Brief Report: Service Referral and Enrollment Following Autism Diagnosis in Primary Care

Lag between autism diagnostic evaluation and initiation of intervention results in missed opportunities during a developmental window of optimal impact. However, few studies have examined the rate of referral for early intensive behavioral interventions (EIBI) at the point of diagnosis and the period between diagnosis and entry into EIBI. The current study examines both referral for EIBI at the time of diagnosis and enrollment in EIBI 12-months post-diagnosis.

Participants included 76, 14- to 48-month-old children diagnosed with autism in the primary care setting. Caregivers completed a brief questionnaire on EIBI referral and enrollment following evaluation and again 12-months later.

More than 80% of children were referred for EIBI at the time of diagnosis. At 12-months post-diagnosis, however, only 50% of children were enrolled in EIBI. For those enrolled in EIBI lag between diagnosis and enrollment was almost 7 months (M=201 days; SD=122.7; range=8-414 days). While race/ethnicity, SES, and urbanicity were not associated with lag, lower caregiver education level was associated with enrollment status and lag for those receiving EIBI.

There is a significant delay access to EIBI for young children diagnosed with autism. Navigating service referral and access may be particularly challenging for caregivers with limited education backgrounds.