Government Response is Inadequate

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The PDA Society says Government Response to Westminster PDA Petition is Inadequate
 
A Westminster petition calling for greater recognition and understanding of the PDA profile was set up by parents who found that existing services were unable to support them properly, with very severe consequences for their families. It was automatically sent to Ministers at the Department for Health and Social Care having reached more than 10,000 signatures. Those who set up the petition also sent further evidence to the Secretary of State, Jeremy Hunt MP.
 
The Department has now provided an official response to the petition. 
 
The key points in the Government’s response are:
 
1. A commitment to supporting those with autism and a recognition of PDA as being part of the autism spectrum:
 
"The Government is committed to supporting children and young people with autism, under which PDA is categorised, to enable the right support to be put in place early and reduce the longer term impact.”
 
2. Repetition of a stock response describing guidance provided by NICE and diagnostic manuals. Sadly, as part of this, the following statement is repeated, even though this is not in line with practice (see below*) and consequently causes significant confusion:
 
“the developers looked at differential diagnoses for autism. In this, they did consider PDA, identifying it as a particular subgroup of autism that could also be described as oppositional defiant disorder (ODD)” 
 
3. No response concerning the need for awareness-raising and recognition. In other words, lack of detail on how the Government’s opening statement of commitment can be enacted.
 

The PDA Society considers the Government’s response to be disappointing and inadequate


 *The PDA Society finds that in practice very few individuals on the Autism Spectrum are also diagnosed with co-morbid ODD and, quite correctly, few clinicians would consider doing so. More recent research has demonstrated differences between ODD/Conduct Disorder and the PDA profile; they are not one and the same and a different approach is needed to support those with a PDA profile (O’Nions et al, 2013).  
 
Thinking has in fact evolved significantly over recent years. The shifting to a formal umbrella diagnosis of ‘Autism Spectrum Disorder’ (ASD), together with the needs-based approach described by the NICE Guidance, calls for a description of an individual’s strengths and needs to be made within an assessment. It is increasingly common for this approach to be reflected in diagnostic phraseology, with individuals being diagnosed with 'ASD with a PDA profile’ or ‘Autism characterised by extreme demand avoidance’ for instance. PDA Society research (to be published shortly) shows that this terminology is now regularly used by practitioners across the country. Clinicians are already using these terms, so it is neither helpful nor in line with current practice for the Department to repeat the NICE developers' opinion from a pre-publication report in 2011 that the PDA profile can be described as ODD within Autism.
 
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.
For this to happen, we need clinical leaders and Commissioners to clarify and formalise the position on the PDA profile. We believe that the Government should be pressing for this to happen and the Society shall be seeking to engage with the Department and others to take this forwards.
 
 
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