Primary Caregiver’s Experiences of School Accessibility for Neurodivergent Children

In the UK, many neurodivergent individuals are unable to access school. Literature has highlighted this is often due to their needs being unmet within schools, and compounded by a lack of knowledge and understanding of neurodivergence in society as well as professionals and systems surrounding them. It is considered that many systems and structures were created for neurotypical individuals, therefore causing detrimental effects for neurodivergent individuals accessing them. Though research has started to explore children’s voices, there is limited published research exploring the impacts on parents who are key stakeholders in this experience, often caught between their child and school systems with legal parental responsibilities ensuring they access school if enrolled. Therefore, this research aimed to explore parents’ experiences and the impacts of “school non-attendance” in the context of having neurodivergent children. Semi-structed interviews were conducted with 12 parents whose neurodivergent children had experienced occasions of not being able to access and engage with school. Data was analysed using constructivist grounded theory methodology. A co-constructed theoretical model was developed with findings highlighting that children and their parents experiencing school non-attendance are often disempowered by the services surrounding them, including governmental, school and mental health systems. Parents experienced attacks, blame and were often dismissed by systems involved with their child. These experiences often led parents fighting for their child’s legal access to provisions. Parents were seen to be “left holding everything” alone from how the systems responding, causing them to live in “chaos and uncertainty”. All of these experiences significantly impacted parents’ wellbeing and health, with many “losing” their previous life and identity. These findings have significant implications for mental health services, schools, policymakers and other external stakeholders that are involved in supporting children and their families in the context of school non-attendance.