Autism Spectrum Disorder Identification,Diagnosis,and Navigation of Services: Learning From the Voices of Caregivers

Abstract

This study explored caregivers’ perspectives on facilitators and barriers to screening, diagnosis, and identifying and accessing other services for young children with autism spectrum disorder (ASD); and caregivers’ suggestions for improving the process. Eight focus groups with 55 caregivers were conducted. Four groups had a mix of White, African American, and Asian caregivers, and to gain broader populations, we recruited two groups of Spanish-speaking and two groups of American Indian caregivers. Some caregivers reported that their child and they received excellent services; however, the majority reported concerns about the services they and their child received. The findings also indicated a lower age of diagnosis and a smaller gap between concerns and diagnosis for White non-Hispanic children compared with Hispanic non-White children. Caregivers had many suggestions for ways to improve the process.