Understanding PDA: What We've Learned About Pathological Demand Avoidance and How to Help

What we’ve learned about living with Pathological Demand Avoidance (PDA)

When I first read the words Pathological Demand Avoidance, something clicked - we had what many in the PDA community describe as a "lightbulb moment". Suddenly the reactions of our youngest daughter made sense in a way they hadn’t before. The more I read, the more I realised this wasn’t simply “stubbornness” or “defiance”. It was something deeper: a different way of processing the world.

Over the years I’ve written a lot about PDA on this blog, and each time I come back to it I find I’ve learned a little more. Understanding PDA has changed the way we parent, the way we live, and honestly, the way I see life. The autism diagnosis for our younger daughter set us off on this path but discovering the term PDA was what helped us the most. And that's why I'm still passionate about being involved in the conversations around PDA - because I know that hearing about it can help other families who might be struggling.

white room with grey sofa and coffee table. stack of books and a mug on the table.

This post pulls together what we’ve learned so far - from our own experience, from other PDA families, and from new research and lived-experience voices. I hope it helps other parents who are on this same, often confusing, journey.

Understanding PDA as Part of Our Family Life

Before I knew the term PDA, I could see that our daughter's reactions to everyday requests were different from most children’s. Simple everyday things like getting dressed, brushing her teeth, or leaving the house could feel huge. If something felt like a demand - even something she’d normally enjoy like going swimming for example - it could trigger anxiety or a complete shutdown.

Back then it felt like we were walking on eggshells every day, never sure what might tip the balance. Once I learned about PDA, we realised we didn't need to “fix” her behaviour. We just needed to understand what she needed to feel safe and in control, and act on that.

The definition of PDA that still makes the most sense to me is that people with PDA have an extreme avoidance of everyday demands, driven by anxiety and a deep need for autonomy. The PDA profile sits within the autism spectrum, but it brings its own mix of traits, challenges, and strengths.

For a fuller explanation of the traits that would point towards a PDA profile, see Pathological Demand Avoidance (PDA) Characteristics.

Key Characteristics We See Every Day

Every child with PDA is different, but there are some common threads I recognise clearly in our daughter - and in many other families’ stories.

Avoidance of Everyday Demands

It’s not that PDA children won’t do things - often, it’s that they can’t in that moment. Anxiety builds up so fast that even the smallest demand feels like too much. Sometimes Sasha will refuse to do something she actually loves, simply because she was asked to do it.

Sociable but lacking depth in Understanding

Our daughter appeared sociable at a young age and often seemed to enjoy being with others. Being sociable can hide a lack of understanding of social rules such as when to talk, what to say, how to act etc. Also, it may seem as if children with PDA don’t recognise hierarchy; they think that rules apply to the other children but not to themselves. Sasha was happy to stand at the front of class and tell other children what they should be doing, but didn't seem to understand that she should be doing whatever that was too.

Using Social Strategies

PDA children are often socially aware and often use unusual language and ways of avoiding things rather than an outright no for refusal - distraction, humour, negotiation, even pretending not to hear. A phrase our daughter often used when younger was "I can't, my legs don't work" (I've heard of many other PDAers who have also used this). There was nothing wrong with her legs.

Emotional Intensity and Mood Shifts

Life with PDA can feel like an emotional rollercoaster. Our daughter could move from laughing to crying, calm to angry, in seconds. In some of my earliest blog post writing I described how those rapid shifts could be both confusing and exhausting - for her and for us.

Comfortable with role play and pretence

PDAers often have great imaginations and can use these as a way of avoiding demands. This was a big indicator for us because our daughter's imagination has always been amazing. She is constantly creating new characters and stories. Some children pretend to be animals to avoid doing things which humans do (for example ‘cats don’t do homework’).

Masking and Exhaustion

Some PDAers mask - masking hasn't been a big feature for our PDAer, she showed similar avoidance at school and other settings as she did at home, but there have definitely been occasions when other people have thought she 'seemed alright' when she really wasn't. It is so vital to understand every little change in her, to know what makes her tick, and to realise what she is not saying. Because despite coming across as fairly 'aware' and articulate at times, she's often not capable of expressing herself fully, especially when frustrated.

Some PDAers can appear calm and sociable in public while hiding huge amounts of internal anxiety. It’s heartbreaking to see the toll that takes. Some can hold it together at school but then release everything at home, which means schools can sometimes miss what’s really going on underneath - I discuss this more in Autism, Masking and Pathological Demand Avoidance.

