Position Statements

Authorities around the country are starting to put in writing their position on the PDA profile. This gives some clarity to staff working in the local area as to how to address this profile on the autism spectrum.

In the experience of the PDA Society, educationalists and psychologists are most likely to recognise the profile and understand what having PDA means in practice (partly because they spend more time with individuals).
In some regions, though not all, psychiatrists and paediatricians can be less likely to talk about the profile, partly because of differences in their professional training.

Most position statements combine these approaches by stating that PDA is 'not a diagnosis' but that the needs of those with the profile should be identified and support provided. Currently, some are more circumspect than others.

It is the view of the PDA Society that if a Position Statement accepts that there are needs which must be understood, and 'allows' the use of language around the pathological or extreme demand avoidance trait, then this is some progress. As research and understanding develops Position Statements will become more refined and useful, but an important minimum first step is to move practitioners away from the feeling that they can't even talk about the profile.

Please let us know if your local authority has published their position or are planning to do so.

Contents of a Position Statement

An effective statement should include:

  • The current academic view; which is that PDA is not a syndrome but a constellation of traits.
  • This cluster is commonly described as a profile
  • ASD assessments should consider the presenting impairments including, when relevant, this constellation of symptoms.
  • The extent of and reasons for demand avoidance should be determined in collaboration with the individual and, in children's services, their parents.
  • When appropriate, diagnosis of 'ASD' can be supplemented within the diagnostic formulation and this type of clear signposting is essential. (The use of descriptive phraseology such as a ‘PDA profile’ or ‘characterised by extreme demand avoidance’ is already widely used and not incorrect.)
  • The need for the use of different strategies and approaches must be highlighted.
  • Assessment reports should provide clarity for post-diagnostic education, health and social care services.
  • Pre- and post-diagnostic services should be sufficiently focused on needs and outcomes that they are able to recognise and support individuals with this profile.

Here are some examples:

More helpful statements:
Surrey County Council and partners (Children's services)
[Note: Surrey CC have confirmed they are happy for others to make use of this wording]
Sheffield City Council PDA Statement (coming soon!)

Less helpful position statements:
Sussex Partnership NHS Trust (also responsible for Hampshire CAMHS)