By Ken Liebeskind
When Yanira Rodriguez began to realize her son might be autistic, he had yet to celebrate his second birthday. Rodriguez, who is from New Britain, Connecticut, knows the struggle all parents of autistic children face through raising her son Ethan, who is now 6.
“Between 15 and 18 months he did things other children don’t do, like rocking and banging his head on the floor,” she said.
Now more than ever, Latinos can relate to her experience as larger numbers of Latino children are being diagnosed with autism each year, according to recent data from the Centers for Disease Control (CDC). According to data from the CDC, autism spectrum disorders are up 78 percent from 2007, and have increased 110 percent in Latino children. One in every 88 children is currently identified as autistic.
“We think the rates are rising because diagnoses were previously missed in the Latino community and are now starting to catch up,” said Sarabeth Broder-Fingert, MD, of Mass General Hospital for Children and the Center for Child and Adolescent Health Research and Policy at Massachusetts General Hospital (MGH). “Latino parents may now be advocating for their children on their own.”
She said a higher number of Latino children could have been diagnosed in the past but the child’s school may not have referred the family to a doctor, or the family may not have gone to the doctor.
“In speaking with other doctors, we feel that Latino patients don’t seek out medical care,” she said. “That may be denial of a problem, or because of cultural differences.”
Even if the family does go to a doctor, a proper diagnosis may not be given because of a language barrier in communicating the symptoms, she added.
“There may be an issue between the doctor and the Latino who doesn’t know how to ask the right questions,” Broder-Fingert said.
Another issue, she said, is that once Latino children are diagnosed, parents are not accessing the services that can help.
Broder-Fingert was the lead author of a study called “Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism,” published in the July 2013 issue of Pediatrics. It compared use of subspecialty providers and procedures for more than 3,600 patients with autism who were seen at Massachusetts General Hospital.
“We know that many children with autism have gastrointestinal or sleep issues, and if those problems are not being diagnosed or treated, they can lead to additional behavior difficulties that can inhibit development,” Broder-Fingert, a clinical fellow in pediatrics at Harvard Medical School, said in the report. “Combining the challenges of accessing specialty services for any child with autism, regardless of race or ethnicity, with the recognized difficulties minority communities have accessing medical care in general can lead to these major disparities in the use of services.”
She wonders if cultural issues are glossing over what’s really happening with the disparities, however.
“We need to understand what we can do to provide equal access,” Broder-Fingert said. “We need a two-pronged approach, one to help the doctors and the other to empower the patients.”
The language barrier is a major hurdle. “Resources that are available to children with autism may not be transferable to those who only speak or read Spanish,” she said.
Unlike what some Latino parents of autistic children face, Rodriquez was fortunate in being referred to the proper professionals for her son and gaining support from doctors, schools and other programs.
When Rodriguez brought her son to his doctor, her family was referred to a program that provides free evaluations for children that is run by the Connecticut Department of Development Services.
“They came to the house until he was 2-1/2 and did an educational diagnosis and speech therapy,” she said. “I saw some improvements but I wanted a medical diagnosis as well as an educational diagnosis.”
Doctors at the Connecticut Children’s Medical Center in Hartford diagnosed Ethan with autism and began suggesting therapy treatments. After the first treatment facility told her they could no longer serve him for his behavioral issues, she found the Innovative Autism Network, where Ethan now goes three times a week for speech and occupational therapy.
Thanks to his early diagnosis and therapy sessions, Ethan now attends a mainstream school in New Britain for kindergarten.
For more information, visit the American Academy of Pediatrics’ website www.healthychildren.org/English or www.healthychildren.org/Spanish.
Additional reporting and editing contributed to this story by Barbara Thomas.
(Photo by hepingting via Flickr)
By Ken Liebeskind