System Experiences of Mothers Who Have Limited English Proficiency and Preschoolers with Autism

Abstract

This study was conducted to understand the experiences of mothers with limited English proficiency (LEP) and their children with autism during diagnosis and receiving services for their children with autism. A qualitative approach and the health disparity framework were adopted to answer the research questions. Using grounded theory methodology, 16 mothers with LEP and their preschool-aged children with autism were interviewed. Lack of communication during clinical encounters was the main category that arose from the data. Mothers with LEP have difficulties navigating the US healthcare system and autism-related institutions. Patient factors (no support system, stigma around autism, awareness about autism) affected their interactions with autism service providers. Providers of autism diagnosis and services were out of reach, especially because of communication barriers. The health system played a major role in widening the disparities for mothers with LEP and their children with autism with long wait times for diagnoses and services, lack of insurance coverage for services, culturally incompetent staff, and existing complicity in the system. Mothers with LEP felt abandoned by the US healthcare system in receiving diagnoses and services for their children with autism. In the United States, mothers who have LEP encounter significant barriers in accessing diagnosis and early intervention services for their preschool-aged children with autism. The objectives of Healthy People 2030 will not be achieved without addressing the needs of an understudied population of people with LEP.