Parent-Report Delays in Diagnosis and Service Initiation for African-American Children in a Multi-Site National Study

Background:  To the best of our knowledge, the true prevalence of ASD does not vary by race, yet detection rates of ASD are 20% higher in White non-Hispanic children (1 in 65) versus African-Americans (1 in 76) (CDC, 2016). U.S. surveillance research found that African-American and Hispanic children were more likely than White children to have a documented developmental concern before the age of 3 years, yet they were less likely to receive an evaluation before 36 months, (CDC, 2016).

Objectives:  This study explored the variability in autism identification pathways for families with African-American children focusing on three key events: a) first concerns and help seeking, b) first autism diagnosis, and c) start of special services. We developed an interview tool using EHCI methods to enhance accuracy of parent/caregiver recall regarding their experiences seeking an ASD diagnosis and services for their child. This Diagnostic Odysseyinstrument (Shattuck et al. 2013) seeks to capture and quantify barriers to quality treatment, medical care, diagnosis of autism spectrum disorders, and service seeking experiences for African-American and minority families.

Methods:  The sample was comprised of 312 African-American and bi-racial African-American children (251 male, 61 female) enrolled in the Autism Genetics Network, Phase II, Increasing the Representation of Human Diversityat four sites: Washington University in St. Louis (N=147), Emory University in Atlanta, Georgia (N=54), Albert Einstein University in Bronx, New York (N=41), and University of California, Los Angeles (N=70). Participants were diagnosed with or strongly suspected of having an autism spectrum disorder (275 diagnosed ASD; 37 suspected-ASD). Median household income was $36,500 for the ASD-diagnosed group, and $28,000 for the suspected-ASD group.

Results:  In the diagnosed group (N=275), the mean age parents reported first concerns with their child’s language, behavior or development was 21.4 months (SD=17.8), and they reported sharing concerns with a professional by a mean age of 27.1 months (SD=22.6). However, the mean age of receiving an official autism spectrum diagnosis in this group was not until 54.4 months (SD=36.3). In comparison, mean age of first concerns in the suspected ASD group (N=37) was 35.1 months (SD=26.2); mean age at the time of the research evaluation was 148.3 months (SD=75.9), with an average delay of 114.1 months (SD=75.2) between age of initial concern and identification of an ASD by research diagnosis. All parents of children suspected of having an ASD reported sharing concerns with a professional, mean age =42.0 months (SD=28.4), however only 46.0% of these children had been assessed for an ASD prior to study enrollment (mean age 91.0 months, SD=51.4). Seventy-six percent of children suspected of having an ASD diagnosis met DSM criteria based on a clinical best estimate research evaluation at the time of the study.

Conclusions: The findings of this study reveal continued concerns with delays in autism evaluations for African American children despite parents expressed concerns to professionals. This research can help us to guide interventions that may decrease the delay in diagnosis and adequate treatments for African-American children with autism spectrum disorders.