PDA

 

When talking to a friend the other day and trying to explain about PDA, they said, “well don’t most children try and avoid things they don’t want to do?”

To a certain degree yes, demand avoidance is something which everyone can show. From the toddler who doesn’t want to hear “no more cake” to a teenager being asked to tidy their room but not wanting to do it. Avoidance can indeed be shown in many ways.

I'm sure we have all mastered a distracting technique at one time or another, made an excuse or even outright refused to do something. I know I have!

However, for parents and teachers, it is absolutely vital to understand just how PDA differs from the more typical autism spectrum conditions, because the strategies that work for children with autism, can actually make things worse for the child with PDA.

One Way

Before knowledge of PDA, we believed there was only one way of parenting.

I avidly watched programmes like "Supernanny" and read all the usual parenting books, all of which tell you that you – the adult – are in charge and must set (impose?) the rules and determine the boundaries for your child growing up. That’s how I was brought up and I’m sure most of you were too.

I remember trying out the “naughty step” when J was much younger, and how frustrated we would get that she would never sit on it, let alone realising and understanding her own frustration that she was being “told” to sit on it for a period of time. What was it now, one minute per age….or something like that? 

I remember the time I would take to lovingly (and extremely creatively I might add!) draw up reward charts, but they failed to work, miserably. School also did their bit with reward and sticker charts, all of which went down like a lead balloon and only created more anxiety for J whilst she was at school.

Had we not had the extreme problems we did, and therefore did not go about pursuing a diagnosis, I often wonder if things would have (a) either deteriorated more as time went on or (b) whether someone would have picked up on it at some point during her school life.

Under The Radar

So, how can PDA sometimes just fly under the radar? For us it goes like this....

J is sociable and manages eye contact. She has great conversational skills and her vocabulary is out of this world. She never ceases to amaze us with her choice of words at times.

On the surface she appears as any other child really. However, look beneath the exterior and you will find she often lacks understanding, struggles to regulate her emotions and has the need to control situations and people. She displays obsessive behaviour, often focused on people, which can, and does, make friendships pretty tough at times. However although socialable, she struggles to understand where she fits in in social hierarchy, ie that adults have more authority than children. She has always questioned this, from a young age, and still does at times.

She has sensory difficulties, high anxiety and avoids everyday demands, at times to a high degree. She experiences rapid mood swings and impulsivity (this also due to her ADHD).

However, she is very comfortable in role play, to the extent that some time ago we were unsure if she could differentiate between real and make believe. In fact, even to this day there are some moments when she is so convinced of something, I do still think she believes it.

Like the other day she was playing with one of her dolls, and said to the doll “we will have to buy you some new clothes soon, you are growing so much”.

I said, jokingly, “you know she’s not real, right” and J said “of course”. Now I know she was playing a game, but still, she becomes so involved and creative in her games that I do firmly believe that the "make believe" often becomes real for her. I wonder if this becomes a coping mechanism at times and acts as a sort of barrier to demands from the outside world?

Anxiety

PDA is driven by the child's uncontrolled high levels of anxiety, which can be likened to a panic attack of sorts. Simple everyday activities, which your child may actually enjoy doing, can become impossible to do, because either the demand is phrased wrong, said at the wrong time or even is one of too many demands already placed on your child at that particular time on that particular day.

When your child with PDA starts to panic, it is important to (try) and remain calm. After all, how can you help regulate your child when you yourself are unregulated? Take a slow, deep breath...

The mood and behaviour of a child with PDA can change rapidly! As soon as you spot the first signs of stress levels rising, you need to scale back on the demands, immediately, before its too late.

Now that J is slightly older, and more "aware" of her diagnoses, she is mostly able to identify her own stress levels and evaluate what she needs to do to (a) try and communicate this to us and (b) use the tools available to her to self regulate. She is actually getting really good at this, to the point that if we as parents haven't recognised a possible sign, she has actually said to us "can't you see I am getting heightened here!" 

Being able to recognise the signs herself is a massive help to us, and I am sure, to her new school too. As I have said before, every day we are learning something new about PDA!

Pebbles!

We liken anxiety in our house to “pebbles”. So, we start the day with one pebble, which is fine as he is a friendly one and helps to fight off the others.

So, J wakes up, maybe on rushing downstairs she knocks something on the floor by mistake, a pebble will be added into her jar. We ask her to do something, that she is unable to do at that present time, for whatever reason, cue another 2-3 pebbles added into the jar. She logs onto Xbox, but her friend isn’t online when she promised she would be, another 3-4 pebbles go in. Can you see how, within moments, the pebbles (a.k.a. her anxiety) have built up and the day has literally only just begun. Crazy but true!

This analogy is a little like the “coke bottle” effect, and the child being “shaken up” all day at school, only to explode once in the safety net they call home.

How To Help

So how can we as parents help? Firstly, its worth thinking about how many demands we place on our child on an average day. Really think about it, from the smallest thing up. It’s surprising isn’t it?

“Time to wake up, get dressed quickly, here eat this, quick get in the car we are running late” and many more, probably all said before 8am on a typical school day. These demands will then continue throughout school no doubt, and then on returning home again. These are all classed as “direct demands”.

Then we come to the “indirect demands”. Not always so easy to be aware of perhaps. When at school, it could be the bell ringing, transitions to another classroom or activity, praise, expectations, suggestions, or just fear of the unknown.

All of these demands can seriously raise anxiety levels of a child with PDA, to the point where there is overload and a meltdown (or shutdown) will inevitably follow.

So how does the PDAer show they are avoiding the demand? Usually this is pretty obvious. There will be the art of making excuses, using distraction (often to a great degree), constant interruptions, bombarding the person with questions or just “noise” or saying they are unable to walk as their legs hurt/don't work. Yes, really! These are just a few.

If these fail to work on the teacher/parent in question, the child could then revert to shouting, swearing, fleeing the scene (flight) or, in our case, J will mostly resort to aggression (fight).

Sometimes, just sometimes, your child may appear over compliant. Watch out for this one, as a possible meltdown could occur much, much later in the day. This has happened numerous times for us, where you almost get lulled into a false sense of security. In fact, one of my favourite sayings is..."it never pays to become complacent".

Whatever behaviours you witness with your child, try not to take it too personally, however I know this is easier said than done. I am still guilty of this at times! Remember your child is reacting to their own anxiety. What you as a parent need to do is to be fully equipped with the knowledge and tools of how to best help them through this difficult time.

The Key, The Secret

The key I believe is staying flexible, being creative, thinking outside the box (in fact throw the box out completely!), reducing all demands as much as possible and trying to depersonalise your request. Try and use indirect praise, identify predictable triggers and plan ahead. Remember to give choices to help the day run smoothly (but not too many as that can cause further anxiety!).

Choose your priorities and use humour, if you can, as this can often deflect the situation totally. Perhaps make a silly joke, pull a funny face or walk a silly walk. Once I actually pretended to faint, then when I didn't get up for a minute or two, J knelt down next to me and we had a play fight and lots of tickles...worked a treat. But that was a good few years ago now and probably wouldn't work now. In fact, if I did try it, she would probably just step over me and say "I'm going to play on the Xbox now!" :-)

Make Time

For us as a family, we really try and allow plenty of time for a request/demand to be carried out, as time in itself can be perceived as a demand. This is a big one in our house, not only for this reason, but also because of J’s slow processing speed. Giving enough time is paramount, and although it sometimes feels like you are possibly waiting too long for a response, it is just something you have to get used to!