What is pathological demand avoidance?

What is pathological demand avoidance?
Some children with autism struggle with PDA: an anxiety-driven condition that can make it extremely difficult to comply with demands. We explain what it is and how to help your child cope at home and at school.
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We all know that at times, getting our kids to do what we want can be a struggle. But while it’s normal for all children to dig their heels in, for some, complying with demands at school and at home can feel almost impossible.
 
For some children, this could be a sign of pathological demand avoidance, or PDA: a subtype of autism that makes it very difficult for children to comply with instructions, rules and requests, and can have a wide-reaching impact on the child’s life.
 ‘PDA is characterised by having an intense need for control,’ says Laura Kerbey, founder of Positive Autism Support and Training (PAST). ‘Children may be labelled as difficult, defiant, oppositional or even manipulative, but far from being naughty, their avoidant behaviour is actually the result of very high anxiety levels.’

Signs of PDA

The presentation of PDA differs from person to person, but there are key characteristics that may indicate that your child has this form of autism. The PDA Society says that a child with PDA may:
  • Resist and avoid the ordinary demands of life, such as getting up, getting dressed, eating a meal or washing. Surprisingly, this can include things that they want to do.
  • Use social strategies to avoid demands, for example distraction, negotiation, making excuses, procrastination.
  • Withdraw into fantasy (for instance they might pretend to be an animal, because animals don’t have to do homework or have a shower).
  • Physically avoid demands, such as by lying down and refusing to move or running away.
  • Appear sociable, but lack understanding of some social skills.
  • Experience intense emotions, including rapid mood swings, impulsiveness and unpredictability. 
‘Many parents become aware of PDA traits when the child is around five or six, when the demands of school become more challenging. But for some parents the demand avoidance is obvious from a very young age,’ says Laura. It’s more or less equally common in boys and girls.
 
It’s often assumed that autistic children struggle with socialising, but a child with PDA may appear very sociable. However, it’s highly likely that they’re disguising their problems by ‘masking:’ putting immense effort into concealing their difficulties, for example by copying other children’s social skills without truly understanding them, or even role playing a person who can cope with demands.
 
‘Many children with PDA have no problems making eye contact, are very good at conversation, seem confident and are described as “angelic” or “delightful” at school,’ Laura explains. ‘This can mean that PDA is difficult to diagnose and often missed; in fact, they can struggle to get an autism diagnosis at all.’

What are demands?

We all face demands from the minute we get up every day to the minute we fall asleep. Some of the demands we place on children are obvious – ‘Go and do your homework’ – but others are more subtle, which means we might not realise we’re even making them.
 
Demands include:
  • Direct demands, instructions and requests, like ‘Get your maths book out please.’
  • Time and timetables, e.g. having to get up at a certain time to get ready for school.
  • Plans that children are expected to comply with.
  • Questions, such as ‘Where have you put your reading book?’
  • Decision-making, which can be overwhelming.
  • Transitions, for example from playtime back to the classroom.
  • Internal demands, such as ‘I’m hungry.’
  • Praise, which sets up the expectation that the action should be repeated or improved upon next time. 

How PDA affects children

It’s important to remember that along with being an autism spectrum disorder, PDA is also an anxiety disorder, which leads to the child needing to control as much as they can.
 
‘The effort of masking their difficulties at school is exhausting, so we often see the “Coke bottle effect” when children get home from school and melt down or shut down as the pressure is suddenly released,’ Laura explains. These meltdowns may look like tantrums or uncontrollable anger, but actually, they’re more like panic attacks.
 
On the other hand, some children find it hard to mask and may be considered naughty, uncooperative or uncontrollable, especially if they display more challenging behaviours, like running out of their classroom or having meltdowns at school. School refusal is also common in children with PDA.
 
Whether or not they’re proficient maskers, children with PDA often suffer from low self-esteem. This may be because they’ve been labelled as badly behaved, feel different from other children, feel angry with themselves for not being able to cope with demands, or feel they’re letting their parents or teachers down.
 
Friendships can also be tricky. Children with PDA may be very social, but may lack the skills they need to socialise fully, meaning they may struggle to form relationships. ‘They could be on the periphery of friendship groups at school, or be very controlling and bossy with their peers,’ says Laura.
 
As a result of the hundreds of demands bombarding them from dawn till dusk, children with PDA live in a state of intense and constant anxiety. This can lead to mental health struggles including depression and self-harm, but according to the PDA Society, 67% of parents are dissatisfied with the mental health support on offer.

Supporting a child with PDA at home

PDA presents many challenges at home, as typical parenting strategies are often unsuccessful.
 
‘The key is to keep demands as minimal as possible,’ Laura says. ‘If your child is struggling with a demand, ask yourself, “Does this really matter? Why am I insisting they do this?”’
 
Sometimes, a demand really does matter – for example, stopping and looking both ways when crossing the road. But at other times, you may decide to let something go, such as not forcing your child to wear a coat if they really don’t want to. ‘It’s about giving them as much autonomy as possible,’ Laura adds.
 
