Authors' objectives: Differences in the way autistic children experience the world can contribute to anxiety and stress. Carol Gray’s Social Stories™ are a highly personalised intervention to support children by providing social information about specific situations in an individual story. This randomised controlled trial aimed to establish whether Social Stories are clinically effective and cost-effective in improving social responsiveness and social and emotional health in children on the autism spectrum in schools. Children on the autism spectrum experience a higher prevalence of mental health problems than typically developing children, including anxiety and low mood. Many children on the autism spectrum struggle to manage social anxiety and feelings of frustration, which can lead to behaviours that challenge them. The International Society for Autism Research (INSAR) has highlighted that more research evaluating early interventions for children on the autism spectrum is needed to ensure practitioners and policy-makers have robust data on intervention effectiveness and implementation to secure optimal outcomes for children. One intervention that attempts to alleviate social difficulties while not being intrusive, time-consuming or requiring extensive involvement from experts is Carol Gray’s Social Stories™. Social Stories are a highly personalised intervention aiming to share accurate, meaningful information about a particular goal or topic that the child needs help with in a positive and reassuring way. Social Stories can be written and delivered by both parents and professionals in a range of settings and represent a less time-consuming and intrusive intervention than alternatives. Previous studies examining the use of Social Stories have yielded mostly positive results but have largely been single-case studies with a lack of evidence from randomised controlled trials (RCTs). Despite the lack of rigorous evidence, numerous schools and families are already accessing Social Stories training and delivering the intervention with children and therefore a fully powered trial is timely. Schools have limited resources and limited access to specialist practitioner interventions, and therefore it is important that interventions such as Social Stories undergo robust evaluation. If they are found to be clinically effective and cost-effective, they can be delivered within schools on a day-to-day basis. The aim was to assess whether Social Stories alongside care as usual is clinically effective and cost-effective in improving child social impairment, reducing anxiety and improving social and emotional health in children on the autism spectrum in primary and special educational needs (SEN) schools when compared with care as usual alone. Primary objective The primary objective of the study was to establish whether Social Stories can improve social responsiveness in children on the autism spectrum in primary schools across Yorkshire and the Humber, when compared to children who have received care as usual only. Social responsiveness can be broadly defined as social awareness, social cognition, social communication, social motivation and mannerisms.

Authors' results and conclusions: At 6 months, the estimated difference in expected teacher-reported Social Responsiveness Scale-2 T-score (the primary end point) was −1.61 (95% confidence interval −4.18 to 0.96, p = 0.220), slightly favouring the intervention group. The estimated differences for the parent-reported secondary outcomes at 6 months were small and generally favoured the control group except the measure of children’s quality-adjusted life-year (+ 0.001, 95% confidence interval −0.032 to 0.035) and parental stress (−1.49, 95% confidence interval −5.43 to 2.46, p = 0.460), which favoured the intervention group. Children in the intervention group met their individual goals more frequently than children who received usual care alone (0.97 confidence interval 0.21 to 1.73, p = 0.012). The intervention is likely to save small costs (−£191 per child, 95% confidence interval −767.7 to 337.7) and maintain a similar quality of life compared to usual care. The probability of Social Stories being a preferred option is 75% if the society is willing to pay £20,000 per quality-adjusted life-year gained. Limitations include considerable disruptions during the coronavirus disease 2019 pandemic. Social Stories are used in schools and represent a low-cost intervention. There is no clinically evident impact on social responsiveness, anxiety and/or depression, parental stress or general health. Benefits were observed for specific behavioural goals as assessed by the teacher, and Social Stories may serve as a useful tool for facilitating dialogue between children and school staff to address specific behavioural challenges. Usage should be at the school’s discretion. The primary analysis included all 249 randomised children. After 6 months, a reduction of 1.61 points was found on the SRS-2 in children on the autism spectrum in the intervention group (95% CI −4.18 to 0.96; p = 0.220). No statistically significant differences were found in overall symptoms of anxiety and/or depression, parental stress or general health. Children in the intervention group met their individual goals more frequently than children who received usual care alone, and this difference was statistically significant (0.97, CI 0.21 to 1.73; p = 0.012). The primary analysis was conducted under the principles of intention to treat. Coronavirus disease 2019 (COVID-19) impacted upon delivery in schools and school routines, and only 62.8% of the sample is known to have received the intervention as per protocol. Sensitivity analyses suggested that there may be a dose effect with improved clinical effects in those receiving the intervention as per protocol compared to those with fewer sessions. The economic evaluation showed that, compared to usual care, Social Stories slightly decreased the service use costs over the 6-month period by £191 (95% CI −337.7 to 767.7) per child and maintained similar QALYs. If society is willing to pay £20,000 for extra QALY gained, then the probability of Social Stories being a dominant and preferred option is 75%. The results of both primary and sensitivity analyses, which considered costs derived from various perspectives, are consistent but limited to the given data within the short study time frame, number of missing data and disruption of COVID-19. The qualitative results suggest parents and educational professionals found the Social Stories training and intervention beneficial. Limitations include considerable disruptions during the COVID-19 pandemic. We found no impact of Social Stories on autistic children’s overall social responsiveness skills. There was some evidence that Social Stories are well supported by parents and teachers, and it may be effective at addressing a wider set of individual goals and could reduce costs. Based on the evidence generated through this trial, we cannot recommend Social Stories for the purposes of improving social skills, anxiety and/or depression, parental stress, general health and quality of life in autistic children. The COVID-19 pandemic had a large impact on schools during this trial, and sensitivity analyses suggested that poor compliance may have reduced the effectiveness of the intervention and that effects were better in those receiving Social Stories as per protocol. We did not find any negative effects, and Social Stories are already frequently used in schools to support autistic children and represent a low-cost and potentially cost-saving intervention. Despite limited evident impact on global social skills, based on the data elicited through the process evaluation, it appears that Social Stories may serve as a useful tool for facilitating dialogue between children and school staff to better understand the needs of autistic children, and usage should be at the school’s discretion.