What Helps: Creating a PDA-Friendly Life

Over time I realised living with PDA isn’t about “managing behaviour” - it’s about creating a world that fits the child, not forcing the child to fit the world.

1. Lowering Demands Wherever Possible

This was the single biggest shift for us. We learned to pick our battles. If getting dressed feels impossible, maybe staying in comfy clothes is fine that day. If brushing teeth causes panic, we waited until later, found different ways to make it more bearable (I think I could write a whole blog post on that, maybe I will!) or we simply decided not to stress about it (this worked for her because she only drinks water and has great teeth, lukcily!).

Some people might call what we now do a low-demand lifestyle. This wasn't the way we set out to parent from the start, and it's not what we needed to do for our older daughter. But we adapted because we realised it was necessary. There have been times when even leaving the house felt impossible for our daughter, and this still comes and goes in cycles, but by reducing demands and following her lead, we gradually rebuilt trust and confidence.

2. Connection Before Correction

When things start to wobble, connection almost always helps more than correction. Sometimes all she needs is me sitting next to her quietly, a shared laugh, or a gentle “I know this feels tough.” Understanding the difficulties helps to build trust.

Praise can be tricky - even “well done” can sound like pressure - so we try to show appreciation more naturally: “That was fun,” or “I loved spending time with you.”

3. Predictability with Flexibility

PDAers often need to know what’s coming, but rigid schedules can feel like a trap. So we built flexibility into all our days and plans. We tried to travel in ways that were more comfortable for her, at times that suited her best.

For example, if you say, “Would you like to do this before or after lunch?” it can help a PDAer to feel in control, without taking away structure altogether.

4. De-escalation and Calm Spaces

When things become overwhelming, adding more pressure doesn’t work. Stepping back does. Talking as little as possible and allowing time and space to recover was key to getting back on track.

5. Collaboration and Shared Problem-Solving

When our PDAer felt included in decisions there was more chance of her feeling able to try whatever the activity was. We would talk through what needed to happen and what could make it feel easier. It wasn't always smooth, but collaboration builds trust over time.

There are life skills that our PDAers need to learn and it helps to recognise that this may be a longer process than it is for many other children. One comment I see being made by others who don't understand PDA is that these children have no boundaries. There are boundaries in our house for sure; our PDAer knows right from wrong and is more of a rule follower than a rule breaker - when the rules make sense. We don't have rules for the sake of having rules. We work together to figure out what is important and what her anxiety levels can cope with at any given time.

6. Using the right language

Changing the words we used as parents was difficult to start with but we soon realised what a difference it made. Direct demands caused anxiety levels to rocket instantly and we found it was best for them to be removed from language wherever possible. So don't say 'you need, must, have to' and instead try 'maybe we could, would you like, how about if' etc. More of 'I wonder if we might be able to..' or 'I'm not sure how to do this, could you show me?'

For more ideas of how to change language, the Declarative Language Handbook is often recommended. And for suggestions on how to improve daily life, see my posts Strategies for PDA (Pathological Demand Avoidance) and How to help children with Pathological Demand Avoidance (PDA).

Our Own Story: Growing and Learning Together

Over the years I’ve shared our journey on this blog, from the early discovery of PDA through to the ongoing ups and downs.

When we first learned about the PDA profile it felt like a huge relief. I didn't set out with a plan to write about PDA, but a few years after starting my blog (which most likely no more than a handful of people read back in 2010!) I knew that I wanted to share more, to try to help others understand our daughter and others like her. My post Ten Things You Need to Know About PDA is still the most-read post on my blog and a good place to start.

silver haired me holding up book PDA in the Family that has an orange cover

School has been a challenge for the past eight years, with long periods of being at home rather than in a setting. Most of this story has been captured in our book, PDA in the Family. Success with education has often depended on attitudes of those working with her and how safe our daughter felt in the environment. Each stage brought new learning curves, including the most recent one which was an attempt at attending a mainstream college.

One key learning was that understanding comes before progress. When individuals really started listening to our daughter and the way she needed to learn, things improved.

There are still hard days - days when everything feels like too much and I question whether I’m doing enough. But there are also many moments of pure joy: Sasha’s creativity, her sense of humour, and an imagination that filled with ideas. Those moments remind me why acceptance and flexibility matter so much.

What Recent Research and PDA Voices Tell Us

In the early days it was hard to find research that reflected what we were living. That’s changing: more studies and reports now listen directly to PDAers and their families, which makes a huge difference.

