Pathological Demand Avoidance (PDA) was a term first penned in the 1980’s by Professor Elizabeth Newson. She began investigating a complex group of children who were similar to each other but confusing to professionals in that they reminded them of children with ‘Autism’ or ‘Aspergers Syndrome,’ yet were not so typical in their presentation.
However, in studying these individuals she began to notice some similarities that all of the children shared – the central feature being ‘an obsessional avoidance of the ordinary demands of everyday life.’
PDA is now considered to be part of the ASD family (Autistic Spectrum Disorder) in which a person who suffers with PDA will share the same difficulties as other Autistic disorders, this being the triage of impairments (social interaction, communication and imagination). However, a person with PDA may appear very sociable and may adopt coping strategies so that they mask their difficulties in certain environments. This can leave parents even more confounded and isolated in their struggle to help their child.
Some key features of PDA are:
- Resisting and avoiding the every day tasks of life
- Surface sociability, but with lacking depth to their understanding
- Excessive mood swings and extreme impulsive behaviour
- Comfortable in role play and pretend – often marring the lines of reality and fantasy
- Language delay – often with a great deal of catch up
- Obsessive behaviour which can often be focussed on key individuals
A person with PDA may often seem very challenging and extreme in their behaviour, yet in an instance switching to a different personality (leading parents to often describe them as a ‘Jekyll and Hyde’ character). What is important to remember when dealing with a PDA child is that at the core of the condition is an anxiety-based need to be in control. This anxiety not only prevents them from engaging in new experiences but often ones that they actually enjoy too, which shows that it can often debilitate the sufferer’s life.
PDA is still yet to be added to the latest edition of the psychiatry handbook professionals use in this country, even though it is a recognised disorder. It is therefore a postcode lottery as to which counties will recognise and diagnose PDA which leaves many families (like us!) on an uphill battle to get to the bottom of their child’s difficulties. It is vital to get to the root of the condition. Many parents/professionals will find that using traditional ‘Autism’ strategies will have little/negative impact on their children, therefore it is paramount to start using a non-direct/more flexible approach to interacting with the child. Educational guidelines can be found on the PDA Society website.
When talking to other parents who have found this diagnosis for their child, they will often refer to it as finding ‘the holy grail’ or ‘having a light bulb moment.’ This certainly did happen for us when we stumbled upon the key features described. At last, we had found something that could profile our child who had baffled others. Speaking on behalf of many parents out there, I know that they will agree that it is an emotionally/mentally exhausting experience – not only are we left to struggle though the process of parenting at the extreme, but we also have the hidden pressure to discover what is causing the difficulties (only to be told it is not recognised where we live!). Many parents go through the ‘parent blame’ game, like we have done, or to be told to go on parenting courses. These traditional parenting programmes will not rectify the daily challenges our children face.
Hopefully, in time, PDA will achieve a better awareness and we are able to help the children suffering out there with no voice to be heard. This will only come with acceptance, research and knowledge.