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PDA and diagnosis

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Dr Judith Brown
Dr Judith Brown

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In a recent article in SEN magazine, Sally Russell looks at the shift in the diagnosis of pathological demand avoidance (PDA). I would be really keen to hear your feedback on the article and around PDA more generally. 

AutismAdvocate

July 27, 2017 - 9:51pm

PDA definitely exists.  And what is really frustrating is hearing clinicians say that demand avoidance is simply a typical female ASD profile.

I believe I found the research on which this claim is based (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164392/) and I think they made a classic error in assuming that because many autistic females were described as having demand avoidance, that this means it is a female ASD presentation.  They are likely to have had a lot of females who had only been partially diagnosed with other ASDs or misdiagnosed with other ASDs.  Someone can have more than one ASD subtype.  Somewhat like the DANDA map of neurodiversity, people can be placed across boundaries and have more than one neurodiverse condition.  Clinicians are not understanding the nature of the autistic spectrum or the nature of the PDA spectrum itself either.

Many with PDA also mask e.g. in school and this results in them not being diagnosed because clinicians are unable to understand that it is in fact the very serious anxiety levels that lead to them being almost frozen in fear and highly inhibited in school, hence masking.

PDA is distinct, it is very real and has to be recognised as such.  There seems to be a lot of confusion among clinicians about the way to diagnose it and comments that it cannot be diagnosed standalone.  People want it diagnosed as a standalone ASD subtype not a standalone outside of ASD condition.  The ASD diagnostic code should be used but the PDA must be definitively stated on the diagnosis.

It has to be diagnosed correctly or the individual will not have understanding of their profile and will be expected to have standard ASD support which is usually ineffective.

What is truly shocking are the attitudes of some clinicians that PDA is attachment disorder and almost mocking it as a diagnosis, such as this: https://thepsychologist.bps.org.uk/volume-29/january-2016/pda-there-another-explanation

and this: https://unsafespaces.com/2016/04/03/pathological-demand-avoidance-does-it-exist-and-if-so-what-is-it/

There is so much wrong in the above two articles I have linked I don't know where to begin.

Glad Sally has written the article and has tried to be balanced for the sake of the doubting Thomases but at this stage we need full steam ahead to secure recognition and if necessary a separate diagnostic code.

Sadly, with the UK likely following suit with the DSM of putting all ASD subtypes under one umbrella, this is the exact opposite of what is needed.  There are different ASD subtypes and different causes for them.  Amalgamating them all is a disaster and clearly has a financial basis.  The fight for PDA will therefore be harder than ever.

There are people whose lives are being destroyed by PDA.  One poor family on a PDA forum are subject to false allegations of a variety of abuse by their young adult PDA grandchild against their child for instance.  The lack of understanding by the authorities of PDA, the shocking behaviour, social confusion and sometimes pathological lying is extremely dangerous.

 

AutismAdvocate

July 28, 2017 - 11:44pm

"Underlying this is the need for “profiling” which makes sense when working with neuro-diversity, and also leads to the view that diagnoses aren’t necessarily life-long descriptors, but can change over time." (from Sally's article)

Autism is lifelong.  The diagnosis is simply the current understanding of what the condition is.  Nobody can stop being autistic.

Whether clinicians think the person still meets the diagnosis at some point is another issue, it doesn't mean the person is no longer autistic just because of what is an arbitrary (and changed over history) written statement of what the condition should look like.

https://spectrumnews.org/news/autisms-brain-signature-lingers-even-after-loss-of-diagnosis/

"Eigsti says she expected the children who had shed their autism diagnosis to show brain activity that mirrors the brain activity seen in the control group and not the autism group. Instead, those children showed a unique signature of brain activity that reflects a tendency to compensate for difficulty with language."