals and methods for individuals with PDA. If one conceptualises PDA as an anxiety response, then it might be reasonable to recommend an exposure type of therapy. If it were a trauma conceptualisation, then a trauma informed approach that used a safe attachment and regulatory strategies might be the prescribed treatment. Alternatively, if a polyvagal conceptualisation was utilised then something akin to the PACE model (playfulness, acceptance, curiosity and empathy) from Dan Hughes might be recommended.

Furthermore, there are philosophical differences amongst psychologists and other treating professionals when it comes to recommending treatments. Often, when working with people who are suffering, and especially children, there comes a dilemma where one needs to consider whether to change the world for the child or the child for the world. The growth in the appreciation of the neurodivergence and affirming practices has brought a corresponding growth in ‘change the world for the child’ approaches for treating PDA especially. However, in the long-term there is a possibility that the ‘change the world for the child’ treatments might inadvertently support the avoidance of stressful stimuli. Too much avoidance of stressful stimuli may result in an anxiety disorder (or may be a simple definition of an anxiety disorder) and ultimately might lead to more harm to the child. This is, however, still a controversial matter without consensus amongst treating professionals.

All treating professionals would agree that the creation of safety within a good attachment system is critical to the treatment of PDA (and all mental health issues). Once safety is established, it can often be beneficial to explore what a child is capable of in the ‘scared but safe’ zone. In my opinion, this is where there will be disagreement amongst professionals. Some will be comfortable with exploring the ‘scared but safe’ zone and others would be less comfortable, preferring to make extensive changes to the environment in order to accommodate the distressed child. In the ’scared but safe’ zone, within a good attachment, recommended strategies include but are not limited to; using humour, role plays, indirect praise, maintaining a flexible approach, avoidance of power struggles, wondering out loud, offering choices, and treating anger as communication (Carlile, 2011).

PDA and Christianity

This is an interesting issue to consider from a Christian perspective. As Christians, we are called to discipline children well. Proverbs 22:15 says “Folly is bound up in the heart of a child, but the rod of discipline will drive it far away.” This might be a relevant verse in that perceiving threats when there are no actual threats might be conceived of as folly. The appropriate response is discipline so that the folly is driven away. However, stories abound of parents who have used overly harsh discipline in the name of Christianity and have damaged children. There are verses that warn against harsh discipline like Eph 6:4 (“Fathers, do not exasperate your children; instead, bring them up in the training and instruction of the Lord.“) and Col 3:21 (“Fathers, do not embitter your children, or they will become discouraged.”). The Bible reveals God’s loving and merciful character in passages such as Ex. 34:6-7, Ps. 103:8-13, John 3:16, 1 John 4:8, Jer. 31:3, and Zeph. 3:17, which collectively portray a merciful, gracious, and faithful God.

There is a lot of space in Christianity for nuanced arguments emphasising different ways of conceptualising PDA and justifying various treatment options. Some might place emphasis on discipline, whilst others may focus on mercy and kindness. What is not justifiable in Christianity or psychology is overly harsh approaches to children. What is also hard to justify from a Christian perspective is making endless adjustments to a child’s environment so that they are never exposed to anxiety provoking stimuli. It is neither true nor kind to inadvertently reinforce to a child that perception of their environment is threatening when the threats are not necessarily in keeping with reality. Between these two extremes lies the space for wisely intervening in order to help children thrive. The verses mentioned seem to suggest that a Christian doctor or psychologist should view a child with PDA in the same way they would any other child – that each needs kindness, mercy and wise direction from an adult that cares about them. The research in regards to PDA can add some more educated directions in helpfully intervening with children displaying PDA.

Conclusion

Pathological Demand Avoidance presents a complex and multifaceted profile that continues to challenge our understanding of neurodevelopmental conditions. While controversies persist, the various frameworks for understanding PDA – from anxiety-based to trauma-informed and polyvagal perspectives – offer some valuable insights that may inform more effective support strategies. The Christian perspective can provide a helpful approach in that it can balance warmth, kindness and mercy with helping children with PDA develop their ability to match their emotions to the real world with more consistency.

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• Carlile, J. (2011) “Helping your child with PDA to play: Eight strategies for supporting a child with Pathological Demand Avoidance Syndrome at home, Good Autism Practice, 13(2): 51-55.
• Egan, V., Linenberg, O., & O’Nions, E. (2019). The measurement of adult pathological demand avoidance traits. Journal of Autism and Developmental Disorders, 49(2), 481-494.
• Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., & Baird, G. (2018). Pathological Demand Avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health, 2(6), 455-464.
• Miller, A. (2021). Pathological demand avoidance: Is it time to move beyond the pathological model? Good Autism Practice, 22(1), 59-70.
• National Autistic Society. (2024). Pathological Demand Avoidance (PDA). https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/pda
• 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. (2016). 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, 57(6), 666-672.
• Porges, S. W. (2007). The polyvagal perspective. Biological Psychology, 74(2), 116-143.
• Woods, R. (2019). Demand avoidance phenomena: circularity, integrity and validity–a commentary on the 2018 National Autistic Society PDA Conference. Good Autism Practice, 20(2), 28-40.