PATHOLOGICAL DEMAND AVOIDANCE
PDA stands for Pathological Demand Avoidance. It is not a universally accepted diagnosis but we are slowly catching up in the UK. At the moment some professionals in the UK will be able to offer a diagnosis of PDA, but only if there is an existing / co morbid diagnosis of an Autism Spectrum Condition. PDA is something which we have been discussing for many years, trying to raise awareness of the challenges it brings and the under diagnosis of it especially in girls.
The title of PDA does not reflect what is going on for our children (and teens and adults) who struggle with this condition. In our opinion, the label really does not do justice to the intense challenges having this condition brings to the table not just to the individual but to the family around the individual. In our experience, the label of the condition is often met with presumption and oftentimes ridicule. There have even been SENCOs and head teachers who have told us that the condition does not exist. It is not uncommon for people to respond to the label with “she just does not want to to what she is told”. This is not the case for those who face the challenges which having traits of PDA bring. PDA is an anxiety based disorder which stems from the individual desperately wanting to be accepted, to fit in and to do what is expected of them. There is a mismatch between what they want to do or others want them to do (the perceived demand) and what they can do. This can be very confusing for them and for their family members. We have seen that when family members, those around the individual and the individual themselves get a true understanding of their challenges their whole perception shifts. A true understanding allows individuals to be able to put things in to place themselves and to be able to become the driver in their life. Understanding, compassion and autonomy are complete game changers. This makes a massive difference in outcomes and can become the difference between completely shutting down and thriving. There is often a big focus on ‘challenges’ and ‘gaps’ and ‘weaknesses’ and although an understanding of these is important, a thorough understanding of strengths to be harnessed is perhaps even more important. Although it is difficult to diagnose children at a young age in the UK, we can certainly have treatment plans and interventions for those young children who are at risk of developing PDA as well as those who are showing traits. You will do no harm in parenting a child as though they have PDA if they do not have it. Great damage is done when a child is incorrectly parented or misunderstood by those around them if they do have PDA.
Children with PDA are often extremely bright. They are more often than not gifted and talented in areas. Unfortunately some of these children don’t have their gifts and talents discovered or revealed. Our children with PDA may well be extremely vocal and have a huge amount of language which can make understanding what Is going on for them very hard for family. We have had children who have been non vocal but been taught language through intervention and they then go on to develop PDA once they are fully vocal, but in this case we are already in touch with the family and we can see traits and intervene early.
There is always a social element of challenge with PDA, whether the individual recognises it or not.
There is always a challenge in the area of ‘overload’ and ‘overwhelm’. Understanding an individual’s profile completely is absolutely key to success.
There is always an area of language and communication which has some gaps or complete gaps. This has often been covered up by some tall order skills, and the child appearing to be conversation, however the gaps will make communication a little odd in places and will make the individual towers of communication wobbly.
Your child with PDA will likely have some very strong interests as well as aversions, but these may be social or nuanced and not rear their head until later on due to effective masking. Masking is nearly always present.
Your child with PDA will very likely have another diagnosis/label/traits/challenge. This may be ADHD, ADD or dyslexia. One of our children has ASD with PDA, ADHD and severe dyslexia as well as some sensory processing challenges. This is not uncommon. Ignoring the PDA and having a treatment plan ignoring the PDA but following intervention solely for dyslexia or ADHD can be damaging, so using a practitioner or team who have a full handle on PDA will prove extremely helpful.
Children who have traits of PDA can seem like adults trapped in a child’s body. This is because individuals with PDA or traits of PDA do not see age. They do not see hierarchy and they do not see authority as other children and individuals may do. Children with traits of PDA or a diagnosis of PDA see and feel safety and act accordingly. They do not see hierarchy and authority, but simply those people (and places) they feel safe around (or not).
If you say to a child who has traits of PDA, “calm down” when they are enraged; “You can’t do that it is dangerous”; “you are too young”; “that is rude”; “ that is inappropriate” it has little or no meaning to them at all. Your child may say something seemingly out of place or even outrageous in response to your perceived demands or your rules. For example, “you are a witch”; “fxxx off”; “you are ruining my life”; “your rules are ruining my life”. They may engage in behaviour either in response to something said or done, or to social overload, social hangover or exhaustion which seems entirely out of place and a complete over reaction. Neurotypical children will often just accept the concept of ‘doing what they are told’, particularly in education settings because that is ‘just the way it is’. A child with PDA will neither see this invisible concept, nor will they understand the concept of ‘ because I said so' just because you are an adult. Trying to tell a PDA child that they “should” do something may well illicit the response of, “you’re not the boss of me!”
Children with PDA are constantly striving for autonomy and freedom. This will be seen from an early age. This should form a significant component of their intervention. Equipping a child with safe boundaries and safe autonomy is another game changer. The language we use and our own perceptions will pay dividends.
Children with PDA will see rules as senseless demands if there is no sense to be made of them.
Children with PDA need to form positive connections with people that are genuine and safe. Rapport and continuity are everything.
Children with PDA seek equal, reciprocal relationships because they simply cannot make sense of any another way. This will be a game changer to intervention.
Children with PDA need adults to see “them” and their incredible gifts, talents and uniqueness
When we embrace all of the above and weave it in to intervention, our children are able to shine and be content and happy. They are able to relinquish control, try new things and become drivers of their own ship.