When every must becomes a test of endurance

Parents are under constant stress and feel helpless when their child constantly refuses, persistently resists and says no to every request, every demand. In some cases, this behaviour can be so pronounced that it leads to a clinical diagnosis. Children who show a constant pattern of negative, defiant or even hostile behaviour towards parents, teachers or other adults may suffer from oppositional behaviour disorder.

If a child also frequently displays aggressive or socially unacceptable behaviour, bullies other children or animals, repeatedly lies and steals, i.e. goes well beyond age-appropriate mischief, a social behaviour disorder may be present.

In recent years, another concept has been increasingly recognised: pathological demand avoidance (PDA). Children with PDA often behave very similarly to those with an oppositional behaviour disorder or a social behaviour disorder in everyday life, so they are frequently given such diagnoses. Unfortunately, they and their families do not receive the specific support that would be required for their particular situation.

What is PDA?

Pathological Demand Avoidance is not currently recognised as a diagnosis in its own right, but is rather defined as a specific behavioural profile. It is mainly characterised by an extreme and pathological rejection of demands. The term was coined in the 1980s by developmental psychologist Elizabeth Newson at the University of Nottingham, who worked intensively with autistic children. Her research group considered PDA to be a rare variant of the autism spectrum, which led to the term PDA autism.

The view that PDA and autism belong together is controversially discussed in research, but is shared by many practitioners who deal with PDA. For example, psychiatrist and psychotherapist Nicole Chou-Knecht, Co-President of the Swiss PDA-Autism Profile Association. She emphasises: «In my experience, children with PDA behaviour are also on the autism spectrum. However, PDA is often a highly masked autism spectrum disorder. This means that those affected are able to «function» appropriately and adaptively in many areas through extraordinary efforts, so that their deficits are not obvious to others.»

Children with PDA describe a feeling of intense anxiety when they lose control or are confronted with a demand.

In contrast to children with oppositional defiant behaviour, children with PDA behaviour not only rebel against authority, but simply refuse to comply with any request. This means practically every action that is associated with a «must» or «should».

These can be requests or requests made by other people, social demands, but also everyday tasks such as getting up, getting dressed or brushing teeth, right through to basic needs, so that some people are barely able to eat, drink or take care of their hygiene, for example.

They may also suddenly refuse to set off for a favourite hobby or an outing that the child has been looking forward to, simply because the appointment is in the diary or they have to leave now - and this is therefore seen as a requirement.

Fear of losing control

While many children resist demands and are reluctant to brush their teeth, for example, or only get up in the morning after being asked to do so several times, the avoidance behaviour of children with PDA is extremely exaggerated. At first, affected children tend to use avoidance behaviour that still seems socially appropriate: they try to distract themselves, engage adults in conversation or start daydreaming.

If the other person insists on the task, the children's resistance becomes more extreme: they run away, scream, lash out or even hurt themselves. In contrast to children with oppositional behaviour, children with PDA often show no sense of shame and put their parents in highly embarrassing situations.

For children with PDA, it is often precisely those procedures that appear illogical at first glance that make sense.

At the same time, affected children tend to control others. They want to decide who does what, who sits where or what they eat. Many of those affected describe a feeling of intense anxiety when control slips away from them or they are confronted with a demand.

This fear can escalate into a panic attack or mental breakdown. PDA sufferers emphasise that this is not a defiant reaction or conscious avoidance that is subject to their control or decision - rather, it is a case of «not being able to do anything else».

Set fewer rules

Parents of affected children and adolescents are under extreme pressure and often go through a long ordeal. Many of the usual parenting strategies fail with their children. Professionals are often at a loss and cannot understand the children's behaviour.

Parents are almost always accused of not educating their child at all, not educating them enough or educating them incorrectly. However, it is often precisely those approaches that seem illogical at first glance that make sense with these children.

Those affected do not seem to benefit from a lot of structure, rituals and clear rules, as is often recommended, but rather from parental guidance, which is referred to as a low-demand parenting style. Psychiatrist Nicole Chou says: «This parenting style does not mean that you no longer make any demands on the child. Rather, the first step is to reduce the rules to the absolute minimum necessary and thus relieve the child's constantly overstimulated nervous system.»

It is relieving for parents when they realise that the child is not «trying to behave badly», but is fighting back out of fear and excessive demands.

Children with PDA behaviour also benefit when requests are negotiated or several alternatives are offered («You could wear these trousers or these») and unpleasant tasks are completed together. Instead of direct requests that provoke resistance, indirect approaches often help, in which instructions are integrated into a role play, for example, with a toothbrushing parade, a mermaid bath or a royal supper.

Above all, however, it is relieving for parents when they realise that the child does not «want to behave badly», but is fighting back out of fear and excessive demands - and that authoritarian, punitive or even just «consistent» insistence on rules exacerbates the situation.