Family Experiences with the Autism Developmental Evaluation Process: Perspectives of Immigrant and US-Born Mothers

Research has repeatedly shown the positive effects of early diagnosis and intervention in improving the quality of life and symptom trajectory of individuals with autism spectrum disorder (ASD). Immigrant and racial/ethnic minority children are diagnosed with ASD at significantly older ages, and have access to interventions later than their White peers. Recent efforts to address diagnostic disparities have focused on universal ASD screening in pediatric primary care. However, little is known about immigrant families’ experiences with ASD screening and with navigating subsequent referrals after receiving a positive ASD screen. In the current study, we explored cultural influences on: mothers’ perceptions of child development and disability, communication with pediatric healthcare providers, and perceived benefits of Early Intervention services. We interviewed 26 mothers (14 US-born and 12 immigrant—representing twelve different nationalities) of children who screened positively for ASD in primary care but did not receive an ASD diagnosis after a formal evaluation (i.e., false positive ASD screen). Mothers completed semi-structured qualitative interviews that explored their perceptions of child development, experiences with the ASD screening and developmental evaluation process, and experiences with developmental services. Data were stratified by U.S. nativity and analyzed using applied thematic analysis. Immigrant mothers described different ways of monitoring child development than US-born mothers, and described a mismatch between their own views and the child development frameworks used in the U.S. Due to this mismatch, immigrant parents may be less likely to raise concerns to their pediatricians, and therefore may particularly benefit from routine screening. This paper uses data from a supplemental study to a larger clinical trial. The clinical trial registration number is NCT02359084.