URMC to Lead $7M Study on Early Intervention for Autism Spectrum Disorder

Apr. 4, 2019
Department of Defense Funds Research on Lower-Intensity Approaches
autism intervention with therapist and child

Each day, thousands of young children with a diagnosis of autism spectrum disorder (ASD) receive therapy to address deficits in communication, social interaction, and engagement. Commonly referred to as Early Intensive Behavioral Intervention (EIBI) or Applied Behavior Analysis (ABA), this approach has been found to be effective for increasing adaptive behaviors and decreasing any challenging behavior a child may exhibit. EIBI often requires an intensive time commitment. Children often receive services for 20 or more hours per week, and this can be burdensome to children and families. Despite decades of research on this treatment approach, little is known about how to tailor interventions systematically or how to precisely apply different doses of intervention to meet the individual needs and responses of any one child.

Recent research suggests that EIBI may be effective when delivered at a lower intensity and with systematic emphasis of developing specific skills for some children.  To investigate this, the Department of Defense has provided $7 million in funding to better understand what dose and components of EIBI is most effective for which children. Military families have unique stressors and lifestyle needs that may include planned relocation and the need to transfer services to new providers. This study will advance current knowledge on how to best implement behaviorally-based interventions for young children with ASD by examining the impact of interventions on both children and families.

Children newly diagnosed with an autism spectrum disorder, ages 1½ to 5 years of age and referred for ABA through Tricare in North Carolina, Ohio, and Tennessee may be eligible to participate in this landmark study. Clinicians already providing EIBI through Tricare in these locations are working together to examine the interventions. Partners in this project include the May Institute (site Principal Investigator and team Clinical Implementation lead Cynthia Anderson, PhD), the Cleveland Clinic Children’s Center for Autism (site Principal Investigator and team Scientific Director, Cynthia Johnson, PhD), Nationwide Children’s Hospital (site Principal Investigator Eric Butter, PhD), and Vanderbilt University Medical Center (site Principal Investigator Zachary Warren, PhD). This project is being coordinated through the University of Rochester School of Medicine by a team of researchers who were led by Tristram Smith, PhD; a long-time investigator of the impact of early behavioral interventions, until his untimely death in 2018 (Rochester Principal Investigator, Susan Hyman, MD). The collaborative research team includes Beth Ellen Davis, MD who will provide guidance on the unique needs of children who are military dependents.

The U.S. Army Medical Research Acquisition Activity, 820 Chandler Street, Fort Detrick, MD, 21702-5014, is the awarding and administering acquisition office. This work was supported by the Congressionally Directed Medical Research Programs through the Autism Research Program under Award No. W81XWH-18-1-0520. Opinions, interpretations, conclusions and recommendations are those of the author and are not necessarily endorsed by the Department of Defense.”

As of 2017, almost 17,000 children of military personnel were receiving early intensive behavioral intervention through Tricare. Many children of military personnel with ASD are not receiving services, however. To ensure early identification and referral for intervention in early childhood when it may be most effective, children of military dependents are screened for autism spectrum disorders in the context of routine health care. Once diagnosed with an autism spectrum disorder, families of active duty service members need to enroll in the Exceptional Family Member Program. This enables them to be eligible for Tricare Extended Care Health Option benefits, which includes authorization of 6 months of intense behavioral intervention (also called Applied Behavior Analysis or ABA therapy) once referred through the regional Tricare coordinator.

Resources that may help military families affected by autism learn more about autism and services through the lifespan include  and in addition to local autism support agencies.