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Adults with PDA - resources

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The PDA Society have published some new resources on their website aimed at adults with pathological demand avoidance

They contain:

  • information and advice on how to refer and prepare for a diagnostic assessment
  • signposting to post-diagnostic support and advice
  • links to blogs and personal stories from other adults with PDA

You might also be interested in this Network Autism article by Julia Daunt, which explores her own experiences of being an adult with PDA.

We'd be very interested to hear of any other resources specifically aimed at adults - please do share them with us.

Thanks,

Chris

AutismAdvocate

September 21, 2017 - 4:49pm

The DoH has washed it's hands of the issue of the postcode lottery when it comes to recognition of PDA as a condition/diagnosis.  Seen this FOI yesterday:

https://www.whatdotheyknow.com/request/what_labels_does_the_uk_governme
 

However, the Department of Health does not issue guidance on what autism labels should be used by clinical professionals when diagnosing people for autism. Clinicians will diagnose in line with guidance such as the
Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the American Psychiatric Association's classification and diagnostic tool, or the International Statistical Classification of Diseases and Related Health Problems (ICD-10), a medical classification list by the World Health Organization.

It's a very big problem and the main excuse clinicians are using is that it's not listed in the diagnostic manuals but this is absolutely incorrect because the code for ASD, autism, atypical autism, or PDD can be used with the descriptive of the PDA profile in the report.  Not being in a diagnostic manual does not prevent a condition being diagnosed anyway (diagnostic codes should not prevent people receiving accurate diagnosis and there is no 'law' which says it has to be specifically in the manuals) and this is simply being used as an excuse to avoid diagnosing PDA as it's an ASD and it's a money thing, as we know from what's been going on recently with London boroughs and now Lincolnshire area.