Addressing the Needs of Diverse Youth with ASD and Anxiety in Public Schools: Stakeholder Input on Adaptations of Clinic-Based Facing Your Fears

Background: Anxiety disorders are among the most common co-occurring psychiatric conditions for youth with ASD (van Steensel et al. 2011). Cognitive-behavioral treatments (CBT) such as Facing Your Fears (FYF) (Reaven et al., 2011) have demonstrated efficacy in anxiety reduction for youth with ASD in clinic settings (Reaven et al. 2012; Ung et al. 2014). However, substantial disparities in access to psychiatric services exist for youth from diverse and/or low income backgrounds. Schools represent a consistent resource available to underserved students with ASD and their families. To meet the mental health needs of underserved youth, there is a critical need to adapt and implement evidence-based programs in schools. Partnering with and engaging key stakeholders in the initial phase of intervention adaptation is essential to best support adoption and sustainability in school settings.

Objectives: To adapt group CBT (FYF) via iterative processes with multi-level key stakeholders, to create a feasible, effective and sustainable school-based program to manage anxiety in underserved elementary and middle school students with ASD.

Methods: Two rounds of 90-minute parent and professional focus groups were conducted across 3 school districts for a total of 14 groups (6 professional and 8 parent groups). Professional participants were interdisciplinary school team members (e.g., special education teachers, school psychologists, etc.). All parent participants had at least one school age child with ASD. In the first round of focus groups (N=36), a semi-structured guide inquired about participants’ experiences regarding student anxiety in schools, and participants’ perceptions of the potential barriers and facilitators to implementing FYF to maximize contextual fit for school settings and diverse populations. All focus groups were audio-recorded and transcribed verbatim. A multi-disciplinary team inductively coded the transcripts to identify potential implementation adaptations for FYF. A second round of focus groups was convened (N=32) with the same participants to “member check” or confirm and further refine the proposed adaptations (Creswell, 1998). Using the same analysis process, additional input was incorporated into a finalized version of school-based FYF in anticipation of a large implementation trial.

Results: Parents and professionals indicated that anxiety in students with ASD is manifested in numerous ways in schools, including avoidance, inflexibility, outbursts and academic struggles. They noted that school teams are often uncertain about how to handle anxiety effectively, and expressed enthusiasm with the opportunity to implement FYF in public schools. To ensure successful implementation of FYF in schools, participants offered modifications to the clinic-based FYF (a 14 week, 90 minute program delivered by mental health professionals). Modifications were organized into various categories: (1) contextual modifications (13, 45 minute weekly lessons delivered by cross-disciplinary school teams) (2) content modifications (emphasize emotion regulation, anxiety management, and parent involvement); and (3) training and evaluation modifications (12 hour interactive workshop, plus 30 minute bi-monthly phone consultation for school teams) (Wiltsey-Stirman et al. 2013).

Conclusions: Multi-level stakeholder input obtained via 14 focus groups, led to a revised, contextually appropriate school-based version of FYF for underserved youth with ASD. Next steps in the implementation of FYF for schools will be discussed.