During Hispanic Heritage Month the team of researchers at the UVA Supporting Transformative Autism Research (STAR) initiative is working to highlight the increasing need for diagnostic and support resources for Hispanic families impacted by autism.
According to census data, the Commonwealth of Virginia has seen a 32.1% increase in the Hispanic population since 2010. However, according to a 2013 study in Pediatrics, less than one third of primary care pediatricians surveyed offer Spanish language ASD screening, and only 10% offered both general developmental screenings and autism spectrum disorder screenings in Spanish.
“Hispanic children are being diagnosed with ASD at lower rates than their white and black peers, likely because of missed diagnoses,” said Micahela DuBay, a researcher at STAR and assistant professor of education in the UVA School of Education and Human Development. “Valid screening and assessment tools in Spanish are severely lacking.”
In addition to challenges with access to screening and diagnostic services, there exist cultural influences in the screening and diagnostic progress, as well as language barriers, according to DuBay.
The shortage of Spanish and culturally sensitive screening tools is only one of several barriers that can significantly impact autism diagnosis. Others include expectations for child behaviors and development among Hispanic families, a negative stigma of discussing challenges with health or education professionals, cultural influences in the screening and diagnostic progress, and language barriers.
DuBay is adapting current autism screening tests for linguistic accuracy and cultural relevance to increase diagnostic accessibility for the Hispanic community. More than 25,000 Hispanic families in Virginia have been invited to participate in DuBay’s research since it started in February 2021.
For those families interested in participating in current research, the STAR initiative is currently enrolling parents or primary caregivers of children 8-16 months old who are native Spanish speakers and who live in the U.S. More information about the study is available on the AutismDRIVE website.
A Spanish-Speaking Family’s Autism Experience
In the latest issue of the STAR Monthly Newsletter, Isabel Huerta, a research specialist at STAR, interviewed a family to discuss the challenges they face, tips for getting resources for and raising their bilingual, multi-cultural child with autism. They offer these tips to families:
- Build Your Support Team of Professionals
Find a team that supports you and your child and understands the challenges you will face. It's incredibly helpful to have the support of several teachers and doctors over the years. Along the way, specialists can connect you to the best care for your child.
- Trust Your Instincts
Parents are the ones who are around their child the most; so listen to your instincts and trust your feelings. For us, we actually had concerns about our child from an early age, but we did not act on our instincts because we were told that her language delays were due to learning two languages.
- Be Attentive
Be present and communicate with your child: it's one of the best things parents can do to help language development. Often, parents can get sidetracked by the myriad of TV shows and technology that reportedly help children develop skills.
- Be Aware of Unique Cultural Challenges
Information on autism in Latin America is very limited, and it may not be up-to-date. Also, it came as a surprise to us, but raising a bilingual, multi-cultural child may actually contribute to delaying an autism diagnosis. In our culture, it is common for children to rely on their parents for everything and independence isn't always a focus, so the symptoms of autism may not be noticed early.
- Rely on Your Community
An important aspect of the Latino culture is support of our friends who became our family in this country. Our community likes to gather, socialize, cook, and be with children. Using our community as an extended family helped us expose our daughter to other children so that she had social role models.
Spanish-speakers can listen to their full interview below. More Spanish resources are also available on STAR’s AutismDRIVE website.