Jane Green MBE FCCT, Founder and Chair of SEDSConnective
Introduction
As a former assistant headteacher who focused on supporting students with special educational needs and disabilities (SEND), I have long been concerned about attendance and attainment among neurodivergent children. The co-occurrence of physical health challenges linked to hypermobility for this population is not well understood – physical symptoms can be mistaken for growing pains, burnout or anxiety, with many children and young people wrongly assumed to be engaging in emotionally based school avoidance. Furthermore, physical pain and discomfort can cause fatigue, concentration problems and emotional dysregulation (Eccles, 2024), leading to higher rates of school absence and reduced academic attainment. Overlooking physical discomfort experienced by neurodivergent children can also undermine children’s and young people’s agency in communicating their pain, making it difficult for them to acknowledge or even accept their symptoms later in life (Newton, 2013).
After working to raise awareness of these issues through writing articles, developing toolkits and delivering presentations (for example, Green, 2020, 2021, 2022, 2023a, 2023b) I decided to collaborate with colleagues to collect evidence on the connections between co-occurring physical health challenges, hypermobility and neurodivergence for the peer-reviewed topical review paper summarised in this article. The paper examines the connection between physical health challenges associated with hypermobility and neurodivergence, which has historically been underreported in the research literature. The full paper can be found here:
Donaghy B, Moore D and Green J (2023) Co-Occurring Physical Health Challenges in Neurodivergent Children and Young People: A Topical Review and Recommendation. Child Care in Practice 29(1): 3–21.
What is neurodivergence?
Neurodivergence refers to a brain that behaves, learns and processes differently from the neuromajority, encompassing neurodevelopmental conditions and traits with a variety of characteristics and strengths (Eccles, 2024). Leading researchers in this field argue that it is likely that connective tissues are different in identified neurodivergent populations such as those with autism, ADHD, dyspraxia, Tourette’s and probably dyslexia, dyscalculia and dysgraphia (Csecs et al., 2022; Cerdlof et al., 2016; Sharp et al., 2021; Baeza-Velasco et al., 2018; Blajwajs et al, 2023., Ward et al., 2023). Neurodivergence is associated with the increased prevalence of pain and chronic physical health across the whole body. Eccles (2024) emphasises that hypermobility is the mechanism for these issues of chronic pain – neurodivergent individuals are more than twice as likely to have hypermobility than the general population.
What is hypermobility ?
Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are the most common types of hypermobility disorders. For children and young people, generalised Joint Hypermobility (GJH) is also prevalent. The connective tissue structure is different for a person with hypermobility compared to the general population. Such people often used to be called ‘double-jointed’, but hypermobility is multisystemic and affects so much more than the joints – it can affect the autonomic nervous system, stomach, bowel, bladder, heart and immune response. The symptoms can intensify after injury, hormone phases and viral infections, leading to chronic pain and fatigue which can be lifelong. Hypermobility can also be associated with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, dysautonomia including postural orthostatic tachycardia syndrome (POTS), orthostatic intolerance (OI), mast cell activation syndrome (MCAS) and irritable bowel syndrome. The complexity in diagnosing these conditions adds to the fog of understanding their impact on neurodivergent students, both in research and educational practice, making them underdiagnosed even though they are not rare based on our observations and the topical review paper discussed here.
What is the research underpinning the paper?
The article by Donaghy, Moore and Green (2023) is rooted in a narrative review approach, rather than a systematic review. This was a deliberate choice to address the need for a broader exploration of research and practice in an area that is often overlooked. Specifically, the paper discusses the core issues related to neurodivergence in children and young people with hypermobility-related pain, examining the connection between the body and mind. The misattribution and diagnostic overshadowing of hypermobility with the neurodivergent population is endemic so we aimed to explain the issues in a narrative approach. We were looking to discuss the issues that we saw from both an academic and person-facing approach and consider the experiences or potential experiences of neurodivergence in children and young people with hypermobility pain (Cederlof et al.,2016).
Key findings and recommendations
Traditionally, interventions and approaches to support neurodivergent students focus on social, sensory, emotional, mental and environmental areas. The topical review highlights the need for a shift in educational and healthcare practices to better support neurodivergent children and young people with co-occurring physical health challenges. A greater understanding of these challenges and more comprehensive approaches could significantly improve both attendance and attainment outcomes for this population. Recommendations include:
- Increased flexibility and awareness: Schools and healthcare providers should receive training to better recognise and understand the physical health challenges faced by neurodivergent individuals. This could include training on hypermobility and its implications for students and/or awareness training from SEDSConnective, a charity specialising in supporting individuals with hypermobility and neurodivergent conditions.
- Inclusive diagnostics: Dual diagnostic screening should be implemented to identify both neurodivergent conditions and hypermobility. Knowing about the connection between neurodivergence and connective tissue could offer opportunities to improve neurodivergent students' access to support. SEDSConnective recommends screening hypermobile children for signs of neurodivergence, and vice versa, in the belief that such an approach would be able to successfully identify neurodivergent individuals early – even those from traditionally underdiagnosed groups (e.g. girls), or high-masking individuals
- Greater student involvement: Involving the student in discussions about their health and educational needs is crucial, although many may not be aware of the underlying causes of their symptoms
- Further research: More research is necessary to understand the full scope of physical health challenges in neurodivergent populations, particularly among diverse and low-support needs individuals.
