Again I have stolen most of the below from The National Autistic Society. And if you want the full article just click here. I have not used the whole article as it is long and have mainly kept the bits that are most relevant to our situation.
Pathological Demand Avoidance is now considered to be part of the autism spectrum. Individuals with PDA share difficulties with others on the autism spectrum in social aspects of interaction, communication and imagination. However, the central difficulty for people with PDA is the way they are driven to avoid demands and expectations. This is because they have an anxiety based need to be in control.
People with PDA seem to have a better social understanding and communication skills than others on the spectrum and are able to use this to their advantage.
The main features of PDA are:
- resists and avoids the ordinary demands of life
- appearing sociable, but lacking depth in understanding
- excessive mood swings and impulsivity
- comfortable in role play and pretend, sometimes to an extreme extent
- language delay, often with good degree of catch-up
- obsessive behaviour, often focussed on people.
As the term spectrum suggests, individuals are affected in different ways and to varying degrees.
People with PDA can be controlling and dominating, especially when they feel anxious. However, they can be enigmatic and charming when they feel secure and in control. Many parents describe their child with PDA as a ‘Jekyll and Hyde’ character. It is important to acknowledge that these children have a hidden disability. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition.
People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.
Many children are not diagnosed until they are older and may already have a diagnosis of autism or Asperger syndrome. Sometimes parents may feel that something about this diagnosis doesn’t quite fit. It is usually the surface sociability and the often vivid imaginations of children with PDA which confuse professionals regarding the diagnosis.
Having a diagnosis of PDA is helpful for a number of reasons as it:
- helps people with PDA and their families to understand why they experience certain difficulties and what they can do about them
- allows people to access services, support and appropriate advice about management strategies
- avoids other incorrect diagnoses and assumptions
- informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions. This helps to avoid school exclusion.
The characteristics of PDA
The main characteristic of PDA is a high level of anxiety when demands are placed on that person. Demand avoidance can be seen in the development of many children, including others on the autism spectrum. It is the extent and extreme nature of this avoidance that causes such difficulties, which is why it has been described as ‘pathological’.
Resists and avoids the ordinary demands of life
This is the feature of behaviour that gives the name to the syndrome. Children can seem under an extraordinary degree of pressure from 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 a family activity. At times any suggestion made by another person can be perceived as a demand.
For some, avoidance may seem their greatest social and cognitive skill and the strategies they use are essentially socially manipulative. These can include:
- distracting the adult
- acknowledging the demand but excusing self
- procrastination and negotiation
- physically incapacitating self
- 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
Of course, children with autism may also react to social demands by becoming avoidant but they tend to do this in ways that aren’t very social in nature eg ignoring, withdrawing or walking away. A key feature of PDA is that the child has sufficient social understanding to use a level of social manipulation in their attempts and will often adapt 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 a form of panic on their part and is usually displayed when other strategies haven’t worked or when their anxiety is too high that they will ‘explode’ or have a ‘meltdown’. This can take the form of shouting, screaming, throwing things and physically lashing out, often in a very sudden and dramatic way.
Not all individuals with PDA have explosive outbursts, but it seems to affect a significant number.
Appearing sociable, but lacking depth in understanding
Children with PDA 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 over react to seemingly trivial events
- have difficulty seeing boundaries, accepting social obligation and taking responsibility for their actions.
A feature of this poor judgement is an ambiguity in their mood and responses eg hugging becomes pinching or a child may embrace their parent while saying something like “I hate you”. This demonstrates both their own confusion and the fact that their behaviour can be confusing to others.
Individuals with PDA often fail to understand the unwritten social boundaries or divides that exist between adults and children. They can become overfamiliar or come across as bossy. They also seem to lack a sense of pride or embarrassment and can behave in very uninhibited ways.
Excessive mood swings and impulsivity
People with PDA switch from one mood to another very suddenly in a way that can be described as “like switching a light on and off”. The emotions shown may seem very dramatic and over the top or, according to some parents, like an act.
Difficulty with regulating emotions is common in all children on the autism spectrum, but early studies found it especially prevalent in PDA. Mood swings and impulsivity, were also shown to persist beyond childhood in the majority of those with PDA. This switching of mood often seems to be driven by the child’s need to control and they can:
- switch moods rapidly, often for no obvious reason
- switch moods as a response to a perceived pressure
- change mood in an instant if they suspect that someone else is exerting control.
Rapid and often unexpected changes of moods, together with their overall variability of behaviour, can make children with PDA very unpredictable.
Comfortable in role play and pretend, sometimes to an extreme extent
Children with PDA are often highly interested in role play and pretend. This was recognised early on as being different from other children on the autism spectrum. Children with PDA often mimic and take on the roles of others, extending and taking on their style, not simply repeating and re-enacting what they may have heard or seen in a repetitive or echoed way. About a third of children in early studies were reported to confuse reality and pretence at times.
Individuals with PDA, especially children, will often incorporate role play or pretend in the strategies that they use to avoid demands or exercise control. When they become involved in play scenarios with other people, they will nearly always try to direct and this can cause real conflict, especially with other children.
Obsessive behaviour, often focused on people
Strong fascinations and special interests pursued to an ‘obsessive’ degree are very characteristic of children across the spectrum. Due to that, this characteristic does not distinguish a child with PDA from others on the autism spectrum. However, Elizabeth Newson noted that the demand avoidant behaviour itself usually has an’‘obsessive feel’.
Children with PDA may have a strong fascination with pretend characters and scenarios. The subjects of fixations for people with PDA can also revolve around specific individuals they interact with. This can result in blame, victimisation and harassment that cause problems with peer relationships.
Just as in autism and Asperger syndrome, people with PDA can have difficulty processing everyday sensory information such as sound, sight, smell, taste, and touch. They can also have vestibular (balance) and proprioception (body awareness) difficulties.
Severe behavioural difficulties
A large proportion of people with PDA can have real problems controlling their temper. As children, this can take the form of prolonged meltdowns as well as less dramatic avoidance strategies like distraction, giving excuses etc. It is essential to see this as extreme anxiety or ‘panic attacks’ and to treat them as such.
Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school. This is a learnt coping strategy that 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.