New project focuses on supporting early autism interventions for toddlers
Committed to delivering early intervention services in a family-centered way, Jessica Amsbary, PhD, is leading a new project, “Empowering Culturally Diverse Families in Early Autism Intervention for Toddlers.” Amsbary, a technical assistance specialist at the UNC Frank Porter Graham Child Development Institute (FPG), is collaborating with Jessica Kinard, PhD CCC-SLP, who brings to the work her experience as a bilingual speech language pathologist at the Carolina Institute for Developmental Disabilities.
The project will be part of and complement the current modules of the Autism Focused Intervention Resources and Modules (AFIRM). Team members from the National Professional Development Center on Autism (NPDC), housed at FPG, have collaborated to develop AFIRM, which offers freely available online modules and additional resources to support practitioners working with children and young adults with autism in learning about and using evidence-based practices. FPG Senior Research Scientist Ann Sam, PhD, was the principal investigator of the original module development.
While there are a variety of modules available for practitioners, including a set of modules for early intervention providers—published in 2022 - 2023, and funded by the Early Childhood Technical Assistance Center at FPG—the new project will offer the inaugural module that supports families, in particular families receiving early intervention services.
The early intervention training modules in conjunction with the new family module when published will offer early intervention providers and caregivers a strong foundation for implementing evidence-based practices (EBPs) as a team in a way that addresses the cultural and linguistic needs of families.
In the early intervention family-centered service delivery model, the goal is for early intervention providers to coach caregivers to use EBPs. However, this is not the way services are always delivered. Amsbary realized the importance of creating a way for caregivers to learn directly about their role in early intervention, empower them to implement evidence-based practices, and understand that the goal of early intervention is for caregivers to apply the strategies in daily routines and activities. Amsbary partnered with Kinard because of her experience in developing culturally responsive supports for families from a variety of backgrounds.
Kinard notes that the project is particularly important for Spanish-speaking families because there are very few Spanish-language resources available. “These families face cultural stigma about autism, as well as cultural attitudes about needing to defer to authority figures like providers, whether or not the family agrees with what the provider says,” says Kinard. “Providing families with information that says, ‘It's fine for you to participate in your child’s early intervention; in fact, that's what is best, because, as the parent, you're the expert in your child,’ will be powerful.”
The plan is to conduct a series of focus groups, with separate groups for English-speaking and Spanish-speaking families, to gain insights on what would be useful in terms of content and content-delivery methods. The focus groups will explore needs in the community, supports that would be useful and relevant, and differences in cultural values and parenting styles. The researchers will use these data to develop an online module, in English and Spanish, designed for families receiving early intervention services. The goal is to have the module online by March 2025. The information will also be disseminated via social media and methods suggested by focus group participants.
“Our goal is to empower our real front line workers, who are families and caregivers,” says Amsbary. “In early intervention, we want to see services delivered with providers and families as equal partners, with partnerships grounded in trust and collaboration and working together to support the needs of the child and family.”
While the focus groups will determine the specific content of the modules, the general aim is to help families feel empowered to be active participants in their child's early intervention by learning about early intervention practices. Amsbary says that research has shown that children whose families partner with their early intervention providers and implement the suggested strategies have better outcomes. “Our goal is to empower our real front line workers, who are families and caregivers,” she says. “In early intervention, we want to see services delivered with providers and families as equal partners, with partnerships grounded in trust and collaboration and working together to support the needs of the child and family.”
Funded by a grant from the UNC Autism Research Center, this pilot project is intended to inform a future grant for a larger study to examine whether the learning module for families, along with embedded coaching support from the UNC team, results in better outcomes for children and families.
“We want to focus on supporting families and providers so that everyone is able to work together in partnership,” says Amsbary.