Neurodivergent mum and parent-carer Emma McDonnell stepped away from 20 years in marketing to support her autistic children – one with a PDA profile – and felt herself slowly disappearing in the process. Here she shares what she’s learnt about raising a child with PDA, a profile of autism where the nervous system sees everyday demands as threats.
When I was asked to write about parenting a child with PDA, I wasn’t quite sure where to begin – there’s just so much. It’s complicated. It’s misunderstood. And it means going against almost every piece of conventional parenting advice you’ve ever heard. You can’t tell your child what to do and expect them to do it – as they’ll likely do the opposite. You can’t tell them ‘no’ to anything, as this will likely trigger insurmountable dysregulation. Just because you’re the parent (or teacher or any other person in an authoritative role) that doesn’t mean a PDAer will recognise that hierarchy. They see themselves as equals. You have to earn their trust first. And until you do, good luck.
PDA (Pathological Demand Avoidance) is a profile of autism. It’s best described as a nervous system disability and basically means that a person’s nervous system responds to everyday demands as if they’re threats. PDA is driven by extremely high anxiety, so being in control brings safety. Saying things like, “get dressed,” “come to the table,” “time to go out” – even if it’s something they want to do – will be perceived as a demand and trigger a panic response.
Parenting a child with PDA means throwing out everything you thought you knew about parenting. I had a very ordered life before kids – career, nice house, everything neat and in control. Then this wonderful, intense, bundle of joy arrived and turned my world upside down.
From the moment he could walk, he ran in the opposite direction. Never followed instructions. Never did what he was told. Some of his earliest words were “no not” – which was quite funny at the time, little did we know.
He was beautiful. Loving. So full of life. But also, defiant. Big feelings that would last for hours. I had no benchmark, I just knew that nothing I tried worked the way it seemed to for other parents. He masked at school – copying, fawning, doing everything to blend in while quietly overwhelmed. And the fallout at home was massive. Sometimes we wouldn’t even make it to the car before he’d explode. Screaming, crying, attacking me. It was like all the energy he used to survive the school day came crashing out.
We had safety concerns at home – a lock on the cutlery drawer, stair gates between rooms where his younger brother would play. He’d run head-first into my stomach, screech, climb all over me. It was relentless. Later, we realised it was sensory. His nervous system was completely overwhelmed and he was seeking proprioceptive input – deep pressure, crashing, climbing, just to try to regulate himself. Occupational therapy helped us understand that. Once we were able to put on our ‘sensory goggles’ as our brilliant OT describes them, things made a lot more sense.
What changed things for me was reading The Explosive Child by Dr Ross Greene. That book taught me that some children have lagging skills, especially around flexibility and frustration tolerance, and that their behaviour is communication. It helped me realise that my son wasn’t choosing to be difficult. He simply wasn’t able to meet the expectations I was placing on him. When we started dropping those expectations, everything started to make more sense.
PDA kids need autonomy. That’s the biggest thing. They need to feel like they’re in control – even of things they enjoy. My son will avoid something he’s excited about because the anticipation flips into anxiety and feels like a demand. That’s how sensitive his nervous system is.
They don’t just avoid demands – PDAer’s are incredibly demanding. I remember one time when he was younger, we were having dinner and my son suddenly decided that he wanted an ice lolly. He was furious because he wanted the lolly now. And I had this moment of thinking – do I really need to die on this hill? Is pudding before dinner really worth the fight? So, I gave him the ice lolly. He ate it. Then he ate his dinner. And we avoided a meltdown. It might seem upside down, but it worked.
From the outside, it might look like we’re pandering. Like we’ve got no boundaries. Giving him a free pass with no consequences. But that’s not true at all. Parenting a PDAer makes you hyper-vigilant, constantly planning and tuning into their needs – it’s like walking on eggshells. But when you’ve seen your child’s anxiety reach a point whereby their mental health completely unravels – and yet they’re barely out of infants – then you start prioritising their mental health and trusting your instincts, despite conventional wisdom or regardless of what the ‘professionals’ are telling you.
We have boundaries – especially around safety – but we pick our battles. Screen time, for example, isn’t restricted in our house. It’s a regulation tool. What we do have is a rule that everything goes on charge at night. There is a natural consequence – no charge means no device available the next day.
School’s been a huge challenge. The noise, the lights, the touch, the social stuff – it’s all too much. Even now, getting dressed can be a huge demand. He might sit next to his clothes for ages, headphones on, unable to move. Sometimes he’ll need me to help him dress, put on his socks or shoes. Not because he doesn’t know how – but because in that moment, he just can’t. His nervous system is too overloaded.
You learn to look at everything differently. Use indirect language. Avoid saying “no” unless there’s immediate danger. Give genuine choices. And most of all, connect. That’s the key. Connection is everything. If your child feels safe with you, they’re less likely to flip into panic. That means truly listening to what they’re into, spending time with them, following their lead – not always trying to steer them towards what you want.
But if you’re new to this journey, here are a few things I wish I’d known earlier:
- Don’t try to “make” them do anything. If your question starts with “How can I get my child to…”, you’re probably coming at it from the wrong angle.
- Declarative language is a tool, not a trick. It’s not about dressing up demands in fancy words. PDA kids will see straight through that. If it’s still a demand, they’ll know. So, use it gently – as a way to share information or invite collaboration, not to manipulate.
- Pick your battles. Ask yourself, “Does this really matter?” If not, let it go.
- Understand their sensory needs. For us, proprioceptive input (like pushing, pulling, heavy work) has been key.
- Model regulation. You won’t always get it right, but showing them how you recover matters more than being perfect.
And perhaps the most important piece of all: acceptance.
At some point, I had to stop fighting it. I had to stop trying to force him – or our life – to look like everyone else’s. Because it doesn’t. And it won’t. Accepting that doesn’t mean giving up it means leaning into what is. It’s radical acceptance. Finding peace within the life you actually live, not the one you imagined.
That shift helped me start to enjoy my child again. To see his strengths. To stop comparing. To stop blaming myself.
And that brings me to the final – possibly most vital – piece of this. If you’re parenting a PDA child, you need to take care of your own nervous system too. You have to. Their regulation depends on yours. If you’re constantly stressed, burnt out, stretched too thin, it’s going to be harder for them to feel safe.
So please – rest, even when things aren’t done. Learn your own triggers. Say no. Let things slide. You don’t need to do it all.
Because your child doesn’t need a perfect parent.
They need a regulated one.