‘Pathological Demand Avoidance’…as diagnoses go, it’s not the most friendly or catchy is it? In fact when I first heard it, my mind latched on to the word ‘pathological’ and I started to think of all kinds of creepy things:
Pathological Killers
Pathological Liars
Pathology Lab – The place where autopsies are carried out…
I watch a lot of crime dramas so these connotations aren’t surprising for a weirdo like me. What I’m trying to get at, is that it’s a really scary and alienating title for a person’s neurology. This is further compounded by the fact that this little known part of the autism spectrum is quite mysterious and misunderstood.
Ok so what exactly is PDA? The identifying characteristics were first noted in the 1980s by a remarkable woman called Elizabeth Newson. She was working with some autistic children who displayed certain behaviours that seemed to go against the grain of what professionals traditionally associated with autism. The distinctive features of a PDA profile of autism she defined from her clinical practice and research are:
- resisting and avoiding the ordinary demands of life – the key words here are ‘ordinary demands’, so this might include getting up, getting dressed, eating a meal or washing. Significantly, it includes things that someone might want to do/enjoy.
- using ‘social’ strategies as part of the avoidance – this means not just saying no, withdrawing, shutting down or running away, but a variety of avoidance approaches including distraction, making excuses, physical incapacitation, withdrawing into fantasy, procrastination, controlling, reducing meaningful conversation or masking.
- appearing sociable, but lacking some understanding – meaning that individuals may appear more sociably ‘able’ than one might expect (with, for instance, more ‘socially accepted’ eye contact or conversational skills) but that this may mask underlying differences/difficulties in social interaction (for instance, not seeing any difference between themselves and an authority figure) and communication (for instance, whilst an individual may be very articulate, their understanding of others may not be so robust).
- experiencing intense emotions and mood swings – meaning difficulties with emotional regulation, rapid mood swings, impulsiveness and unpredictability.
- comfortable in role play, pretence & fantasy – this can sometimes be to an extreme extent with other personas (be that a person or an animal) being adopted for a prolonged period of time. The line between fantasy and reality can sometimes become blurred.
- focusing intently, often on other people – with PDA, “repetitive or restrictive interests” are often social in nature, relating to real or fictional people
- a need for control which is often anxiety related.
The above info can be found on the PDA Society website: http://www.pdasociety.org.uk
Another key point to mention is that with PDA, individuals are unlikely to respond to most conventional approaches to autism. Helpful approaches for PDAers are based on trust, negotiation, collaboration, flexibility and careful use of language.
Now this bit gets a bit heavy but please bear with me because it will be worth it in the end, I promise…
Here in the UK, in order for a medical or psychological condition to officially exist, it needs to appear in the ICD-10 (International Statistical Classification of Diseases and Related Health Problems 10th Revision). In the US, they use the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition). Got that? Phew, ok then.
The main reason for PDA not appearing in either seems to be because of a lack of a consensus between professionals regarding whether or not PDA is:
A standalone diagnosis, separate to autism (such as ADHD for example).
Or a collection or ‘profile’ of autistic behaviours, and therefore should be diagnosed under the umbrella term of ‘autism’ (as with Aspergers Syndrome, a term which is no longer used).
In some parts of the UK it’s possible to get a diagnosis of ‘autism with a demand avoidant profile’, or ‘autism with extreme demand avoidance’ or similar, which at least acknowledges the existence of demand avoidance and it’s connection with some autistic behavious. But it is not possible to get a standalone diagnosis of PDA on the NHS.
Clearly there’s a real issue with diagnosing PDA by the professionals, with this postcode lottery to get a ‘sort-of’ diagnosis by a possibly confused reluctant paediatrician. This in turn causes buckets of frustration and stress for many parents and PDAers themselves who are frequently forced to pay for a private diagnosis.
Are you still with me? Maybe it’s time to get a cup of tea and some headache tablets…
On the flip side however, the PDA indicators/behaviours are so clear, precise and descriptive that many parents and adult non-diagnosed PDAers read them and have what’s commonly called The Lightbulb Moment. We certainly did.
In case you’re thinking ‘what’s with this obsession to get a label for her child?’, let me put across my reasons for wanting and needing the correct diagnosis with a little help from the National Autistic Society:
- Many parents and teachers find that some of the recommended strategies used with autistic children are not effective for a child with a PDA profile.
- There hasn’t been enough research for PDA to be used as a diagnostic term, but some clinical diagnostic teams do describe it as a profile that they recognise within the autism spectrum. This recognition of need has been found to be helpful when signposting to other professionals for support.
- One of the most important reasons for distinguishing this demand avoidant profile from other conditions and autism profiles is to ensure that the child is supported by the right educational approach.
- People with this profile don’t usually respond to structure and routine. An indirect style of negotiation will mean they feel more in control of their learning and consequently less anxious.
In a nutshell, without the right diagnosis you run the risk of not getting the correct support from school, and not knowing how best to support your child. Unacceptable, right?
Imagine this. If you were diabetic and had received a diagnosis of ‘diabetes’ from your GP, you would assume that you would be told if it were type 1 or type 2, right? The presentation and treatments for each condition are vastly different and understandably you would not be satisfied if the NHS were not entirely specific in their diagnosis. You would push like crazy for your diagnosis to be amended to reflect the defining characteristics of your condition, so you could start the correct treatment plan.
This is exactly the same with autism and PDA. Yes, there are crossover characteristics between autism and PDA (the spectrum isn’t linear) but PDA behaviours stem from one thing and one thing only: the need to be in control at all times.
A Boy Less Ordinary 