AIR-B III

For AIR-B III we worked to help families of children with autism who live in under-served areas. They must navigate a complex world of diagnoses, services, and resources. Over a five year period our team did research and made tools with our community partners.

We split our work into two studies. The first was based on helping families access the services they need. The second was about supporting students with autism as they transition between schools.

To start AIR-B III we held a conference of over 250 people in South Los Angeles in November 2015. The conference helped to promote awareness and share information with the community. To prepare further, the team trained in community engagement and gathered feedback on our proposed studies. We collected input from the community over several months of interviews and focus groups.

Central to our mission is having a diversity of research participants and places. We used the Community Partnered Participatory Research methods from our partner, Healthy African American Families. This helped create interventions that are useful and can be sustained in the community. Through CPPR, we are able to expand our research into new parts of the community

Participating Sites: University of California Los Angeles, University of California Davis, University of Pennsylvania, University of Rochester

Mind the Gap

Background

Race, ethnicity, and economic status have all been connected to reduced services and later diagnosis for autism spectrum disorders.

Study

Mind-the-Gap is a tool to help caregivers get the services and support they need. We asked parents and our partners what was needed to help these underserved communities. Their answers helped us better understand the community and to better adapt this tool. We paid special attention to helping racial and ethic minority families.

Using a Community Partnered Participatory Research model, we have built partnerships with the community. We worked to tailor the services to each family's needs. Mind-the-Gap can be used to help with autism education, gathering resources, and cultural adaptations. It is a community-based tool that connects caregivers with low-resources to existing services and tools. 

Building Better Bridges

Background

Moving between grades or between schools can be very stressful for children with autism spectrum disorders. It is difficult for teachers and parents to provide support during this time. The transitions occur each year, but we focused on the largest transitions. These occur when moving from one school to another, such as from preschool to Kindergarten. For children with autism these transitions can mean losing support systems. Critical gains can be lost if support isn’t there before, during, and after these transitions.

Study
Building Better Bridges is a study to learn about the transition process for children with autism. We spoke with parents across our sites to help us learn about barriers they face. We gathered what we learned into data that can help build tools in the future. Core to the study was the “Social Dynamics of intervention,” a tool that helped us learn about the support systems of these children. Part of this study included the creation of Livebinders in English and Spanish to help parents with the transition process.

Social Dynamics of Intervention (SoDI)
We know that children with autism may each have different needs. Social network maps let us measure success even with the different needs of each child. A social network map draws the level of cooperation between all the people on a child’s transition team. The Social Dynamics of Intervention tool was designed by Dr. Elizabeth McGhee Hassrick and Dr. Kathleen Carely to create these social network maps.

AIR-B used the tool with families as they transitioned to new schools. We followed families from the end of school, over the summer, and to the new school. The ideal is for their social networks to form stronger connections over time. Once we learn about the challenges they face, we can design interventions to help the process.