Parents' Perspectives on Community-Based Mental Health Services for Children with Autism Spectrum Disorders

Background: Children with autism spectrum disorders may be served in community-based mental health settings for behavioral and psychiatric problems commonly associated with ASDs. In California, these mental health services may be linked to the educational system for students for whom emotional and behavior problems interfere with their academic functioning (through funding established with state legislation). Little is known, however, about families’ experiences accessing mental health services or their perceptions of the impact of care. Understanding families’ experiences is critical to efforts to improve community-based services. 

Objectives: To gain an understanding of families' experiences with mental health services. 

Methods: Qualitative data regarding families’ experiences with mental health services were collected as part of a larger study aimed to understand the clinical characteristics of children with ASDs served in these settings and the training needs of the providers who serve them. Twenty-one semi-structured interviews were conducted with parents of children with an ASD who were currently receiving or had previously received mental health services in San Diego, CA. Parents were asked about the characteristics of their children, their service use histories, barriers to accessing mental health care, and their perceptions of the impact of mental health care. The interviews were transcribed and analyzed for a priori and emergent themes.

Results: The analyses revealed a number of themes related to families’ experiences within the mental health system and the interactions between the mental health and education systems. Most of the children involved in the mental health system were high functioning and diagnostically complex (i.e., had a history of diagnostic uncertainty and multiple diagnoses) and were referred for treatment for externalizing behaviors. Access to mental health services was often facilitated by and funded through the educational system following severe behavioral escalation and linked to the child’s individualized education plan. Although some parents felt that weekly outpatient therapy, specifically, provided important emotional support to their child, many expressed frustration by the minimal impact of these services. The limited number of mental health providers with specialized ASD training was viewed as a significant barrier to accessing effective care. Navigating the mental health and educational service systems and interactions with mental health providers and educators were viewed as significant sources of stress to many families.

Conclusions: These data have important implications for efforts to improve services for children with ASDs. Results suggest that efforts are needed to further examine the interaction and coordination between service systems, paying particular attention to the role of the educational system in facilitating mental health services. Further, these data also suggest that efforts to build capacity in the mental health system to effectively serve this population are clearly needed. Lastly, the results underscore the importance of the added stress that interactions with professionals and navigating services can have on families. The implications of these findings for developing a clinical training model for providers within the mental health system will be discussed.