By Michele Kipke (left), director of the Autism Speaks Autism Treatment Network Center of Excellence at Children’s Hospital Los Angeles, and Katrina Kubicek (not shown), assistant director for community engagement of the Southern California Clinical and Translational Science Institute.
As a member of the Autism Speaks Autism Treatment Network, Children’s Hospital Los Angeles is dedicated to ensuring quality care and treatment for all children with autism spectrum disorder (ASD). As part of this mission, we’ve embarked on a project to better understand gaps in autism diagnosis and care among our nation’s children – and to develop interventions to address them.
As many of you know, research has found that Latino and African American children are less likely to receive an ASD diagnosis and intervention services. Yet we have no evidence to suggest that autism rates are actually lower in these communities. Rather, the problem appears to lie in access to care.
Developing programs to address this disparity is important because early intervention is critical for improving health outcomes for children with autism.
We began our project with a study designed to improve our understanding of the challenges that Latino and African American face in accessing evaluations and treatment for their children. We joined with four regional centers and other local service providers to recruit 56 African American and Latino parents to participate in 10 focus groups.
Parents help us understand their challenges
The findings from these focus groups identified three overarching needs:
Parent Education. Overall, Latino and African American parents tended to have limited knowledge about autism before or after their children’s diagnoses. They were aware of their children’s developmental delays. For example, they recognized when a child’s speech was delayed or lost. They likewise were concerned when a child had limited or strained interactions with other children. Yet often, they didn’t identify these symptoms as indicating autism. Lack of support from spouses and other family members often complicated this issue. Too often, the concerned parent was told not to worry or that their child would “grow out of it.”
Assistance Navigating Complicated Service System. Through our focus groups, we came to understand that many parents were unsure how to get screening or diagnostic evaluation for their children. Often, their family physicians dismissed their concerns. They were told to come back if their child was not talking by the time he or she started school.
Often, minority parents reported feeling that the disregard for their concerns related to their ethnicity. Our Latino parents clearly expressed the need for pediatricians to learn how to effectively listen and communicate with them.
These parents said that when they were finally referred to an autism center, they felt relief. But even then, many reported facing a new round of challenges. They described how they had to fight for services without knowing what to ask for or what might be most helpful for a child with autism.
Need for Parental Advocacy Training. Many of our parents also reported they lacked the legal resources and strong advocacy skills needed when trying to get services for their children – both at autism care centers and during their child’s Individualized Education Plan (IEP) meetings at school. In our focus groups, we identified cultural barriers such as being reticent to question a doctor’s judgment and language differences. As mentioned earlier, many also lacked family support in pursuing autism services for their child.
Moving forward to address cultural needs
Based on what we learned in the focus groups, we are embarking on our next steps to address the needs our focus groups identified in ways that will lead to earlier autism diagnosis and improved access to services.
This will include adapting a curriculum for Latino families to address three overarching needs: knowledge about autism, advocacy training and assistance navigating the service system.
Based on a curriculum called Developmental Milestones, we are working with local providers and parents to integrate these three aspects into a single educational program. This program will be used in our communities with the help of promotores.
Promotores are Latino community members trained to provide basic health education in the community. While most of their work entails educating families about health issues, they also provide guidance on accessing community healthcare resources. Promotores serve as liaisons between families and health professionals and social service organizations. In this role, they not only educate, they also advocate, mentor and serve as outreach workers, role models and translators.
Our team will work with parents, providers and promotores to make sure that the curriculum we develop is culturally appropriate and addresses the community’s needs. We are excited to have the support of Autism Speaks as we move this forward and hope to share what we learn with our partner sites in the Autism Treatment Network.
Based on what we learn from this program, we will also adapt the program for African American families using a similar model that involves community health workers.
Editor’s note: Autism Speaks’ Early Access to Care program is dedicated to increasing access to high-quality early intervention services in all communities, with a special emphasis on reducing disparities in ethnic and low-resource communities. Learn more about the program and its resources for families, providers and communities here (en Español here).
Learn more about the Autism Speaks Autism Treatment Network – and find a center in your region – here.