PDA
Pathological demand avoidance (PDA) is most commonly understood as a profile on the autism spectrum characterised by an intense and involuntary, anxiety-driven need to control situations and avoid everyday demands. It is not formally recognised in the DSM-5 as a standalone diagnosis, but is recognised by clinicians as a distinct presentation of autism.
PDAers often resist demands such as waking up, getting dressed, washing and even eating. They may use creative avoidance strategies, such as negotiation, distraction, role-play or humour, rather than simple refusal.
These behaviours are often misunderstood as laziness or defiance, or as a result of parenting failures. It is easy to see that, as the child progresses through the education system, it may be more and more difficult for their difficulties to be correctly identified and supported. These often sophisticated strategies mean the young person appears socially engaged but may mask the fact that they lack understanding of social norms or hierarchies.
For more information about PDA, go to www.pdasociety.org.uk
Equalising behaviour, where the young person acts as if they are the adult and without any acknowledgement of a hierarchy between adults and children, may be particularly difficult to accommodate within a school setting.
In particular, if PDA presents with externalising behaviours, especially in boys, it may be mistaken for oppositional defiant disorder (ODD), but in contrast to ODD, which is a behavioural disorder, PDA is rooted in anxiety-driven, autonomic nervous system dysregulation. It comes from a deep-seated need for control in order to feel safe.
When demands become overwhelming, this can trigger intense fight, flight, freeze or fawn responses, including panic attacks or aggressive outbursts. Sustained difficulty can lead to complete shutdown, with the young person unable to engage with anything that looks like a demand, even a demand they have placed on themselves to do something they actually want to do.
The demands on the family are intense and can lead to a severe restriction in activities for the whole family, including siblings. Sleep may be disrupted, and relationships may be challenged because the young person focuses on one parent in particular.
Many in the autistic community prefer terms like pervasive desire or drive for autonomy, as ‘pathological’ may imply that the child or young person is flawed. Conceptualising PDA as a drive for autonomy, rather than avoidance, may give insight into the support strategies that are likely to be effective.
The team at ATTACH-Manchester have experience of working with young people with PDA, as well as lived experience as a parent of a PDAer and as a PDA adult. We work with the family and with involved professionals in CAMHS and other services to develop bespoke provision that creates safety and minimises pressure by adapting routines and expectations, and using declarative language. We aim to create a predictable, secure relationship and allow the young person a sense of agency, which enables the young person to remain regulated and engage autonomously with activities. A creative small-steps curriculum helps them flourish and allows us to create opportunities for access to the core learning.