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

Editor's note: All interviews with parents were conducted in Spanish and translated to English.

When Alfonso Uribe was 2 years old, he started banging his head against a wall. Alarmed, his mother took him to a doctor. The doctor didn't speak Spanish, and Eulalia Uribe didn't speak English. There was no translator. The pediatrician told Uribe that nothing was wrong with her son. It would take another five years before Alfonso would finally be diagnosed with autism.

That's the kind of thing social worker Alberto Serpas sees every day.

There was the father who abandoned his family when he learned his 13-year-old daughter had autism, leaving his stay-at-home wife and two kids to fend for themselves. The wife was undocumented, with little education or money, and no car. Now she works a series of low-paying jobs at fast-food restaurants and supermarkets to put food on the table. She's been fired repeatedly because she often has to leave work early to take her daughter to therapy. When she's not working, she's on the phone with the state or her daughter's school, attempting to fight for services in a language she doesn't speak.

Yet another family didn't realize their son could go to school. He had severe autism — the ear-clutching, rocking-back-and-forth variety — but the family didn't know it. They just knew that he couldn't function outside the home. So they kept him inside. They had no health insurance, so he never got a referral to anyone who could offer a diagnosis. It would be many years before anyone who could help would even learn that the child existed.

There's a saying that if you've met one child with autism, you've met one child with autism. That's because autism isn't a clear-cut, easily identifiable disability — it's a spectrum disorder. Not all children will have the same symptoms, and those who do will exhibit them to different degrees.

The one trait that all children on the spectrum share is a difficulty communicating and interacting socially with others.

Coming to terms with a diagnosis of autism can be challenging for any family. There is no cure (the issue of whether autism is a "disorder" to be "cured" at all is extremely controversial). The best families can hope for their children is to provide them with intervention and therapy. The earlier, the better.

Learning how to navigate the bureaucratic world of disability services and special education in Arizona — the mountains of paperwork, referrals, insurance issues, doctor visits, and qualifying exams — is enough to drive a parent mad.

Now try navigating that bureaucracy in a foreign land, in a language that you don't understand, without the cultural knowledge it often takes to understand unfamiliar medical and educational systems, lacking health insurance — possibly even citizenship status — on a minimal income and with no car.

These are just a few of the common obstacles that lower-income, Spanish-speaking immigrant families face when attempting to care for children with autism, says Serpas, a social worker who volunteers with GALA, a Phoenix-based, Spanish-speaking support group for the families of children with autism.

"It's heartbreaking," he says. "And inspirational. These families love their children so much. They'll do anything to help them. But there are so many harsh obstacles. It's tremendously difficult."

A tiny woman with bright eyes and a brilliant smile, Eulalia Uribe sits daintily on the edge of a beige couch next to her husband, Alfonso, in their small Mesa apartment. In a room directly off the kitchen, three of their four children watch The Disney Channel and giggle.

Aelin, a shy girl with long black hair, sits apart in the corner, intently playing with a Bratz doll. She doesn't look up to see what the other children are laughing at, nor does she seem to care whether they play with her.

The Uribes say that is just how she is. Aelin has autism — as does her older brother, Alfonso. And although the Uribes noticed differences with both of them when they were quite small, Alfonso, the oldest (now 12), wasn't diagnosed until he was 7. Aelin was diagnosed a few months ago — at the age of 11.

Alfonso and Aelin Uribe are victims of a nearly silent perfect storm.

The United States is in the midst of an autism epidemic. Twenty years ago, only one child in 100,000 was diagnosed with autism. That number's jumped to one in 150, according to a 2007 study from the Centers for Disease Control.

Twenty years ago, the only exposure most people had to autism was through Dustin Hoffman's role in the movie Rain Main. Now, autism has broken into popular culture. Bill Gates, the richest man alive, has been informally diagnosed with it. Some online autism forums claim Vincent van Gogh and Leonardo da Vinci. There are bestselling memoirs and movies. Celebrity Jenny McCarthy, whose son was diagnosed with autism, debates the causes and treatments with doctors on primetime television.

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Malia Politzer
Contact: Malia Politzer