All these are valid diagnostic formulations, and the use of different terminology may also be expedient where the PDA profile is not recognised by commissioners. Some clinicians prefer to use the term ‘pervasive’ or ‘extreme’ as an alternative, or simply refer to a ‘demand avoidant profile’.
Many individuals who identify with the profile feel that the term is accurate and appropriate, as the demand avoidance they experience is innate and all-consuming. Indeed Professor Newson herself later expressed regret over her use of the term. Use of the term ‘pathological’, in relation to marked demand avoidance, is not without controversy. Lastly, the contributors recognise that the language used in this document is necessarily medical in style, as it is written for practitioners, and therefore not always as reflective of neurodiversity as they may like. Both can be problematic, therefore it is also hoped that this guidance will lead to some harmonisation of practice. Equally contributors have noted that, with increased awareness, there has been some over-identification by other practitioners. There are some services and professionals who do not recognise PDA as a diagnostic term. Identification of PDA across the country is variable. Whilst the norm is for practice guidance to be produced separately for adults and children/young people, it was decided to make this all-age because the more limited evidence base on identifying a PDA profile in adulthood means it would be difficult to produce a separate document. It is intended for practical clinical purposes with the aim of improving outcomes via personalised interventions and support. This guidance, therefore, is based on the contributors’ considerable clinical experience and expertise and represents their consensus view of current practice and understanding. The contributors acknowledge the paucity of clinically-based research on demand avoidance and PDA, and call for further research to inform both theory and clinical practice. This guidance was drawn from those discussions and reviewed/revised by all contributors during the course of 2021. The survey information was analysed and summarised with a further consultation meeting in December 2020.
An initial meeting was held in October 2020 to outline the process for developing the guidance, followed by a detailed survey to gather inputs from all contributors.
PATHOLOGICAL DEMAND AVOIDANCE PROFESSIONAL
All the contributors have extensive experience of working with and supporting PDA individuals, and were invited to contribute because either they had recently published on the topic or had long-standing professional contact with the PDA Society. The document was produced by the PDA Society collating the professional practice and experience of a multidisciplinary group of professionals – with representation from psychiatry, clinical and educational psychology, paediatrics, occupational therapy and speech and language therapy – working in the NHS and private practice in England. The goal of this document is to aid identification and assessment of the ‘constellation of traits’ commonly known as a PDA (Pathological Demand Avoidance) profile to distinguish PDA from other presentations of marked demand avoidance and to signpost appropriate support and guidance for individuals and families.
It may also be helpful for other healthcare, social care or education professionals. This practice guidance is intended for clinical practitioners, including those working in neurodevelopmental assessments as part of a multidisciplinary team. Benefits of understanding the PDA profile.
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