Improved Early Identification of Autism in Latino Children

November 14, 2012

Despite evidence that formal Autism screening tools improve identification, the use of these tools in primary care settings tends to be low (Dosreis, Weiner, Johnson, & Newschaffer, 2006). In addition, although the prevalence of Autism has increased (CDC, 2012), there continues to be strong evidence of disparities in identification and service utilization for Latino children as compared to non-Latino white children (Mandell, et. al., 2009).

Georgetown's project, "Improved Early Identification of Autism in Latino Children," funded by the Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA), grew out of disquiet about disparities in access to developmental services in Washington among D.C. delegates to the Act Early Region III Summit in 2010. One of the goals that emerged from the summit was to increase screening for Autism Spectrum Disorders (ASD) among Washington's largely Central American immigrant families.

Screening in pediatric primary care was recognized as a key step in identifying young children with ASD in order to expedite early behavioral and educational interventions that can improve outcomes. In order to develop an effective approach, Georgetown partnered with Unity Health Care, a large provider of medical care, whose Upper Cardozo Clinic is the largest primary care center in D.C. serving a primarily Latino population. Through a community participatory process, which included preparatory research with families, primary care providers and medical staff, the "Supported Screening" model was created to enhance identification of ASD and successful referral and timely evaluations for Latino children.

The formative phase of the program included community research. Focus groups with Latino parents explored their beliefs and attitudes about Autism, knowledge of developmental milestones and comfort using a developmental screening questionnaire. Focus groups with medical providers surveyed their beliefs and practices related to Autism screening. Several potential barriers to successful intervention were identified. Families reported limited knowledge of developmental milestones or Autism. They also indicated that when there was a concern, they would more likely approach a community or family member rather than a medical provider, partly because this was not viewed as a topic that one would raise with a doctor. Primary care personnel were concerned that low literacy rates among Latino families would limit parents' ability to independently complete the screening tool, the Modified Checklist for Autism in Toddlers (M-CHAT, Robins, Fein, & Barton, 2001), conducted at 18- and 24-month well-child visits. Providers were also apprehensive about the time needed to administer the M-CHAT and follow-up interview and reported that families only infrequently raised developmental concerns. Additionally, cognitive interviews with parents about the 23 M-CHAT questions suggested that some wording in the translated tool was not culturally relevant. For example, the majority of Central American parents did not understand a question about the game "peek-a-boo," even when explicitly described, because there is no equivalent game in their native countries. As a result, it was necessary to adapt the M-CHAT wording slightly and modify the administration to meet the cultural and linguistic needs of participating families.

The resulting Supported Screening Program consists of three main components: (1) outreach activities for families around developmental milestones; (2) hands-on training for primary care providers, involving five 75-minute sessions covering diagnosis of ASDs, screening with the adapted M-CHAT, interpretation and referral, engaging and activating families as well as addressing barriers identified in formative research; and (3) ongoing care coordination and support for families by bilingual and bicultural family navigators with relevant professional and personal experience. Family navigators complete the M-CHAT in Spanish or English in a face-to-face interview with parents or over the phone. Screens and referrals are tracked for 18-60 month children who receive care at the Upper Cardozo clinic Efforts continue to develop and strengthen relationships in the community serving Latino children and families, including the school and early intervention systems, providers, and advocacy organizations.

Results in the second year of the project are promising. Pre-post training and follow-up evaluations with providers showed an increase in their knowledge of Autism. They also demonstrated increased understanding of the rationale and skills for evidence based screening as well as methods to encourage disclosure of developmental concerns by families. The rate of M-CHATs completed for eligible children at 18 and 24 months has shown rapid growth, increasing from less than 5% prior to the onset of Supported Screening to approximately 60% after three months of implementation to almost 100% six months into the intervention. Only modest changes have been seen in other Unity Care sites that did not receive the training. Referrals to Early Intervention have increased after positive screens. Patients report satisfaction with family navigation services. The family navigators have also noted anecdotally that parents of children in the targeted age range as well as older children show increased interest and awareness of developmental milestones.

Lessons learned thus far suggest that universal screening for ASDs and developmental delays in primary care is facilitated by preparatory research on community and provider needs. This assessment informs outreach, family engagement, screening instruments, procedures and staff training. Attention to these issues can influence engagement and disclosure of developmental concerns by Latino families and facilitate the adoption of a formal screening program focused on reducing disparities in rates of diagnosis and treatment.

About the Center and Program

The Improved Early Identification of Autism in Latino Children's program is a collaborative partnership between the Georgetown University Center for Child and Human Development (GUCCHD), theDepartment of Psychiatry at MedStar Georgetown University Hospital, and Unity Health Care, Upper Cardozo (UHC):

The GUCCHD is a division of Georgetown University's Department of Pediatrics. The Center's mission is to improve the quality of life for all children and youth, children with special needs, adults with developmental and other disabilities, and their families. The Center both directly serves vulnerable children and their families, as well as influences local, state, national and international programs and policy through three resource centers: Georgetown University Center for Excellence in Developmental Disabilities; The National Technical Assistance Center for Children's Mental Health and the National Center for Cultural Competence.

The Department of Psychiatry at MedStar Georgetown University Hospital offers comprehensive mental health care and outreach to children, adolescents and adults as well as education and training. It is also houses the Autism and Communications Disorders Clinic, which conducts multidisciplinary diagnostic evaluations, and provides recommendations with service coordination.
UHC operates 12 health centers in all eight wards of the District and is the largest provider of outpatient medical services to DC. The Upper Cardozo clinic located in Columbia Heights serves primarily Latino families and is the largest in terms of patient volume and clinical staff.

The study (project) is funded by grant, R40 MC 20171, through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program.