By Marina Sarris, web content administrator for the MCDD’s Autism Research and Engagement Core
This article was first published by SPARK, the largest study of autism, on February 9, 2022, and featured an interview with Mirian Ofonedu, PhD, MCDD’s training director.
Mirian E. Ofonedu, PhD, LCSW-C, has worked with Black families for years as a researcher, social worker, psychologist and educator. She knows that they often face barriers to getting a diagnosis and treatment for autism and other health conditions. They also participate in research studies less often than white families.
She also knows something else: Black parents may first take concerns about a child’s development or behavior to a trusted member of their community, often a pastor, priest, imam or other faith leader.
That is why, she says, working with religious leaders can help reduce racial disparities in healthcare and research.
“Faith leaders play a critical role in supporting families and helping to dismantle the stigma surrounding disability, autism and mental illness. They often serve as a bridge during changes in a family’s life, providing a safe space to navigate challenging situations,” Dr. Ofonedu says. She is training director of the Maryland Center for Developmental Disabilities at Kennedy Krieger Institute.
Dr. Ofonedu discussed “Faith, Disability, Mental Health, and Research: Engaging Black People of African Descent in the Dialogue” at a free SPARK webinar on February 23, 2022. Dr. Ofonedu is interested in mental illness and behavior concerns, which affect people with autism at higher rates than others.
The Role of Faith Communities in Promoting Health
For many years, faith communities have been promoting awareness and screenings for cancer, heart disease, preterm birth and other medical problems.
Several years ago, the National Black Church Initiative (NBCI) added autism to its list of health initiatives for its 150,000 member congregations in the United States.
“There are immense challenges in dealing with autism in the African American community,” says Rev. Anthony Evans, president of the NBCI. Children may be misdiagnosed, and parents may not be aware of what autism services are available or may have trouble getting those services, he says.
Black and Hispanic children have historically been diagnosed at older ages, and often received fewer services for autism, than white children, according to research studies.
One research paper summed up the situation in its first sentence: “Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old.”1
As some research shows, children from low-income families, regardless of race, also receive fewer school services for their autism.2
Barriers to Receiving a Diagnosis and Intervention
Barriers to receiving healthcare may include insurance, transportation, bias and misunderstandings. Dr. Ofonedu says that some families have trouble finding healthcare providers who accept their child’s insurance, especially if it’s medical assistance (Medicaid). Children, people with disabilities and people with low income may qualify for Medicaid.
Some families may have trouble getting to clinics during regular office hours due to their work schedules. Others face misunderstandings caused by inadequate “cultural competency” on the part of doctors, psychologists or educators, she says.
Cultural competency generally means the ability to understand and work with people from cultures that are different from your own.3 How we communicate with others may be influenced by our culture, upbringing and histories.
With adequate training, doctors, nurses, counselors and researchers could learn better ways to interact with families who have different backgrounds and beliefs, Dr. Ofonedu says. Providers should respect Black families’ faith traditions and cultural values, and understand their history, she says. For example, a doctor may be better able to address Black parents’ concerns about an autism diagnosis if the doctor understands their history of discrimination by schools, hospitals and other institutions.
The Legacy of the Tuskegee Study
Black families may also face barriers to participating in research. One problem is a distrust of medical research based on historical events, such as the Tuskegee Study, as well as current experiences with healthcare systems.4
In the Tuskegee Study, which ran from 1932 to 1972, a U.S. government agency withheld treatment for syphilis from poor Black men in Alabama. Many of the men died from the disease or its complications. Public outrage about the Tuskegee Study led to important changes in how medical research is done and how research participants are protected.
“Black people’s historical experiences with research—for example, the Tuskegee study—while hurtful, provide a context for researchers to carefully reframe their approach and engage in ethical and just research at all times,” Dr. Ofonedu says.
To build trust, some researchers say, it is important to work with community organizations to reduce barriers to research participation. For example, some clinics working with the SPARK autism study have formed partnerships with groups that represent Black, Latino and Asian American families.
Faith leaders can help, Dr. Ofonedu says. “If you’re trying to go into a Black community to conduct research, for example, a faith leader, who is trusted by the community and more connected to them, will have a better way of explaining things to community members than you, the researcher, who will be viewed as an outsider,” she says.
Communities as Partners in Research
But it is not enough to just contact religious leaders, Dr. Ofonedu says. Researchers need to “really partner” with the community. Some researchers have done “helicopter research”: They swoop into a community, collect data and swoop out, never to be seen again, she says. Instead, researchers should listen and respond to people’s needs and input about the study, give updates and share the study’s results with them.
Rev. Evans, of the National Black Church Initiative, agrees. “We want to be equal partners,” he says. “We have the expertise and the wherewithal to make that happen.” The NBCI is planning to announce a research initiative in 2022, he says.
Researchers and doctors cannot ask faith leaders to participate in health outreach without providing them with the tools to do so, Dr. Ofonedu says. That may start with training faith leaders and community members about the diagnoses and treatment of autism, developmental conditions and mental illness. Faith leaders should also be provided with information about local agencies, clinics and doctors that people can contact for services, she says.
And it is important for people to be able to receive those services. “How do we put measures in place to open up resources and services to those who may not necessarily have the means to access them?” she asks. “We need to leave no stone unturned.”
Interested in joining SPARK? Here’s what you should know.
Resources
SPARK articles and webinars on mood disorders and other conditions
SPARK articles and webinars on racial and ethnic diversity and disparities
References
1Dababnah S. et al. Intellect. Dev. Disabil. 56, 321-336 (2018) PubMed
2Sturm A. et al. Autism Res. 14, 1621-1632 (2021) PubMed
3American Psychological Association. https://www.apa.org/monitor/2015/03/cultural-competence. Accessed Jan. 24, 2022.
4Scharff D.P. et al. J. Health Care Poor Underserved 21, 879-897 (2010) PubMed
