How to help children with Pathological Demand Avoidance (PDA)

Time flies, as the saying goes, and I can hardly believe it's been nearly six years since I wrote a post on this blog titled 'Strategies for PDA'. That post was written with the intention of supporting parents and carers to find ways to help children with Pathological Demand Avoidance, using my seven years of experience of parenting our own PDAer at that time. It is in the list of Top Ten PDA posts on my blog, but for a long time now I have cringed at the word 'strategies' in the title. 'How to help' covers the same topic and expands on some of those ideas used first time around. 

Language is important. 'Choose words carefully' is in fact one of the tips I wrote in my 'strategies' post and there have been many times over the years when that phrase has jumped back into play in terms of my blogging. I may not always get the words right, but I do try to construct my posts with thought and consideration. I didn't realise at the time of writing my original post that the words 'strategies' would have negative connotations for some but now I know, I will try to find alternatives.

Strategies perhaps gives the impression that others are trying to manage or manipulate PDAers. Manipulating them into doing what the parent/carer or educator wants rather than doing what is best for them. I don't believe this is always the case or that everyone who has searched the internet for PDA strategies is intending to 'manipulate' in this way but I still think it best to rephrase. I suspect that is why the PDA Society chose to embrace the word 'approaches' in their articles about this matter. I'm plumping for 'how to help' this time around - and I think that by helping our children, we in turn help ourselves and our wider family, so that's a positive outcome!

Whatever we call them, I think the ways to help that are outlined in my original post are still very relevant and worth a read. As a quick summary, I'll list the headlines here: 

• be flexible
• build relationships
• plan ahead
• offer choices
• choose words carefully
• use humour
• remain calm
• reduce demands
• pick your battles
• tread carefully with routine

These ways to help were originally aimed at parents and carers in the home but they should also be adopted by educators and staff in school settings, by the wider family, friends, neighbours, in fact anyone who is lucky enough to come across a PDA person! With this post, I'm trying to expand a little on some of the ways of helping and to explain why.

Learn more about PDA; then become a detective

A good starting point in terms of how to help is to learn more about Pathological Demand Avoidance as a whole, in order to understand better. My post listing some of the best books on PDA could be one place to begin. The next step: I think every one of us needs to become a detective with regards to our own PDA child (or the one you are working with), to discover what the issues are, and what is actually causing the unwanted behaviour. At the same time, we should also question whether 'the behaviour' is actually as bad as we think it is. Clearly violence and hurting others is unacceptable, but if the behaviour you think needs stopping is too much screen time, for example, then maybe it's time to rethink why?

No strict, unnecessary boundaries

In our house we found one way to help was to not impose strict, unnecessary boundaries. In my post 'Autism, Gaming and Screen Time' I wrote about the screen time issue, a common clash point in many families. We don't limit screen time, which I know will make some people gasp in horror. Our daughter uses screen time to both regulate herself and to learn about the world. Instead of assuming it was bad for her, I took the view that it could actually enhance her life. I'm not suggesting it would work for every family to allow unlimited access but for some, easing off on those restrictions could create a big drop in the amount of extra pressure. Far from being a lazy attitude, this was a considered decision and one which has enabled our daughter to teach herself skills in digital art and creating animation videos far beyond anything I could have taught her. (See an example below but please don't leave a comment there unless you are under 25 and have a genuine interest in what she's talking about!)

Avoid rewards and consequences

Another way we try to help is by avoiding the typical parenting strategies of rewards and consequences. More specifically, rewards which involve an ongoing, longer term commitment and consequences which are actually punishments. Why? Because they create unnecessary pressure and rarely achieve the expected/desired result. Immediate rewards and natural consequences can work though, sometimes. I expand on this in my post 'Rewards and Consequences with PDA'.

Change Your Lenses

Dr Ross Greene is a clinical psychologist who has been working with children and families for over 30 years. He believes in working collaboratively and proactively with children to find out what the problems are and how to solve them. His website, www.livesinthebalance.org is an amazing resource packed full of free, helpful advice for parents and families, educators and schools. He explains: 

Kids with concerning behaviors aren’t lacking motivation, they’re lacking skills, especially those related to flexibility, adaptability, emotion regulation, frustration tolerance, and problem solving. They aren’t attention-seeking, manipulative, coercive, or unmotivated. They don’t need more time-outs, detentions, suspensions, expulsions, paddling, restraints, seclusions, or police referrals. Those interventions just push them out and away. They do need adults who know how to collaborate with them on solving the problems that are causing their concerning behaviors.

The first step of his advice is to 'change our lenses'. By that he means we should question our beliefs; instead of labelling children naughty or oppositional, for example, and assuming they are being awkward for the sake of it, we should figure out why they display certain behaviours. And then we should work with the child to find a solution that works for everyone.

Dr Greene gave me much food for thought in the early days when I first heard about him and his website. He led me to question 'why?' more often. Why do we expect children to sit at a table and eat the same meal as we eat? Why do we force them to make polite conversation with family they rarely see? Why do we say they have to go to school? Why do we want them to have early bedtimes? Why should they have less screentime?

