Early Diagnosis of ASD In a Community Sample: Who Refers and Why?

Background:   Early diagnosis of autism spectrum disorder (ASD) has become an important clinical and public health goal. Efforts to increase early identification have been directed at pediatricians (AAP) as well as parents (CDC, Autism Speaks). In community settings, how do very young children with ASD come to attention? Are they being referred by their doctors or their parents? For specific concerns regarding autism or for other reasons?

Objectives:  To examine referral source and chief concern of young children diagnosed with ASD in a community early intervention setting and to assess the relationship between referral and clinical presentation/demographics.

Methods:  Retrospective chart review of 101 children presenting by age 24 months (mo) to a University Affiliated early intervention program from 2003-2010 who received an ASD diagnosis based on multidisciplinary evaluation. Data included: age, demographics, year of referral and referral source, chief concern, autistic features (DSM-IV, Childhood Autism Rating Scale-CARS), and cognitive level. Statistical analysis included chi-square, t-test, and logistic regression.

Results:  Mean age 20.2 mo; 75% male; 44% with cognitive standard score >70. 64% had Medicaid. 48% Hispanic, 22% white, 22% black. 38% of mothers were college educated. Referral source: 54% physician, 33% parent, 14% other agencies. Chief concern: language (40%), ASD (33%), general development (13%), language/behavior (9%), high risk follow-up (5%). Of those with ASD-specific concerns, 54% of referrals came from physicians, 25% parents, 21% others. Whites were more likely than both blacks and Hispanics to come with an ASD-specific concern (OR White 4.1 95% CI 1.1-15.1), an association that remained after adjusting for maternal education and Medicaid use.
Physician referrals were more likely to display poor eye contact (p=.05), lack of showing (88% vs 65% p=.01) and stereotypic interests (58% vs 30% p=.009). Parent referrals were more likely to display rigidity/adherence to routines (17.2% vs 4.7% p=.04). Referral source and chief concern were not influenced by ASD severity, cognitive level, age, and year of referral.

Conclusions:  Physician referral accounted for the majority of children with early ASD diagnosis. For most, referral was for general developmental concerns rather than specifically for ASD. Physician-referred children differed clinically from parent-referred. Demographic features impacted on the likelihood of an ASD-specific referral.