School Distress in UK school children: A story dominated by neurodivergence and unmet needs

Background The Covid-19 pandemic has brought into sharp focus a school attendance crisis in many countries, although this likely pre-dates the pandemic. Children and young people (CYP) with school attendance problems (SAPs) often display extreme emotional distress when required to attend school. We term this School Distress (SD). Here we sought to elucidate the characteristics of the CYP struggling to attend school in the UK. Methods Using a case-control, concurrent embedded mixed-method research design, 947 parents of CYP with experience of SD completed a bespoke online questionnaire (February/March 2022), alongside an aged-matched control group (n=149) and a smaller group of parents who electively home-educate (n=25). Results In 94.3% of cases, SAPs were underpinned by significant emotional distress, with often harrowing accounts of this distress provided by parents. Whilst the mean age of the CYP in this sample was 11.6 years (StDev 3.1 years), their SD was evident to parents from a much younger age (7.9 years). Notably, 92.1% of CYP currently experiencing SD were described as neurodivergent (ND) and 83.4% as autistic. The Odds Ratio of autistic CYP experiencing SD was 46.61 (95% CI [24.67, 88.07]). Autistic CYP displayed SD at a significantly earlier age, and it was significantly more enduring. Multi-modal sensory processing difficulties and ADHD (amongst other ND conditions) were also commonly associated with SD; with SD CYP having an average of 3.62 NDs (StDev 2.68). In addition, clinically significant anxiety symptomology (92.5%; ASC-ASD-P) and elevated demand avoidance (EDA-8) were also pervasive. Mental health difficulties in the absence of a ND profile were, however, relatively rare (6.17%). Concerningly, despite the striking levels of emotional distress and disability reported by parents, parents also reported a dearth of meaningful support for their CYP at school. Conclusion Whilst not a story of exclusivity relating solely to autism, SD is a story dominated by complex neurodivergence and a seemingly systemic failure to meet the needs of these CYP in UK schools. Given the disproportionate number of disabled CYP impacted, we ask whether the UK is upholding its’ responsibility to ensure the “right to an education” for all CYP (Human Rights Act 1998). ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was partly funded by the Wellcome Institutional Strategic Support Fund (ISSF) Small Grant Scheme. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics Committee of the Faculty of Medical Sciences, Newcastle University, gave ethical approval for this work I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors following the publication of the full dataset.