The PDA Society suggests using the word PANDA as an acronym for strategies to manage PDA at home, as follows:

P: pick your battles

  • Minimise rules
  • Enable some choice and control: ‘Do you want to read to me first, or do your spellings?’
  • Explain your reasons: ‘Holding my hand when you cross the road will help keep you safe.’
  • Accept that some things can’t be done (for example, your child may refuse to wear a school jumper if they have sensory issues). 

A: anxiety management

  • Reduce uncertainty: if you need to go shopping on the way home from school, you might tell your child before school, rather than springing it on them.
  • Recognise underlying anxiety and social challenges.
  • Treat meltdowns as panic attacks. 

N: negotiation and collaboration

  • Keep calm.
  • Collaborate and negotiate to solve challenges: ‘I know you hate cleaning your teeth because it’s really boring, so let’s see if you can do it standing on one leg.’
  • Fairness and trust are vital. 

D: disguise and manage demands

  • Word requests indirectly: rather than saying, ‘If you eat your dinner, you can go on the iPad,’ you might say, ‘I wonder if you can finish your dinner in time to play some Minecraft before your bath.’
  • Monitor tolerance for demands and match demands accordingly: on a good day, your child might be willing to get dressed independently, but on another, you may need to help.
  • Doing things together helps, such as practising times tables or tidying their toys. 

A: adaptation

  • Try humour, distraction, novelty and role play: ‘Goodness me, those are cheesy feet! I can hardly breathe! Quick, get in the bath before I pass out!’
  • Be flexible.
  • Have a plan B.
  • Allow plenty of time.
  • Try to balance the amount of give and take. 
Despite your best efforts, children with PDA are still likely to be overwhelmed at times.
 
‘When a child is in crisis, try not to get angry with them or negotiate with them,’ says Laura. ‘In this state, their brain is in survival mode and they need space. Distraction, humour or empathy may help, but be prepared to cut right back on language and let the meltdown run its course.
 
‘Afterwards, they’ll need a recovery period for their emotional level to go back to baseline. In this period, don’t dwell on what’s happened or get them to apologise: if they’ve hurt someone or broken something during their meltdown, they’ll feel terrible without you reinforcing it.’
 
While you’re supporting your child with PDA, keep in mind, too, their siblings. ‘It’s important to educate them about PDA and acknowledge that it seems unfair sometimes,’ Laura adds.

Supporting a child with PDA at school

The PDA Society’s Being Misunderstood report found that 70% of children with PDA are not in school or regularly struggle to attend, and teachers often find that typical behaviour management strategies simply don’t work.
 
‘There are two main things that autistic children need at school: at least one trusted adult, and a safe space,’ says Laura. Talk to your child’s teacher about what these could be: there might be a particular TA that your child gels with, and a corner of the library they could sit in if they’re feeling overwhelmed with demands and need an exit route.
 
The PANDA strategies above are likely to be useful at school as at home, so you may find it helpful to print out the PDA Society’s What is PDA? booklet or another resource for your child’s teacher. For example, the teacher may decide to pick their battles and let it go if they’re refusing to get changed for PE, or if they’re procrastinating about a piece of work, they might give them the choice of whether they want someone to help them or not.
 
Another good strategy is to let your child’s teacher know about any particular interests they have, as they may be able to weave them into your child’s work so it feels more engaging and less confronting: if they’re mad about Lego, for example, the teacher could give them bricks to use as props when they’re counting, adding or dividing.
 
Depending on your child’s level of need, it may be appropriate for their school to assist with producing an Individual Education Plan (IEP) or assessment for an Education, Health and Care Plan (EHCP). However, your child doesn’t need to have a formal diagnosis or care plan to get extra support.
 
‘All schools have a responsibility to make reasonable adjustments based on needs, not diagnosis, so it’s important to build good relationships and help the teacher develop insight and understanding of your child’s difficulties,’ Laura explains.
 
‘These are anxious children, not naughty children, and with the right support, they can do amazing things.’

‘He developed a phobia of school and learning’

Amanda is mum to Thomas, 10, who has autism with PDA.
 
‘From a young age, Thomas found transitions difficult. He would scream when I tried to put him in his pushchair, and at nursery, he would run around at the end of the day, making it difficult to take him home.
 
‘As Thomas started school and the demands on him increased, his anxieties became more apparent. He was often unable to leave the house or take part in activities he’d previously enjoyed. A friend’s daughter was diagnosed with PDA, and we realised Thomas had many of the same characteristics.
 
‘Unfortunately, Thomas’s school had little understanding of PDA, and despite a very supportive headteacher, his anxieties grew so much that he developed a phobia of school and of learning in general. By Year 3, Thomas’s mental health had been so badly impacted that he often told me he wished he wasn’t alive.
 
‘Thomas is now formally “educated other than at school”, with his learning provided by a specialist team. He has built up an excellent rapport with them, and they’ve created a curriculum around his special interests. There are still days when he can’t cope, but the team can work flexibly as his needs change.
 
‘Being “educated other than at school” has helped Thomas to regain his trust of education and adults, and has rebuilt his fragile confidence and feelings of self-worth. His world is still small and his anxiety is still high, but he’s happier, more aware of his emotions, and is slowly becoming more open to learning.’

Read an extended version of Amanda's story.