The Knowledge

Supporting neurodivergent pupils with symptomatic hypermobility

New research points to support schools can offer for neurodivergent pupils who may be masking a pain-related condition, writes Jane Green

New research points to support schools can offer for neurodivergent pupils who may be masking a pain-related condition, writes Jane Green

10 Jul 2023, 5:00

The idea that something physical is in particular affecting neurodivergent children and young people seems strange. Yet the evidence is growing. We know that neurodivergent people are more than twice as likely than the general population to be joint hypermobile, with serious consequences.

Models, approaches and interventions with neurodivergent young people traditionally tend to be emotional, sensory and mental health-focused. Yet their outcomes are staying the same or worsening, particularly with regards to attendance. 

Diagnosis issues and/or symptom disbelief

Neurodivergent young people are at greater risk of symptomatic hypermobility (SH) issues and pain-related conditions. Sadly, many health care professionals lack awareness, and this leads to diagnostic overshadowing (the assumption that a patient’s complaint is due to their other diagnoses rather than fully investigating the symptoms). This can result in misdiagnosis or underdiagnosis, and not being believed can lead to further trauma.

Symptoms of SH include joint pain, gastrointestinal and stomach pain, reflux, bowel and bladder issues, and extreme tiredness. Often these young people’s symptoms, including migraines and ‘anxiety’, are attributed to being neurodivergent, overlooking co-occurring physical health challenges.

At best, this results in support and interventions with no effect on their pain. At worst, it can exacerbate prior psychiatric conditions (depression/anxiety) or cause trauma. Indeed, anxiety itself can be directly and physically linked to symptomatic hypermobility (SH) due to laxity in connective tissues.

Educational impact

Perhaps unsurprisingly, Bethany Donaghy, David Moore and I found in our topical review that neurodivergent young people’s experience of pain is likely to affect their ability to engage in their education. Not only can the pain result in missed days at school, but fatigue and ‘brain fog’ can lead to poorer concentration when they can attend.  

Particularly in secondary school, their pain is often attributed to growing pains. This undermines a young person’s agency and self-belief, and can have lasting effects that follows them through adulthood. Pupils learn to mask their pain, which increases the likelihood that co-occurring psychiatric conditions will arise. Instead of pain, they may express sadness. As pain turns to fatigue, they may display anger. Treating the sadness doesn’t help, and sanctions for anger make things worse.

And because their needs aren’t recognised, their absences tend not to be authorised. This alienates the family too, who spend their time between outpatient appointments and school attendance meetings.

Meanwhile, the documented symptoms relating to emotional-based school avoidance (EBSA),  particularly for autistic young people, are stomach ache, poor digestion, racing heart, tiredness, headaches and anxiety.

Communication issues, including differences in interoception, an inner sense, verbal and non-verbal communication – as well as emotional and behavioural displays as ‘masking’ – mean these pupils are often misunderstood. As a result, too many do not receive the help and support they need for their physical health problems, affecting their attendance and ultimately their attainment in mainstream schools, as well as their social lives.

Recommendations

Neurodivergent young people with hypermobility can excel in certain areas of learning or sport. But with SH, pacing is key . While a student may be running in the playground or in PE, they may very well need lift pass or even a wheelchair on the same day.

To uncover their talents and support them to thrive, our paper offers a range of recommendations. These include being flexible with recording attendance (particularly with regards to requesting medical evidence for absence), making use of blended learning capabilities for continuity of learning, and flexibility of timetabling around any return to school.

We also make recommendations for pain management, learning environments, staff training, and diagnostic and treatment pathways. Underpinning all of them is the need toinclude the voices of children and young people in applying them in your setting.

And finally, health care has yet to catch up, let alone education. Therefore, any opportunity to advocate for dual screening for hypermobility along with neurodivergence can only lead to greater awareness and understanding, and ultimately to better support.

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