Mental health service availability for autistic youth in New York City: An examination of the developmental disability and mental health service systems

Abstract

Psychiatric conditions are common in autism; however, a multitude of barriers exist in accessing community-based mental health care for autistic youth. Perhaps the first and most formidable barrier is identifying a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. These systems typically function independently of one another, contributing to the complexity of accessing services. To identify gaps caused by New York’s multisystem care model for autistic youth, and as part of a larger quality improvement initiative to advance suicide risk management in several New York City emergency departments, we conducted a telephone survey to identify outpatient mental health service availability for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results demonstrated that while a greater proportion of clinics in the mental health system compared with agencies in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), there is remarkably limited service availability overall. Efforts to reduce these care inequities through policy reform and improving workforce capacity are urgently needed. Lay abstract Autistic children and adolescents experience high rates of co-occurring mental health conditions, including depression and suicidality, which are frequently identified by stakeholders as treatment priorities. Unfortunately, accessing community-based mental health care is often difficult for autistic youth and their families. The first obstacle families confront is finding a provider that offers mental health treatment to autistic youth within the many service systems involved in supporting the autism community. The mental health and developmental disability systems are two of the most commonly accessed, and previous work has shown there is often confusion over which of these systems is responsible for providing mental health care to autistic individuals. In this study, we conducted a telephone survey to determine the availability of outpatient mental health services for autistic youth with depressive symptoms or suicidal thoughts or behaviors in New York City across the state’s mental health and developmental disability systems. Results showed that while a greater percentage of clinics in the mental health system compared with in the developmental disability system offered outpatient mental health services to autistic youth (47.1% vs 25.0%), many more did not offer care to autistic youth and there were very few options overall. Therefore, it is important that changes to policy are made to increase the availability of services and that mental health care providers’ knowledge and confidence in working with autistic youth are improved.