The highly influencial medical journal, ‘The Lancet’, recently published a paper entitled ‘Pathological Demand Avoidance: symptoms but not a syndrome’.

UPDATE: In July 2018 a commentary on this paper “Demand avoidance is not necessarily defiance” by O’Nions, Happe, Viding, Gould and Noens was published.

While the title sounds provocative to those of us who have been campaigning for recognition of PDA for years, the content should nevertheless be helpful to those needing support. The PDA Society welcomes this paper as it gives clear practical advice to those working with young people with neurodisabilities on the assessment of PDA; it says that that referrals should not be rejected, that comprehensive assessments should investigate the traits described by this recognised pattern of behaviours, and that importantly, clinicians should be working with families to agree a management plan. They state ‘it is essential to refute the expectation that some families have that they will not be believed‘.

In addition this paper is a clarion call for further research. The paper refers to the need for research time and time again, and with so many unknowns it is essential that we all work with the research community to encourage a focus on this area.

This paper is particularly helpful at a time when the Government has failed to be supportive. We now have the clinical leadership needed to press local services and national Government.

The PDA Society believes that the precise terminology around PDA is not so significant provided that:

  • there is understanding of difficulties and needs by professionals,
  • the correct support is advised and available for individuals,
  • there is access to the services needed

The PDA Society will now seek to highlight the work at all levels and it is hoped that it will be invaluable for families struggling to be taken seriously.

The paper itself has to be bought to be read, so we have provided a summary of the key points as they relate to clinical practice.