Shifting the lens
Author: George Fox brings over 25 years of specialist education and SEND leadership experience, alongside a deep, practice-based professional understanding of SMS…. Read more
This article brings together the two previous pieces, helping us to better understand both the challenges faced by people with Smith Magenis Syndrome (SMS) and the realities that families navigate when trying to access support within complex systems. Too often, those systems can feel fragmented or difficult to engage with, particularly for individuals whose needs do not fit neatly into traditional approaches.
Throughout this series, the central message has remained the same. We must start with the person. Understanding who they are, what matters to them and how they experience the world is the foundation for any meaningful planning. For individuals with SMS, this includes recognising the realities of disrupted sleep, differences in communication and the ways in which they engage with others and their environment. These are not small details, they shape the entire day and in many cases, the night as well!
When we truly place the person at the centre, we begin to better understand the importance of regulation, relationships and readiness. These are not abstract ideas, but practical considerations that influence how someone is able to function, engage and learn. I often think about my own experience at home. When my sister, who has severe learning disabilities and significant sleep disruption, decided to run a bath at two o’clock in the morning on Christmas Eve, it would have been easy to respond with frustration (and believe me, I was inside). Instead in the moment, that had to be put aside and I had to think what was driving the behaviour and how I could support her in a way that helped her feel settled and safe.
This is where the shift begins. Moving from behaviour plans to person centred planning is not about removing structure or expectations. It is about changing the lens through which we view behaviour. When we take the time to understand the individual, we create approaches that are more sustainable, more compassionate and ultimately more effective for everyone involved.
Why behaviour is often misunderstood in SMS
When we consider behaviour in the context of SMS, we need to question:
- what we are really seeing?
- what will have the greatest impact on long term success?
Approaches that view behaviour as deliberate, oppositional or something to be corrected will often fall short. This is because they focus on the surface, rather than what is happening underneath.
If we begin to replace the word behaviour with words such as need, response or communication, a different picture starts to emerge. Many of the actions we see are driven by the body’s natural response to stress. When a person experiences dysregulation, whether through disrupted sleep, difficulties with communication or sensory overload, the brain shifts into a state of survival. Fight, flight or freeze responses are not choices in the moment, but automatic reactions designed to keep us safe.
We can all relate to this. I think back to being woken suddenly in the night by my sister running a bath. My first reaction was not calm or rational. It was immediate concern, confusion and a sense that something was wrong. That is the body responding before the thinking brain has time to catch up.
For individuals with SMS, this state can be much more frequent. When sleep is disrupted or communication is difficult, the internal system becomes harder to regulate. What we then see as behaviour is often the visible outcome of that internal struggle, rather than a deliberate attempt to challenge or oppose.
The limitations and risks of behaviour-led systems
Behaviour led systems can have a significantly negative impact on people with SMS, particularly when they do not take account of where the young person is emotionally and cognitively. While schools often focus on cognitive development and attainment, emotional understanding and regulation are just as critical. Without this foundation, it becomes very difficult for a young person to make sense of expectations or respond in a way that is being asked of them.
Approaches based on sanctions, rewards and compliance can therefore create a mismatch. The expectation is that the individual understands what is required and can choose how to respond. However, for someone who is dysregulated, the ability to access rational thought and process those expectations may not be available in that moment. What can appear as refusal or non-compliance is often the result of a system under pressure, not a conscious decision to challenge.
We also need to consider the wider impact of these approaches. Repeated negative experiences can lead to increased anxiety and strong associations with particular environments. Over time, this can affect a young person’s sense of safety and their willingness to engage. Trust becomes critical here. Many individuals with SMS rely heavily on trusted adults to help them navigate situations, and when that trust is weakened, it can be difficult to rebuild.
Transitions are one example where the limitations of behaviour led systems can become particularly visible for individuals with SMS. Moving between places and expectations, whether from home to school, classroom to breaktime or transport to the school day, can place significant emotional and cognitive demands on a young person. These moments are often highly time sensitive and depend on routines running smoothly. For many families, mornings already require careful coordination, particularly when sleep has been disrupted and parents are managing their own fatigue alongside the needs of siblings, work commitments and school timeframes. When a young person with SMS is also struggling with anxiety, inflexibility or emotional regulation, even a small disruption can quickly escalate pressure for everyone involved.
I was recently speaking with a parent of a daughter with SMS who described exactly this situation. The morning routine had been carefully managed but when it was time to leave for school, her daughter refused to get into the taxi. In that moment, the focus can easily become centred on compliance and getting the young person into school on time. However, the reality is far more complex. The taxi cannot wait indefinitely because other pupils also need transporting, yet allowing the young person to remain at home may create anxiety about the pattern repeating. Parents are therefore left balancing immediate practical pressures with concerns about longer term routines and expectations.