A lot of the time, the answer is because society expects it. As parents and carers we start off family life expecting to bring our children up in a certain way. That could be similar to how we ourselves were raised as children, or in a completely different way, by those who felt their own childhoods could have been improved. But we generally do have certain rules and boundaries in mind. 

Reduce demands

All of those 'why' questions above cover the kind of parenting I thought I would be doing - typical parenting, with typical, traditional rules. We quickly learned that for our daughter with PDA, imposing those kinds of demands led to extreme upset. Not because she was spoilt and didn't want to follow them, but because they increased her anxiety levels. So we learnt to think carefully about what is possible, what is necessary and what might be achievable, and we have reduced the number of everyday demands we place on our daughter. Teeth brushing is one such demand; as much as I'd have liked it to be a daily event, it is currently too much of a demand for our girl. So we do it as and when we can, when her anxiety and stress levels are low. I'm not suggesting everyone does this (as I hear dentists across the land take a sharp intake of breath), but for our girl who doesn't eat sweets and only drinks water, and has never had a filling, not brushing her teeth every day is something we can live with. Every family needs to find their own balance of what does and doesn't work for their children. I'm just here to remind you to ask 'why' a little more often. Why are you placing those demands on your children, and are there some you can ease up on?

It really is so difficult to explain PDA to those who don't live with it. I'm not sure I'm doing a great job here because I can somehow still imagine the confusion, the eye-rolling and the use of the phrase 'picking and choosing'. So I'm hoping this might help: the following account, written by Rach B, a parent of a child with PDA, recently posted in a Facebook group. I asked if I could share the words here as a great example of doing things differently to what's expected or reacting in a different way to our first instincts. 

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Today when I woke my 12 year old PDAer for school I was greeted with “f#*k off I’m tired!” 

Before understanding PDA, and before I changed how I view behaviour, my response would have been three things: 

1. “Don’t speak to me like that!”

2. “We’re all tired but it doesn’t mean we get to stay home all day, now get up or you’ll be late!”

3. “Don’t worry about your hair, school isn’t a beauty contest”

This would have caused her to meltdown and not make it to school at all. Her anxiety would be high, she would be disappointed in herself for not being able to manage it, and it would make the next day even harder as well as damaging our relationship. I would have spent the day frustrated and stressed. 

But that didn’t happen today because a) I understood that there was something else going on, something deeper and b) by changing how I deal with ‘challenging’ behaviour my relationship with my daughter is stronger and she trusts me more. 

So this morning I didn’t get mad because she used bad language. I validated her feelings. I told her I understood she was tired and explained the first day back after the holidays (the day before) is always more tiring so it was natural for her to feel tired today. I told her there was no rush and I could help her to get ready. I made sure she was aware that I respected her need to wash her hair; after all I wouldn’t go out with greasy hair, so why should I make her do it? 

She shouted again that she wasn’t going but this time she followed it up with “I’m tired, my hair is greasy and I need breakfast but there isn’t time!”

Now I knew that being tired wasn’t the only problem. She didn’t really want to stay home but actually she was overwhelmed with all the tasks she needed to do in order to get ready. So we broke it down and I reminded her there was no rush, that it was ok to turn up to school a little late. She managed her bath by herself and washed her hair but then she was done. So I stepped in, I got her clothes ready, I dried and brushed her hair, packed her bag for school and then she got dressed and did her teeth. 

It’s easy as a parent to become frustrated when your child ‘won’t’ do things they usually do fine. In these moments it’s important to realise they are not willingly not doing these things but that actually in the moment they can’t. Their ability to complete tasks is not static. It will fluctuate based on internal and external factors. 

Once ready we popped to the shop for a drink and breakfast. An incentive helps her on those tricky mornings, and then we went to school. She was only 20 minutes late (I had emailed school to let them know) and she went in happy and calm. 

18 months ago I wouldn’t have been able to write this as I would have been in the middle of trying to deal with her meltdown, assuming she was being oppositional and trying to force her into school. 

It makes such a difference when you change how you view the behaviour and also turn detective. This morning’s ‘refusal’ actually started yesterday, you see. She was exhausted after her first day back and fell asleep early evening. This upskittled her usual routine and she didn’t get her bath and hair washed, then also found it difficult getting to sleep early enough. Hence the tired and needing to wash hair this morning. Tonight I’ll be more available during her evening to help her stay on track. I’m usually fairly distant unless called upon as this is how she prefers things and generally she knows what she needs to do and does it. Tonight though I’ll help her recognise what she needs to do. 

I hope this helps someone who feels like life is a constant battle. Things can get better, they just take time and consistency.

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I think this is a great example of how it helps to 'change our lenses' and to use a different approach to what we might typically have expected to do. Because to be honest, if the approaches we currently use aren't working, maybe it is time to try something new?!

To read more about our experiences and what has helped over the last 14 years, why not try our recently published book, PDA in the Family? Our PDAer's Dad wrote one of the chapters in it. 

Out now in paperback, kindle and audiobook versions - I was pleased to be able to record the audio for most of this book, Mr C recorded the audio for his own chapter!