Pathological Demand Avoidance: Unravelling the Complexities of a Debated Diagnosis

When Andy's parents seek help for their eight-year-old son's challenging behaviour, they are confronted with a perplexing and controversial term: pathological demand avoidance (PDA). Andy, who has autism, frequently responds to everyday requests with aggression, insults, and meltdowns. His parents, trapped in a cycle of conflict and failed attempts to provide structure, are left wondering what distinguishes PDA from the occasional defiance exhibited by many children.

PDA, a term introduced by British developmental psychologist Elizabeth Newson in the 1980s, is characterised by an extreme resistance to everyday demands, intense emotional reactions, obsessive behaviour, and a propensity to escape into fantasy worlds. While some consider PDA a subtype of autism, others prefer the terms "extreme demand avoidance" or "persistent drive for autonomy." The ongoing debate surrounding PDA highlights the intricacies and challenges of classifying and comprehending developmental differences.

Demand avoidance is a natural human trait that everyone experiences to varying degrees and for various reasons. When demand avoidance is more significant, there can be many possible explanations, including situational factors, physical or mental health issues, or developmental or personality conditions. It is crucial to recognise that while marked demand avoidance is the most significant trait in a PDA profile, it is not the only one.

Autistic individuals may avoid demands or situations that trigger anxiety or sensory overload, disrupt routines, involve transitions, or activities that they find uninteresting or pointless. They may refuse, withdraw, 'shutdown,' or escape to avoid these situations. Helpful approaches include addressing sensory issues, assisting individuals in adjusting to new situations, maintaining a predictable routine, providing ample notice of changes, or accepting that avoiding certain things is entirely acceptable.

However, pathological demand avoidance in PDA has some unique aspects. Many everyday demands are avoided simply because they are demands, and the expectation from others or oneself can lead to a feeling of lack of control, increasing anxiety and potentially triggering panic. Additionally, there can be an 'irrational quality' to the avoidance, such as a seemingly dramatic reaction to a small request or an inexplicable inability to eat due to hunger.

PDA demand avoidance is not a choice and is lifelong, observed in infants and persisting into old age. With understanding, helpful approaches from others, and the development of self-coping strategies, it can become more manageable. The avoidance can vary depending on an individual's capacity for demands at the time, their level of anxiety, overall health and well-being, and environmental factors.

Demands in PDA are numerous and cumulative, encompassing direct demands, indirect demands, internal demands, uncertainties, expectations, sensory overload, transitions, and even desirable activities. Recognising the pervasiveness of demands and their impact on individuals with a PDA profile is essential for understanding their challenges.

While debates over classification persist, the distress experienced by children like Andy and their families cannot be ignored. Beneath the challenging behaviours often lies genuine distress, difficulty coping, and underlying experiences of sensory overload, social confusion, and isolation. A comprehensive understanding of developmental processes is vital in providing effective support and intervention.

Early intervention, involving a multidisciplinary team of medical and allied health professionals, can significantly benefit children with complex developmental differences. A personalised approach that considers the child's unique social, sensory, and cognitive sensitivities is crucial. Strategies such as reducing demands, offering multiple options, minimising expectations, and engaging with the child's interests can help regulate their behaviour and reduce distress.

As children grow older and develop greater autonomy and self-control, problematic behaviours tend to decrease. Fostering self-determination through opportunities for building confidence, communication skills, and problem-solving strategies becomes increasingly important. This therapeutic work requires time, patience, and revisiting at different developmental stages, along with support for engaging in school and community activities.

For Andy and his family, a comprehensive assessment and personalised support plan can make a significant difference. By exploring Andy's perspective, experiences, and triggers, clinicians can help the family understand the complex interplay of developmental strengths, challenges, anxiety, and stress that contribute to his behaviour. With carefully planned supports at home and school, and the opportunity to engage in inclusive community activities, Andy can gradually spend more time engaged and experience less distress and avoidance.

The current scope for explaining and managing PDA is limited, and future research must prioritise the voices and experiences of children and adults with PDA symptoms. While the debate surrounding the classification of PDA continues, it is crucial to remember that the emotional and behavioural difficulties associated with this profile are distressing and challenging for both children and families. They deserve compassion, understanding, and practical support to navigate the complexities of their unique developmental journeys.

William Gomes, a British-Bangladeshi anti-racism campaigner,advocate for the rights of displaced people, and a contributor to various publications. He can be reached at [email protected].