For her third and final blog for My Family, Our Needs, Caro Greenwood explores supporting children with pathological demand avoidance (PDA), how PDA kids see the world.
My starting point for this blog is that I am a Matilda expert, not a PDA or autistic specialist. If you haven’t read my previous blogs, Matilda is my daughter, who has a diagnosis of PDA.
PDA is an anxiety-based condition. The world for a child with PDA is an extraordinarily frightening one for the most part. It’s like facing your fear every time you wake up.
Like every autistic human, there is a spectrum. Matilda is on the high-functioning end of the spectrum, so we manage well considering, though there are incredibly difficult days thrown in.
What does a child with PDA see as a demand?
People often ask what a child with a diagnosis of PDA sees as a demand. The answer is: Everything.
For example: If you start your day with ‘Good morning, how are you today?’ That simple greeting creates a double demand.
Firstly, you’ve said ‘Good morning’, which requires a response. You’ve then continued to directly ask them about their wellbeing. For neurological reasons, beyond my (or anyone’s so it seems) expertise, people with PDA cannot manage such ‘regular life requirements’.
From the moment they wake in the morning, to the minute the light goes out at night, they worry; they over-think; they attempt to micro-manage every part of their daily life.
Suffice to say, it is not a pleasant way to while away the hours.
If your mind functioned in this way you would explode, and these children do just that, in the form of meltdowns or panic attacks.
Life avoidance skills
To prevent a direct demand from taking place, children diagnosed with PDA become experts in life avoidance skills. These skills are their way of maintaining control of any given situation. And it is this control that they see as paramount to life functionality.
Here’s another example:
Demand: ‘Put your shoes on we are getting in the car.’
PDA response: ‘I can’t, my legs have stopped working.’
Those with the most severe form of PDA may respond with a violent physical reaction. Those at the higher-functioning end of the spectrum, like Matilda, would simply try to talk their way out of it. Some of the excuses Matilda has come up with in this past are quite something!
Approaches for supporting a child with PDA
A more successful way of achieving the above request would be to consider this approach.
Question: ‘What side of the car would you like to sit?’
You’ve automatically assumed that they are going to get in the car, you’ve not asked them that. That request is now a given. Instead, you’ve offered them the choice of car seat. By doing so, you’re giving them the feeling of control and it is this that we are aiming for.
The irony of giving them this control is that they are ‘kidnapped’ by their confused neurons. These neurons send the incorrect message that, without complete control over everything they do, even the most mundane of tasks, would lead to Armageddon.
Finding a school for a child with PDA
It is no wonder then, that finding a school placement for children with PDA is an almost impossible task. If anxiety overtakes them within the constraints of their own home, where we should all feel our most relaxed, take a moment to imagine the stress levels that come with the demands of being taught academics; by a non-related human in a building that is not their home.
Add into that mix many other humans, noise and every possible life scenario that is entirely out of their control. With all that, it’s a miracle that any kids diagnosed with PDA go to school at all and a testament to my daughter’s strength and tenacity that she has gone in every day, 8.30am to 4pm, almost without fail, for the last two years.
I think there is a very real requirement to educate schools, teachers and other kids. To teach them all that PDA is here to stay.
Because with all this unpredictability, stress and complexity, comes a brilliant, smart, funny and miraculous human being waiting to make their extraordinary mark on the world.
Caroline, also known as Caro, blogs over at Spikey Mama – take a look. If you haven’t seen Caro’s other column, check out her parent view of PDA and her piece on Supporting siblings of children with Pathological Demand Avoidance.
Want to know more about PDA? Read our Spotlight on PDA and take a look at our feature on The PDA Society, who won a BAPS Award last year for Best Practical Support for Parents. Voting’s open for the second round of 2018’s BAPS, head over and cast your vote!