Date Revised: July 21, 2021
Many families wonder whether their child with autism is receiving the right number or types of school and healthcare services. According to research, some children with autism receive fewer services than others, and those differences are often associated with their race, ethnicity, or family income.
A 2020 study found that Black and Hispanic children with autism were less likely to see some medical specialists and to undergo certain procedures than white children.1 These procedures included neuropsychiatric testing, an electroencephalogram (EEG) for seizures, psychiatric evaluations, sleep studies, and developmental screenings.1 Sleep problems, seizure disorders, and some psychiatric conditions are more common in people who have autism than in the general population. Neuropsychiatric evaluations can be used to find a child’s learning problems.
Hispanic and Asian American children received less speech therapy and occupational therapy than white children who have autism, according to the study, which was published in the journal Pediatrics.1 Hispanic children with autism were less likely to have an Individualized Education Program (IEP) at school compared to non-Hispanic children of all races.1 A child needs an IEP to receive special education and therapies for autism in a public school.
“Our service system seems to operate less well in areas where the population is predominantly people of color,” says Kathryn A. Smith, RN, MN, DrPh. Smith, the lead researcher in the study, is an associate professor at the University of Southern California and a nurse care manager at Children’s Hospital Los Angeles. Her team looked at 11 U.S. studies about services for children with autism. Transportation and childcare problems, and language barriers, may affect a family’s access to services, according to the study report.
Smith’s study also found service differences that were associated with family income. Children from middle- and high-income families were more likely to be enrolled in applied behavior analysis (ABA) therapy for autism, and occupational therapy (OT), than children from lower income families.1 ABA and OT may be expensive, and some medical insurance plans do not cover these services for autism.
Healthcare disparities based on race, ethnicity, and income are not unique to autism, says Brian A. Boyd, Ph.D., director of the Juniper Gardens Children’s Project and associate professor of applied behavioral science at the University of Kansas. “The color of your skin and your income in this country are associated with healthcare outcomes and healthcare access,” says Boyd, who will discuss implicit racial biases at a SPARK webinar on July 28. There are many reasons for this, including a history of mistreatment, he says. “We have to remember that historically marginalized groups are sometimes rightfully distrustful of medical health providers because of a history of mistreatment.”
How do Schools Distribute Autism Services?
Public schools in the United States provide many free special education services for students with disabilities. These may include speech, occupational, behavioral, and physical therapies. A student’s medical insurance, transportation difficulties, and family income do not affect school services.
A 2021 study of IEP records in a large school district also found disparities in how autism services were distributed. Black, Hispanic, Asian American, and low-income students received fewer school-based services for autism than white and higher-income autistic children.2
For that study, researchers examined six years of IEP records from 18,000 autistic students in a diverse school district in Southern California.
“Among autistic students only, white students are more likely to receive more special education services than every other racial and ethnic group,” says the lead researcher, Alexandra Sturm, Ph.D., assistant professor of psychology at Loyola Marymount University.
Hispanic and Latino children received the fewest special education services for autism, compared with autistic children of other races and ethnicities.
Fifty-eight percent of the students who receive IEP services for autism are Hispanic or Latino, but students of these ethnicities make up 75 percent of the school district, Sturm says. “We would hope that those percentages would be equal because autism prevalence should not vary by racial or ethnic group. However, we know based on prior studies that detection of autism does, as well as timing of diagnosis,” she says.
According to a U.S. research report from 2020, Hispanic children are less likely to be diagnosed with autism than white or Black children who are not Hispanic. Also, Black and Hispanic children are evaluated for autism later than white children, according to the report from the U.S. Centers for Disease Control and Prevention (CDC).3
Inadequate access to healthcare, stigma, and having a primary language other than English are barriers to identifying children with autism. “These barriers mean that certain groups of children may not be getting the services they need to reach their full potential,” according to the CDC report.3
Hispanic students who come from non-English speaking families may face more challenges. Schools do not want to mislabel students as needing special education if their learning problems are caused by a language barrier. So, schools may wait to evaluate those children for a disability until they have had time to learn English, explains Karolyn Maurer, a special education director who is also a graduate student in special education at UCLA and California State University Los Angeles.
But for children who do have a disability, that approach may delay special education. “What might happen is a student does acquire English language skills, but the student still needs special education services. Unfortunately, the student then has missed out on years of services while they’re in classrooms acquiring English,” she says.
Does Autism Severity Account for Service Differences?
Students with more severe autism symptoms could be expected to receive more school services to address their needs. But students of all races are equally likely to have severe symptoms, Sturm’s team says. So, autism severity probably does not explain the differences in services they found.
Like other studies, Sturm’s team found a link between family income and autism services. They looked at autistic children from lower income households who qualified for free and reduced-price lunches at school. Regardless of their race or ethnicity, those students received fewer special education services than higher income students. That was true even when the lower income students attended schools in more affluent neighborhoods.2
“We can’t put a student in a higher income school district and guarantee that the student will receive more services,” Sturm says. “It still really comes down to a family’s proficiency in navigating the special education eligibility and service process.”
Navigating the IEP Process
Some parents may be better able to influence the process by which schools create an IEP and assign special education services to a child.
Parents who are more educated, who have higher incomes, or who have more social connections may be more likely to learn about, and successfully advocate for, special education services, some researchers say. Those parents may have contacts in the school system, may network with other families to find out what services are available, and may understand the special education process. “That could all be categorized as social capital,” explains Fernanda Castellon, a UCLA graduate student who is researching autistic students who are also English Learners (EL). EL students, whose families speak another language, are learning English.
Parents with lower incomes, and parents who are not white, may have less social capital. Some parents “do not have the knowledge of the special education process that they need to successfully advocate for their children,” Castellon says. “Parents who are not English speakers and who are first-generation immigrants may experience additional barriers, including legal, transportation, and job security issues, among many others.”
Castellon has an autistic brother, and her mother, an immigrant with limited English, experienced challenges with the school system. Looking back, Castellon says, her mother struggled to help set goals for her brother during IEP meetings. “Are schools including parents?” Castellon asks. “Are we empowering parents to gain social capital so they can move forward, for their children?”
Sturm says parent and advocacy networks could help families to better navigate the special education system and advocate for services.
Teachers and school administrators should also be given the tools and resources to support those families, Maurer says. “What are the changes that we can make to ensure that we are supporting autistic students who might not have social capital, and what sort of support can we start giving parents to make sure they have the knowledge and training to be the advocates for their children that they want to be?”
- Read Autism Advocacy Advice for Families of Color for helpful tips from SPARK.
- To learn more about IEPs, watch a SPARK webinar on Creating Meaningful Individual Education Plans.
- Find free information, trainings, and resources about special education, advocacy, and disabilities in your state at the Parent Center Hub, the website of the Center for Parent Information and Resources.
- A state Protection and Advocacy Systems agency can provide free legal help and advocacy for people with disabilities. To find the agency in your state or U.S. territory, visit NDRN.org.
- Watch a SPARK webinar, “Do Implicit Racial Biases Matter in Autism?,” with Brian A. Boyd, Ph.D., director of the Juniper Gardens Children’s Project and associate professor of applied behavioral science at the University of Kansas.
- Smith K.A. et al. Pediatrics 145, S35-S46 (2020) PubMed
- Sturm A. et al. Autism Res. Epub ahead of print (2021) PubMed
- Autism and Developmental Disabilities Monitoring Network Community Report on Autism (2020)