What is PDA?
Pathological Demand Avoidance (PDA) is increasingly recognised as one of the autism spectrum profiles. People with PDA share some features with others on the autism spectrum in terms of differences in their social communication, social imagination, repetitive and restricted behaviours and sensory differences. Seemingly good social awareness masks high levels of anxiety which means they often struggle significantly to cooperate with everyday expectations or requests. Although others with autism also experience anxiety which can lead to avoidant behaviours, people with PDA are affected in this way to an extreme degree, which impacts on their everyday thinking and behaviour. Children with PDA don’t only avoid ordinary requests that many of their peers would view as unappealing such as tests, homework, bedtime etc but they may also avoid events that you may think they would enjoy, that are well within their capability and which are often mundane (i.e. usually non-threatening.) Some individuals with PDA can even avoid expectations they place on themselves. Children with PDA may use a variety of ways to avoid what they perceive as demands including distraction, procrastination, offering excuses, some of which are more plausible than others, physically removing or incapacitating themselves.
Language and communication difficulties often present differently in children with PDA compared to other autistic children. They may have sufficient language skills to be able to mask, argue and ‘manipulate’ a situation by using social strategies such as distracting or giving many reasons why they aren’t able to comply. Their language and communication skills are also enough to mean that many are aware they are struggling, which increases their already heightened anxiety.
Some are extremely articulate, and many of their parents wonder how an SaLT assessment could possibly be helpful for them. However, we need to gain an accurate picture of strengths, as well as understanding what gives rise to some underlying difficulties, so we can help all those living and working with children with PDA to implement effective strategies and enable these often very bright children to maximise their potential.
Some children have difficulty with focusing attention for things they’re not interested in. Many have auditory processing difficulties which stem from sensory integration issues or may also have phonological processing issues. We meet bright pupils who do not have the necessary dual-channelled attention needed for listening in class. They often have an interest in vocabulary, how words sound or alliteration and may use complex terms which give the impression of precocious language skills. Indeed, an appearance of being superior is common and is part of the illusion of being linguistically more able than they are. Often, the reality is that this has become a shield to ward off unwanted approaches.
Children may appear very sociable on the surface but lack depth in their understanding. They have learned the basic rules, so eye contact, starting conversations, engaging people etc may be very good. However, putting these skills into practice in the real, every day, fast-paced world of constant demand is not easy for them.
The effect of these apparent strengths in language and communication means that it’s easy for supporting adults to miss making the necessary accommodations for them, we may even be irritated by their responses to us or their avoidance and forget to look at what is driving these behaviours. We can wrongly see them as a child who ‘won’t’ rather than as a child who ‘can’t’.
What can we do to support?
Effective strategies for supporting pupils with PDA are characterised by being collaborative, flexible, personalised and indirect. These are strategies which may be beneficial to a range of other children and young people with autism as well as other SEND profiles, but they are especially helpful to those with PDA.
Collaborative: Not only do all the adults around a child with PDA need to collaborate, but this collaboration needs to include the perspective of the young person themselves. This is recognised good SEND practice but is especially important for children with PDA who are likely to be even more resistant if they feel their views are not included in processes and decisions. Collaboration will be particularly significant when determining priorities in learning, behaviour, social relationships and emotional wellbeing.
Flexible: A key feature of PDA is variable moods and sensitivities so if the supporting adults can be flexible in the way they present tasks, in the expectations they have around those tasks, and the pace and timing with which they see through those tasks, they are more likely to be successful.
Personalised: Of course, all children are unique individuals but engagement with children with PDA will be improved if we can tailor their learning so it is meaningful and motivating to them. Curriculum adaptations should also reflect learning needs in areas such as self-awareness, independence, emotional resilience, social relationships and problem solving.
Indirect: Children with PDA are often highly anxious and very sensitive to perceived demands being made of them, even within activities they usually enjoy. So, it may be helpful to offer a child carefully selected choices, to phrase ideas as ‘thinking out loud’ rather than as a direct question, to offer ‘invitations’ to engage with an activity rather than demands to do so. The more creative we can be in presenting requests in an indirect way the greater the chances are of lowering anxiety and therefore of increasing participation.
Children with PDA can be misunderstood if their presentation of autism is not recognised. This can lead to difficulties sustaining school attendance, managing relationships, engaging with learning opportunities and ultimately can impact negatively on the mental health of a highly anxious group of young people. It is important to understand their distinct profile so that the adults who support them are better equipped to develop approaches which have a more personalised and flexible emphasis than those used with other autistic children.
For more information: www.pdasociety.org.uk | www.autismassociates.co.uk
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