PDA autism Does your child have this new autism trait?


PDA autism Does your child have this new autism trait?

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Autistic-James
Autistic-James
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What is pathological demand avoidance?
Here we look at pathological demand avoidance as a behaviour profile within the autism spectrum. We explain what PDA is, the characteristics of PDA and how to begin the assessment process. We also look at guidelines for parents and education staff.


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 PDA behaviour 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 PDA 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 the PDA profile

Autism is dimensional and the different profiles, including PDA, affect people in varying ways and to different degrees.

People with PDA 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 PDA profile include:

resists and avoids the ordinary demands of life
uses social strategies as part of avoidance, eg distracting, giving excuses
appears sociable, but lacks understanding
experiences excessive mood swings and impulsivity
appears comfortable in role play and pretence
displays obsessive behaviour that is often focused on other people.
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 PDA are likely to need a lot of support. The earlier the recognition of PDA, the sooner appropriate support can be put in place.

PDA in the early years

According to the Elizabeth Newson Centre, many people with a PDA behaviour profile had a passive early history. This means that as infants, they:

didn’t reach
dropped toys
‘just watched’
were delayed reaching milestones.
As an infant grows, and more is expected of them, they can begin to strongly object to and resist normal demands. A few actively resist from the start – everything is on their own terms.

Many parents of children with PDA feel that they have been wrongly accused of poor parenting through a lack of understanding. These parents need a lot of support, as their children can present with severe behavioural challenges.


The characteristics of PDA

The main characteristic of a PDA behaviour 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 PDA profile seems 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 the PDA 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.
Edward's parents talked about how he treats everyone the same.

For support from Uk contact

You asked about PDA and children

For a private consultation there is a Dr Judy Eaton - at Help for Psychology

https://www.help4psychology.co.uk/

Home [help4psychology.co.uk]

www.help4psychology.co.uk

Help for Psychology was set up primarily to offer assessment, diagnosis and support to children, adults and their families affected by developmental difficulties such ...

and Dr Jo Jones, a Paediatrician

http://www.healthcare4kids.co.uk/

who might be of help.

Another option is to ask the GP to ask the CCG for out of county NHS funding to be seen at the NAS Lorna Wing Centre or the Elizabeth Newsom Centre, but this may be refused or mean a long wait.

Hope this helps

GO


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