Identifying and dealing with PDA

Pathological Demand Avoidance (PDA) is characterised by an extreme avoidance of everyday demands and an anxiety-driven need to be in control. PDA is sometimes known as Extreme Demand Avoidance. The existence of a separate diagnostic term for PDA and how it relates to the autism spectrum is a matter of debate.

Prof Elizabeth Newson first documented PDA as a ‘Pervasive Developmental Disorder’ in the 1980s. Pervasive developmental disorders are now slowly being assimilated under the diagnosis of autism. Children with PDA share many of the social communication, social interaction and sensory difficulties seen within the autism spectrum.

What are the signs of PDA?

The main symptom of PDA involves obsessive resistance of demands. This can include:

refusing
giving excuses
distracting or changing the topic of conversation
negotiating or needing to have the last word
bombarding with repetitive questions or noises
withdrawing into fantasy world
complaining of physical impairment - 'my legs won't work'
panic-driven physical outbursts or meltdowns.

Children with PDA can also suffer from:

Appearing sociable on the surface but without depth of understanding: Children will often appear charming and more socially able than a child with typical autism, but will struggle to understand the subtleties of social interaction on a deeper level. The sociability is often used as a strategy to refuse a request or demand, but as they lack a deeper social understanding they may overpower, overreact or be unable to take responsibility for their actions.
Excessive mood swings: Parents often describe children with PDA as unpredictable or 'Jekyll and Hyde' as they can be charming at one moment and angry or distraught at another. Triggers for rapid mood swings are often in response to a perceived demand or feelings of not being in control.

Children with PDA often:

engage in a level of pretend play not commonly seen in typical autism. However they may dominate play, so causing hostility with friends.
have an ability to mimic and take on the roles of others. This is often used as a means of taking control or avoiding demands. In extreme cases role-play can be confused with reality.

Obsessive behaviour and PDA

Passionate interests and obsessions are not uncommon in individuals on the autism spectrum. However, with PDA the obsession tends to be more social in nature, often about a particular person.

They may also consider themselves at the same level as an adult as they tend not to recognise social hierarchy and their place within it.

Why schools can make things worse

School is an environment full of demands in which PDA children can struggle and become anxious, often failing to reach their potential. It is important that parents and schools work collaboratively to help support them as much as possible.

Children with PDA can appear verbally competent. However, as a result of processing differences they frequently fail to understand everything that is being said to them.

Some children are unable to comply at school and spend a great deal of energy trying to gain control or avoid demands. This can be misinterpreted as the child not wanting to engage rather than a symptom of their spiralling anxiety. They can have panic-driven physical outbursts which can lead to fixed term or permanent exclusions. Others may appear to be compliant at school but become more challenging when they get home.

The pressure of 'putting on an act' takes its toll and they can suffer extreme meltdowns. School avoidance can be a result of the anxiety they suffer.

What schools and parents can do to help

Try to remain calm and non-confrontational. The meltdown can be likened to a panic attack, so reassurance and a calm approach rather than recriminations or punishment is likely to be more effective.
Avoid direct demands like 'you need to’, ‘you've got to’.
Provide choices, such as 'would you like to put your shoes on here or there?'
Communicate in a more collaborative way, 'Would you?’, ‘Could you?'
Directly praise the child to another person within their earshot if they struggle to accept praise directly.
Acknowledge and empathise with the child’s feelings and reflect this back to them, like 'I think you are struggling; just do your best'.
Use humour or distraction.
Look for signs of anxiety and know when to scale back demands.
Be prepared to negotiate.
Limit the number of boundaries and allow the child to feel in control wherever possible.
Identify triggers and plan strategies in advance.
Use written requests or visual prompts to depersonalise the demand, like texts or notes.

What strategies can schools use?

Allocate a key worker with whom the child can build up a trusting relationship.
Provide choices, like 'this work sheet or that one?'
With knowledge of the child, notice when demands need to be reduced but also when expectations can be increased.
Use a collaborative, respectful communication style.
Allow the child a sense of control and be prepared to negotiate (start high and allow the child to feel that he has won).
Visual timetables can help to depersonalise demands.
Allow the child extra time to process what is said to them.
Give the child responsibility for little jobs to help improve self-esteem.
Build the curriculum around special interests.
Create a safe space they can go to when needed.
Be prepared to wipe the slate clean over and over again.

