Pathological Demand Avoidance Syndrome (PDA) is a developmental disorder that is being increasingly recognised as part of the autism spectrum. The main characteristic is a continued resistance to the ordinary demands of life through strategies of social manipulation, which originates from an anxiety-driven need to be in control.
In this interview, Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy – the authors of Understanding Pathological Demand Avoidance Syndrome in Children – talk about this diagnostic profile from their varied perspectives as parents of and professionals working with children with PDA.
Briefly, can you describe PDA? What differentiates it from autism/Asperger’s syndrome, and why has it come to light only recently?
Phil: Pathological Demand Avoidance syndrome (PDA) was first described during the 1980’s by Professor Elizabeth Newson. The initial descriptions were based on a gradually developing understanding of a group of children who were amongst those referred for diagnostic assessment at the Child Development Research Unit at Nottingham University. Most of the children seen for assessment were very complex in their development and many reminded the referring professionals of children with autism or Asperger’s syndrome. At the same time, though, they were often seen as not being typical of either of these diagnostic profiles.
Over time, Newson and her team began to notice that while these children weren’t fully typical of autism or Asperger’s syndrome they were typical of each other in some very important ways. The central feature that was characteristic of all the children was ‘an obsessional avoidance of the ordinary demands of everyday life’. This was combined with sufficient social understanding and sociability to enable the child to be ‘socially manipulative’ in their avoidance. It was this level of social understanding, along with a capacity for imaginative play, which most strongly countered a diagnosis of autism.
The publications on PDA have attracted great deal of interest and a degree of controversy. The overriding reason for this interest has been the strong sense of recognition expressed by both parents and professionals of the behavioural profile described. The controversy that exists has been about whether PDA does exist as a separate syndrome within the pervasive developmental disorders or whether the behaviours described are part of the autism spectrum. The first peer reviewed journal article on PDA was published in 2003 and since that time the recognition and interest has steadily grown. With recent changes in definition and terminology PDA is now increasingly being recognised as being part of the autism spectrum.
Alongside this growing recognition and need to understand the diagnostic profile, there has been the appreciation that children with this condition seem to require a different emphasis in the way in which they are managed and the approach they respond to. Many educational professionals, often very experienced in working with children with ASD, contact us because the sort of approaches and methods that they have found so successful with other children on the spectrum have not been so effective with this particular individual.
At the Elizabeth Newson Centre we are contacted by several parents each week who have come across information about PDA and are wanting advice and support about diagnosis, management and education. Many parents tell us that they have struggled to find a diagnosis that ‘makes sense’ of their child’s development and behaviour. Often they have read the descriptions of PDA and comment on how it is ‘like reading my child’s life story’. These parents don’t just want a label for their child – although they are often criticised for just that – but they want a way of understanding him or her. With understanding, they can then move forward knowing the best ways in which to manage their children, encourage them to be less anxious and reduce some of the outbursts that are having an impact on all of the family. As one parent wrote to us, only days after coming for an assessment, ‘…we are already experiencing a better home life…it seems that simply by having a better understanding of her difficulties there is a tangible drop in tension surrounding our interactions’.
This is the first book on PDA that has been written for parents, teachers, and other front-line professionals – how did it come together?
Phil: For many years we have been able to refer both parents and professionals to the information on our publications list – mainly the original writings of Elizabeth Newson and the more recent papers written by staff at the centre or Sutherland House School. These have all been welcomed and helpful but we wanted to bring everything together and to expand what has been written, particularly drawing on the very practical experience of clinicians, teachers and parents. We hope the book will give readers a useful summary of our understanding of PDA as it is, lots of practical guidelines and strategies and also give some pointers for future research. We also hope that it will stimulate constructive debate, progress in research and the sharing of strategies in the future.
Margaret and Zara, you both bring important insight to this book as parents of children with PDA. Can you tell us what a diagnosis of PDA has meant to your families, and how this book will help other parents?
