Every parent can relate tales of battles with their child – to do their homework, get off the computer, put on their shoes, eat their food.
But for some parents these battles are day-long, and occur over every single request they make. Their children have a sub-type of autism known as Pathological Demand Avoidance (PDA). Although the condition was first recognised in the 1980s, it is still not widely known about or always accepted by professionals. Many parents of children diagnosed with the condition initially find the finger pointed at them, when they are marched out of surgeries with leaflets on parenting courses.
PDA is characterised by an extreme avoidance of everyday demands and an anxiety-driven need to be in control. 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.'
Signs of PDA
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, where a child with ASD may not have developed enough socially to know that is required. So they will say "I’m sorry I’m too busy to do that now", or, "my legs don’t work".'
Children with PDA will engage in pretend play (typically absent in autism), but will dominate play. The activity must be on the child’s terms - they will tell others which character to move and how, inevitably leading to difficulties with friendships.
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 result 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. If you ask her to get up she says "I’m glued to the bed", or "I can’t move today". Eating is always a big problem, even if you give her something you know she really likes, and she is hungry.' Giles has learned that she needs to treat these challenging moments as panic attacks, 'because that is what they are'.
'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 issues when a chid has 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 refusal 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.'
This diagnosis still isn’t well known among professionals, yet alone other parents, which makes it harder for families living with PDA. 'Not every teacher has the same understanding or belief in PDA as a diagnosis, and it’s a demanding situation for even the best teachers and specialists to deal with. Recognising that teachers also want the best for every child in the class was important for me, 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,' says Heather Hayes.
'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.
Tips 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 water bed, 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.
Phil Christie, Ruth Fidler and Becky Giles were speaking at a National Autistic Society conference on PDA. Some names have been changed.