There has been rather an emphasis on the impact of domestic violence or trauma on here recently, and so I thought it was time to redress the balance and consider the presentation of violence and abuse to parents from children on the Autistic Spectrum. Today I bring you a guest post from Jane Sherwin, who I first met on twitter writing about life with her daughter, Molly. Jane has become something of an expert on the condition, campaigning, blogging, and publishing a book in 2015.
Pathological Demand Avoidance Syndrome (PDA) is a term first coined by Professor Elizabeth Newson way back in the early 1980’s. At that time Professor Newson was working for the child development research unit at Nottingham University and the cases referred to her were often extremely complex. The referring clinician would often describe the individual as being very similar to those with Autism or Asperger Syndrome but that their presentation was atypical. What Newson came to discover and to research was that while this group were atypical of a traditional profile of Autism or Asperger Syndrome they were, in fact, all typical of each other. (Christie et al 2011)
Most notably they all appeared to have better imaginative play, social insight and surface sociability than you would traditionally expect to see in an individual with an Autism Spectrum Condition (ASC). They also all shared the overriding feature that would come to define PDA ‘an obsessive need to avoid the demands of everyday life’ (Newson et al 2003)
During the past five years I have seen awareness of PDA rapidly mushroom among parents due to the increased amount of information that is available on the internet. More and more parents are increasingly stumbling across this condition while desperately searching for answers as to why their child behaves the way that they do.
I feel that 2015 has really been a watershed moment for PDA awareness. During this year we have seen two more books published about the subject and the National Autistic Society have finally removed PDA from the related conditions section of their website and included it under their ASC umbrella alongside Autism and Asperger’s The cherry on the cake, for me, has definitely been the recent mainstream media coverage in the TV documentary ‘Born Naughty?’
Born Naughty? Really has catapulted PDA Awareness and we have seen a huge increase in parents requesting to join PDA support groups since the airing of the TV show. The show encapsulated, for me, just how the health service should be dealing with parents who have children showing challenging behaviour. Instead of assuming that parenting must be the cause of the child’s issues the professionals instead took a two pronged approach at investigating both areas, parenting and the possibility of an underlying condition, simultaneously. Thus producing a quick and effective means of resolving the underpinning issues at hand.
This method is fast, efficient and far less stressful for parents instead of the current situation which appears to be to blame the parents first and look at an underlying condition as a final resort several years down the line if ever.
I can only hope that in time the health service in general and in particular CAMHS will try to adopt a similar approach as the experts in Born Naughty? Early intervention is key to helping these children and being stuck on the never ending road to nowhere, as is often the case with CAMHS, is not helpful to anyone. A diagnosis is a sign post to the correct support, interventions and management both for now and for in the future and is key for the long term prospects for the child.
If anyone else would like to contribute a guest post, I am always pleased to have a week off!