Pervasive Developmental Disorder - Not otherwise Specified vs Pathological Demand Avoidance Syndrome.
For those not living on the right side of the Atlantic, Pathological Demand Avoidance is probably not a term you would be familiar with. For a host of socio-political reasons, the way research, funding and promotion of certain medical causes over the exclusion of others is done in the States, there is no recognition of this AS subset on the North American Continent. Even in Cont. Europe and the British Isles, there has been debate as to whether it is a form of autism or early manifestations of psychosis or some schizoaffective-type disorder.
We've never been keen on our son's PDD-NOS diagnosis (at age 13) primarily because PDD seems to be such an all-inclusive, vague umbrella.
When we came across term Pathological Demand Avoidance - the name itself grabbed us - as it so encapsulated life with our son, we were in a state of near-shock - THIS IS IT. THIS IS WHAT ___ HAS! It seemed to give more definition, to narrow things, to highlight the profoundly subtle differences in behaviour contrasted with AS.
A quick, very imperfect working definition of PDA would be Opposition Defiance Syndrome with elements of AS
I've copied/highlighted a few sections from Autism.Org in the U.K., for the benefit of North American readers.
For those of you in Europe, the UK, Ireland, etc., and are familiar with it, I would dearly love your input.
Cheers!
Quote:
What is pathological demand avoidance?
Pathological demand avoidance (PDA) is increasingly, but not universally, accepted as a behaviour profile that is seen in some individuals on the autism spectrum.
People with a demand avoidant profile share difficulties with others on the autism spectrum in social communication, social interaction and restricted and repetitive patterns of behaviours, activities or interests.
However, those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behaviour is rooted in an anxiety-based need to be in control.
While the demand avoidant profile has been found to be relatively uncommon, it’s important to recognise and understand the distinct behaviour profile as it has implications for the way a person is best supported.
Features of a demand avoidant profile
Autism is dimensional and the different profiles affect people in varying ways and to different degrees.
People with a demand avoidant profile can appear to have better social understanding and communication skills than others on the autism spectrum, and are often able to use this to their advantage. However, they might not really have as good an understanding of social matters as it seems.
The distinctive features of a demand avoidant profile include:
People with this profile can appear controlling and dominating, especially when they feel anxious. However, they can also be enigmatic and charming when they feel secure and in control. It’s important to acknowledge that these people have a hidden disability.
People with a demand avoidant profile are likely to need a lot of support. The earlier the recognition of PDA, the sooner appropriate support can be put in place.
The characteristics of PDA
The main characteristic of a demand avoidant profile is a high level of anxiety when demands are placed on that person. Demand avoidance can be seen in the development of children, including those on the autism spectrum. It’s the extent and extreme nature of this avoidance, together with displays of socially shocking behaviour that leads to it being described as 'pathological'.
Resists and avoids the ordinary demands of life
People with PDA can appear to be very stressed by even simple everyday expectations and they may attempt to avoid these to a remarkable extent.
Demands might include a suggestion that it’s time to get up, go out of the house or join an activity. At times any suggestion made by another person can be perceived as a demand.
This may even be the case when the person seems to want to do what has been suggested
For some, avoidance may seem their greatest social and cognitive skill and the strategies they use are essentially socially strategic. These can include:
- distracting the person making the demand
- acknowledging the demand but excusing themselves
- procrastination and negotiation
- physically incapacitating themselves
- withdrawing into fantasy
- physical outbursts or attacks.
Underpinning this avoidance is an anxiety about conforming to social demands and of not being in control of the situation.
People with other autism profiles may also react to social demands by becoming avoidant but tend to do this in ways that aren't very social in nature eg ignoring, withdrawing or walking away.
Someone with a demand avoidant profile may seem to have enough social understanding to adapt their strategies to the person making the demand. Parents very often use the term 'manipulative' to describe this aspect of their child's behaviour and will comment on how it seems to be their greatest skill, often saying "if only they would put half the effort in to doing what it was I wanted as they do to getting out of it."
Those with PDA may also use straightforward refusal or outbursts of explosive behaviour, including aggression. This is probably a form of panic on their part and is usually displayed when other strategies haven’t worked or when their anxiety is so high that they 'explode' or have a 'meltdown'. This can be suddenly shouting, screaming, throwing things and physically lashing out.
Appear sociable, but lack depth in understanding
People with a demand avoidant profile tend to:
- appear social at first and be 'people-orientated'
- have learnt many social niceties and may decline a request or suggestion politely
- seem well tuned in to what might prove effective as a strategy with a particular person
- be unsubtle and lack depth – they can be misleading, overpowering and may overreact to seemingly trivial events
- have difficulty seeing boundaries, accepting social obligation and taking responsibility for their actions
- display confusing behaviour and contradictory moods, eg hugging becomes pinching or a child may embrace their parent while saying something like "I hate you"
- as children, lack a sense of pride or embarrassment, and behave in uninhibited ways
- as children, fail to understand the unwritten social boundaries that exist between adults and children and can become overfamiliar or bossy.
...
Excessive mood swings and impulsivity
Difficulty with regulating emotions is common in autistic people, but early studies found it especially prevalent in people with a demand avoidant profile. They may switch from one mood to another very suddenly in a way that can be described as "like switching a light on and off".
To other people, the emotions can seem very dramatic and over the top, like an act, and there’s sometimes no obvious reason.
But this switching of mood can be in response to perceived pressure or a demand, and is driven by the need to control.
It can make children with a demand avoidant profile very unpredictable. For most, this difficulty continues into adulthood.
...
Severe behavioural difficulties
A large proportion of people with a demand avoidant profile can have real problems controlling and regulating their emotions, particularly anger. As children, this can take the form of prolonged meltdowns as well as less dramatic avoidance strategies like distraction and giving excuses. It is essential to see this as extreme anxiety or 'panic attacks' and to treat them as such. Try using reassurance, calming strategies and de-escalation techniques.
Similar to others on the autism spectrum, the behaviour of a person with a demand avoidant profile can vary between settings. For example, a child can appear very anxious at home, but calm at school. This is a learned coping strategy, and a lack of understanding of the real reasons for these differences can make parents feel very isolated and inadequate.
In other cases, ‘outbursts’ are far worse at school, where demands may be much greater, and this can lead to multiple exclusions at an early age. For some children, this anxiety can develop to such an extent that they become school refusers.
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--- The National Autistic Society, WhatIsPDA, Autism.Org.UK
Sep 05, 2018, 11:56 PM
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