Grants worth $13M will support interventions for families affected by autism spectrum disorder

LAWRENCE – The University of Kansas, through the Juniper Gardens Children’s Project, is a partner in two autism spectrum disorder research projects that have recently been awarded $13 million in federal grants.

One grant funds continuation of the Autism Intervention Research Network for Behavioral Health (AIR-B 4) based at the University of California-Los Angeles, a project that focuses on partnering with community groups and key stakeholders to provide access to effective interventions for underserved families. An additional funded project between KU and the University of North Carolina-Chapel Hill aims to evaluate use of an assessment tool that monitors the progress of interventions for young children diagnosed with autism spectrum disorder.

“These grants continue our decades-long emphasis on community-participatory research – involving the community in describing and addressing their needs through research, and with their input – as well as our long-standing focus on children’s development and autism,” said Brian Boyd, director of the Juniper Gardens Children’s Project in Kansas City, Kansas.

The AIR-B 4 grant funds three intervention studies, all of which use a team-based approach that relies on social networks and on partnering with community providers to implement the studies. Two of the interventions will be implemented through Juniper Gardens, among other university partners.

The Mind the Gap portion of the project focuses on providing resources and support for families soon after a child is diagnosed with autism spectrum disorder. Such early support has been shown previously to improve family empowerment and access to services. Juniper Gardens will work within existing and new community partners and families to carry out the research.

Additionally through the AIR-B 4 grant, KU will build on its broad research in self-determination to improve outcomes for adolescents with autism spectrum disorder. Self-determination, which is the ability to act as an agent in one’s own life in order to attain goals, has been pioneered at KU through the Kansas Center on Developmental Disabilities.

Self-determination will be taught through a three-phase process called the Self-Determined Learning Model of Instruction, which helps students gain the necessary skills for success later in life. The study also involves partnering with area school districts in Lawrence and Kansas City, Kansas, as well as districts near the University of California-Los Angeles, the University of Washington and the University of California-Davis.

“There’s an emphasis in these studies on working with underserved schools and communities,” Boyd said. “We already know that many of these interventions are effective, so this is much more about determining if we can get community agencies to implement and sustain these interventions long term without the heavy involvement of researchers.”

As part of AIR B-4, KU will establish community advisory boards that may include teachers, administrators, social workers, parents, autistic individuals themselves and other community stakeholders who would have an interest in supporting young children or adolescents with autism. Interested participants can reach out to the Juniper Gardens Children’s Project at brian.boyd@ku.edu or (913) 321-3143.

Additionally, Boyd is leading a $3 million project that will validate a method of measuring changes in social-communication and language skills in children ages 1-5 who have autism spectrum disorder. Juniper Gardens Children’s Project, which is a part of the KU Life Span Institute, and the University of North Carolina-Chapel Hill will recruit 400 participants for the study.

The measurement tool will be based on the Early Communication Indicator (ECI), which is part of a set of Individual Growth and Development Indicators for infants and toddlers, or IGDIs, which were developed at Juniper Gardens. The grant will verify that the ECI measure can show if a young child with autism spectrum disorder is progressing at the expected developmental rate and determine if they are responding to interventions or treatments.  

Currently, there is no tool available that easily allows practitioners, parents and caregivers to monitor progress, visualize data and conduct live scoring for children in this population, Boyd said.

“We already have evidence that this tool can measure early communication progress in young children,” Boyd said. “Our goal is to determine if this tool specifically works or can be used with young children with autism.”