Researchers at Northern Arizona University have launched a significant project aimed at investigating persistent disparities in autism services for children from underserved communities. This research comes in response to increasing concerns about the accessibility and quality of autism care, particularly for children from minority racial and ethnic groups.
The project was sparked by a groundbreaking report from the Centers for Disease Control and Prevention, which revealed, for the first time, that the percentage of 8-year-old children with autism spectrum disorder was higher among Black, Hispanic, and Asian or Pacific Islander children than among white children. Prior to the 2023 Community Report on Autism, white children were consistently diagnosed with autism spectrum disorder at higher rates than children from other racial or ethnic backgrounds, according to the Autism and Developmental Disabilities Monitoring Network.
According to the ADDM, these findings might reflect improved identification among historically underserved populations, and “it may be helpful to examine factors, such as social determinants of health.” This crucial observation underlines the need for deeper exploration into how socioeconomic and environmental factors might influence the diagnosis and treatment of autism, especially among marginalized groups.
In response to these findings, Olivia Lindly, an assistant professor in the Department of Health Sciences at Northern Arizona University, is leading an important research project to study “persistent racial and ethnic disparities in access to autism services for U.S. children enrolled in Medicaid.” This initiative focuses on the gaps in care faced by Latino, Black, American Indian, and Alaska Native children, who often encounter barriers in accessing critical autism services. The goal of this research is to understand and address these inequities and develop practical solutions that improve the accessibility and quality of care for these children.
Lindly and her team are working to clarify the persistent racial and ethnic disparities that exist in autism services. They aim to create “multi-level strategies, programs and policies” to improve access to these services, ensuring that children from all communities have the opportunity to receive the care they need. The NAU study, announced on January 8, is funded by a generous $2.9 million grant from the National Institutes of Health, underscoring the importance of this work in promoting equitable healthcare access.
Since joining Northern Arizona University, Lindly has been adapting the Parents Taking Action program, an educational initiative designed to support parents of children with autism, to better serve the Indigenous community. “About 30 percent of the population in Coconino County identifies as Indigenous, and the majority of that 30 percent are Diné or Navajo,” Lindly explained. This adaptation process has included collaboration with Diné parents of autistic children and local service providers, helping to create community-based initiatives that improve care coordination for autistic children, including those residing in the Navajo Nation.
Diagnoses and Accessibility Struggles in Arizona The research project initially emerged from questions about autism diagnoses within Arizona. “Why do we have differences at a state level in the prevalence of autism?” Lindly asked. This query highlighted the disparities in autism diagnoses and services within the state. Arizona has relatively restrictive policies concerning who is authorized to diagnose autism, which significantly impacts children’s ability to access services through the Division of Developmental Disabilities.
“There is a limited quantity of people who can provide therapy services like behavioral therapy, occupational therapy,” Lindly noted. As a result, many children are not able to access therapeutic services until they enter the school system, often not receiving a formal diagnosis until kindergarten or first grade. At that point, they must go through another process to obtain an educational diagnosis for autism, further delaying access to crucial support.
Lindly, who has experience working in cities like Boston and Portland, Oregon, was surprised by the scarcity of resources and services for families in rural Arizona. “I’ve been really inspired by people’s interests and dedication to trying to improve the system and organize more at a community level,” she said. This grassroots commitment to making a difference has been an important factor in the development of local programs that aim to improve care and access for families in rural and underserved areas.
Racial and Ethnic Barriers to Care In addition to the struggles with diagnoses, Lindly identified significant racial and ethnic barriers to accessing care. Interviews with parents of autistic children revealed that many families face difficulties when healthcare providers are not culturally responsive. “We’ve heard from some parents that they may have a doctor or health provider doing a diagnostic autism assessment for their child who is not Native,” Lindly shared. These providers often lack an understanding of the cultural beliefs and traditional practices that may influence how Native families approach autism care.
The Autism Society of Greater Phoenix is one organization working to address these challenges by providing educational resources and advocating for the Arizona autism community. Recently, the society took steps to address language barriers that prevent some families from accessing care. With the support of a grant from the Arizona Coyotes Foundation, the society translated all of its training courses, including Autism 101, Transition 101, and Safety 101, into Spanish, making these valuable resources accessible to a wider audience.
As a parent of a child with autism, Olivia Fryer, the society’s executive director, brings a personal understanding of the needs of autistic families in Arizona. “My son was first diagnosed with autism when he was 3 years old, and prior to that, I really didn’t have a lot of knowledge about autism,” she said. “Once he got his diagnosis, I was just one of those parents who threw myself into the community and absorbed any and all information that I possibly could.”
Fryer noted that while the number of providers in Arizona has grown in recent years, rural communities still face significant challenges in accessing autism services. “We get a lot of phone calls from families who live in the city of Maricopa or in some of the reservations, and there’s just not adequate access to resources there,” she said.
Ongoing Research and Future Plans Lindly and her team are making significant progress in their research and have completed the pilot phase of their program. They recently presented their findings to a community advisory group in March, and additional funding from Aetna Health will allow the project to expand. “We plan to hopefully sustain and expand the Parents Taking Action Program for Diné families in person at Tuba City Regional Health Care,” Lindly said. The goal is to involve more families and train additional parents to become community health workers who can directly deliver the program to other families.
In addition to this work, Lindly and her team are exploring opportunities to partner with hospitals to integrate parental education and training into existing health programs. This partnership could help reach more families and provide them with the tools they need to support their children’s development and access appropriate autism services.
As this critical research continues, Lindly and her team are committed to improving access to autism services and creating lasting change for underserved communities. Through their efforts, they hope to ensure that every child, regardless of their background or location, has the opportunity to receive the care and support they need.
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