Most children kick up a fuss now and then about being told to eat their dinner, do their homework or go to bed. But for kids with Pathological Demand Avoidance (PDA), everyday tasks always feel like enormous, overwhelming expectations which they simply can’t fulfil. As a result, they may do everything they can to sidestep even the simplest request or instruction – much to their parents’ and teachers’ frustration.
Although PDA is usually associated with autism, many health professionals don’t recognise it as a condition in its own right, meaning it can be difficult to get a formal diagnosis. Nevertheless, most experts agree that people with this pattern of avoidant behaviour tend to be less rigid than other autistic individuals as well as more sociable. But as with autism right across the spectrum, PDA is also rooted in a huge amount of anxiety.
Timetables Don’t Work
Steph knows only too well how challenging it can be to bring up a child with this perplexing condition. Her youngest daughter, Sasha, now thirteen years old, has PDA but was initially diagnosed with autism aged two.
“But her behaviour didn’t seem to fit with what we’d been told about autism,” Steph explains. “She didn’t respond to structures and routines, for example, and though she was never aggressive or violent, she resisted when we asked her to do anything, making excuses or pretending to fall asleep.”
When, a couple of years later, the family came across a description of PDA, it seemed to perfectly describe Sasha’s behaviour. However, when they took her to specialist clinics in Nottingham and London, paediatricians were unwilling to provide the PDA ‘label’ though they noted that Sasha was clearly ‘avoidant’.
Steph and her husband decided to give up pushing for a diagnosis and to direct their energies instead towards learning to manage their daughter’s needs and triggers, aided by the charity The PDA Society.
Use Humour and Indirect Praise
“It was stressful at first,” Steph admits, “but we’re used to it now. The way you use language is a key strategy with children with PDA. You have to use minimal instructions. I sometimes get Sasha to do something by making a game of it, saying, ‘I bet you can’t…’ When I want her to put her shoes and socks on, I tap her foot.”
Even praising a child with PDA can inadvertently put pressure on them, she points out. To get round this, she directs compliments via a third party, saying to someone else in the room, for example, ‘I notice Sasha did well and ate all her dinner today’.
Steph documents her experiences of PDA on her blog ‘Steph’s Two Girls’ and now also advises and trains other parents on coping with the condition. Her website offers tips for families and schools on getting the best out of students.
PDA in the Classroom
If managing demand avoidance sounds tricky in the home, imagine, then, the task teachers have in persuading pupils with PDA to participate in lessons.
Specialist tutor Sarah has experience of working with students with all kinds of SEN from Down’s syndrome to dyslexia. “I love the challenge of working with kids with PDA,” she says. “They’re often misunderstood. Their avoidance is simply a way of coping with overwhelming anxiety.”
She combats this by tailoring her sessions to each student, taking the time to find out their likes and dislikes and incorporating their interests – Lego, for example, or supercars – into the learning wherever possible.
“I empower them,” Sarah explains. “The first thing is to make them feel safe and secure when the world is a terrifying place for them. I ask them, ‘How do you learn best – do you like online games or practical projects? How do you want your breaks to work? What can I do to make this subject better for you?’ Sometimes, if a child doesn’t like a lesson, it’s because they don’t like the teacher or it’s been taught in a way they don’t understand.”
She aims for slow and steady progress, she says, often consciously including work that may be slightly too easy for a student in order to boost their confidence. Likewise, getting children to assess their own progress shows them how far they have come in their studies. It’s also important, Sarah points out, to liaise with schools, helping to secure an EHC plan if necessary or making sure a child gets assistance in exams – extra time, for example, or the use of a keyboard.