“Mainstream is not right for a huge group of children now”: Parent/carer insights and experiences of neurodivergent pupils’ school distress and attendance difficulties

Many children and young people (CYP) in the UK are experiencing school attendance difficulties. Research suggests that a significant number of CYP experiencing attendance difficulties are neurodivergent, and that these CYP experience very high levels of school distress. While there have been several qualitative studies on the experiences of CYP who struggle with attendance, there is less evidence on the lived experience of parents/carers who have children struggling to attend school. In this study, 44 parents/carers of CYP were interviewed about their experiences of having a neurodivergent child who struggled to attend school. Four themes were identified using thematic analysis: ‘Misalignment between mainstream demands and neurodivergent pupils’ needs’, ‘A fragile and dysfunctional support system’, ‘Distress takes over the lives of families’, and ‘Driving change: What do we want from our children’s education?’. These themes highlight how the misalignment between CYP’s needs and the mainstream school environment, combined with a lack of appropriate support, contributes to significant impacts on families. Parents/carers called for changes in their child’s current school provision, as well as wider changes to make the UK education system more inclusive for neurodivergent pupils. Overall, this study provides timely insights from a substantial number of parents/carers, who are important informants about neurodivergent CYP’s school distress and attendance difficulties.