Lost in Translation: Autism Is Tough to Diagnose and Treat – and for Immigrant Families, It Can Be Impossible

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Daniel Kessler, a developmental pediatrician with the Arizona Child Studies Center at Saint Joseph's Hospital in Phoenix says that despite the growing number of autism cases, many pediatricians are missing autism in small children. When parents tell doctors about a child's unusual behavior, many pediatricians chalk it up to the parents' over-protectiveness.

"Pediatricians say a variety of things: 'Don't worry, he's a boy, we'll watch this and see how it goes; it's because he has three older sisters, and they always speak for him,'" says Kessler. "We hear this continuously from both English and Spanish-speaking families."

But there is a difference. For Anglo families eligible for Medicaid, it usually takes three or four doctor's visits to get a diagnosis for their children, according to a 2002 article in the Journal of the American Academy of Child and Adolescent Psychiatry.

For the Latino families studied, it took more than eight.

The tragic part is that many of these families do notice unusual behavior in their children when they are young — as early as 12 months, in some cases. These are behaviors that can't be mistaken for anything typical. Children who repeatedly beat their own heads against a wall, who scream inconsolably, clutching their eyes and ears because they are terrified of flies, loud noises, or light. They won't allow themselves to be held or touched by anyone but their parents. As they get older, some won't talk at all.

If these children had English-speaking parents, they'd be more likely to get early intervention. Such clear-cut symptoms shouldn't be falling through the cracks, but they are.

Kessler points his finger at the language barrier.

"In a primary-care office, you're already dealing with a fairly quick visit," says Kessler. "If there are language issues and you're not really communicating you might miss their concerns."

Even having a translator isn't a sure bet. Sanchez says that after years of fighting with Rosillo's school to get her daughter the services she desperately needs, she's attempting to learn English, in part, because she's had so many experiences with bad translators. Often, she complains, they don't repeat what she says. Sometimes translators drop the last sentence — other times they change it entirely.

And sometimes there aren't trained translators available at all. Doctors and parents are forced to communicate through one of the families' other children (imagine how your 7-year-old would explain complicated medical symptoms). Or they use the janitor, or the woman at the front desk.

For the latter, "Spanish might not even be their native language — usually they don't know all the scientific words," says Alberto Serpas, the social worker. "A lot gets lost in translation."

Then there's the insurance issue. About a third of Latino families in the United States don't have insurance. Many go to free clinics, and take their children to doctors only in emergencies. This is an even bigger problem in rural areas and border towns, where there may only be one or two doctors available.

Because these children don't have primary-care physicians, there isn't always someone parents can bring their concerns to — and many parents don't think they need to. Autism isn't like other disorders. Unlike Down syndrome, which results from chromosomal abnormalities, autism isn't correlated with distinctive physical characteristics. Many parents figure that it's just a phase their child will grow out of.

Even so, language issues — even combined with insurance problems — aren't enough to explain the gap. There's something else going on here.

Part of the barrier has to do with culture — and with class. Lower-income immigrant families aren't always fighting for their children. Some don't know that they should. Others simply don't know how.

Like the Uribes. Originally from the Mexican state of Hidalgo, the family moved to Phoenix in 1994. A petite, pleasant woman, Eulalia cleans houses. Her husband, Alfonso, a stocky man with neatly trimmed black hair and a goatee, is a day laborer.

As a baby, Alfonso — the Uribes' first child — seemed normal. A baby with big brown eyes, he seemed to enjoy being held and kissed by his parents. When he started talking and walking later than other children his age, his mother figured he was just a late bloomer.

When, at 2, her son began to repeatedly beat his head against the wall, the Uribes took him to the doctor immediately. Eulalia says that the doctor told her nothing was wrong with her son. There was no translator, so she wasn't able to clearly explain her concerns. Still, when the doctor said Alfonso was fine, she didn't question it.

Serpas says this happens a lot.

"Many of these parents are people with very humble backgrounds from rural areas," explains Serpas. "What the doctors or teachers say . . . [The parents] don't feel they are anyone to contradict them, so they don't always seek other sources of information."

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Malia Politzer
Contact: Malia Politzer