My Family, Our Needs has asked The PDA Society to tell us more about Pathological Demand Avoidance.
- What is Pathological Demand Avoidance?
- What are the main features of Pathological Demand Avoidance?
- What is a demand?
- What is demand avoidance?
- What are people with Pathological Demand Avoidance like?
- What does it feel like to have PDA?
- How can I support my child with Pathological Demand Avoidance?
- What do the experts say about Pathological Demand Avoidance?
- Where can I find out more about Pathological Demand Avoidance?
People with Pathological Demand Avoidance or PDA are driven to avoid demands due to their high anxiety levels when they feel that they are not in control. We might all feel that there are times when we’d like to avoid demands and expectations, but in individuals with PDA, their avoidance is clinically-significant in its extent and extreme nature.
PDA is increasingly recognised as being part of the autism spectrum. It’s a diagnostic profile or sub-type within autism. It was first identified in the 1980s by Dr Elizabeth Newson, who studied a group of young people who exhibited features of autism, but were somewhat different and whose profiles were similar to each other.
Individuals with PDA share difficulties with others on the autism spectrum in terms of social aspects of interaction and communication, together with some repetitive behaviour patterns. However, people with PDA often seem to have better social understanding than others on the spectrum, which means some of their difficulties may be less obvious at first.
Children and adults with PDA can also mask their difficulties and their behaviour can vary between settings. For instance, a child may appear calm and compliant at school, but extremely anxious and volatile at home, or they may have greater difficulties at school where demands are higher. This can be confusing and can result in misunderstandings between parents and the professionals involved with a child.
Misdiagnosis or missed diagnosis of Pathological Demand Avoidance is common. In a survey of 138 children before the PDA Society’s conference in 2015, it was found that on average they had 2.5 diagnoses each! This is partly because unpicking the complexities involved in assessing individuals who present with a PDA profile can be tricky. However, using inappropriate support strategies for individuals with PDA can be ineffective, counter-productive and even, in some cases, damaging, so it is essential that PDA is more widely understood.
The phraseology around diagnosis isn’t necessarily important – some individuals are diagnosed with PDA as a standalone condition, but many more receive a diagnosis of ‘ASD characterised by extreme demand avoidance’ or ‘ASD with a PDA profile’ or ‘ASD sub-type PDA’ or ‘atypical autism with demand avoidant tendencies’.
The most important factor is that, whilst acknowledging the underlying autism diagnosis, it’s a clear signpost to the alternative PDA management strategies which will help the individual.
The main features of Pathological Demand Avoidance are:
- Resisting and avoiding the ordinary demands of life, which might include getting up, joining a family activity or other day to day suggestions. This may be the case even when the person seems to want to do what has been suggested.
- Using social strategies as part of the avoidance, e.g. distracting, giving excuses, rather than simply ignoring, refusing or withdrawing.
- Appearing sociable on the surface (for instance, people with PDA may have a more socially standard use of eye contact or conversational skills than others on the autism spectrum), but lacking depth in their understanding (for instance, not seeing a difference between themselves and an authority figure).
- Excessive mood swings and impulsivity, sometimes described as a Jekyll and Hyde type scenario or that they go from zero to 100mph in 2 seconds.
- Being comfortable in role play and pretence, sometimes to an extreme extent and often in a controlling fashion. This may be a means of trying to cope with their own anxiety or avoid demands (for instance, some children role-playing may say something like ‘I can’t pick that up because I’m a tractor and tractors don’t have hands’).
- ‘Obsessive’ behaviour that is often focused on other people, which can make relationships very tricky.
Direct demands are perhaps the easiest to understand. Think how many there might be on an average school morning, ’Wake up – get up – wash your face – put your clothes on – brush your hair – eat your breakfast – take your tablets – go to the toilet – get your bag – repack your bag – get your coat – what do you mean you don’t know where your coat is? – get your lunchbox’!
Direct demands are many and cumulative, and it’s easy to see how anxiety levels will be raised from the moment of waking up and can quickly get to overload point even before a child has left the house.
But there is also a whole raft of indirect demands…peer pressure, fear of the unknown, praise, transitions, expectations, sensory sensitivities, special occasions, like birthdays or Christmas or trips out.
When you think of life in terms of demands, it’s easier to see how the PDA ‘worry bucket’ can rapidly overflow.
The latest research from Newcastle University, has shown that individuals with PDA may engage in different types of behaviours in a hierarchical manner, with meltdown being the last uncontrollable panic attack when other strategies have been unsuccessful.
So, what demand avoidance tactics might you see earlier in the process?
These might involve:
- Distraction – ‘Look at that’.
