Understanding the Experiences and Barriers to Care Affecting Families of Children with Autism Spectrum Disorder (ASD)

Abstract

The national prevalence of ASD has shown a rising trend in recent years, specifically with a rise in cases diagnosed at younger ages in patients who identify as white, which may be due to progress in detection and increased surveillance in populations. Not all children are benefitting from this optimistic increase in early detection and intervention as ethnic disparities remain and certain minority groups continue to be disproportionately diagnosed at a later age despite similar clinical presentations to age-matched patients from other cultural backgrounds. Early therapeutic interventions are crucial for children to develop appropriate social, emotional and communicative behaviors. Consequently, children who are diagnosed later in life and face greater challenges in accessing treatment may have undesirable developmental outcomes. The purpose of this project is to identify potential sociocultural factors that may contribute to the disparities that exist. Although the factors influencing disparities may be multifactorial, this study focuses specifically on the level of acculturation and social determinants of health as quantitative measures. While also considering perspectives of the diagnostic process from the families of children with ASD reported as qualitative findings. Participants completed a mixed-mode online survey instrument, available in English and Spanish, that investigated potentially problematic barriers influencing delays in diagnosis and limited access to treatment. The goal of this study is to better understand the experiences that families encounter and identify important predictors that a child with ASD will have difficulty in obtaining adequate care.