Today I want to talk about something called Pathological Demand Avoidance which is strongly associated with autism and a massive subject so I'll do this in at least two parts. Now I really don't like the word pathological. It sounds sort of - well - pathological. And negative. You know, pathological liar. Psychopath. It sounds very early twentieth century and medical model.
I have heard that autistics and people with this condition have renamed it as a 'Persistent Drive for Autonomy' or 'Pervasive Demand Avoidance'. If you Google it you'll find very useful links from the PDA Society whose links I'll include at the bottom as I've mainly used sections from their site. The PDA Society happily use the P word as they say it's pathological when it's more extreme whereas some level of demand avoidance is very commonplace. But when it becomes extreme it's not a case of someone choosing not to do something but being physically unable to cope with the level of demands. Still, I would use excessive maybe (this may have been suggested elsewhere?) or another word.
I prefer Demand Avoidance wherever possible.
But the term "Pathological Demand Avoidance (PDA) was originally developed by British psychologist Elisabeth Newson ... and used to describe a group of children who didn't fit into the stereotypical presentation of autism recognised at that time but who shared certain characteristics with each other, the key one being a persistent and marked resistance to demands."
"The overwhelming anxiety of realising that a demand cannot be avoided, or that these forms of resistance have been exhausted, may result in meltdown or panic, potentially including aggression. These states are usually out of the person's control."
The proposed core characteristics most commonly cited are:
- resisting and avoiding the ‘ordinary demands of life’
- using social strategies as forms of resistance – for example, distraction, giving excuses
Other proposed characteristics cited include:
- appearing sociable, but experiencing differences in social understanding (such as recognising hierarchies)
- experiencing intense mood swings and impulsivity
- appearing comfortable in role play and pretence
- displaying dedicated and focused interests, often focused on other people.
The article made a distinction between 'direct demands' and 'indirect demands'. Direct demands are requests or questions made by other people or situations such as ‘put your shoes on’, ‘sit here and wait’, ‘pay this bill’ or ‘would you like a drink?'
In addition to these more obvious direct demands, there’s a whole raft of indirect and internal demands, including:
- Time – time is an additional demand on top of the demand itself
- Plans – advance planning may lead to increased anxiety as the time/date for ‘the plan’ nears, but equally the intolerance of uncertainty that is a key factor in PDA may make ‘spur of the moment’ activities tricky …
- Questions – the expectation of being required to respond to a direct question can be disabling
- Decisions – sometimes knowing a decision has to be made makes it a demand, or ‘options paralysis’ may set in if there are too many possibilities
- Internal bodily demands – such as thirst or needing the bathroom
- Thoughts/desires – internal feelings
- Uncertainty – research from Newcastle University showed that intolerance of uncertainty is a significant factor in PDA, with PDA autistics needing to know and feel in control of what’s going on
- Praise – this carries the implied expectation that the action will be carried out again or improved on next time, and so may not achieve the positive reinforcement that may be intended
- Transitions – the demand to stop and switch what you’re doing and also the uncertainty around what may come next
- Expectations – from others and of yourself
- Sensory overload & sensory integration difficulties
- Other people’s ‘energy’ and presence
- Things we want to do – like hobbies, seeing friends or special occasions – so not just the things we might not want to do like housework or homework.
“The single most important thing to a PDA individual is their autonomy; to decide things for themselves and be in complete control of what they do and where they are going."
– Jo Richardson, Different not deficient
"If I put something in my diary, as soon as it's in black and white and it's a demand, I feel anxiety. I feel anxiety as I put it in my diary; I feel anxiety in the lead up; I feel anxiety on the morning when I wake up and that thing is in my diary. It makes me experience demand avoidance, even if it's something I wanted to do. Ditto putting a task on my 'To do' list – as soon as the demand is on my 'To do' list, it's a demand and it causes anxiety."
– Purple Ella, Demand avoidance
“I’ve found that by giving myself an ‘out’ then it is much easier to meet demands, because I know I can change my mind whenever I want. I’ll tell myself, ‘You don’t have to if you don’t want to’, this works quite well.”
– Riko Ryuki, Adult coping strategies
“Being actively given freedom and autonomy, through choices, self-direction, autonomous motivation, and respect of competence and consent, can empty the ‘demand cup’ bit by bit, and keep it emptier. Further to this, allowing plenty of demand free time and rest allows the demand cup to naturally empty.”
– Tomlin Wilding, The Demand Cup
“Direct demands should be removed from language wherever possible; it is vital to reconsider the words we use to communicate. So no 'need, must, have to' and instead much more of 'may, could, would you like, how about' etc. More of 'I wonder if we might be able to..' or 'I'm not sure how to do this, could you show me?”
– Steph Curtis, Strategies for PDA
These are all so relatable and a whole lot of similar scenarios and different ones which I'll do a separate video on next time.
https://www.pdasociety.org.uk/what-is-pda-menu/about-autism-and-pda/
https://www.pdasociety.org.uk/what-is-pda-menu/what-is-demand-avoidance/
Please do let me know your thoughts by leaving a comment below.
Many thanks 😊
really clear and excellent, kate.xxx
ReplyDeleteexcellent, kate.
ReplyDeleteThank you 😊xxx
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