- Making excuses – ‘I can’t do that’.
- Physically incapacitating themselves – ‘My legs don’t work.’
- Withdrawing into fantasy – ‘But I’m a tractor and they don’t have hands’.
- Reducing meaningful conversation – for instance, by mimicking the person making the demand or bombarding them with noise.
- Procrastination – ‘I’ll do it, but just not now…’.
- Sometimes a person may seem completely compliant – they may be role-playing the perfect child or pupil, and thus manage to remain under the radar. But, this can often be at the expense of behaviour at home, where the child will feel safe to release a build-up of anxiety. This coping strategy is known as masking.
- Or very often, they will try to be very controlling – as taking control can help to reduce the unpredictability of the other person asking something of them which will cause them anxiety.
Often individuals with PDA are highly-skilled at these avoidance techniques – with family members saying that if they would only put half the energy into actually doing the task as they do into avoiding it, life would be much more straightforward!
And if these avoidance behaviours don’t work, individuals can rapidly reach crisis point. We may then see shouting, swearing, hitting, kicking, damage to the home, running, self-harm. It’s important to remember that a meltdown is in fact a panic attack. And by approaching it this way, we are more likely to adopt effective strategies.
The old adage of ‘if you’ve met one person with autism, you’ve met one person with autism’ holds very true for PDA.
It’s also important not to lose sight of the fact that individuals with PDA have many positive qualities. They are often very likeable, sociable and chatty. They can have real charm and charisma, be affectionate, determined, creative and passionate, have a vivid imagination and enjoy humour. These many strengths and qualities can also be channelled to capture their interest in learning and socialising.
‘It makes me feel afraid when people look at me, but I don’t know why.’
‘It makes me feel sad when I get so angry I hit people. My insides feel tight and I can’t hear properly. After I don’t remember what I’ve done.’
‘For me it’s like being in a poorly designed, constantly malfunctioning robot. At several points throughout my life, I spiralled into dark depression amidst self-blame and self-hatred.’
‘Although I am acting angry, what I am feeling is terror.’
‘It’s a bit like the film Inside Out, and the demand avoidance character takes over driving my brain. It’s like the worst form of self-sabotage. I feel most anxious when someone is forcing me to do something that I cannot do, and they don’t understand what I mean when I say I can’t do it, then I go straight into panic mode.’
The recommended support strategies for individuals with PDA are very specific and very different to those for people with other autism profiles. In place of firm boundaries and the use of rewards, consequences and praise, individuals with PDA respond better to an approach based on negotiation, collaboration and flexibility.
The PDA Society has recently introduced a giant panda as its new ambassador. By symbolising one of the key points about PDA – that individuals with PDA need tailored support in order to thrive and may otherwise have an increased likelihood of poor outcomes, just like giant pandas – it is hoped that this concept will help everyone to understand the needs of those with PDA, to help raise awareness, increase acceptance and be united on what actions to take in order to be most effective.
Support strategies for Pathological Demand Avoidance include:
- Being very flexible and creative.
- Reducing the number of demands, where possible.
- Using indirect language, humour and games to obscure demands.
- Depersonalising requests (e. using written suggestions or attributing reasons for requests to other factors, such as health and safety).
- Giving choices and using negotiation.
- Choosing priorities – which demands are necessary and which can be left till later.
- Using indirect praise and affirmation.
- Exploring different ways of reducing and managing anxiety, including helping individuals to feel more in control.
- Always allowing plenty of time, because time itself can be a demand.
- Thinking and planning ahead – trying to avoid escalations and trying to keep demands and an individual’s capacity to cope with demands in balance. Sometimes this may mean reducing demands almost entirely to allow an ‘anxiety detox’.
‘PDA is best understood as an anxiety-driven need to be in control and avoid other people’s demands and expectations.’ – Phil Christie, Consultant Child Psychologist.
‘There is a real coping problem here which has to be recognised. The problem is an incapacity rather than naughtiness. “Being told” cannot solve the problem and nor can sanctions.’ – Dr Elizabeth Newson, Developmental Psychologist.
‘PDA is a very real clinical problem…intervention and treatment currently rest almost entirely on guesswork, clinical experience and trial and error. It is one of the most difficult to treat” constellations of problems in the whole of child and adolescent psychiatry. Strategies developed for ASD, ODD and ADHS are often ineffective.’ – Professor Christopher Gillberg, Professor of Child and Adolescent Psychiatry at the University of Gothenburg and Honorary Professor at University College London.
Diagnostically, the PDA sub-group is recognisable and has implications for management and support. – Dr Judith Gould, Lead Consultant at the Lorna Wing Centre for Autism.