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Managing neurodivergence and chronic illness?  We've got you!

Managing neurodivergence and chronic illness? We've got you!

Mar 18

Twice-daily airway clearance is a clinical non-negotiable for children with cystic fibrosis, bronchiectasis, or primary ciliary dyskinesia. For those who are also neurodivergent (between 15–20% of children and young people in the UK), that non-negotiable lands on a nervous system that may already be at capacity and "just do your physio" becomes one of the most loaded sentences in a family's day.

For those of us working with or raising these children, it's worth sitting with that for a moment. It reframes everything about why approaches focused on incentive and instruction often don't work.

When a child avoids, refuses, or shuts down around physio, we don’t see it as defiance. For many neurodivergent children, a demand, however small, can trigger a genuine threat response in the nervous system. Fight. Flight. Freeze. Shutdown. Avoidance in this context isn't a behaviour to be managed, it's information about the state the child's nervous system is in. And no reward chart will incentivise a child who is already in survival mode.

For autistic children for example, the demand itself can be the obstacle, regardless of how the demand is framed. Recognising this isn't giving up, it's the first step toward finding what actually works.

What we've learned is that the question isn't "how do we get them to do it?" It's "what does this child need in order to be able to participate?"

That shifts the goal from compliance to capacity. And capacity is built from safety.

  • Safety that they know the routine of what's about to happen.
  • Safety that their big feelings will be met with co-regulation, not correction.
  • Safety in knowing that things don't have to be perfect.

 

From that foundation, these approaches can make a genuine difference:

Visual timers over verbal reassurance

An end point a child can literally see removes the need to trust an adult's "nearly done" and that removal of uncertainty might be what makes a session possible.

Predictability as the foundation

For routine-dependent children, a consistent visual schedule reduces the threat of the unknown before the session has even begun. Knowing what comes next is stabilising in a way that incentives aren't.

Child-led sensory support

Let the child identify what helps them feel more regulated. It could be anything from a comfort item they choose, a playlist they've built to a physical position that feels safer. Sensory tools work best when they're led by the child, because what regulates one nervous system can disregulate another.

Genuine choice over instruction

"Where shall we do physio today?" is a small question with a significant impact for a child who spends much of their day having things done to them. Autonomy reduces the experience of demand and increases a child's capacity to engage.

Co-regulation before the session starts

Many neurodivergent children need an adult to actively regulate alongside them. Not just hold space, but genuinely show them the way and join them in a calmer state before asking anything of them. We think of this as connection before direction.

Process-focused language throughout

"You kept going even when it felt hard." This builds interoceptive awareness and self-advocacy which are skills that reach far beyond respiratory care. They build the foundation for self belief.

For clinicians and allied health professionals: when families report that nothing is working, it is rarely a failure of participation. It is often diagnostic information about the nervous system state and what kind of co-regulation or environmental adjustment is needed. Helping families identify the right framework, one that centres capacity and collaboration rather than instruction and reward, is as much a part of the care as the physio itself.

And for those using Bubble FLO® as part of your child's daily routine,  this is exactly why we want to talk about this. Our device works when your child can engage with it, everything we’ve listed above is about helping them get there.

We'd welcome your perspectives. What approaches have made a difference for the families you support or the children you're raising?

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