Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA)

PDA in a Nutshell

In the 1980’s, Elizabeth Newson noticed patterns in children who didn’t fit the usual autism presentation, but when told they ‘must’ do something, they had a meltdown. Elizabeth named this pathological demand avoidance, and claimed it should sit on the autistic spectrum. Pathological Demand Avoidance is said to be a behavioural profile, often seen in autistic people. Although you cannot get a standalone diagnosis of PDA, as it is not clinically recognised nor included in the DSM-5, it is often labeled as Autism with PDA profile.

How does PDA show

This is shown as a persistent resistance to an everyday task (avoidance of the demand). The demands can be from an external factor such as, parents asking for something to be done (‘put your shoes on’), or an internal demand, such as the feeling of needing to go to the toilet.

For the person with PDA, they can have difficulty getting to sleep, staying asleep and getting up, difficulty with personal care tasks (hygiene, eating and cleaning), difficulty regulating emotions and with friendships and this can have major affects on school and work life.

Reactions to these demands, are shown as diversions from what is to be expected, this could be humorously, complete shutdown, or aggression. Research opinions differ, as this is an area with limited research. Some say that it may be connected to the need for control, others say this can be due to the anxiety of the unknown surrounding the task that has been asked.

The Label

Many families report, extreme burn out, poor affects on school/work life and the mental health of the person at the centre, when their needs are not met. Families see their loved on under extreme distress, challenged daily and exhausted. This adds to the stress of everyday life for these families, fighting to get the right support within health, education and social aspects. The lack of a ‘label’ leaves the person unsupported and strategies not put into place to aid their needs.

What can help

Some research and seasoned experience merge the ideas that low-demand and low-arousal strategies can help. Make tasks seem smaller buy asking one small task at a time, instead of ‘go and clean your room’, choose to word this in a different way, to make this feel smaller, ‘shall we put the books away or the toys?’. Working together can help, rather than giving commands. ‘I’m going to put my shoes away, have you moved yours yet?’ ‘Can we do the washing up together?’

Communicating in different ways, rather than repeatedly asking for something to be done, try visual cues, or asking the person which task they would like to do first. Reducing external stressors can help, we don’t need to sit and observe the job being done. Reduce noise, crowds or smells. Plenty of praise helps.

Whatever your view of PDA, and whether it should sit within the autism profile or as a stand alone diagnosis under the neurodiverse umbrella, the reality for many struggling families and schools is the same. Until the research catches up and clearly shows solid evidence of how this can be helped, we rely on outside-the-box thinking, empathy and an understanding.