What is important here is understanding what may sit beneath the behaviour. Refusal during transitions is often not a simple choice to oppose or challenge adults. It may reflect anxiety, cognitive inflexibility, emotional overload or difficulty processing the transition itself. If responses focus purely on sanctions, consequences or compliance, the underlying need can easily be missed. In these moments, the behaviour is often a form of communication, and understanding that communication is critical if trust, emotional safety and successful engagement are to be maintained.
Reframing behaviour
From problem to communication
Throughout my career, I have come to see the role of supporting a person with SMS, or someone with a learning disability, as something similar to a cross cultural interpreter. Like any skilled role, it requires us to step outside of our own perspective and make sense of the world as it is being experienced by the person in front of us. Without that shift, it becomes very difficult to respond in a way that is meaningful or effective.
When we approach support in this way, behaviour begins to take on a different meaning. Rather than something to be corrected or controlled, it becomes a form of communication. This does not mean that the behaviour is easy to manage or without impact, but it does mean that it is telling us something important.
Underneath every behaviour, there is likely to be an unmet need. This may relate to regulation, communication, environment or relationships. The role of the caregiver is not simply to respond to what is visible, but to interpret what sits beneath it and support the person to navigate it more successfully over time.
The importance of co-regulation becomes particularly evident during periods of crisis or heightened dysregulation. Many families, schools, and support staff will have experienced behaviours that are highly challenging that can place the individual or others at risk. These situations often involve behaviours directed towards others, themselves, or property with varying levels of consequence and emotional impact.
Within schools, these situations are usually viewed through the lens of safety and risk management, both for the young person and for those around them. However, during moments of crisis, the focus of co-regulation needs to remain centred on understanding and supporting the young person rather than simply gaining compliance. As discussed previously with school refusal and difficulties with transitions, teachers and caregivers are often balancing immediate concerns with anxieties about longer term patterns of behaviour developing. This can place enormous pressure on decision making in the moment.
One example that is often discussed is what should happen when a young person becomes distressed in a classroom and refuses to leave despite disrupting the learning of others. In these moments, there are many competing factors to consider, including safety, communication, emotional regulation and the potential impact on the wider group. While it may seem counterintuitive, there are some occasions where it may be more appropriate for the rest of the class to relocate temporarily rather than physically intervening to remove a child who is already in crisis. Although challenging, this approach may help reduce escalation and preserve trust and emotional safety.
For teachers and support staff, this creates two immediate considerations:
- what needs to happen now?
- what support may be required if the situation continues beyond the immediate moment?
The central question becomes how teachers and caregivers can co-regulate alongside the young person in order to help them return to a calmer state where learning and engagement become possible again. Achieving the best outcome often relies on person centred thinking, careful planning and an understanding of what both the individual and the wider learning environment need in that moment.
What person centred planning looks like in practice
Schools need to build systems and processes that place the individual with SMS at the centre, while also ensuring that everyone involved has access to the right information at the right time. This includes not only key staff, but also those on the edges of support. Information must be clear, accessible and useful in practice, rather than overly complex or difficult to navigate.
From my experience, schools can sometimes adopt a belt and braces approach to documentation, often driven by a fear of getting things wrong. While this is understandable, it can lead to systems that are overly detailed, hard to access and ultimately less effective. The focus should be on creating tools that support consistent, informed practice across the day.
The following approaches are not exhaustive, but offer a practical starting point.
One page profiles
A one page profile should provide a clear and accessible summary of the individual, often drawing from more detailed documents such as the EHCP. It should be easy to read, written in plain language and regularly updated. Key sections include what people like and admire about the person, what is important to them and how best to support them. It should reflect real experience and help others quickly understand how to respond effectively.
What helps and what does not help
This provides simple, direct guidance based on experience. It should clearly outline strategies that support the individual, as well as approaches that may increase anxiety or dysregulation. Clarity is essential, as this allows all adults to respond consistently.
Environmental adaptations
The environment plays a significant role in regulation. This may include reducing sensory overload, providing predictable routines and allowing flexibility where needed. Small adjustments can have a significant impact on how a person experiences their day.
Safe exit strategies
Planning for moments of escalation is essential. Safe exit strategies allow the individual to step away from situations in a way that preserves dignity and reduces further distress. These should be agreed in advance and understood by all adults involved.
Bringing it all together
From reaction to understanding
When we consider the central principles of person centred planning, behaviour plans do not disappear. Instead, they are reframed. They become part of a wider approach that places the individual at the centre of every decision, ensuring that support is shaped around their needs, experiences and long term success. This includes planning for more complex situations, such as how a child may be supported if their behaviour begins to escalate.
However, this is where we need to be careful. A belt and braces approach to documentation, while well intentioned, can lead to variation in how information is recorded and interpreted. When multiple documents are written in different ways, or with different levels of clarity, it becomes difficult to maintain consistency in practice. This can result in differing understandings of the same child, and ultimately, differing standards of support.
Person centred planning should aim to reduce this complexity, not add to it. Clear, consistent and well-structured documentation allows everyone involved to work from the same understanding, creating a more stable and supportive experience for the individual.
Regulation, relationships and readiness to learn