Improving Outcomes - PDA Society statement about diagnostic terminology




There is confusion for individuals, parents, clinicians and academics about what PDA is or isn’t – this can and does lead to misunderstanding and poor outcomes for many. As part of our PDA Day 2019 Improving Outcomes suite of resources, we thought it may be helpful to clearly state the PDA Society’s current understanding on this issue.
 
‘Demand avoidance’ is the term used to describe something which affects us all, to different degrees and for different reasons. For many autistic people, demand avoidance can be a rational response to certain environments or challenges, or a coping mechanism. But for some individuals, research points to qualitative and quantitative differences in the nature of the demand avoidance, which is pervasive and extreme in nature, hence the use of the term ‘pathological’.
 
Research into PDA is in its infancy, with a range of perspectives currently evident. High quality, robust research is urgently needed. This should not just focus on ‘what is PDA?’ or ‘where should PDA be classified?’ but, perhaps more importantly, ‘what approaches are helpful?’ and ‘how can we all best talk about the PDA profile?’
 
In all the academic literature and research, a strong ‘recognition factor’ around PDA 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.

The current academic view is that PDA is not a ‘syndrome’ in its own right but a ‘constellation of traits’ within autism - this is commonly described as a ‘profile’. As such, PDA is widely, but not universally, understood to be a ‘profile’ on the autism spectrum. A PDA profile is one way in which autism may present, which may be different to the ways that many people, including clinicians, currently think of autism. This is similar to how the ‘female presentation’ of autism is now being more widely understood. The PDA profile is also ‘dimensional’, meaning that it presents in different people in different ways.

The PDA profile can, and should, be taken into consideration when undertaking autism assessments. This is in accordance with NICE Guidelines, which list demand avoidance as a 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. Demand avoidance can occur for different reasons, so it is important to understand that a PDA profile may not always be the explanation.

When appropriate, a diagnosis of 'ASD' can be added to with the use of descriptive terms. Supplementary terminology such as a ‘PDA profile’ or ‘characterised by extreme demand avoidance’ are widely used. This type of clear signposting has significant benefits as it highlights the need for the use of appropriate strategies and approaches by professionals and families.

In summary:

PDA is not a diagnosis in its own right, however the PDA profile can be identified during an autism assessment and, where appropriate, should be included as a clear signpost to the support strategies that will be helpful. The research to date means that PDA would not be diagnosed as a standalone condition, but that formulations such as ‘Autism with a PDA profile’ or ‘ASD with demand avoidant traits’ or similar can be, and are being, used.

Please also refer to information from the PDA Development Group: What makes a good diagnostic assessment for a child with a PDA profile