Caregivers’ Experiences Accessing Services for Children With Autism

Abstract

Objective: Many children with autism experience unmet needs, emphasizing the importance of research on service access. Methods: We surveyed English-speaking caregivers of children diagnosed with autism in 2018 at a tertiary Midwestern children’s hospital. The survey assessed satisfaction with accessing services and included open-ended questions. Results: A total of 189 caregivers participated. Most accessed speech (86.2%), occupational (90.0%), and educational services (93.7%). Fewer received behavior therapy (35.6%), applied behavior analysis (23.8%), or group therapy (15.1%). While overall satisfaction was high, families who expressed dissatisfaction noted barriers such as difficulty navigating the system, limited availability, long waitlists, and high costs. Families cited advocacy and service navigation as key facilitators. Low uptake of certain services and persistent barriers underscore the need for systemic changes. Conclusions: We outline potential solutions, including expanding Medicaid and insurance coverage, redesigning service pathways, and implementing family navigation to improve access and outcomes.

Implications for Impact Statement

At a well-resourced hospital, most children with autism received speech, occupational, and educational services, but far fewer accessed behavior therapy, ABA, or group therapy. Families described barriers such as high costs, long waitlists, and difficulty navigating complex systems. These findings highlight the need for changes in service pathways, insurance coverage, and family navigation supports to ensure that all children can benefit from the therapies they need.