Authors' methods: A multisite pragmatic cluster randomised controlled trial comparing Social Stories with care as usual. Eighty-seven schools (clusters) across Yorkshire and the Humber. Two hundred and forty-nine children were randomised via a bespoke system hosted at York Trials Unit (129 Social Stories and 120 care as usual). Recruitment was completed in May 2021. Participants were children aged 4–11 years with a diagnosis of autism, alongside teachers, interventionists and caregivers. Recruitment was via schools, NHS trusts, support groups and local publicity. This trial was a multisite pragmatic cluster RCT comparing Social Stories and care as usual with a control group receiving care as usual alone. Care as usual is defined as the existing support routinely provided for a child with autism spectrum condition (ASC) from educational and health services such as specialist autism teacher teams, mental health teams or other associated professionals. The trial included an internal pilot, economic evaluation and a nested process evaluation. Setting The Social Stories intervention was primarily delivered within educational settings by educational professionals. Educational settings included both mainstream primary schools and SEN schools. Parents/caregivers were invited to receive Social Stories training and had the option of also delivering the intervention within the home. Inclusion criteria The child was aged 4–11 years at the time of recruitment. The child attended a participating primary or SEN school within Yorkshire and the Humber. The child has a clinical diagnosis of ASC and daily challenging behaviour. Parents/guardians of the child were able to self-complete the English language outcome measures (with assistance if necessary). Children in the intervention arm of the trial received the Social Stories intervention in addition to their care as usual. The Social Stories intervention was delivered by a trained educational professional (the interventionist) who was employed within each school allocated to the intervention arm. The interventionist varied between the schools [e.g. a teacher, teaching assistant (TA) or Special Educational Needs Coordinator (SENCO)] but was most typically a TA. A core aspect of the intervention was to first agree a goal around which the story would be set. The goal was typically a behavioural challenge the child was struggling with, for example, sharing with their teacher how they were feeling. This goal was agreed during a collaborative ‘goal-setting meeting’ attended by the child’s teacher, a parent/caregiver, a member of the research team and sometimes the child’s TA. Occasionally, the children themselves were able to feed into the goal-setting process if deemed appropriate. The intervention is designed to provide social information to the child, and so the goal sought to reflect this. In this way, many goals sought to reduce the child’s anxiety or frustration by equipping them with information or providing reassurance around appropriate behaviours within a given circumstance. We assessed goal attainment in terms of how frequently a child was able to implement the desired behaviours, for example, if a goal for a particular child was to use calming strategies when they were upset, we asked teachers to rate how often a child was able to do this. Interventionists were trained by members of the research team, who had received training via a cascade model overseen by child psychiatrist, Professor Barry Wright. The training of interventionists included some psychoeducation around the differences in children on the autism spectrum to facilitate understanding around what factors may be driving the observed behaviours associated with the behavioural goal. Training also provided key information on the design and implementation of Social Stories, with materials based on those developed in the preceding feasibility study with the support of Carol Gray and a Social Stories manual produced by Professor Barry Wright and a Clinical Psychologist with expertise in autism. During the training session, interventionists constructed a Social Story. Parents/guardians were also invited to attend these sessions. Following training, all Social Stories were assessed against a fidelity checklist by a member of the research team to ensure they conformed to the 10 established criteria central to Carol Gray’s Social Stories. They were then delivered to children in the intervention arm by the interventionist at least six times over a 4-week period.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hta/16/111/91

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hta/JBTM8017

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/JBTM8017

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk