Capacity, Chronic illness and Compassionate curiosity: A reflection.

A new academic year begins, a time of resolutions, fresh starts and new beginnings for many adults and young people. It is also a time of anxiety, fear and stress for many. All educators will be working with or alongside neurodivergent young people and colleagues. Recognizing that there will be neurodivergent people in every school community also means recognising that neurodivergent people will experience many challenges and often these are related to chronic illness. There is growing evidence that for many neurodivergent and particularly autistic people, co- occurring conditions are common. For many late diagnosed Autistic and ADHD people, their history of chronic illness and pain is often a key factor in encouraging them to seek out formal assessment in the first place.  Increasingly, research is demonstrating that this is not simply a coincidence or a matter of “perception”. A 2025 systematic review of chronic pain in Autistic people highlighted both the prevalence of chronic pain and the significant difficulties in accurately assessing and managing pain in autistic people. * Research and clinical experience are also beginning to give us a better understanding of the possible connections between neurodivergence, pain and the body. One advocacy charity highlights the overlap between neurodivergence, hypermobility, dysautonomia, chronic pain and fatigue. *

But surely people will let us know if they need help?  

In late summer of this year, a significant arthritis flareup, meant that I struggled with simple tasks like putting on socks and had to use a walking stick to manage stairs and steps. I am grateful for the medication that I was able to access to manage the flare up and I am returning to status quo. However, when asked, I always minimized, I’m fine, a bit stiff’, although the pain was causing sleepless nights and involuntary gasps of pain on stairs and steps. A lifetime of masking, not quite trusting my own body to do the ‘right thing’ and years of not really understanding the concepts of pacing and energy accounting meant that I, like many neurodivergent people, minimise and distract when struggling. Despite being on first name terms with my pharmacist and having considered opinions on the parking and catering at a variety of hospitals and owning drawers full of medications and mobility aids, I firmly believed, until recently, that my health was ‘normal’.  I was a chronic illness patient before I knew about my own neurodivergence, which came in stereotypical fashion, during the assessment process for my children.So perhaps we need to ask a slightly different question, we need to be curious. Not “Will they tell us if they need help?” But “What might make it difficult for them to tell us?”

Pain is not necessarily communicated in the ways we expect. We know that brain/body connection is atypical in neurodivergent people, often pain tolerance is quite high and many neurodivergent people struggle to verbalize their experience of pain. A systematic review of pain experiences in autistic people, found differences in sensory experiences of pain. * Autistic people may experience pain differently and may express it differently, meaning that other people can underestimate what is happening.  Interoception (our ability to notice and interpret signals from inside our bodies), can also differ, although it is much more complicated than simply saying that autistic people have “poor interoception”. Knowing that something is wrong, understanding what that feeling means, finding the words to describe it and deciding that it is “bad enough” to tell somebody are not necessarily straightforward processes.This matters enormously in schools. A young person who is in pain may not necessarily say, “I am experiencing significant chronic pain and I need an adjustment.” They might say they are tired. They might become quieter, more irritable or less able to concentrate. They might appear distracted, overwhelmed or “not themselves”. Sometimes, they will simply say, “I’m fine.”

Capacity is a finite resource:

Capacity, that is the energy to listen, respond, engage and generally “do stuff”, is a finite resource. More importantly, capacity is not fixed. It can vary enormously across a week, a day or even an hour. People living with chronic illness are often encouraged to think about pacing: understanding their available energy, planning how to use it and trying to avoid repeatedly exceeding what their body can manage. The aim isn’t to do less simply for the sake of doing less. It is to use limited energy thoughtfully so that everything doesn’t come crashing down afterwards. Neurodivergent teenagers can benefit from understanding pacing too. Their available capacity may be affected not only by physical illness but by sensory input, social interaction, executive functioning, emotional regulation, transitions, communication and the enormous effort involved in navigating environments that were not necessarily designed with them in mind. Sadly, school system often fails to provide the flexibility needed for them to protect their capacity to learn. People, especially teens, do not always have the capacity to protect their capacity.  They are still developing the knowledge and skills needed to understand their own bodies and brains. They may be at the beginning of a diagnostic journey. They may have no formal diagnosis, no language for what they are experiencing and no obvious route through which to ask for support. The need exists before the label. That matters. A young person should not have to demonstrate a diagnostic category before we become curious about what is making school difficult.

Demand-Capacity Gap:

For many neurodivergent teens and adults, it is useful to think about the demand-capacity gap. In school, the demands placed on a young person and/or neurodivergent staff, can be considerable. There are academic demands, social demands, sensory demands, emotional demands, organizational demands and the constant work of moving from one environment, expectation and relationship to another. Sometimes those demands exceed the person’s available capacity.And it is in that gap between what is being demanded and what is currently possible that we can see anxiety, overwhelm, shutdown, distress and difficulty attending school. Attendance is not simply about being physically capable of walking through the school gates. There is a cost to being present, attentive and engaged. And that cost can be cumulative. A student might manage Monday because they have enough capacity. They might manage Tuesday because they have recovered overnight. By Wednesday, however, the accumulated demands of three days of lessons, noise, social interaction, transitions, homework, family life and trying to appear as though everything is fine may have used up considerably more capacity than anyone can see.

