A demand to avoid demand avoidance?
A growing interest around Pathological Demand Avoidance (PDA) has been reflected in letters to this magazine, discussing possible explanations for PDA, specifically as a form of autism or attachment disorder. Nonetheless, the main PDA discourse portrays it as a distinct syndrome that is part of the autism spectrum. Yet PDA is not in the diagnostic manuals and there is a substantially poor scientific case for the construct.
The PDA behavioural profile lacks specificity and overlaps many other conditions, including common autism comorbidities. Furthermore, research indicates PDA itself is not unique to autism, its behaviours are not caused by autism and many persons diagnosed with PDA are unlikely to be autistic. This pluripotential nature is compounded by flawed screening and diagnostic tools, containing vague questions and frequent reliance on caregiver reports; therefore much of PDA research has various possible sources of confirmation bias and alternative explanations.
Primarily, PDA research is focusing on reliability over validity, partly with the aim to maintain integrity of its dominant discourse. Since autism has moved to validity based nosology, PDA is unlikely to enter diagnostic manuals, and some view it as a threat to validity of clinical language.
Crucially, under the Department for Education and Department of Health’s 2015 Special Educational Needs and Disability Code of Practice, individuals should receive appropriate strategies regardless of their exact diagnosis. Pertinently, according to the short report of a 2019 meeting of the PDA Society, children with a diagnosis of PDA do not experience an increased number of formal school exclusions, but do experience more ‘informal exclusions’.
My own citation survey suggests that the key PDA literature is being accessed thousands of times, with negligible levels critical scholarship referenced. I would argue there is a need for a scientific approach to PDA, prioritising the integrity and validity of autism, over diagnosing PDA. In a time when psychologists such as Sue Fletcher-Watson are advocating participatory autism research, and with my own research suggesting that PDA is not a recognised research priority of the autistic population, an ethical debate is required to discuss the merits of diagnosing and researching it.
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