Defragmenting the path to diagnosis for underserved youth with Autism Spectrum Disorder in a community-based health system

Abstract

Autism Spectrum Disorder (ASD) is a pervasive neurodevelopmental disorder that affects about 1 out of every 54 youth and is characterized by impairments in social communication and functioning. ASD is a treatable condition though, and early initiation of interventions in the home and community can lead to improved long-term outcomes. Despite the clear benefits of early diagnosis and intervention, many youth, particularly from impoverished and minoritized populations, face tremendous barriers to accessing a timely formal diagnosis and critical early supports. Many of these barriers are inherent features of a fragmented health care system that even the most resourced of families struggle to navigate. Informed by the principles of coproduction of health care, value-based care design, and health equity, we present a quality improvement initiative to defragment the experience of care for underserved families seeking a timely formal diagnosis of ASD in a safety-net community-based health system. Over the course of 2.5 years, we were able to partner with families to create clinical workflows that cut in half the duration of time from first developmental concern to ASD diagnosis, and lowered the median age of ASD diagnosis in our health system by more than 3 years. We share our process and lessons learned in the hopes of helping other health systems pursuing similar goals for patient- and family-centered care design.