Supported Screening to Enhance Identification of ASDs in Latino Children

Background:   Screening in primary care is a key step in identifying young children with ASDs in order to expedite early behavioral and educational interventions.  However, despite evidence that formal screening improves accuracy of identification over informal clinical assessment, the use of these tools in primary care is low.  Moreover, there is strong evidence of disparities in rates of identification and service utilization for Latino children as compared to non-Latino white children.  Here, we present evidence for the effectiveness of an 18-month trial of Supported Screening (SS)—developed through a community participatory process including formative research with families and primary care providers (PCPs) and staff--to enhance the uptake of universal screening for ASDs in a large primary care center serving a primarily Latino population and increase identification of children with ASDs.

Objectives: The goals of SS are to enhance the identification of ASDs and other developmental delays in Latino children by increasing: (1) screenings conducted at 18- and 24-month well-child visits; (2) positive screens; and (3) successful referrals and timely evaluations.

Methods: SS has been implemented at the Upper Cardozo site of Unity Health Care (UC-UHC) in the District of Columbia and includes three components: (1) formative research and outreach activities; (2) 5-session training for primary care providers (PCPs), and (3) Family Navigators (FN) with lived experience who provide support to families (in person and phone contact) with a child identified at risk for ASD as well as ongoing care coordination with early intervention and medical providers.  Screens and referrals are tracked for the approximately 6000 0-36 month old children per year who receive care at UC-UHC (80% are identified as Latino).

Results:   Formative research with PCPs and families, including cognitive interviewing, resulted in adaptation of M-CHAT administration (oral format, shared screener implementation by family navigators and PCPs) and a focus on engaging families/addressing barriers in PCP training, coupled with ongoing consultation.  Evaluations showed significant increases in PCP knowledge of autism, evidence based screening and methods to increase caregiver disclosure of developmental concerns.  The percentage of children screened has risen from under 5% prior to the onset of SS to 80% in month 18.  PCPs completed 10% of screens at the onset of SS but 45% by month 18.  Whereas no children were identified at risk for ASD in the year prior to SS, 18 (3.7%) children screened positively on the M-CHAT were referred for services. This percentage is comparable to those found in other Spanish language populations.  Of those referred, 10 now receive services.

Conclusions: Universal screening for ASDs in primary care and successful follow-up of positive screens was facilitated by (1) assessment of community/provider needs to inform outreach, family engagement, screening, and staff training, and (2) FNs integrated into the health provider system.  Attention to these issues can increase disclosure of developmental concerns by Latino families, produce positive changes in organization climate and attitudes of providers and families toward early screening and referral for ASDs, helping to reduce disparities in rates of diagnosis and treatment.