Margaret: After eight years of struggling to understand my little boy who seemed to defy every rule of parenting and suffer from the most extreme meltdowns over seemingly tiny things, I was amazed to read about PDA which almost exactly described my son. The guidelines for management were far more helpful than any parenting book or autism related guidance I’d come across. Realising how important it had been to understand his diagnosis, I became determined to help to increase awareness and raise the profile of PDA. I initially wrote a book about my own story but it was too personal and not really helpful enough as there were no other books on PDA. That’s when I got together with Phil, who’d written quite a bit on PDA already; Ruth, an assistant head at a special school; and Zara, another parent – and in collaboration we wrote down everything we knew about PDA. Full of quotes from parents, this book is an introduction to this amazing condition which challenges the very roots of parenting and helps us all to understand these individuals and get the very most and best from them. These children deserve just as much understanding and help as any other child on the autism spectrum and hopefully this book will help those who come into contact with them to do just that.
Zara: My son was diagnosed in 2005. The first thing I did was type the word ‘pathological demand avoidance’ into different internet search engines. I thought I would do as much research as possible and order some books from well-known websites. There were documents, leaflets and different research papers from the Elizabeth Newson Centre in Nottinghamshire, and these were really helpful. The PDA On-line forum which supports parents/carers was also invaluable. But I was suprised there was not one book to buy. Most people (myself included) had never heard of PDA. This lack of awareness can make the situation very difficult to explain to people – that your child isn’t simply being ‘naughty’ or ‘awkward’. You can get judged, labelled and often ‘told off’ by well-meaning strangers about your child’s behaviour. If I say he has ‘PDA’, they look at me blankly. The book is an attempt to remedy this and bring all the current research, information and latest approaches into one place. Getting a diagnosis is just the first step but as a journalist, I was very keen to help other families and professionals who work with individuals with PDA develop a better understanding of the condition. The one message I would have for parents and families is that with the right approach and understanding, things do get better.
Ruth, as a teacher can you talk about your experiencewith PDA in a school setting? What particular challenges do students with PDA face in the classroom, and what about their teachers?
Ruth: Sutherland House School has spent many years developing approaches for teaching and managing children across the autism spectrum. Over more recent years we have seen a growing trend in pupils with complex needs who are different to the majority of children with autism – although they share some characteristics – but are similar to each other. These are the pupils with PDA.
Strategies which were tried and tested for children with autism were not as effective for this group of children. Increased awareness and understanding of their profiles led to modified approaches for managing their behaviour, maximising their participation in the school environment and promoting meaningful social relationships for them. The different emphasis for working with children with PDA is characterised by being less directive and more negotiable, by disguising requests and by modifying expectations depending on the mood and situation. It also prioritises building positive relationships of trust and respect. Approaches used at the school have developed not only within the classrooms, but alongside the work done by the Elizabeth Newson Centre. This has given a unique opportunity to co-ordinate diagnosis, psychology input and teaching expertise.
There is an in-house programme of training within school for all staff as well as regular opportunities for discussion and collaborative working to help meet the needs of this group of pupils. Some of the challenges for teachers are using approaches with an appropriate emphasis for children with PDA in the same classroom as children who need more typical ‘autism friendly’ strategies. There are also challenges in facilitating social relationships between children who also share difficulties with empathy and social understanding. Working closely with families is an important part of our holistic understanding of each pupil too. Some pupils may have had a difficult previous experience of education and for this group, creating a safe and motivating school environment is an early priority. Many of the challenges individual pupils face are related to their anxiety, participation and their emotional well-being. All these issues are covered in the book.
The book includes a variety of examples of strategies including contributions from teachers, parents and pupils themselves which outline useful approaches for teaching and managing children with PDA. These children can be as complex and challenging as they are rewarding and engaging. We hope that this book will lead to an increased understanding of these children and promote a positive experience of school for pupils, parents, and education professionals.
Phil Christie is Director of Sutherland House Children’s Services and leads a team of Consultant Child Psychologists at the Elizabeth Newson Centre, which carries out training and research activities and has particular expertise in PDA. He is also Associate Editor of ‘Good Autism Practice’, and became Chair of the Advisory Council of the Autism Education Trust in 2009.
Margaret Duncan is a GP and parent to a child with PDA. She coordinates the PDA Contact Group (part of Contact-A-Family), an internet based group providing information and support for parents and professionals.
Ruth Fidler is Assistant Head Teacher at Sutherland House School where she has worked for 18 years.
Zara Healy is a parent of a child with PDA. She trained as a journalist and worked for the BBC for nearly a decade as a radio and television reporter.
Copyright © Jessica Kingsley Publishers 2011.