This is why it can be helpful to think of the school day as 24 hours rather than six. What happens outside school also counts. Sleep and travel count. Getting dressed counts. Eating counts. Caring responsibilities count. Homework counts. Navigating friendships counts. The sensory experience of the journey to school counts. The emotional recovery required after a difficult day counts. For a young person with chronic illness, pain or significant fatigue, the energy used to get through the school day may leave very little available for everything else. For a neurodivergent young person, the same may be true of the cognitive and sensory energy required to navigate the school environment. And for someone who experiences both, the calculation becomes even more complicated.

People cannot always advocate for what they need. We sometimes assume that if someone needs an adjustment, they will ask for one. Self-advocacy is a skill. It requires knowledge, confidence, language, safety and capacity to use all of those things. Many teenagers do not yet have a safe space in which to advocate for themselves. Some have spent years being told that they are lazy, difficult, over-sensitive, dramatic or simply not trying hard enough. Others have become exceptionally good at masking their difficulties. The same is true for adults. For neurodivergent adults living with chronic illness, there are often competing demands that cannot simply be put down. Family responsibilities, work obligations, financial pressures and caring responsibilities all have to be considered before rest, recovery, exercise or medical appointments can even enter the conversation. “Have you tried resting?” is not particularly helpful when rest requires a negotiation with the rest of your life. So how can schools become safer and kinder places? Perhaps the answer begins with compassionate curiosity. Instead, we can become curious about the relationship between the person and the environment. What is demanding their capacity? What restores it?

There is a framework used in wellbeing literature called Person/Activity fit and it is such an important concept for developing our inclusive practices in schools and in our school communities. Rather than asking only whether a person can perform an activity, we consider the fit between the person and the activity, their needs, preferences, strengths, environment and the demands being placed upon them.

This is an important shift. Instead of asking, “What’s wrong with this student?”, we can ask, “What is happening between this student and this environment?” Instead of asking, “Why can’t they cope with what everyone else manages?”, we can ask, “What could we change so that they have enough capacity to learn?” And instead of waiting for a young person to reach crisis point before support is offered, we can build flexibility into the environment from the beginning. Sometimes inclusion is not a complicated intervention. It might be a quieter place to work. A predictable routine. Permission to take a short break. An alternative to an overwhelming activity. A little more time to process a question.

An understanding that attendance difficulties can be a communication of unmet need rather than a lack of motivation. Or simply an adult who notices that “I’m fine” doesn’t quite match what they are seeing and gently asks, “Do you want to tell me a bit more about how things are today?” We don’t have to know exactly what is going on in order to be kind. We don’t have to wait for a diagnosis before we make reasonable adjustments. And we don’t need to become experts in every aspect of chronic illness or neurodivergence. We can start by being compassionately curious.

Because sometimes the most inclusive question we can ask is not “Can you do this?” It is: “What would help make this possible today?”

Compassionate curiosity is for our colleagues too.

There is a danger, when we talk about inclusive practice, that we focus entirely on the young people and forget about the adults supporting them. Schools are communities. There are neurodivergent teachers, SNA’s, leaders and parents. There are colleagues living with chronic pain, autoimmune conditions and a range of other health conditions that are not visible. And many of those colleagues will also be masking. They may arrive on time, teach their lessons, answer emails and smile in the corridor while quietly calculating whether they have enough energy left to get through the rest of the day.

They may say, “I’m fine.” They may even believe it. I know when I was teaching, I often said I’m fine’ when I really wasn’t, but in teaching there is a strong sense of the ‘the show must go on’. We need to extend the same compassionate curiosity to our colleagues that we are asking educators to extend to young people. That doesn’t mean prying into people’s health or making assumptions about disability. It means creating cultures in which people can say, “Today isn’t a great day,” without fearing that they will be judged as unreliable, difficult or less committed. Compassionate curiosity should not stop at the classroom door. A compassionate school culture therefore needs to move away from the idea that a “good” member of staff is someone who can endlessly absorb additional demands. Sustainable contribution matters too. Perhaps we need to become more comfortable asking ourselves: What is my capacity today? What is essential? What can wait? What am I doing because it genuinely matters, and what am I doing because I have learned that saying no feels uncomfortable?Compassion is not the same as lowering expectations. It is not an excuse for doing nothing. And it is not about making every environment perfectly comfortable all of the time. Rather, it is about recognising people as whole human beings whose capacity changes, whose needs differ and whose ability to flourish depends partly on the environments we create around them.

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References *

Quadt, L., Savage, G., Bond, R., Davies, K. A., Critchley, H. D., & Eccles, J. A. (2026). Rates of likely neurodivergence and variant connective tissue in patients with chronic pain/chronic fatigue: a case-control study. Journal of Psychiatric Research.

Garriga-Cazorla, H., Roman-Juan, J., Marti, L., Sole, E., Martinez-Leal, R., & Miro, J. (2025). Chronic pain in autism: a systematic review. The Clinical journal of pain, 41(8).

Lyubomirsky, S., & Layous, K. (2013). How do simple positive activities increase well-being? Current directions in psychological science, 22(1), 57-62.

Moore, D. J. (2015). Acute pain experience in individuals with autism spectrum disorders: a review. Autism, 19(4), 387-399.

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