Can’t, Not Won’t: Pathological Demand Avoidance (PDA) and the Challenge of School Attendance

Back to School

As I walked past our local primary school on my dog walk this morning I noticed cars in the car park - teachers back in school beginning to prepare for the new academic year. In some areas of Scotland, the summer holidays come to an end next week and just a few weeks from now, most schools across the UK will be back in session. I spent most of my walk considering how this impending new term will impact different families.

A year ago I wrote a blog post called Back To School: Our Way. I remember wondering at the time what the return to school would look like for my family a year later. The biggest difference is that only one of my kids will be returning to school as my daughter is preparing to start university. (You can read about that here.)

And now it’s approaching the time when we will find out what the new school year will look like for us!

Thriving in School

There are plenty of children who will look forward to and embrace the return to school. There can be lots to look forward to; reuniting with classmates, feeling smart in their new uniforms, choosing new schoolbags and stationery, exchanging tales about their summer. They will rock up at school feeling happy and ready to learn. But this is not the case for every child.

Not Fine in School

Social media communities like Not Fine in School  have helped raise awareness and build support for families of children for whom the school system isn’t working. Many of these children are neurodiverse and finding that school is nothing short of traumatic for them. 

School distress is now recognised as a major contributor to the mental and physical ill health of thousands of children in the UK.

Increasing numbers of families are now opting to home educate due to the distress their children experienced in attending school. While the number of families taking this approach pre-Covid was around 56,000, estimates suggest that by 2023 there were almost 100,000 families educating at home.

Wishing They Could Go To School

Then there’s another group, a category I fear not enough people are aware of - the children who want to go to school but just can’t. It’s not that they won’t go. They can’t go. And if they do manage to attend, it takes an unimaginable toll on them. This is the group I want to focus on in this blog post, partly because of my own family’s experience and also because I am now aware of the growing number of children, locally and nationally, who come into this category. Many, although not all of these children, have PDA.

What is PDA?

PDA stands for Pathological Demand Avoidance, a profile that falls under the umbrella of autism. While every autistic person is different, individuals with PDA tend to share a very specific set of traits, most notably, an extreme anxiety-driven need to avoid everyday demands and expectations, even those they place on themselves.

For children with PDA, even simple, routine tasks - like brushing teeth, getting out of bed, or starting homework - can feel overwhelming, not because they’re being oppositional or lazy, but because the perceived loss of autonomy triggers intense anxiety. Often, the more important something is to them, the more impossible it can become.

What makes PDA particularly difficult to spot and support is that these children often want to do the things they’re avoiding. They may be bright, articulate, imaginative, and even eager to please. But when faced with a demand they can become highly distressed, withdrawn, controlling, or reactive. This is not a behavioural choice.  It’s a nervous system response.

In a school setting, PDA can present as severe school anxiety or refusal, but unlike more straightforward school avoidance, it often coexists with a deep desire to attend and connect. When the anxiety prevents them from meeting the expectations placed on them - by themselves or other people - children are left dealing with bitter disappointment, frustration and often, low self-esteem. This internal conflict can lead to exhaustion, shutdowns, meltdowns, and long recovery periods after school days - on the days they do manage to attend. Because PDA is still not universally recognised in diagnostic criteria or educational systems, many families find themselves fighting to get the right understanding and support in place. Misunderstandings around PDA can lead to punitive measures, strained home lives, and immense pressure on children who are already doing their best to cope with invisible barriers.

I suspect that many families on finding out that their child has PDA will be able to reflect on previous years with a whole new understanding of their child and situations they found challenging.

Parenting PDA

Supporting young people with PDA requires a different approach to parenting. Many traditional parenting "techniques" will not only not work but are likely to cause further stress and anxiety - for both parent and child. I think the most important thing parents can do is to continually put themselves in their child’s shoes and remember that it’s a case of “can’t, not won’t.” Imagine how upset and frustrated you would be to desperately want to do something and just not be able to do it because of the anxiety it causes you.

Parenting children with PDA requires patience and - perhaps most crucially - understanding. Patience is usually easier to have when you truly understand the other person’s perspective. I think when you can understand what your child is going through it’s much easier to support them in the ways that they need rather than placing demand on them through expectation or consequences. 

This is why it’s so important for us to really understand what our children see as a demand. For example, offering praise for something they have done well feels like a positive, supporting thing to do. But for some children, this will be received not as praise or recognition but as an unspoken demand to repeat the action or behaviour - and the fear that they will be unable to do so.

One of the most difficult aspects of this can be the perceived (or actual!) judgement of others. Let’s face it - parents can be prone to judging other parents, particularly when they have differing parenting styles. Over the years, I’ve come to realise that we know so little about what is really going on for individuals and families and I think we need to accept that the majority of parents are just trying to get it right for their own child. Some parenting styles may look different to our own but it’s often just a different way of meeting a child’s unique needs.

Understanding PDA can also make a real difference in how children are supported in educational settings.  For many families, navigating school alongside PDA can feel like a constant uphill struggle.

The Role of Schools: Why Staff Understanding Matters

Too many families find themselves having to do battle with their child’s school to find ways to accommodate needs. We have been fortunate with the professionals in our child’s school. Essentially, they are caring humans who, in my opinion, are in the right job. It’s clear that they have an understanding of PDA and have now worked with us for three years to support our son without placing demands on him. Had they had a less sensitive and understanding approach, I very much doubt that we would still be pursuing school education. I’m all too aware that, sadly, this is not the case for everyone.

Back to School: Their Way

As back-to-school photos begin appearing on timelines and shops fill with uniforms and pencil cases, I know how complicated this season can be for so many families. For some, it’s a time of excitement and fresh starts. For others, it’s a time of anxiety, uncertainty, and invisible battles just to walk through the school gates - or even consider doing so.

And then there are the children who want to go but simply can’t - not because they won’t, but because their nervous system screams NO!

This blog post isn’t just a reflection on our experience. I hope that it can be my small way of raising awareness, of helping others understand what PDA can look like, and of challenging the idea that children “just need to try harder” or that school works for everyone in the same way. And to explain that, while some children are not fine in school and do not want to attend, there are also children who are not fine but do want to be there.

We need educational systems that recognise and respect neurodivergent profiles like PDA - not as behavioural problems to fix, but as different ways of experiencing the world. We need schools that can flex and adapt rather than expecting children to bend until they break.

And we need compassion. From professionals, from policy-makers, from fellow parents and sometimes even from ourselves.

For my family, and for thousands of others, “back to school” is not about perfect attendance or tidy routines - it’s about courage, communication, and finding a way forward that works for this child, on this day.

Recommended Reading

If this post resonated with you, let me recommend the best book I have read on the subject: PDA in the Family by Steph Curtis. I don’t think I have ever related to an author as I did to Steph. In this account of raising her daughter with PDA, Steph openly and honestly shares her family’s experiences, her feelings as a parent and helpful tips and strategies. 

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