The PDA Society collects lived-experience voices and has shared research summaries that echo themes we know well - the need for control, the link with anxiety, sensory differences and how misunderstanding can lead to burnout and isolation. Their most recent studies were titled PDA Lives Worth Living and PDA In Our Words.

There's a recent study by Sam Curtis and Dr. Elizabeth Izett titled "The experience of mothers of autistic children with a pathological demand avoidance profile: an interpretative phenomenological analysis" that I think many parents in the PDA community will relate to. Quotes that show a level of exhaustion and a lack of understanding from others who don't experience this.

Publications that focus on what helps often highlight low-demand parenting approaches, emotional regulation strategies, sensory adaptations and relationships built on trust. Reading those findings feels validating - they reflect what we’ve learned in our own home: with the right understanding and environment, PDAers can thrive.

Mistakes I’ve Made (and What I Do Differently Now)

Parenting a PDA child is a constant learning curve, and I’ve made plenty of mistakes. There's no such thing as a perfect parent!

Initially I would insist on sticking to plans we'd made but it quickly became clear our daughter couldn’t cope in certain situations. Now I aim to be as flexibile as possible. We don't make many plans, but if we do and the plan has to change, that’s okay. If a day goes wrong, we reset and try again tomorrow.

I learned to become a detective and figure out what was causing any reactions. When our daughter resists, it’s rarely about defiance - it’s about fear, exhaustion or overwhelm. Recognising that changed everything.

After a while I could see that staying calm made a huge difference. When I stayed steady and balanced, and sure of my decisions, she felt safer. That doesn’t mean I always managed to stay calm when she was younger - far from it - but it’s a skill I'm glad to have learned.

In the early days I worried too much about what other people thought of how my child acted and how I behaved to attempt to make life better for her. Over the past 18 years I've come to realise that no-one else is living our life, so no-one else is qualified to pass judgement on it. We are raising a kind, considerate, awesome human and I'm very proud of her.

What I Wish I’d Known Earlier

Lower the bar. Not everything needs to be done today. Some days surviving is enough.
Rest matters. Downtime isn’t laziness - it’s recovery.
Connection first. A smile, a cuddle or a shared joke can do more than any behaviour plan.
Your instincts are valid. You know your child better than anyone.
Find your people. Support from other PDA families is invaluable - their understanding can carry you through the hardest days.

And finally: don’t lose sight of who your child is beyond the challenges. Sasha is creative, funny and deeply empathetic. She is unique and PDA doesn’t define all of her.

Looking Forward: Hope, Growth and Community

PDAers deserve as much respect, curiosity and compassion as any other child receives.

We still face challenges, but they’re different now. We recover faster, we understand more, and there’s less fear and more flexibility.

There’s also a growing sense of community when it comes to Pathological Demand Avoidance. When I first started writing about PDA very few people were talking about it. Now there are parent networks, supportive schools and professionals who truly get it. Progress might feel slow, but it’s happening.

Our book came from this journey - from wanting to help other families feel less alone, and to share practical ideas that actually work in real life. It’s full of our experience, advice and reminders that, even on the hardest days, there’s hope.

There are some who say that PDA is not a real diagnosis. But nothing else describes how our daughter was in her early years more precisely than those early descriptions of PDA. Nothing relates as much as to how she still is, as a young adult. She is undoubtedly autistic, but has no diagnosis of ADHD. Being AuDHD would not explain her inability to cope with everyday demands in the way she does. Individuals with ADHD may put off tasks or avoid demands, but this is linked to difficulties with executive functioning, such as task initiation, poor organisational skills, or trouble with focusing. For PDA, avoidance is driven by anxiety and a deep need to protect autonomy.

I've thought long and hard about whether I should continue to write about PDA more generally. I'm not an expert in anyone else's children, only my own. I've shared our experiences in the hope they will help others but also to broaden minds and hopefully build a society that is more understanding of the struggles our daughter faces. As far as I'm concerned, PDA should still be part of everyday discussions around how to support individuals and if I can help get that message out there, I will.

Final Thoughts

If you’re at the start of this path, I want to let you know that it does get easier. You’ll learn what works for your child, and you’ll find your rhythm.

Take things one step at a time. Celebrate the small wins. Build trust before anything else. And remember that flexibility isn’t giving in - it’s giving your child a chance to feel safe enough to grow.

PDA can be hard to live with, but it also brings deep empathy, creativity and unique ways of seeing the world. Our job as parents isn’t to change our children - it’s to support them and change the environment around them so they can thrive as their brilliant, authentic selves.