Wednesday, 13 December 2017

How to help a child with PDA at Christmas

Christmas seems to be approaching faster than ever this year, and with this in mind, I thought I'd try and give some advice on how to help a child with Pathological Demand Avoidance (PDA) over this festive period.

Pathological Demand Avoidance is a type of autism. Demand Avoidance is common in most types of autism but children (and adults) with PDA are known to have an extreme level of this. There is more information about the key features of Pathological Demand Avoidance over on the PDA Society website; one of the main features is that the ordinary demands of everyday life are avoided or resisted. The festive season brings so many more demands in general, all building up to a specific point in time, which of course generates its own pressure. 

So let me offer some tips and strategies on how to make it through to the end of December, whilst saving everyone's sanity.
Sasha dressed as Christmas angel
Sasha being a Christmas angel three years ago


Let It Go


This morning, we gave Sasha her main Christmas present. Yep, you read that right, it's only the 13th December, and she's had her main gift. I can hear the sharp intakes of breath from here.

The thing is, there was really no point, nothing to be gained by making her wait until Christmas Day. We won't buy anything else in its place and have explained that to her (of course there are some other smaller gifts). She's understood, and now we just have to hope that it won't lead to disappointment on the big day itself. I honestly don't think it will though.

Sasha has a very low threshold for suspense; patience is not one of her outstanding qualities. I suspect this is true of most children with PDA, most children with autism in fact. I'm not sure it's a skill which we can teach her easily, although as she has got older her ability to wait has improved slightly. Just recently, Sasha has asked to play some board games with us, an activity that plenty of families enjoy and take for granted (when they have the time!). Sasha has never had the patience for turn-taking or the focus to follow through, so I never thought board games would be an option. We're still at the point where the games have to follow all her rules, she is allowed to cheat and she MUST win, but to actually have her sitting down playing a game with us is definitely a step forward. We do celebrate the small wins around here.

We've never given Sasha a present for Christmas this early before but then the build-up has not affected her so intensely before either. 

Sometimes, for children with autism who have specific interests which could be classed as obsessive, the thoughts take over and waiting is just too difficult. 


Look out for the signs 


The signs could be anything from withdrawal to unexpected behaviour, or from extreme upset to full on meltdown. You will know when the point of no return has been reached, and in my book it's always better to have acted before you get there.

In this case the fact that Dan TDM produced a YouTube video all about the Nintendo Super Mario Odyssey game that Sasha was waiting for didn't help us.... that video has been on repeat in our house for several days, just adding to the tension, until we finally got to a point yesterday where Sasha could think of nothing else and her mood was taking a steep downwards dive. 

The game was actually released at the end of October, so to be fair Sasha has already been waiting for it for a while. Watching how much Dan TDM was enjoying the game just reinforced her need to experience it for herself. This obsession was leading to increased frustration with everyone and everything, and there was only one thing that could solve it. Sasha didn't actually ask for the gift early, she just couldn't stop herself from almost screaming and crying and talking about it non-stop.

Ask yourself 'does it matter?'


When Sasha was younger (see photo above) I wrote this post about her Christmas show. In previous years I questioned whether there was any point in her taking part in the school shows when it clearly gave her an extra struggle. It didn't matter to me whether she was in it or not. Of course most parents enjoy seeing their child perform in a big school show, but it perhaps seems a little selfish to request that happens if it's not what your child wants or needs.

Having everyone around the table for the big turkey or nut roast dinner is a main feature of Christmas day for many people. After all the presents are opened, the meal is a part of events which everyone should enjoy. Children are forced to sit at a table and are expected to enjoy it as much as the grown ups. Of course for some lucky parents, the children do enjoy their food and are quite happy to join in with general chatter. Our eldest girl will do this for sure, without us even having to bribe her...

For Sasha though, who has oven chips, sliced turkey and cucumber for tea every single night, and who eats whilst she watches her ipad, the idea of change and sitting at a table with no electronics would just be unbearable. So why try and make her? Again, I can hear the gasps of shock... but Christmas is for me a happy time and should be a chance to relax once all the preparation has been done. Personally, I've never found having stressed and unhappy children to be relaxing. Sasha may pop in to say hello as we eat, and we'll lay a place in the hope she feels like sitting down, but there will be no pressure on her. In some previous years she has joined us, others not. We sit and enjoy our food, she makes it clear that she'd rather be eating chips from that Scottish restaurant. That's just how it goes around here!


Know your limits, and theirs


If you enjoy wrapping presents but they don't like the surprise of a wrapped gift, find someone else to wrap for. If one pile of presents all wrapped up neatly under the tree is too much tension, why not spread them out? That could mean spreading them around the house, or spreading them out daily over the month of December. Whatever works best for you and your child. Nobody is going to come and mark you down for doing it differently. In fact, there are many different ways of doing Christmas, even in the same street.

If Christmas dinner is the most important part of Christmas day for you, and you feel you won't enjoy Christmas without everyone having sat at the table together for a certain length of time, then by all means state that as your wish. There's no guarantee it will be a happy occasion of course, but only you will know if it's worth trying with your family. Be prepared to offer up some bonus for your child instead - more chocolate for pudding, longer time on technology afterwards, whatever you feel might work. 

Sometimes, it's about striking a happy bargain. Most of the time when it comes to PDA, rewards and consequences don't tend to work well, but it can help to be flexible and offer a couple of choices in a non-demanding way. Make sure they feel prepared and like they are in control, and keep anxiety and stress levels low.


I'm well aware that many will read this post and feel that we 'give in' to Sasha too easily. That we should have more control. That she shouldn't be in charge. That she should do what we want her to. My strategies will be rubbished and scoffed at by some.

For our family though, this is what works. This is far different from how I imagined parenting to be, and far different from how we can parent our eldest daughter. We use these strategies to ensure a calm family life, as we believe that's what suits both our children best. I appreciate it may not work for all; everyone has to find their own levels.

Just sometimes though, I wonder if people ever stop to think about the 'why'. Why do we place such importance on certain things happening in life? For some, Christmas is about recreating the happiness experienced in childhood, whereas for others it might be about building new ideas and leaving unhappy memories behind. Why should it happen the way that adults want it to, and not in the way which suits an individual child best? 

Of course many children are happy to be led, and will happily conform to what's expected from them, but this is rarely the case for a child with PDA who is struggling with extreme anxiety on a daily basis. Maybe, just maybe, it's OK to lose the rules and lower expectations and let them find their comfort zone so you can enjoy yours. Here's my Christmas gift to all; the permission to try it this year. Good luck!



Spectrum Sunday

Strategies for PDA is a post I wrote last year for everyday situations; I'd recommend using all of these over the Christmas period too.



To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?



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