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Black Families in SPARK Reveal Barriers to Autism Help
Marina Sarris
Date Published: February 8, 2024
Black families seeking help for an autistic child may face barriers that include racism, stigma, cultural differences, a lack of information, and limited access to care, according to two studies of Black participants in the SPARK autism project.
The research was done by two groups of researchers who worked independently. They recruited participants from among the 21,000 Black and African American members of SPARK, the largest study of autism.
The first study found that 28 percent of Black, African American, and multiracial families said that their race or ethnicity affected their experience of getting an autism diagnosis for their child. Some reported cultural differences with healthcare providers of a different race. Twenty-two percent gave examples of racism, such as professionals who appeared to be “passing off behaviors that Black children display as ‘a Black thing,’ assuming families wanted to ‘use [their children] to gain money from the government,’ or ‘expect[ing] Black kids to naturally be wilder and have behavior problems.'”1
This study included 400 parents of young autistic children. It was led by researchers at Vanderbilt University Medical Center and Meharry Medical College in Tennessee.
Some families told researchers that autism evaluations lacked toys, activities, or other things that were relevant to their culture. This caused one mother to doubt her son’s diagnosis. “We were in doubt about whether or not he truly had autism for a while because we felt the activities used were not ones he engaged in at home and hence [he] may have been unfairly disadvantaged,” she said.1
Others said that doctors did not listen to their concerns. “I believe if I was a white parent when I brought my concerns to the pediatrician, he would have sent my son for testing sooner,” one parent said.1
The Importance of Studying Black Families of Autistic Children
Understanding the experiences of Black families in healthcare offices and schools is important to reducing the disparities they face, some researchers say. Black and Hispanic children have historically been diagnosed less often, and at older ages, than white children. They often receive fewer therapies and services for autism, according to research studies.
“How do we as healthcare providers think about approaching autism care in a way that feels welcoming and inclusive, and makes all families feel listened to and understood as they talk about what’s worrying them?” asks Vanderbilt clinical psychologist Amy S. Weitlauf, Ph.D., a co-investigator of the Vanderbilt-Meharry study.
The study pointed to cultural differences and stigma as barriers. Some parents were concerned about the stigma their child would face as a member of two minority groups ─ Black and autistic. One mother said that “for Black parents it’s another label on our child, Black and autistic etc….”1
Some parents said that they felt guilty because of their child’s behavior. “I thought I just had to be … stricter on him. In our culture if a child misbehaves it is because the mother is not being strict enough.”1
The Need for Autism Information
A lack of autism information also posed a barrier. One in 10 parents said that they didn’t pursue an autism diagnosis because they did not know about autism. “I never knew about autism growing up until my child was diagnosed,” one mother said. Autism information “isn’t very public in the Black community,” according to another parent. A mother suggested that doctors let parents know that “autism is relevant to the Black community.”1
A separate study by researchers at University of Arkansas found similar concerns among Black families seeking a diagnosis and autism services. Those researchers recruited 101 Black parents in SPARK to take online surveys, and also interviewed 20 of them.
Some parents had heard misinformation about autism, such as autism is caused by bad parenting or vaccines, according to the Arkansas study.2 Research shows that those things do not cause autism.
Many of the parents interviewed by the Arkansas researchers said that denial and fear created barriers. One mother said she tried everything to “fix” her son. “I took him back to that same clinic a year later, and I wanted them to test him again, and for them to tell me he was all better. And they tested him again, and they told me that he had made some progress, but he still had autism.”2
Most of the parents also said that they had to advocate more for their children than white parents did. One mother said, “we literally have white counterparts that we know whose kids are autistic too, and we’ll just ask questions and they don’t have to do the same thing … and that’s when you realize it is race.”2
“In our study, caregivers alluded to not having as much access to resources as their white counterparts, and being treated with less dignity and respect throughout the process by professionals who were supposed to be supporting them,” says researcher Harlee Onovbiona, a Ph.D. candidate in clinical psychology at University of Arkansas. She worked on the study with Arkansas Assistant Professor Lauren B. Quetsch, Ph.D.
What SPARK Families Say Would Help
In both studies, SPARK participants offered ideas for how professionals could make it easier for Black families to receive an autism diagnosis and therapies.
Parents in the University of Arkansas study recommended that healthcare and service providers show more “humility, compassion, and understanding” and receive more training on autism. They also wanted more support for families after a diagnosis, more autism professionals who are Black, greater parent access to trainings, and more support groups for Black parents.
“I think we do need more of our own support groups because a lot of times when you get the diagnosis, your family isn’t gonna rally around you,” one Black parent said.2
In the Vanderbilt-Meharry study, 51 percent of the 400 parents said that it would be helpful to receive evaluations faster. More than 40 percent recommended that professionals listen to parents’ concerns about their child earlier.
About a third of the parents wanted professionals to tell them sooner about their own developmental concerns about the child. Some parents recommended seminars and other programs to educate families about the signs of autism and the steps to take if they believe their child might have it.1
“We researchers can start to listen better and think about modifying our approaches, educational systems, or screening procedures based upon the recommendations that families make,” says Weitlauf, the Vanderbilt researcher.
Twenty-one percent of the families said that their communities needed more affordable and accessible interventions for autism, including Applied Behavior Analysis (ABA). One parent said, “There are ABA companies all over….There are zero in communities of color.”
Another parent added, “There are few resources in the typical Black neighborhoods. It’s sad.”1
Interested in joining SPARK? Here’s what you should know. Learn about diversity, equity, and inclusion at SPARK.