Pathological Demand Avoidance: symptoms not a syndrome

Authors: Prof Jonathan Green, FRCPsych, Michael Absoud, PhD, Victoria Grahame, DClinPsych, Osman Malik, MRCPsych, Prof Emily Simonoff, MD, Prof Ann Le Couteur, FRCPsych, Prof Gillian Baird, FRCPCH
Published: 22 March 2018
The Lancet Child and Adolescent Health

 This paper has now been made available for free, please register to download it here

This a summary of the paper written by the PDA Society, identifying the key points from the practical perspective of practitioners and parents as the paper relates to assessment in children. Those with an interest in research or the detail of the expert advice, would benefit from downloading a copy from the above link.

Who wrote the paper

This paper sets out the current thinking of a group of researchers and clinicians on Pathological Demand Avoidance (PDA), and gives recommendations for assessment and development of management strategies. A number of the authors were members of the 2011 NICE Guideline Development Group and are influential in the British Academy of Childhood Disability. This paper is described as a 'viewpoint' article and as such, this can be seen as an overview of the current position.

What it says

The paper has reappraised the PDA construct which has ‘gained increasingly wide attention’ as parents have felt that the face validity of existing DSM and ICD diagnoses have been inadequate. Both parents and clinicians find that PDA is a recognisable pattern of behaviours, which appears to make sense of complex developmental presentations.
It describes how in recent years it has been found that it has not been possible to clearly separate out different sub-types of Autism Spectrum Disorders / Conditions (ASD) (including Asperger’s and High Functioning Autism), and instead there has been a move to look at the individual traits for those with ASD, and, they demonstrate that, similarly, there is not sufficient evidence to list PDA a separate syndrome.
The paper explains that the original PDA concept includes the fact that the individual isn’t only extremely sensitive to their environment, leading to a desire to avoid and apparent controlling behaviour, but the pathological nature suggests that there is something intrinsic that leads to the avoidance of even ordinary demands and results in the need to ‘parent differently’.
The authors also point out that children on the Autism Spectrum are particularly sensitive to their environment for various reasons, and their distress can lead to avoidant behaviours. Looking at ‘bidirectional interactions’ may be helpful in providing understanding of the source of some behaviours. They also highlight the need for further research into factors influencing behaviours.
The possibility of the use of multiple diagnoses was explored. The diagnostic manual, DSM-5, has opened up the possibility of diagnosis of co-occurring morbidities (behaviours and disorders), rather than saying that all behaviours are just autism. This is a relatively recent change, and is now encouraged as a way of describing associated difficulties or impairments.
The paper looks at how well the co-occurring diagnoses of Anxiety Disorders, Oppositional Defiance Disorder and Conduct Disorder can describe the features of pathological demand avoidance. It discusses research which shows overlaps in behaviours and identifies the need for more research to see if the underlying causes are the same or different. 
The authors go on to make it clear that if diagnoses are going to include co-morbidities in this way, then clinicians need to have the skills to understand and explain what it means in the context of Autism; the way in which the quality of the condition varies within ASD. For example, they explain that poor parenting has ‘absolutely no relevance to ODD in the context of ASD’.
A range of Anxiety Disorders which can result from a number of factors are commonly associated with ASDs and it was highlighted that PDA descriptions include anxiety and emotional volatility.
The paper carries on to discuss the consideration of PDA in the context of a neurodevelopmental assessment.

Importantly for clinical practice across the country, the expectations are unambiguous:

PDA referrals should not be rejected on the basis that PDA is not a recognised diagnosis’;

 A full assessment (multidisciplinary and multiagency) for neuro developmental disorders should be undertaken (including co-occurring mental health, behavioural and functional difficulties);

• The presenting difficulties within the PDA description should be assessed through:

o   An understanding of the presenting problem over time
o   Developmental history
o   Cognitive function
o   Sensory sensitivities
o   Individual interview with the child
o   Environmental conditions: education, family etc
o   An understanding of the family attitudes to the presenting problems
• They explain that ‘it is crucial to identify the drivers behind the presenting behaviours, in terms of their context, the child’s specific characteristics and the transactional relationships involved';

• The assessment should lead to a ‘formulation of the child’s profile of sensitivity and reactivity related to particular environmental conditions’; DSM-5 recognises the need for ‘more comprehensive diagnostic formulations’ which ‘should mean that problematic behaviours such as extreme demand avoidance and emotional dysregulation will be included in diagnostic formulations and inform the development of comprehensive child and family intervention programmes’. 

• Individuals who are found to have sub-threshold ASD traits (not meeting criteria for an ASD diagnosis) might still have these traits identified as ‘risk factors for challenging behaviour and mental health problems’.

• Even though the apparent conflict in perspectives between the diagnostic manuals and recognition factor of PDA descriptions creates difficulties, ‘a convergence of views with the family about a management plan is essential’. The authors state that ‘it is essential to refute the expectation some families have that they will not be believed by professionals. It is important for clinicians and service users to come together in a spirit of share empiricism about what can be agreed on direct assessment, observations and formulations’.

• Demand reduction strategies can be appropriate, but is not the only strategy; ‘the environmental adaptation needs to be much more nuanced and individualised’ as complete demand reduction may be developmentally counterproductive.
The paper ends by saying, while it is not a syndrome, the ‘PDA concept has been influential in drawing attention to behaviours that parents thought had not been sufficiently recognised by professionals’ and that the clinical viewpoint described is essentially the same as for all with Autistic Spectrum Disorders and should lead to individualised plans.

In summary

There is a need for further research in a range of areas, including work that might indicate that the treatment advice in the current NICE Guidelines may need updating.
At the same time, it suggests that focussing on PDA as a separate category is a distraction; services should already be assessing and supporting individuals who exhibit PDA patterns of behaviour; indeed the paper states ‘positively, [PDA] can alert professionals and families to patterns of complex behaviour and interaction in children with autism spectrum disorder....’