The Autism Intervention Research Network on Behavioral Health is seeking participants for a research project that educates parents of young children with autism spectrum disorder (ASD) from under-served communities who have limited access to resources and support.
Research indicates children from minority racial/ethnic groups and families who are economically disadvantaged experience disparities in care. Additionally, children from these families are diagnosed an average of two years later than white children, delaying their access to support services. Social stigma also can play a significant role in delaying care.
The project, Mind the Gap, is the third in a series to address these disparities and focuses on children ages 2-6. Earlier interventions, Parent Mediation and Remaking Recess, addressed communication skills between children and parents and supported teachers by encouraging social engagement between students with ASD and their peers.
“Usually when a child is diagnosed with autism, their parents get a huge list of recommendations that can often be challenging,” said Aubyn Stahmer, clinical psychologist and autism assessment expert at the UC Davis MIND Institute. “Sometimes extended family or community members say, ‘There’s nothing wrong, there’s no need to move forward, just wait and see.’ So parents might wait a while and not do anything.”
The Autism Intervention Research Network on Behavioral Health (AIR-B Network) is a collaboration among community practitioners, teachers, parents and researchers from UC Davis, UCLA, University of Rochester and University of Pennsylvania. The coordinating center is the UCLA Center for Autism Research and Treatment, where Connie Kasari is the primary investigator. Stahmer is the primary investigator for the UC Davis site.
Each site will recruit 30 parents, totaling 120 across the four locations. Participants will be split into two groups – one given access to online resources and trainings and one given access to the resources, trainings and a peer coach. Families without the peer coach will be observed for one year, while families with the peer coach’s guidance will first participate in a 12-week program, followed by monthly check-in calls for the remaining nine months. By splitting the group, researchers hope to learn whether a peer coach is beneficial to the overall outcome of the parent intervention.
Peer coach Dewana Hale has seen first-hand how families can bloom with support and guidance.
“Peer coaching offers a cohesive and collaborative way to assist parents in building a solid foundation for their child’s health, education and future as a thriving individual,” said Hale.
Families will be provided a wide variety of online tools through the study website, including videos, infographics and interactive activities. Each week parents will get homework to keep them on track and provide a real-life example of what they learned in a video or activity. For example, a parent may learn how to navigate local community resources and their homework will prompt them to make a step toward enrolling their child in a service. The website also includes tutorials on practical topics like “What to do with a diagnostic report” and more supportive resources like “How to talk to your family about autism spectrum disorder.”
Persistence is key, said Stahmer, who hopes the study will teach parents how to ensure their children get the services they need.
“Sometimes agencies are really impacted, so they (parents) may not get a call back,” said Stahmer. “We don’t have a fast track, but we have a way to teach parents how to get the services they need and where to put their energy. By the end of the project they’ve learned about the system, they know what their child needs and know how to access it.”
To participate in Mind the Gap, parents and providers can visit: http://bit.ly/MTGstudyform.