Who Goes Unseen? Race, Socio-Economics, and Autism Screening

Background:

The American Academy of Pediatrics recommends all children be screened for ASD at 18 and 24 months of age. ASD screening tools allow clinicians to identify children at risk and provide diagnoses at younger ages. However, not all families engage with follow-up or evaluation services after screening. Historically, families of color and families of lower socio-economic status (SES) have lower rates of engagement with ASD services. While universal screening tools remove some barriers to access to intervention, racial and socioeconomic disparities may influence the extent to which screening is effective in population subgroups.

Objectives:

This study presents preliminary data from initial screening at 18-24 months of age, and examines patterns of attrition related to race, maternal education, and income.

Methods:

Participants were drawn from a sample of children who screened positive on the M-CHAT-R/F or the M-CHAT when screened at 18-24 months of age. Parents were invited to complete a follow-up phone interview to determine eligibility for a free diagnostic evaluation and offered an evaluation if appropriate. Participants lost to attrition who did not complete a phone interview for evaluation eligibility are the No Phone Interview (No-PI) group (n=310). Participants who completed a phone interview and were offered an evaluation are divided into two groups: the Evaluated group (n=634) and those lost to attrition before completing the evaluation (No-Evaluation group) (n=75).

Results:

At the 18-24 months screening, groups did not differ by age or gender. Groups differed significantly on years of maternal education, with the mothers in the No-PI group having significantly fewer years of education than mothers in the Evaluated group. There was also a significant difference between groups on median income such that the No-PI group had a lower median income than both the No-Evaluation and Evaluated groups. The groups also differed significantly on race/ethnicity. Those in the No-PI group were more likely to be children of color than children in the Evaluation and the No-Evaluation group. Those in the No-Evaluation group were also more likely to be children of color than children in the Evaluated group.

Conclusions:

This study presents preliminary data on a sample of participants who screened positive on an ASD screening tool but did not complete the follow-up or evaluation compared to peers who competed follow-up and evaluation. Children of color, lower income, and with mothers with less education were less likely to complete the diagnostic process. These data suggest universal screening removes some barriers in the early detection process. However, more minority and lower SES participants than White and higher SES participants were lost to attrition, and thus lost access to evaluations that made them eligible for treatment services. This is a notable pattern of disparate access for pediatricians and early interventionists who serve more vulnerable populations to consider.