This is the Sussex Partnership NHS Foundation Trust (SPFT) official statement on PDA.

​

Here is the response to that statement, replies in bold showing how erroneous it is, point-by-point:

​

1. "PDA is not a diagnosis within any classification system, neither the international ICD 10 nor the American DSM 5. It does not provide an explanation for the behaviour and therefore it does not suggest a useful, helpful or effective treatment approach."

​

PDA as an ASD, is present in diagnostic manuals as a disorder and therefore an ASD diagnostic code would be used, making this statement incorrect. For the DSM all ASDs are diagnosed under DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be any one of the following: ICD10 F84.0 (autistic disorder), F84.1 (atypical autism), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified) and noted on diagnostic reports as "ASD-PDA sub-type" or "ASD-PDA profile".

 

As for an explanation for the behaviour, no ASD has an explanation for the behaviours other than it is a neurodevelopmental disorder, which would also apply to PDA, as it is an ASD sub-type or profile.

​

Further, the fact that all official sources and research state clearly that the behaviours are driven by severe anxiety based on everyday 'demands', it is untrue to make this statement anyway. Finally, there are DfE and AE Trust endorsed PDA educational guidelines (The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice" https://www.aettraininghubs.org.uk%2Fwp-content%2Fuploads%2F2012%2F05%2F5.2-strategies-for-teaching-pupils-with-PDA.pdf) and recommended PDA-specific approaches on all official sources including the National Autistic Society which is Government-funded, so it is also untrue to say there is no useful or effective treatment approach. As the underlying issue is severe anxiety, for clinical support the methods would be as for any child with anxiety but with adjustments for autistic neurology and using PDA-specific strategies. Therefore SPFTs statements are factually grossly incorrect.

 

PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist. It does constitute an ASD sub-type which hasn't been individually described in the diagnostic manuals, but it's looking likely that the ICD11 will follow suit with the DSM-V, by diagnosing all ASDs under one umbrella code anyway, so from that perspective this point is irrelevant. However, PDA does need different strategies and support (as above).

 

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/2017/09/back-to-school-for-children-with-pda.html explains very well, how families suffer, when LAs and NHS take the attitude that PDA doesn't exist and clearly states that it does exist as a distinct ASD sub-type.  The Children Act 1989, The Children Act 2004, The SEN Code of Practice 2014 and The Children and Families Act 2014 all expect that public bodies listen to and work with families and put the needs of the child as paramount.  Denying a condition out-of-hand breaches the requirements of these Acts.

​

https://www.pdasociety.org.uk/education/teachers-guide

“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”

​

2. "It is, however, a good description of some children’s behaviour, so it is understandable that parents of children with significant difficulties, which appear to be described by ‘PDA’, might hope it will be a useful label. Unfortunately, it has been the experience of a number of clinicians in SPFT that this has not been the case."

​

SPFT needs to support this claim with documented information on research evidencing where it has *not* been useful for families to have a diagnosis of PDA, as otherwise this is just personal opinion.  The main reason to-date that some parents may not have not have found a PDA diagnosis particularly helpful, is precisely because there is not enough diagnosis and recognition of PDA, meaning that the support techniques are not known widely.  With increased accurate diagnosis of ASD-PDA the recommended support techniques and guidance will become standard information that professionals will offer and provide and it will be widely documented.  Therefore this point is paradoxical because it is clinical failure towards PDA that drives any such scenario.  Aside from that, if a parent requests PDA strategies put into provision on an EHCP or used in school, this is based irrespective of diagnosis, on a behaviour profile and as can be seen from the red text, SPFT themselves admit it is a good description of some children's behaviour.  EHCPs are needs-based, not diagnosis-based.  So even if no formal diagnosis of PDA is evident, if the child displays a PDA profile, then the PDA strategies for support should be provided and written into EHCPs.

​

3. "The original research paper from Nottingham listed only 11 patients. The team point out that this is same number of young people who were described in the first published paper about autism by Leo Kanner. However autism has been repeatedly validated as a useful and valid diagnosis around the world, whereas this has not been the case for PDA."

 

SPFT are making claims on out-of-date information and therefore this statement is incorrect.  There have been various research articles on PDA, not just one!  Five research articles are listed here: https://sites.google.com/site/lizonions/publications and another long list of fifteen here (there may be a little overlap between the two) https://www.pdasociety.org.uk/resources/published-articles There is a good and growing evidence base and one more article is in press on that first hyperlink at the time of preparing this information.  This statement is therefore ridiculous.  Dr Eaton states she has diagnosed over 100 children herself with PDA and that's just one clinician.  Children have been diagnosed on the NHS across the UK, here is a selection (https://www.zeemaps.com/map?group=1558150):

 

Kilmarnock, Ayreshire and Arran, Scotland

Stratford-upon-Avon, Warwickshire
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Liverpool, Merseyside
Todmorden, Lancashire
Sheffield, Yorkshire
Stourport-on-Severn, Worcestershire
Hawley, North Hykeham, Lincolnshire
Wolverhampton, Midlands
Nottingham, Midlands
Northampton, Midlands
Lincoln, Midlands
Birmingham, Midlands
Bristol, Avon
Slough, Berkshire
Reading, Berkshire
East Sussex (SPFT)
Andover, Hampshire
GOSH (NHS) London
Guildford, Surrey

 

The last sentence in their point 3. is therefore clearly false.  Not forgetting of course, that SPFT are contradicting themselves as one of their own clinicians, Dr Francesca Scanlon at Chalkhill, contributed to the development of the PDA screening tool the EDA-Q and children have been assessed for and diagnosed with PDA by SPFT themselves!

​

4. "There are many children who do not quite fulfil the diagnostic criteria for Attention Deficit, Hyperactivity Disorder (ADHD), Autistic Spectrum Condition (ASC), or dyspraxia; they do, however have difficulties and can be difficult to manage and diagnoses of, for example, atypical autism, are not uncommon. It can be very tough for parents who may feel dismissed by the system as not having a problem if they don’t have a label."

 

This is SPFT CAMHS' lack of clinical expertise, as to how a child with a combination of neurodiverse conditions presents, due to co-morbidities affecting one another's presentations and the clinicians lacking awareness in understanding of the nature of the spectrum. Females with ADHD also present differently from males as with ASD and are another underdiagnosed group, CAMHS has no understanding of this fact.  It's not about labels and it's insulting to children with neurodevelopmental conditions and their parents, to make such comments.  Everyone has diagnostic rights and if someone has a condition they should receive a diagnosis of it, for a long list of very good reasons and it's not for CAMHS to talk about labelling, as if diagnoses are something to avoid.  It's highly concerning that SPFT takes this approach because it means children who have neurodevelopmental conditions are not being diagnosed as they should be.  This map of neurodiversity explains the overlap: