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Public Health Researcher Will Lead $3 Million Pilot Autism Intervention

Will address racial and economic disparities in early diagnosis and treatment of young children with autism

December 19, 2014
  • Lisa Chedekel
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Emily Feinberg, SPH associate professor of community health sciences and MED associate professor of pediatrics. Photo by Michael D. Spencer

A researcher at Boston University’s School of Public Health (SPH) and School of Medicine (MED) will lead a $3 million study aimed at addressing racial and economic disparities in the early identification and treatment of autism spectrum disorder (ASD) among young children.

The five-year grant from the National Institute of Mental Health (NIMH) will allow a team led by Emily Feinberg, an SPH associate professor of community health sciences and MED associate professor of pediatrics, to test an intervention at three urban primary care centers: Boston Medical Center, Children’s Hospital of Philadelphia, and Yale University. Feinberg and her collaborators from the national Developmental and Behavioral Research Network—Dr. Amanda Bennett (Children’s Hospital) and Carol Weitzman (Yale)—will target low-income and minority children, who are most likely to experience delays in ASD diagnosis and service provision.

All children between birth and age two will be screened as part of routine practice, and some of those with a confirmed risk for ASD will be assisted by “family navigators” to access high-quality ASD services. Patient “navigation” is a lay-delivered case management approach that focuses on overcoming logistical hurdles to care—such as transportation, language barriers, or insurance complexities.

Emerging evidence shows that ASD can be reliably diagnosed by age two, and that early screening and intervention can improve outcomes. However, service delivery changes that support early identification and linkage to services “have not kept pace with advances in diagnosis and treatment,” Feinberg says.

“Feasible, culturally appropriate interventions are needed to reduce these disparities and to improve the developmental outcomes of children with ASD,” Feinberg says.

“Barriers are heightened for low-income and minority children with ASD, and contribute to disparities in age of diagnosis, timeliness of service provision, and access to quality services.”
— Emily Feinberg, associate professor of community health sciences

ASD symptoms emerge in early childhood. The most recent data from the Centers for Disease Control and Prevention regarding ASD prevalence, released in March 2014, estimates that about 1 in 68 children are identified with ASD. The central features of ASD are deficits in social communication and restricted, repetitive patterns of behavior and interests.

The grant to Feinberg’s team was one of five grants recently awarded by NIMH for research into ASD early detection and treatment.

Despite the increasing numbers of people of all ages identified with ASD, “access to effective services remains inconsistent, at best,” NIMH Director Dr. Thomas Insel said in announcing the grants. “Parents are often left to navigate what is available as best they can, and worry for the future as their affected children grow into adulthood.

“This research is aimed at testing care strategies, adaptable across communities, in which identification of need and engagement in optimal interventions and services will be standard for all ages.”

The BU-led study seeks to screen at least 80 percent of all young children across the three primary-care sites, shorten the time to diagnosis, and increase engagement in evidence-based treatments. The research team also will examine key barriers to care and gauge caregiver stress.

Feinberg has led previous research on ASD, including a study published earlier this year in JAMA Pediatrics that found that a brief, problem-solving intervention helped to reduced stress and depressive symptoms in mothers of children who had recently been diagnosed with ASD.

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