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PDA Society statement on diagnostic terminology

PDA is widely, but not universally, understood to be a profile on the autism spectrum.

Understanding of PDA is at an early stage and robust research is urgently needed.

There is currently a range of academic and clinical perspectives about PDA.

It is important to understand this debate because it explains why PDA is sometimes dismissed by professionals; and the lack of research explains why PDA doesn’t feature in diagnostic manuals although they do allow for clarifying terminology such as ‘ASD with a demand avoidance profile’ as explained in our evidence for the use of PDA terminology document.

Whilst academic and clinical perspectives are extremely important, we believe the large and growing body of PDA individuals’ and their families’ lived experience is equally valid.

The PDA Society’s primary focus is less on the terminology used and more on individual needs being understood and diagnostic formulations leading to clear signposting of helpful approaches.

About demand avoidance and PDA

Demand avoidance is a natural human trait, we all avoid demands to different degrees at different times. When demand avoidance is more significant there can be many possible reasons for this: it might occur around certain situations (e.g. at school or in the workplace, or with certain people); it might be rational (for instance, avoiding situations that are stressful or which lead to sensory or social overload); or it might be related to physical, mental health or other conditions. So PDA isn’t always the best explanation for more ‘extreme’ demand avoidance.

Pathological demand avoidance is all-encompassing and has some unique aspects that can help differentiate it. Firstly it relates to everyday demands, and includes things that people want to do as well as things they might rather not. With PDA, demands are often avoided simply because they are demands, and it’s this sense of expectation (be it from someone else or your own ‘inner voice’) that leads to a feeling of lack of control, anxiety and ultimately panic. In PDA, there can be a somewhat ‘irrational’ element to the avoidance, for instance the feeling of hunger may inexplicably stop someone from being able to eat. Last but not least, PDA demand avoidance is also usually seen from a young age.

The word ‘profile’ is used because a combination of traits, or key features, commonly occur together. In PDA, demands are avoided using approaches that are ‘social’ in nature (e.g. distraction, procrastination, making excuses, physical incapacitation, withdrawal into fantasy). Social communication and interaction differences may not always be obvious at first. Intense mood swings and impulsivity are common; and many PDAers, though not all, appear comfortable in role play, pretence and fantasy, sometimes to an extreme extent. And with PDA, the ‘repetitive or restrictive interests’ from the autism diagnostic criteria is often focused more on people (real or fictional) than things.

In much of the academic literature and research, a strong ‘recognition factor’ around this cluster of traits is mentioned. It is also reported that, for some, PDA seems to make sense when nothing else has, and that the helpful approaches recommended for PDA work when other strategies have failed or made things worse.

PDA isn’t a standalone condition

Clinical practice and most of the research literature describe PDA as not being a ‘condition’ in its own right but a ‘constellation of traits’ within autism. A PDA profile, as we currently understand it, is one way in which autism may present, which may be different from what many people, including clinicians, currently think autism ‘looks like’. Nevertheless, on further investigation, you would expect to find the persistent difficulties with social communication and interaction, restricted or intense interests, and sensory differences from the diagnostic criteria for autism.

The PDA profile is also ‘dimensional’, meaning that it presents in different people in different ways – for instance, demand avoidance might be quite overt or it might present in a more internalised way, where demands may be resisted more quietly and difficulties are masked.

The PDA profile can, and should, be taken into consideration when undertaking autism assessments (please see Evidence for use of PDA Terminology and What makes a good diagnostic assessment for a child with a PDA profile?). This is in accordance with NICE Guidelines, which list demand avoidance as a ‘sign and symptom’ of autism. Autism assessments should consider all the presenting strengths and challenges, including demand avoidance. The extent of, and reasons for, demand avoidance should be determined in collaboration with the individual and, in children's services, their parents. It is important that alternative underlying causes of extreme demand avoidance are considered carefully, as over-diagnosis is as unhelpful as under-diagnosis.

When appropriate, a diagnosis of autism or ASD can be supplemented with the use of descriptive terms. Additional terminology such as ‘with a PDA profile’ or ‘with a demand avoidant profile’ are widely used. Using this type of clear signposting, under the umbrella diagnosis of autism, provides understanding around presentations that may otherwise be perplexing and highlights the need for different approaches when providing support. Where demand avoidance occurs for other reasons, individuals should also have their needs understood and explained, along with personalised recommendations.

Helpful approaches for PDA can be really useful regardless of the underlying causes for demand avoidance, but are essential to enable a PDA child or adult to thrive. Conventional approaches based on firm boundaries and the use of rewards/consequences/praise, or the approaches commonly recommended for autism (such as routine and structure), are often ineffective and even counter-productive for a PDA profile. Low arousal approaches, which keep anxiety to a minimum and provide a sense of control, are good starting points when thinking about what works for PDA. A partnership based on trust, flexibility, collaboration, careful use of language and balancing of demands works best. PDA Adults’ suggestions for self-help, coping strategies and therapies are covered here.

In summary:

There is a range of academic and clinical views on PDA and more clinically-based research, which incorporates the lived experience, is urgently needed. The PDA Society’s view is that the PDA profile, as we currently understand it, includes traits which by definition indicate autism, and that although there are behavioural similarities with other conditions, they can be distinguished. The profile is not viewed as a diagnosis in its own right, but can be identified during an autism assessment and, where appropriate, should be included as a clear signpost to the approaches that will be helpful. Clinically-based research and surveys to date point to the use of formulations such as ‘Autism with a PDA profile’ or ‘ASD with demand avoidant traits’ as being used in practice.