The following questions have been answered by Phil Christie, Consultant Child Psychologist, Elizabeth Newson Centre, NORSACA.

 

Q. Is PDA part of the autistic spectrum? / I would like to know what is currently happening to make PDA more than just 'increasingly recognised as part of the autism spectrum' / What will make the professionals who write the diagnostic manuals (DSM/ICD) actually take note of PDA as an autism spectrum disorder, and hopefully include it in their next revisions?

A. The term Pathological Demand Avoidance syndrome (PDA) was first used by Professor Elizabeth Newson in the 1980s in a series of clinical descriptions, small-scale research articles and lecture presentations.  Some of these were published as part of the proceedings of a series of annual conferences held at Durham University to encourage professionals from different disciplines to share emerging work in autism.  It wasn’t until 2003 that the first article on PDA appeared in a peer-reviewed journal (Archives of Disease in Childhood), in which Newson proposed that PDA be recognised as ‘a separate entity within the pervasive developmental disorders’.

At that time both of the diagnostic manuals (DSM and ICD) used Pervasive Developmental Disorder (PDD) as the umbrella term under which autism and Asperger syndrome were placed. One of the reasons that PDA is ‘increasingly recognised’ as part of the autism spectrum is that as our understanding of the autism spectrum has grown the term Autism Spectrum Disorder (ASD) became synonymous with PDD and replaced it in everyday language.  This was acknowledged by the National Autism Plan for Children and, later, the NICE guidelines on autism diagnosis.  This change in thinking contributed to a short article on PDA being published in the National Autistic Society’s magazine (Communication) in 2009 and the subsequent update to the material on their web site.

Over the last few years, there has been a huge upsurge in interest in PDA due to a strong, and continued, sense of recognition amongst parents and others on reading the clinical descriptions and accounts of PDA.  Along with this, there has come a realisation, particularly amongst educationalists, that children and young people who fit the PDA profile require a modified and adapted approach to teaching and learning.  Many professionals feel that PDA is best regarded as being part of the autism spectrum.

In order for there to be a wider endorsement of PDA within diagnostic services and recognition within the manuals, a stronger research base is needed.  Professor Francesca Happé (Director of the MRC at the Institute of Psychiatry) when speaking at the first NAS/NoRSACA conference in 2011, talked about the cogency of the clinical descriptions and the sense of recognition of this profile amongst parents and many professionals, but also of the paucity of research evidence.  The project undertaken by the IoP has set out to start addressing this and two more papers have now appeared in peer-reviewed journals (for more details about this research and references see here).  The paper published in the Journal of Child Psychology and Psychiatry describes the development of the Extreme Demand Avoidance Questionnaire (EDA-Q) to quantify the behaviours within the PDA profile and this shows great potential to assist in the identification and future research.

Many parents experience frustration as they struggle to gain a better understanding of their child and access to a diagnostic understanding that makes better sense of him or her.  This is completely understandable but in a wider context the developments around PDA just described are very recent.  Looking at the history of autism as a comparison, this was first described in 1943 by Kanner as ‘early infantile autism’.  The possibility of links with childhood schizophrenia and environmental causation (alongside genetic and biological influences) held sway for a number of years and it wasn’t until the revision of DSM III, in 1987, that autism lost it’s adjective ‘infantile’ and became ‘autistic disorder’.  The diagnostic manuals are constantly evolving attempts to represent a progressive understanding of the spectrum (a term which Lorna Wing originally coined to describe a ‘wide spectrum of autistic conditions’), based on increasing research understandings and developing clinical practice.

Q. What are the differences between PDA and ODD and Attachment Disorder?

A. It’s inevitably the case that when conditions are defined by what are essentially lists of behavioural features there will be interconnections and overlaps.  Aspects of both of these conditions can present in a similar way to those features that make up the profile of PDA.  There is also the possibility of the co-existence or ‘co-morbidity’ of different conditions and where this is the case the presentation is especially complex.

ODD, Oppositional Defiant Disorder, itself often exists alongside ADHD and is characterised by persistent ‘negative, hostile and defiant behaviour’ towards authority.  There are obvious similarities here with the demand avoidant behaviour of children with PDA.  PDA, though, is made up of more than this, the avoidance and need to control is rooted in anxiety and alongside genuine difficulties in social understanding, which is why it is seen as part of the autism spectrum.  This isn’t the case with descriptions of ODD.  A small project, supervised by Elizabeth Newson, compared a group of children with ODD and those with a diagnosis of PDA and found that the children with PDA used a much wider range of avoidance strategies, including a degree of social manipulation.  The children described as having ODD tended to refuse and be oppositional but not use the range of other strategies.  Many children with ODD and their families are said to be helped by positive parenting courses, which is less often the case with children with PDA.

Attachment disorder, or Reactive Attachment Disorder as described in the diagnostic manuals, has its own debates about how it is best defined.  RAD describes a group of children who show ‘inhibited, emotionally withdrawn behaviour’ and also ‘a persistent social or emotional disturbance’.  The criteria, though, also include patterns of ‘extremes of insufficient care’ and are not judged to meet the criteria for autism spectrum disorder.  Some professionals prefer to use the term attachment disorder or attachment problems, recognising that attachment is part of a continuum.  There is though little research in this area.  When children have experienced a very difficult early life, or suffered serious abuse or trauma the presenting problems can appear similar to those of children on the autism spectrum, including those who fit the profile for PDA.  One attempt to tease out some of these overlaps and differences was made in producing the Coventry Grid. Please also refer to Judy Eaton, Kathryn Duncan, and Ellen Hesketh (2018) Modification of the Coventry Grid Interview (Flackhill et al, 2017) to include the PDA profile.

These areas of overlap and the potential for behavioural profiles being interpreted in different ways underlines the importance of a detailed and comprehensive assessment being carried out by experienced practitioners.  Assessments should include the taking of a detailed developmental history as it is vital to know not just how a child presents now but how they developed up until now.  This is not always easy with an older child, or a child who grew up in adverse circumstances, as that information might be hard to come by.  Assessments should also include detailed observation of the child looking at all areas of development, information about how they behave in a range of different situations, the views of other professionals and consideration of other relevant factors and circumstances, such as their health and family relationships.

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