What is Pathological Demand Avoidance (PDA)?

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 the children shared some common challenges with autistic children 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.’

An individual with a PDA profile is now recognised to be autistic; the triage of challenges (social interaction, communication and imagination) are all underlying factors that meet the autism diagnostic criteria.  However, PDA’ers 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.

 
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’s more than that old saying of someone ‘not liking the sound of no.’ PDA goes far deeper than that as it is in-built threat to the nervous system and basic everyday demands become unmanageable.

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 profile with a government-endorsed educational guide to better support students.  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.  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 interact with the child.  Understanding the ‘won’t‘ is actually a ‘can’t‘ is essential to altering a parental mindset and being willing to change our focal lens is essential for the child/young person to feel happy and to flourish.

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 realigning our parenting and what we already know, 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/support individuals so that the right environment can help them thrive.  This will only come with acceptance, research and knowledge.

We hope that our posts will continue to show what it is like to live with PDA from a range of perspectives and if you would like to dig deeper into this then we have a webinar for this specific topic.

For a more in depth discussion on this subject, why not take a look at our PDA Parenting webinar?

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