Our current thinking on PDA

As many people may be aware, there has been a great deal of interest in, and controversy around, PDA.  What it is, what it should be called, and whether it actually exists.

As it is now over thirty years since the original concept of PDA was introduced by Elizabeth Newson and her colleagues, and how the thinking around Autism has moved on significantly during this time, it is very appropriate that this is discussed.

The first point of discussion is often around the name – many people find the term ‘Pathological’ difficult to accept.  They state that it puts the ‘blame’ for the demand avoidance firmly upon the child, and misses the reasons why a child might avoid certain situations or requests.  No one would dispute that avoiding demands is a human trait – we all do it to some extent.  Sometimes there is a completely rational reason why a child might resist doing something.  School and school work are often a trigger, and many children are actually traumatised by the school environment, and the fact that they find aspects of the work difficult.  They may have sensory issues that lead to them becoming overwhelmed in certain situations.  All perfectly reasonable reasons to avoid activities.

In addition, there are a growing number of people who actively identify with the label of PDA, and refer to themselves as PDAers. Using such an identity gives them a feeling of belonging to a group of people who understand their challenges, and who is to say that this is wrong?

However, there are significant difficulties with this in terms of pinning down what exactly PDA is.  A major critique of PDA is that there are still no clear, unambiguous features of PDA that everyone agrees on.  Support for, and acceptance of, PDA across the United Kingdom, and indeed across the world, is variable.  Some areas have taken a stand and stated that it ‘does not exist’, or that they do not recognise it as a diagnosis, or even as a descriptive label. This has led to a huge rise in the number of parents and individuals who feel they recognise features of PDA in themselves, seeking support via social media sites.  This is undoubtedly a lifeline for many who are desperate for support.  Sadly though, ‘evidence’ gathered from these sites does not tend to be accepted by those carrying out academic research, or those who decide upon policies.

Another major point of discussion centres around whether PDA is exclusive to Autism.  This is a really interesting question.  As a team we have been fortunate to be asked to assess children (over 350 in a two year period) with a variety of difficulties and backgrounds.  Very often, on paper, the referral information looks very suggestive of what has now become known as the ‘PDA profile’.  However, when we meet some of these children, and spend time (often several hours) interacting with them, it becomes clear that their demand avoidance can be ‘better explained’ by something else (sometimes a ‘rational demand avoidance’ or attachment difficulties/developmental trauma).

As a team we have spent many many hours discussing this and trying to pin down exactly what feels different.  We have carried out research on the data gathered from these 350 children, and have written this up for publication in academic journals. But these things take time.  We have taken on board the critique which has been forcefully expressed by those who do not feel that PDA is a ‘thing’ and have questioned our own judgement time and time again.  But (and this to us is a very important but), sometimes a child comes into our clinic and we all look at each other and say ‘There it is, that’s what PDA is’, because these children are SO similar.

Our team has spent many hours with children with a variety of different difficulties, and there is just something about the children with the PDA profile that makes us believe that it is an identifiable ‘thing’.  It will take time and more research to establish how this ‘thing’ can be better understood by a wider audience. All of these children meet criteria for Autism first, and the PDA is explored alongside this.  It may be a co-morbidity with Autism, it may be a trauma response, but ignoring it or arguing about what to call it or whether it is a ‘profile’ or a ‘syndrome’ is not helpful for the parents and children in the middle of these discussions.

It is not pleasant discussing the impact that the types of behaviour we have seen has upon parents, teachers, siblings and often the young person themselves, but it is a fact.  Many people do not like the idea of labels, or of sub-categories for Autism.  We, however, tend to use the analogy of apples – apples are apples, but there is no doubt that a Gala apple or a Pink Lady apple is better as an eating apple, whereas a Bramley apple is better cooked in a pie.  All are apples, but using a descriptive label helps people to know something about their individual characteristics.

Some critics argue that there is no need for a label such as PDA, and that the strategies suggested for working with children with PDA are just good autism strategies.  This is true up to a point – using a flexible child-centred approach is beneficial for all children.  The opposite does not apply though.  Trying to use routine-based, Autism strategies, or strategies that work for children with attachment difficulties, such as reward charts and contingency based systems, simply do not work for children with the PDA profile.  Ask any teacher.  With this type of approach, it is hardly surprising that the PDA society survey found that 70% of children with this profile were home educated, or out of school.

The take home message from this post is to appeal to those people who are so against the idea of a PDA profile – please give those of us on the front line time.  Time to pull together our evidence, time to read and learn from others in the field. These things take time to develop.  The process of publication of academic research is slow.  There is no doubt that after 30 plus years it is time for a fresh look at PDA; but simply arguing that it does not exist is not helpful.  Also please listen to the few professionals out there who have experience of being at the ‘coal face’ – those of us who have actually sat on the floor with a child, tried to negotiate with them, attempted to play with them, and listened to their broken parents.  Also, please listen to the children who ask for help and who say they don’t want to be difficult or challenging.  Please think about the potential trauma for the child who is being continually misunderstood and mismanaged.  Please think about the parents who are accused of fabricating or causing their child’s difficulties due to poor parenting and remember, until the 1980’s Autism itself was not in the diagnostic manuals like the DSM.  This did not mean that some people were not autistic before 1980.