Kids Who Are Missed: Parent and Provider Perspectives on the Challenges Identifying Anxiety Difficulties in Youth with ASD within School Setting

Background: Children with autism spectrum disorder (ASD) tend to experience high rates of co-occurring anxiety disorders that impact their functioning across home and school settings. Identifying co-occurring anxiety symptoms within school settings is critical, and particularly for underserved and diverse youth who may not receive services elsewhere. Currently, little is known about parent and school personnel views regarding challenges tied to identifying anxiety in diverse youth within school settings.

Objectives: This study aimed to understand key stakeholders’ (i.e., parents, school personnel) views regarding: 1) children with ASD whose anxiety symptoms tend to be missed; 2) why they perceive that these children are missed; and 3) potential strategies to better identify anxiety in diverse youth with ASD within school settings.

Methods: The present study presents a subset of data from the first phase of a large-scale, community-engaged implementation trial aimed at adapting a group CBT program for youth with ASD and co-occurring anxiety (i.e., Facing Your Fears-FYF; Reaven et al., 2018). A total of 14 focus groups were convened with parents (n=8) and school personnel (n=6) across three underserved school districts. Parents had at least one child with ASD and co-occurring anxiety and school personnel included a range of backgrounds (e.g., special education teachers, speech and language pathologists, school psychologists), but all had experienced working with youth with ASD. The focus group guide included semi-structured questions around identification of children with ASD who show anxiety related difficulties. Focus groups were audio-recorded and transcribed verbatim. Using an inductive, team-based approach, the transcripts were coded and analyzed by a multi-disciplinary team using standard qualitative methodology.

Results: Stakeholders reported that children with ASD have anxiety symptoms that are missed when they are: (1) from diverse backgrounds; (2) within a general education setting, and (3) not attending school due to avoidance. Stakeholders also indicated that children are missed because anxiety related difficulties are misinterpreted by school personnel as behavioral problems, and this misinterpretation might happen more with students of color, as school personnel may attribute anxiety related difficulties to problems in the students’ home environment (e.g., living in poor neighborhoods). Additional factors affecting under-identification of anxiety symptoms include: (1) parents’ lack of awareness or denial of their child’s anxiety symptoms; (2) reluctance to label their child due to mental health stigma, and (3) limited knowledge on how to best advocate for their child. Finally, stakeholders noted that better training in identifying anxiety is needed for school personnel, as well as building families’ understanding of mental health needs through family partnerships.

Conclusions: Findings from the present study suggest that a portion of children with ASD who experience anxiety are not identified. The findings highlight the challenges identifying anxiety in diverse youth with ASD, including biases associated with mental health and behavior. Strategies to better identify children with ASD and anxiety related difficulties were also identified. Future research is needed to explore ways to support school staff in identifying anxiety symptoms in children from diverse backgrounds and to support families in anxiety knowledge and mental health stigma.