Dealing with PDA – First hand experiences

Many parents of children with a PDA profile initially find the finger pointed at them, for poor parenting, and find themselves enrolled on parenting courses.

Phil Christie, consultant child psychologist, says: 'It’s not the child who gets avoidant at times of stress or exams, we are talking about the every day. Not the child who has a wobble with some of the things you ask of them, but every one of those things – getting up, getting dressed, brushing their teeth. For professionals who think that all the parents need to do is to be firmer, just imagine that in your household every morning.'

Children with PDA differ from others with autism in that they can appear sociable, and to understand the norms of conversation, but Christie says this is only on the surface. 'They learn social niceties because it is disarming. They are well tuned in to what is effective with a particular person.'

They will endlessly procrastinate, and they will be manipulative – understanding intellectually what will be effective with a particular person, although not having empathy for them. 'We wouldn’t consider PDA if the only strategies the child uses to resist demands is kicking, shouting or running away,' says Christie. 'They will use distracting strategies, such as "Is that a new haircut, a new car". There is also an incredible amount of excusing, because they know that adults expect a reason. So they will say "I’m sorry I’m too busy to do that now", or, "my legs don’t work".'

Mood swings are exceptionally pronounced in PDA, with parents reporting these can be at the flick of a switch, sometimes for no obvious reason, at other times in response to a trigger. Some children will resort to physical outbursts or attacks. Karen Saint’s 15 year-old son has PDA alongside Asperger’s and she says: 'We call it the blade of grass moment. We think all is well, then boom, one seemingly little thing out of place, wrong, or unplanned causes a meltdown.'

Parenting a child with PDA

Parenting a child with PDA requires monumental patience, and understanding. Ruth Fidler, consultant at Autism Associates says: 'It’s important to remember what is driving the behaviour – it’s anxiety. They can’t help the fact that they won’t do something, and by understanding that, you can approach it in a calmer way.'

Becky Giles’ 13 year-old daughter Emily has asked in reflective moments ’Why can’t I say yes?’ For Emily, everyday events such as getting up, getting in the car, eating are all anxiety inducing. 'I spend a significant amount of every day negotiating,' says Giles.

'We are having a normal day and all is going well. Then I ask her to leave the park, but there is no way we are leaving because you are asking her to do something. She wants to go home but can’t bring herself to agree to do that,' Giles explains.

When a child has PDA it can mean you end up doing everything for them because pushing too hard for them to do things will result in increasing tension and avoidance. This in turn can lead to a misdiagnosis of attachment problems, and/or poor parenting, says Sally Russell. Her son Isaac was finally diagnosed with PDA at 16, following a chance comment from another parent, after an earlier diagnosis of Asperger’s, and school refusing in his teens. 'In fact, the apparent over-dependence is a necessary result of effective and understanding parenting,' she says.

School attendance and PDA

School can be particularly fraught for children with PDA. 'So much of what we do in education is putting them in a situation where we are asking things of them,' says Fidler. 'These pupils may need not just a differentiated curriculum, but further adaptations to teaching. School needs to manage anxiety and subsequent behaviour, and also to support relationships with their peers, as they often sabotage friendships.'

Saint had to resort to home education when her son was 11, and uses the unschooling method (which facilitates learning by encouraging him to do the things he loves). 'Going to school left him a quivering wreck, urinating and crying constantly, having nightmares and unable to sleep or eat properly. I had many meetings with the teacher and the headmaster, but was made to feel like it was my fault for being too soft with him,' Saint says.

Most of the parents we spoke to struggled to be believed. One reason for this is that children with PDA can learn to mask their condition in different settings. Bev Harriman-Dyer’s daughter Gracie, aged nine, does not display her traits at school or in public. ‘The school blamed my parenting as it didn’t cause significant issues in class, and so they failed to adapt accordingly,' she says. The stress of masking her problems at school resulted in school avoidance and mental health problems for Gracie.

