Factors Associated with Caregivers’ Decisions to Pursue a Diagnostic Evaluation After a Positive Autism Screen in Primary Care

We sought to understand whether a child’s sex, age, race, ethnicity, caregiver education, family income, and/or number of endorsed autism signs are associated with a caregiver’s decision to pursue an autism diagnostic evaluation after their child received a positive autism screen.

129 children, 17–30 months, received a positive autism screen on the Modified Checklist for Autism in Toddlers-Revised with Follow-Up, and all caregivers were offered ready access to a diagnostic evaluation by a trained professional in English or Spanish at no cost.

88 children received an evaluation and 41 did not. The likelihood of receiving an evaluation was associated with the child’s race. Only 58.1% of Black children were evaluated, compared to 80% of Hispanic/Latino and 88.5% of White children. Children of Spanish-speaking caregivers showed high rates of evaluation completion (85.7%). Children who were evaluated versus were not evaluated did not significantly differ in terms of child’s sex, number of autism signs endorsed by the caregiver, caregiver’s education and preferred language (English versus Spanish), or household income.

Even though the present study removed many common barriers to receiving a timely diagnostic evaluation, caregivers of Black children were less likely to pursue an autism diagnostic evaluation for their child. Future research is needed to understand the needs and perspectives of Black families to promote engagement in clinical care and reduce disparities in receiving a timely autism diagnosis which is important for accessing supports and services that can improve children’s outcomes.