Co-designing a family and school intervention to address school refusal in families with neurodiversity

EBSA, like all attendance problems, is thought to occur due to the result of child, family, school and societal factors and the dynamic interplay between these factors (Melvin et al., 2018). Recent research in both Australia (Adams, 2021) and the United Kingdom (Totsika et al., 2020) has demonstrated that autistic students are at much greater risk of experiencing EBSA than their non-autistic peers. Unfortunately, few resources exist to support the attendance of neurodivergent students. Further research is needed to understand and better address the systemic factors that predispose vulnerable young people, such as those with autism, to EBSA.

There is a dearth of literature pertaining to evidence-based treatments for EBSA. Of the few studies available, cognitive behavioural therapy (CBT) adapted for EBSA is commonly utilised. CBT has demonstrated benefits for young people with anxiety and mood disorders but neglects many of the systemic influences, such as family, school and society, around the young person. From a systems perspective, two studies advocate a ‘whole of family’ approach to intervention (Richardson, 2016; Roue et al., 2021), though neither examines the question of efficacy. Future research must consider systemic interventions that target the multitude of influences (individual, family and school) that maintain this concern.

Objectives

At present, there are limited early interventions for autistic students experiencing EBSA, and fewer evidence-based interventions aimed at neurodiverse families that provide a neuro-affirming perspective. This project aims to use the principles of co-design to develop a novel intervention to support autistic students experiencing emerging EBSA, and their parents.

Methodology

This project is split into four stages that follow the Double Diamond co-design framework (British Design Council, 2005).

1. The first study consists of interviews and focus groups with parents, young people, school staff and mental health professionals to explore stakeholder perspectives of EBSA in autistic students.
2. The second study (under development) is a Delphi which seeks to gain expert consensus on what parents and autistic students should do when experiencing anxiety around school attendance. This will be translated into a set of guidelines which will be used within the content of the intervention.
3. The third study will consist of co-design workshops held in Australia and England, to establish the format and accessibility of the intervention content.
4. A fourth study may also be conducted consisting of a small trial of the intervention to determine its feasibility/acceptability.