SEN Parent’s Perspective – Author Sam Ryan – SEN Parent Support Group
Living with PDA – No it is not ‘spoilt
child syndrome’!
I have always believed that independence is the greatest gift you can give your child.
I now realise that independence comes in many forms and, for a child with PDA, can
fluctuate greatly depending on how the nervous system equilibrium is looking at any
point. One minute, they’re cool as a cucumber; the next, they’re a firework with a
very short fuse – and guess who’s holding the match?
As a parent of a child with PDA, I can tell you that this journey has developed a
resilience and patience in me that I did not think I possessed. I have become a
master negotiator, a fierce advocate for my son and a zen like goddess on the
outside even when my own nervous system feels like a volcano about to erupt.
PDA is described as a profile on the autism spectrum, characterised by an extreme
avoidance of everyday demands and an anxiety-driven need to be in control.
However, PDA does not appear in the DSM-5 manual (The Diagnostic and Statistical
Manual of Mental Illnesses) which is the bible for professionals – if it’s not in the
DSM-5, it cannot be ‘diagnosed’. This leaves us in a bit of a sticky situation as
parents as we are then left having to convince everyone that our child has PDA
without being able to get a bit of paper confirming it. Say it confidently and often
enough, and eventually, people just accept it. Fake it till you make it!
Living with a child who has PDA involves navigating a rollercoaster of emotions and
challenges every single day. Finding your tribe – those that will understand and
accept your reality – is essential to your survival!!!
Understanding PDA
PDA is most commonly known as Pathological Demand Avoidance. I hate that term
as I find it to be negative. Another term used which I prefer is Pervasive Drive for
Autonomy.
PDA is often misunderstood and mislabelled as ‘spoilt child syndrome’ because of
the behaviours exhibited by our children. However, these behaviours are not due to
poor parenting or lack of discipline, but stem from an overwhelming need to avoid
demands and expectations, driven by high levels of anxiety.
In my own son, the most apparent presentations of his PDA are:
The ‘Noahs’. This is what we call the NOs that sometimes infiltrate his brain
and he cannot control. When there is a demand that makes him anxious, he
can start to mutter over and over again ‘No, no, no, no, no’. This happens if he
knows he will need to leave the house or as it gets closer to bedtime.
Master of distraction – My son is adept at taking my own ADHD-addled brain
off on tangents away from the very demand that he is trying to avoid. This
does mean even the simplest of tasks can take 10 times longer due to the
merry dance he takes me on. Need him to put his shoes on? Suddenly, we’re
deep in a conversation about which is the rarest ore in Minecraft. It’s an art
form!
Negotiator extraordinaire – ‘Mummy… I will brush my teeth if you play
Minecraft with me’ or ‘If you make me a cup of tea, I will do the dishwasher’.
Every demand has to have an equaliser for him so he feels that sense of
autonomy.
The Reality of Living with PDA
In our household, everyday tasks such as brushing teeth, getting dressed, putting
plates in the dishwasher or going to bed, come with a battle if they are not managed
in the right way. Our children employ various strategies to avoid these demands,
including distraction, excuses, and outright refusal. As parents, we often find that
traditional parenting techniques not only fail but can also worsen the situation,
increasing our child’s anxiety and avoidance behaviours.
If you do not live this reality, it can be hard to comprehend but I often feel like I am
being trained for some gruelling test of endurance, resilience and determination. By
the time my son reaches adulthood, I reckon I’ll be ready for any extreme challenge.
Bear Grylls, watch your back—I’m coming for your job
Low Demand Parenting
One approach that has helped us survive is low demand parenting. This means
strategically reducing the number of direct demands placed on a child so they feel
more in control and less anxious. Sounds simple, right? Ha. Think again.
This approach can make you look, to the untrained eye, like the world’s most
permissive parent. But trust me, when your child’s nervous system is teetering on the
edge of total meltdown, the last thing you do is push harder.
Be prepared for judgment. People will not understand why your child’s teeth are
looking a little, er, ‘antique white’ because you’ve chosen to prioritise mental stability
over dental perfection. They won’t get why your kid spends 12 hours a day on their
device recovering from burnout. But here’s the thing: they don’t live your life.
These people don’t get to have an opinion. Let them tut. You’ve got bigger fish to fry.
These people who judge do not walk in your shoes and do not have a right to judge
you. Ignore them and move on.
The Emotional Energy Required
Parenting a child with PDA demands immense emotional energy. We must
constantly be attuned to our child’s needs and anxieties, always thinking ahead
about what strategy might work today to keep their nervous system calm. This
vigilance is exhausting, and it can feel like there is never a moment to truly relax.
You have to be five steps ahead at all times, pre-empting what might cause a
meltdown and crafting plans that would make MI6 proud. If only there was an
Olympic medal for ‘mental gymnastics’ – I reckon a PDA parent would win that!
The Impact on Families
The impact on our families is significant. We often feel isolated and misunderstood,
and the unpredictability of PDA can be challenging for siblings. It is crucial for us to
seek support and understanding from professionals and other parents who share
similar experiences. Connecting with other SEN parents has been a lifeline, offering
both practical advice and emotional support.
Finding support is vital. Other SEN parents will keep you sane, remind you that
you’re not a failure, and, most importantly, send you memes that make you laugh
when all you want to do is cry into your cold cup of tea.
Strategies for Supporting a Child with PDA
There is no one-size-fits-all approach, but here are some strategies that have
worked for us:
Using indirect language and suggestions instead of direct commands.
Example: “I wonder if your socks would like to be on your feet?” (It sounds
ridiculous, but it works.)
Creating a low-demand environment so your child feels more in control.
Building trust and not using traditional discipline techniques that increase
anxiety
Incorporating their interests into daily activities—Minecraft, anyone?
Working with professionals who actually understand PDA (these are rarer
than unicorns, but they do exist).
Using humour to diffuse a situation – Sometimes, turning a demand into a
joke can sidestep the anxiety response. Example: “Right, bedtime! Everyone
run! The floor is lava, and if you don’t get under the covers in 10 seconds,
we’re doomed!”—cue child leaping into bed while cackling like a cartoon
villain.
Conclusion
Living with PDA is an adventure—challenging, exhausting, but also full of moments
of brilliance and humour. Our kids are fiercely independent in their own way, and it’s
our job to help them find their path, even if that means walking it barefoot,
backwards, and with a five-hour detour about dinosaurs.
If you’re parenting a child with PDA, know this: you’re not alone. Keep going, keep
laughing, and always carry snacks. You’re going to need them.