Lesley McIver describes her 13 year-old daughter as using different personas with different people or situations - her school staff do not acknowledge any difficulties. 'At home, she is controlling and anxious, and has a high degree of intolerance of uncertainty. She releases all her stress and is violent, verbally abusive, and non-compliant with me. It is because she trusts me that this behaviour is exhibited towards me.'

‘Recognising that teachers also want the best for every child in the class was important for me’ says Heather Hayes, ‘And allowed me to avoid being defensive. I remember to say thank you for their patience, their use of humour, bending rules and for giving my daughter the chance to battle the PDA gremlins in her own way.'

'It’s easy to assume that the school, SENCo, and teachers don’t fully understand your child, but remember that this is still a diagnosis that isn’t well known and give everyone a chance to get it right,' she adds.

Hayes went as far as to offer every parent of a child in her daughter Hannah’s class a copy of the book ‘Can I tell you about Pathological Demand Avoidance’.

'We started to get invites to parties once parents realised that this was manageable, and the classroom stories of violent outbursts and running away all came from anxiety, not a desire to be bad or destructive - and that making Hannah feel the same as everyone else, helped her behave like everyone else,' she says.

Advice from parents and professionals on managing PDA

There are some rules I stick to, but it’s about giving her enough control, it’s like a game plan. With cleaning teeth I have backed down to one clean a day which is successful.
Use physical prompts rather than directly asking them to do something. ‘If I asked her to put her shoes on it wouldn’t work. If I tap her foot with the shoe next to it she will.’
Use the child’s special interests – the Fat Controller says we should …
Depersonalise the request – it’s not me asking, it's government policy.
Make them believe they are helping you. ‘Oh I don’t know how to do it’, or, ‘Where’s your shoes, I can’t find them.’
Invite them to collaborate – do you want to do A, B or C first? Which job should I do in this task?
Reduce demands: ‘Let’s get half of you dressed, and then I’ll come back later and get the other half of you dressed.’
Never go head-to-head with them over an issue. Nobody wins!
If they avoid baths try using bath bombs, a drop of food colouring, or a nice smell in the bath to get them interested in getting in the water. My son loved me to freeze his Lego men in ice-cubes and then he would free them by throwing them in the water. Bath time was much easier with an incentive like this.
If they ask you to do something, try not to see it as them bossing you about or that you are giving in, they just might need you to do it at that moment because they need to feel in control of their environment. You can work on manners and how we ask for help later when they are more responsive.
If there are things that we want him to try, we let him know that he can try if for five minutes and walk away if it’s no good or too stressful.
If they refuse to eat, try strewing food (leaving various items for breakfast on a table and various items for packed lunches on a worktop) then leaving the room. My daughter could take whatever she felt comfortable with, with no implicit demand to take anything whatsoever and no comment made. She was able to leave her evening meal to warm up at any time during the evening and could eat it anywhere she chose (often in the bath).
Be persistent and collect every piece of documentary evidence, in particular if a child masks. Self-refer, don’t wait for professionals as it could take years.
Try to read their moods around whether you would be able to gain their compliance with a task such as homework, dressing, going outside for fresh air or helping with something – some days they will, and others they will be unable to meet the demand and it is not worth pushing as you will end up with a highly stressful situation which spirals out of control
Read them stories to teach them about social situations indirectly. My son learns many things about feelings etc from listening to stories. He wouldn’t listen if I told him but I know he is learning things that way.
Finding ways for his body to relax, we even bought him a waterbed as turning over at night used to wake him up he was such a light sleeper. With a waterbed, the need to turn over is much less frequent.
If a strategy seems to work then stops working, don’t bin it, just shelve it for a while.

The National Autistic Society, the PDA Society, and the Elizabeth Newson Centre

Simple Strategies for Supporting Children with Pathological Demand Avoidance at School, 2015. Zoe Syson, Emma Gore Langton

Understanding pathological demand avoidance syndrome in children: A guide for parents, teachers and other professionals, Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy

With thanks to Cathy May, specialist coach for autism, ADHD and PDA