Racial and Ethnic Differences in Diagnosis and Service Use

Background: Prior research suggests racial and ethnic disparities in age of diagnosis and therapeutic/educational service use for individuals with autism spectrum disorder (ASD). Specifically, individuals from minority populations are commonly reported as being diagnosed later and receiving fewer services, relative to those from a non-minority group. Additional research is needed to better understand and address differences.

Objectives: The purpose of this study is to examine differences in age of diagnosis and therapeutic service use for an ethnically diverse sample of individuals diagnosed with ASD.

Methods: Participants represented a subset of individuals who had previously registered with the SPARK (Simons Foundation Powering Autism Research for Knowledge) study. SPARK is an ongoing, nationwide autism genetic study funded by the Simons Foundation. SPARK participants are asked to provide a genetic sample and answer questions related to developmental/clinical history and symptom presentation. The University of Miami Center for Autism and Related Disabilities (UM-NSU CARD) serves as an affiliated clinical partner site, tasked with recruiting individuals into the SPARK study. For the current study, data from SPARK registrants who selected UM-NSU CARD as their affiliated site and who had completed a questionnaire related to background history were included. The sample consisted of 189 children and dependent adults with ASD (m=8 years (range 1-33 years), and included 58 (31%) Caucasians, 88 (47%) Hispanics, 14 (7%) African Americans & 29 (15%) from Mixed/Other race. Group comparisons of various diagnostic and service use variables were statistically evaluated.

Results: In this sample, there were no mean differences in age of diagnosis or onset of first concern based on racial/ethnic classification. Regarding education and service use, Caucasians had significantly higher use of psycho-pharmaceutical treatments; whereas African Americans were more likely to have repeated a grade in school. No other significant differences were identified in terms of school placement, school services, and other therapeutic interventions.

Conclusions: ASD is known to impact individuals across various racial and ethnic groups, and the clinical prognosis is impacted by access to early and high-quality interventions. Therefore, it is important to continue to examine the differences between racial and ethnic groups, in order to develop individual and community-based strategies to ameliorate such differences. In this sample, minority and non-minority groups received ASD diagnoses at comparable ages. While contrary to prior research, this finding may represent improvements in diagnosis across racial/ethnic groups. Furthermore, the University of Miami is located in an urban and ethnically-diverse area, whereby diagnostic trends may differ from those found in alternative locations. Despite comparable diagnostic ages, identified differences in treatments are clinically and educationally relevant. Future research may want to explore cultural differences in the perceptions and knowledge about psycho-pharmaceutical treatments. Furthermore, educational settings should continue to focus on efforts on addressing disparate educational practices for African American students.