👉 What to reply when told PDA (pathological demand avoidance) does not exist/is not recognised in your area 👈
A clinician can diagnose a condition which is evident before them, it does not need to be in diagnostic manuals to do so, the manuals are about allocating diagnostic codes to descriptions of conditions. Having said that, PDA as an ASD, is present in diagnostic manuals as an ASD diagnostic code. For the DSM-V it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now, DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be either (ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified), but noted on diagnostic reports as ASD-PDA subtype, ASD-PDA profile, ASD with demand avoidance profile etc.).
PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist! It does constitute an ASD subtype which isn’t individually mentioned in the diagnostic manuals – yet. But it’s looking likely that the ICD11 will follow with the DSM-V diagnosing all ASDs under one umbrella, so from that perspective it’s irrelevant. However, PDA does need different strategies and support.
This is why there is a DfE endorsed educational guidance document:
“The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice”
Read this excellent article by Dr Judy Eaton (consultant clinical psychologist with years of experience in NHS and private sector, expert in ASD as well as PDA): https://help4psychology.blogspot.co.uk/…/back-to-school-for… she explains very well how families suffer when LAs and NHS take this attitude of PDA not existing and clearly states that PDA does exist.
“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”
There is a growing body of research about PDA:
“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”
Point out that if the Department for Education recognises it, that’s central government and that should be enough. The NAS recognises it and they are the UKs major autism charity which is government funded. www.autism.org.uk/about/what-is/pda.aspx
Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) www.england.nhs.uk/stps/view-stps/ and see if your local plan says anything about making care uniform across the region, losing the postcode lottery, improving varied care etc. because there may be a town in your area which recognises PDA and another that doesn’t. You can use this information as the STP covers everything, including mental health issues.
Have answers for every denial they offer. Don’t passively accept what they say, a lot of it is based in ignorance.
Known NHS areas that have diagnosed PDA (there will be others):
Kilmarnock, Ayreshire and Arran, Scotland
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Hawley, North Hykeham, Lincolnshire
GOSH (NHS) London