Tuesday, September 25, 2018
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New Approaches to Research on Autism in the Community
By Hyon Soo Lee & Amanda Gulsrud
Published August 16, 2018

UCLA researchers and community partners, including members from HAAF, SCLARC, Westside Regional Center, the Spectrum of Hope Foundation, school administrators and parents, meeting at the HAAF office for the monthly community workgroup.

Researchers at UCLA are partnering with local community members to provide better services for families who have children with autism spectrum disorder (ASD). This team is called the AIR-B Network, Autism Intervention Research Network on Behavioral Health. It is led by Dr. Connie Kasari at UCLA. The team includes other schools as well: UC Davis, University of Pennsylvania, University of Rochester, and Drexel University.
The research team has partners in the community at each location. Partnering with Healthy African American Families (HAAF), South Central Los Angeles Regional Center (SCLARC), and Fiesta Educativa, UCLA has reached out to African American, Latino, and Korean groups in Los Angeles.

Together, we share information about autism. We work with families who may need more help. These families often have fewer resources and need services. These are also families that usually do not participate in research.

Autism affects 1 in 59 children in the U.S. Helping children with ASD earlier in life helps them do better throughout their lifespan. However, it can be difficult for some people to get assistance. It is especially difficult for the families who have low-income, and for those who are ethnic minorities. Children in minority groups get diagnosed later than Caucasian children, which slows down access to services.

There are many challenges that can prevent families from participating in research. Such challenges might include: having less time due to working multiple jobs, difficulty with transportation, language barriers, and not trusting research.

AIR-B wants to help with these issues in new ways. Traditionally, researchers create an intervention in the university, then bring it to the community. But they do not ask community members for feedback. This process is often not a good fit for the community and these programs often do not last.

The AIR-B Network is changing the way research is designed by working with community members from the start. The community is involved in each phase of research. This approach is called the community-partnered participatory research (CPPR) approach (Jones, 2009). People in the community make sure that researchers understand what the community cares about. They represent the community voice, protect the people in the community, and offer fresh perspectives. Researchers and community partners meet every month to discuss research design, intervention development, recruitment, and to plan annual autism conferences in the community. This ongoing relationship helps make sure the research team is in line with the community’s interests.

This process has resulted in two new intervention programs for low-resource families; Building Better Bridges and Mind the Gap. Both studies were designed with our partners and tested last summer. Now, the full project has been launched. The Building Better Bridges study tries to help children with autism move through the school system more successfully. The goal is to make transitions into kindergarten, middle school or high school easier for families. This project provides helpful tools, coaching from our research staff, and encourages parents to advocate for their children. This intervention is offered in English and Spanish.

Mind the Gap is a peer-coaching study. It aims to help families get support as soon as possible. In this intervention, parents are trained to become coaches of other parents, whose children have just been diagnosed with autism. These parents are called peer coaches, because they have gone through the same process themselves. They understand these families’ grief, confusion and anxiety when they receive their children’s diagnosis. With peer coaches’ experience and materials developed by the AIR-B team, parents will learn about autism. They will learn how to navigate the service system, how to talk to family members about autism, and how to support their children’s communication. This intervention is offered in English, Spanish, and Korean and is actively recruiting parents.

Parents who want a Mind the Gap peer coach to guide them through the process of getting autism services can call 310-825-4775 or visit http://airbnetwork.org/recruitment_downloads.asp for more information.

Categories: Family | Health | News (Family)
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