From The PDA Society, probably one of the best resources on PDA.
Demand avoidance’ involves not being able to do certain things at certain times, either for yourself or others, and also refers to the things we do in order to avoid demands.
It’s a natural human trait – avoiding demands is something we all do to different degrees and for different reasons.
When demand avoidance is more significant there can be many possible reasons for this – it could be situational; relate to physical or mental health; or relate to a developmental or personality condition. It is sometimes difficult to distinguish underlying causes, but a PDA profile isn’t necessarily always the best explanation for extreme demand avoidance. It’s also important to remember that marked demand avoidance is the most significant, but not the only, trait in a PDA profile. For a detailed exploration of other explanations for marked demand avoidance, please see Identifying & Assessing a PDA Profile – Practice Guidance.
This page explores autistic demand avoidance, PDA demand avoidance and the types of demand avoidance approaches seen in PDA.
Autistic demand avoidance
Autistic people may avoid demands or situations that trigger anxiety or sensory overload, disrupt routines, involve transitioning from one activity to another, and activities/events that they don’t see the point of or have any interest in.
They may refuse, withdraw, ‘shutdown’ or escape in order to avoid these things.
Helpful approaches include addressing sensory issues, helping individuals adjust to new situations (for instance by using visuals or social stories), keeping to a predictable routine, giving plenty of notice about any changes or accepting that avoiding some things is perfectly acceptable.
Demand avoidance in PDA
With PDA, these same types of demands or situations may be avoided for the same reasons.
However, pathological demand avoidance is all-encompassing and has some unique aspects:
- many everyday demands are avoided simply because they are demands. Some people explain that it’s the expectation (from someone else or yourself) which leads to a feeling of lack of control, then anxiety increases and panic can set in
- in addition, there can be an ‘irrational quality’ to the avoidance – for instance, a seemingly dramatic reaction to a tiny request, or the feeling of hunger inexplicably stopping someone from being able to eat
- the avoidance can vary, depending on an individual’s capacity for demands at the time, their level of anxiety, their overall health/well-being or the environment (people, places and things).
A PDA profile is also a spectrum and presents differently in different people. Some individuals may have a more externalised or active presentation – where demand avoidance may be overt, physical, aggressive or controlling. Others have more internalised or passive presentations – where demands may be resisted more quietly, anxiety is internalised and difficulties are masked. Many may have a variable presentation, depending on other factors like how well they are managing at the time, the environment, the setting, their age and so on.
PDA demand avoidance isn’t a choice and is lifelong – it’s seen in infants and remains part of the experience into old age. With understanding, helpful approaches from others and finding self-coping and coping strategies, it can become more manageable.
What are demands?
Demands in PDA are many and cumulative. It can be helpful to think about some of the different ‘types’ of demands. Thank you to PDA adult and advocate Julia Daunt for sharing this image with us:
Let’s first look at direct 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.
Then there are demands within demands – the smaller implied demands within larger demands (for example, within the demand of going to the cinema are the demands of remaining seated, responding appropriately, sitting next to other people you don’t know, being quiet etc. etc.).
And there are the many “I ought to” demands of daily life – getting up, washing, brushing teeth, getting dressed, eating, cooking, chores, learning, working, sleeping … the list goes on.
Demands will be perceived differently by different individuals, and response to demands may also be variable (please see helpful approaches for children and self-help & coping strategies for adult PDAers for more on balancing demands and tolerance for demands). But once you begin to look at life in terms of demands you can see how all pervasive they are and how difficult things might be for someone with a PDA profile of autism.
What demand avoidant approaches might you see with PDA?
With PDA, people may also simply refuse, withdraw, ‘shutdown’ or escape in order to avoid things, though more often other ‘social’ approaches are tried first – research from Newcastle University found that there’s usually a ‘hierarchy’ of avoidance approaches (although escalation can be very rapid, especially if pushed, and not all the ‘stages’ in this illustrative diagram may be seen (i.e. someone may go straight from the green zone to the red zone)).
Initial avoidance approaches might include distraction (changing the subject, engaging in interesting conversation), procrastination, excusing yourself (giving explanations as to why you can’t comply), incapacitating yourself (saying ‘my legs don’t work’ or ‘I’m sorry that would aggravate my arthritis’) or withdrawing into role play or fantasy or reducing meaningful conversations … our video below gives some examples. Understanding this hierarchy of avoidance approaches is key when thinking about effective ways to help.
If these approaches don’t enable the demand to be avoided – or aren’t noticed or acted on by others – there may be a rapid escalation as panic sets in and options run out. This isn’t a deliberate choice, it’s an instinctive flight/fight/freeze response. Meltdowns in PDA are best understood as being like panic attacks.
Helpful approaches recommended for autism (addressing sensory issues, helping individuals adjust to new situations, keeping to a predictable routine, giving plenty of notice about any changes or accepting that avoiding some things is perfectly acceptable) can be beneficial with PDA, though are often not effective without a more holistic approach based on collaboration, negotiation, flexibility and careful use of language. All approaches also need to be adapted to take account of demand avoidance – for instance, giving notice is important but giving too much notice creates time for the impending demand to accumulate.
You can read the original article here.