Barriers to autism screening adversely impact Latinos

Study finds disparities in care for Latino-American children with autism, citing multiple social obstacles

Participants of an annual walk in support of autism research and awareness pose with their sign in Pasadena, Calif.
Andrew D. Bernstein/Autism Speaks/Getty Images

When Alex Larios suddenly stopped talking, his mother, Susie Larios, a 33-year-old Mexican immigrant who moved to California as a child, knew something was wrong. Her 1-year-old son had difficulties with language before, but this time was different, she said. After extensive online research of his symptoms turned up the word autism several times, she knew she had found the answer to his odd behavior.

Alex is among the 1 percent of American children who are diagnosed with autism. He is also part of a community that experiences high barriers to diagnosis. Only 10 percent of pediatricians screen for an autism spectrum disorder (ASD) and other developmental disorders in Spanish, the primary language of 23 million Americans, a new study found, with three-quarters of surveyed pediatricians citing access, communication or cultural barriers as obstacles to a timely diagnosis.

Because of these barriers, Latino children may be diagnosed with ASD around 2.5 years later than white children, a timeframe during which lifelong developmental setbacks are incurred, the study published in the journal Pediatrics revealed.

Early diagnosis is "crucial" to "teach children to be more functional with autism," Katherine Zuckerman, assistant professor of pediatrics at Oregon Health and Science University and lead author of the study, told Al Jazeera.

"We were surprised to learn how low the screening rates are among Latino children and how difficult primary care pediatricians report it is to screen Latino children for ASDs," she said. "We hope this data will help inform future interventions to reduce racial and ethnic differences in ASD care."

Early diagnoses would also significantly "reduce family stress and save costs," Zuckerman said, citing a total cost of more than $1 million to society per autistic child.

Autism, a developmental disorder whose primary symptoms include speech difficulties and a failure to grasp social communication, becomes even more difficult to recognize for pediatricians without the necessary cultural skills.

"The first thing to understand is that autism is very difficult to diagnose, period. The symptoms are subtle, they could be considered within the extremes of normal behavior," Zuckerman said. But not speaking Spanish makes it "doubly difficult," because a lot of screenings by interpreters happen over the phone, making it tough to assess how the child is using language or how he interacts with his parents.

Maritza Cobian, a former behavioral therapist for children with autism and research assistant at the Oregon Health and Science University, told Al Jazeera that her command of Spanish helped her be a better therapist.

"We were able to better connect with family members of the children diagnosed with autism, allowing [us] to build a better rapport and to explain the benefit behind the services we were providing," she said. "Getting the parents on board, I cannot stress enough how important that is."

"What we really need as a society is to train more specialists that are bilingual and are comfortable in this community because there is a huge evident need."

In addition, doctors mentioned limited access to mental-health specialists as a huge barrier to a timely autism diagnosis of Latino children, who are more likely to be uninsured or underinsured than other children.

Dr. Susan Hyman, a professor of pediatrics at the University of Rochester and chair of the autism subcommittee of the American Association of Pediatrics (AAP), told Al Jazeera that the numbers are a "major concern" for the organization and that it strives to close the health-care disparities for children with ASD.

"The American Association of Pediatricians does recommend routine developmental screening and autism specific screening with ongoing surveillance. The AAP and state chapters have been actively working to educate providers in appropriate autism specific screening use in the context of primary care," she wrote in an email.

"What we really need as a society is to train more specialists that are bilingual and are comfortable in this community because there is a huge evident need," Zuckerman said, adding that there is a general shortage of specialists "for all children for all races and ethnicities in the U.S."

Social stigma

But doctors said other factors, such as Latino parents' more limited knowledge of autism and the social stigma that would surround it in Latino communities, could also prevent Latino children from being diagnosed in time.

The "culture is so different: my whole family was in denial in terms of what was going on with Alex," Larios said. "I know my family mean well, but I felt like I was fighting and fighting."

Exasperated by the lack of understanding within her community, Larios remembers asking her mother, who grew up in Mexico, "What do you do with people with special needs?"

"They just stay at home," her mother answered. Larios blamed a defeatist attitude for her community's seeming indifference. "They learned to accept what God gave them," and she added that only people with money are able to give children with autism extra services.

"But why can't we give services to them so we can give the best...quality of life?"

To raise awareness among Latino parents and improve available services, researchers of the study suggested increasing the availability of "culturally appropriate, bilingual parent-oriented ASD materials" and cited the Centers for Disease Control's "Learn the Signs. Act Early" campaign, an online assessment tool, as an example.

Closing the information gap

The study also cited research that Latino parents have lower average health literacy -- a measure assessing the degree to which individuals can understand basic health information and obtain services to make appropriate decisions -- and have less access to ASD-specific information.  

Manuela McDonough, a program manager at the Institute of Hispanic Health at the National Council of La Raza, an advocacy organization, told Al Jazeera that educational barriers and limited English proficiency are mainly to blame for these statistics. She also mentioned a lower level of trust in government institutions and a reluctance to seek out the services for which they might be eligible for fear of being deported. 

Larios, who is bilingual, confirmed that educational barriers prevent some people in the Latino community from finding the information they need. "They just can't get online and do a search," she said, referring to a lack of information technology and language skills that force many Latin Americans to rely on third-party information.

"Even translated, (medical) documents are not accurate," she said.

Larios has devoted her life to closing the information gap.

At Salvador's Bakery, her mother's Mexican pastry shop in Salem, Ore., she gives tax advice to customers who have children with autism and have questions about applying for disability benefits. "Do you know that you can get a tax break on your income taxes?" she would ask at the counter.

Larios is also thinking of putting a sign on the door, a blue puzzle piece, reflecting the mystery and complexity of autism, to welcome families affected by the disorder into her restaurant. In April, the staff wears blue in honor of autism-awareness month, she says.

At the bakery, no access, communication or cultural barriers exist.

"These families feel welcomed. They shouldn't feel shame; everything is going to be okay. They can eat in peace," she said.

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