There is a great deal of speculation and confusion surrounding Pathological Demand Avoidance, PDA, ranging from its validity as an independent diagnosis to its characteristics and to its cause.
This is due to the fact that, as a label/diagnosis, it is still in its infancy and there has been very little research or studies into it.
My aim is to help you to understand PDA (as far as the current findings are), what PDAers experience and how you can help to support the PDAer in your life.
Going back to the beginning;
PDA was first coined in 1980 by Elizabeth Newson who was working in the Child Development Research Unit at the University of Nottingham at the time. Over the span of six years, she had identified twenty one children who displayed many autistic traits but were not diagnosed as autistic due to the fact that other characteristics were different to what autistics at the time were experiencing (good eye contact, imaginative play, good level of social interaction and capabilities). These twenty one children all had the same characteristics as each other so she concluded that it was a label in its own right under the diagnostic umbrella Pervasive Development Disorder (the same category as autism spectrum disorder) but was not autism itself, even though it shared many similar traits.
Below is a table that Elizabeth Newson created in 2003 to show the key characteristics of PDA and how they differ from those of Autism and Aspergers (as this was still a diagnosis in its own right at the time).
Table 1 Defining criteria for diagnosis of pathological demand avoidance syndrome (with descriptive notes and comparison with autism)
In 2013, Elizabeth O’ Nions et al ran a study to examine the behavioural profile of PDA children in comparison to children with autism and also children with conduct problems and callous-unemotional traits. She chose these three groups because of the fact that PDA children appear to have traits from both conditions.
In 2013, Elizabeth O’ Nions et al ran a study to examine the behavioural profile of PDA children in comparison to children with autism and also children with conduct problems and callous-unemotional traits. She chose these three groups because of the fact that PDA children appear to have traits from both conditions.
The study involved 25 children diagnosed with PDA (using Newson’s criteria as above), 39 children diagnosed with ASD and 28 children diagnosed with conduct problems and callous-unemotional traits. The data for the study was gathered through three different questionnaires; Strengths and Difficulties questionnaire, Childhood Autism Spectrum Test and the Anti-Social Process Screening Device.
The results of the study found that although PDA does have characteristics from both ASD and conduct problems and callous-unemotional traits, the standard techniques that work with these groups do not work with those with PDA. It also found that there are characteristics within PDA that do not fit into either of these groups.
‘While these findings could indicate that the PDA group has an ASD with co-morbid conduct problems, plus additional extreme emotional symptoms, this does not fully accommodate the main difficulties in PDA. Specifically, poor social cognition associated with autism appears inconsistent with instrumental use of social manipulation.
Impoverished imagination in autism is inconsistent with role play and excessive fantasy engagement in PDA. While children with conduct problems may resist complying in order to persue their own interests – for example to avoid a task they dislike – obsessive avoidance of even simple requests, regardless of the personal consequences, goes beyond this’ (O’ Nions 2013)
Another possible comparison they draw is that the motivation behind the behaviours (between PDA and callous-unemotional traits and conduct problems) is notably different. With conduct problems it is more about their want, will and personal gain whereas with PDA it is a pathological need to be in control; regardless whether it means that they will get/do what they want or not.
Bringing us back to the current day; Dr Judy Lyons (consultant clinical psychologist and clinical director) is the latest to delve into the diagnostic criteria and profile of PDA and has worked with the PDA Society.
She has amended Newson’s original criteria to remove the language delay (with fast catch up) and the neurological involvement and has included sensory difficulties, with a focus on Interoception; the ability to recognise internal messages such as hunger, thirst and needing to use the toilet; a commonly reported issue with PDA children.
Below is a diagram which may be easier to interpret as it shows the main differences and aspects of PDA and ASD.
One common aspect of ASD is often a cause of confusion about PDA and that is demand avoidance.
The majority of autistics suffer from demand avoidance to an extent; this avoidance increasing with the level of stress that they are experiencing.
However, those with PDA do not simply have extreme demand avoidance which is affected by stress levels. Their demand avoidance can apply to every single instance where they perceive a demand; this could be getting up in the morning, eating, drinking, going to see a movie that they have been really looking forward to going to, playing with a new toy etc. It is uncontrollable and all encompassing.
In recent months, PDA has become a buzz word that is thrown around when someone is explaining their demand avoidance. Other than representing their own struggles incorrectly, doing this also undermines what those with PDA actually suffer and experience in daily life, as well as the struggles that their families endure.
PDAers are masters of demand avoidance in that they are skilled at making excuses or using distraction techniques to avoid any demands put on them.
These techniques can include; procrastination, manipulation, negotiation, hurting themselves so they are unable to complete the request, withdrawing into a fantasy world or physically attacking the person making the request or demand. The violence is often used when their anxiety levels are high and they don’t think that any other form of avoidance will work or that their emotions and anxiety peak and they have an explosive meltdown.
Another difference here between autistics and PDAers is that autistics don’t use social techniques to avoid demands (like PDAers do); they often either ignore, walk away or withdraw from the conversation or situation.
PDAers, like autistics, suffer from a high level of anxiety. Though autistic anxiety is born of a fear of the unknown, lack of routine or things not going as planned (generally speaking) whereas PDAer’s anxiety is born of an overpowering need for control. This need for control dictates every aspect of their life, and that of their families.
Another difference between those with autism and those with PDA is that PDAers can appear to have far greater social understanding and communication skills compared to their autistic counterparts though, unfortunately, it is often the case that their level of understanding is far lower than what it appears to be.
PDAers often learn from a young age to watch and mimic their peers in order to fit in or be accepted. They also often learn a number of social niceties or polite responses in order to appear more socially intelligent than they truly are.
I have heard the phrase that PDAers have a super mask (like a superior form of autistic masking) where they can appear far more at ease and in control of social situations that would make their autistic peers incredibly uncomfortable. This super mask is used as a control tactic; a way to lower their anxiety and be able to cope in that situation by acting and appearing like they fit in with those around them even though, inside, they are drastically different.
Unfortunately this can sometimes come across as controlling or dominating; especially if their anxiety levels are high, as they desperately try to gain control of a situation that is beyond their control.
When I was young, every time any boy asked me out, I automatically said “no” even if I really liked them and wanted to go out with them. After I turned them down, I would think about it for a few days and if it was someone that I really liked, I’d go back to them and ask them out; all in order to be in control of that situation. At that point in time, that was a subconscious instinct on my part but, looking back, I can see how that was an avoidance tactic that I used a lot in my youth.
Like those with ADHD; PDAers tend to be quite impulsive in their decisions and actions, unlike other autistics who much prefer a more rigid and predictable routine in place.
An interesting theory that I have recently heard is that PDA could be a combination of ASD, ADHD and SPD (Sensory Processing Disorder).
This would cover the autistic aspects of PDA, the impulsivity and liability of mood of ADHD and the sensory difficulties of SPD. Though I still believe that these three conditions do not entirely cover all of the characteristics of PDA.
One thing that has been reported by many families of PDA is that the techniques that work with autistic children are the opposite of what works with PDA children.
These include things like the fact that autistic children tend to respond well to and need a rigid routine and clear instructions whereas PDA children respond best to having no routine at all and a very child led approach with zero demands.
Most PDA children do not cope well with schools as they are unable to comply with the rules and regulations that the school applies; making the PDA children lash out in an avoidance attempt or they could hold it in until they return to the safety of their home and then they unleash all of their emotions in one go.
As it stands, a great deal more research and study needs to go into PDA; whether it is an autistic profile, a diagnosis in its own right away from autism or if it is autism with a number of co-morbid conditions.