Background: Anxiety is very common for youth with autism and can significantly limit functioning and full participation across settings. In school, anxiety may negatively impact students’ attendance, school performance, peer relationships, and extracurricular participation. Unfortunately, youth with autism have experienced much difficulty accessing mental health care in community settings, and this difficulty is even worse for youth from historically underserved racial and ethnic backgrounds. Cognitive behavioral therapies (CBT) are evidence-based practices that are effective for anxious children with and without autism but have not yet been consistently available in schools. Schools may be the best location to equitably manage the mental health symptoms of youth with autism. In fact, youth from low-income households and/or other underserved communities are most likely to access services only in school settings.
Two school-based curriculums may hold great promise in managing anxious symptoms for youth with autism: Facing Your Fears-School Based (FYF-SB) and Zones of Regulation (ZOR). Both are rooted in CBT principles but manage anxiety in different ways. FYF-SB is based on CBT strategies tailored for reduction of anxiety symptoms and incorporates psychoeducation and graded exposure (facing fears a little at a time) to target anxiety. ZOR targets emotion dysregulation, which often underlies anxiety symptoms, by focusing on four different emotional states called zones. Students are taught strategies for managing emotions and how to stay in a certain zone. It is thought that as emotion regulation improves, so will anxiety. The purpose of the study is to compare these two interventions and determine which one might do a better job of handling anxiety in students with autism.
Stakeholder engagement: Stakeholders (caregivers, school provider and administrators, adults with autism) have informed many aspects of the current study and comprise our Stakeholder Advisory Board (SAB). One of the SAB members is now a patient partner and a co-investigator on the research team. Stakeholder input helped to inform the development of FYF-SB as well as identify priority outcomes to be considered in research studies. For the current study, the SAB will meet regularly to inform all aspects of the project. The project team will also convene a high school SAB (HS-SAB) who will share their lived experience with autism and anxiety and provide input on the study.
Objectives: (1) Compare the effectiveness of FYF-SB and ZOR for 200 school-aged students with autism (ages 8-14), (2) compare the acceptability and feasibility of each intervention according to students, caregivers, and school providers, and (3) examine variables that can help determine the students who may respond best to the interventions.
Method: Two hundred students with autism who have anxiety and are attending elementary and middle schools in Colorado and North Carolina will be randomly assigned to receive either FYF-SB or ZOR. Students from underserved communities will be recruited. The interventions will be delivered by interdisciplinary school providers in school settings.
Outcomes: To determine which program might do a better job for students with autism, the study will examine the presence of anxiety symptoms and emotion dysregulation at three points: pre-, post- and six months after students receive the intervention. Students, caregivers, and teachers will complete the measures. Additionally, the research team will examine outcomes identified as priorities by stakeholders such as school attendance, tardiness, academic participation, calls home, and number of disciplinary actions. Exit interviews will be conducted following the interventions to understand what the participants liked and did not like about the programs and whether they found them to be helpful.
Importance of results: The research team’s work with stakeholders has clearly indicated that school providers and families recognize the significant anxiety that many students with autism experience, yet do not know which intervention program would be most beneficial. The results of this study will provide practical information about the strengths and weaknesses of each program so that school leaders and other stakeholders can make informed decisions about program selection to support students with autism.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.