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

Page 2 of 7

But chances are you still won't be seeing a Lifetime special on a Latino family's struggle with the disability.

That's because despite the fact that Latinos make up the fastest-growing minority population in the United States, Latino children are half as likely to be identified and served in the education system as Anglo children, according to 2007 U.S. Department of Education statistics. And most are identified only after they're enrolled in school — long after the critical window for early intervention has closed.

It's a national problem. One California researcher who published a study in the 2002 Journal of Autism and Developmental Disorders actually thought Latinos might be less at risk for autism than other kids. Her data showed Latinos to be the least likely of any ethnic group to use Department of Developmental Services in the state of California. And then there's a 2004 CDC report (based on self-reporting from parents) that found autism rates for Latinos to be roughly half that of non-Latinos.

But as it turns out, Latinos aren't less at risk for autism at all. Most parents simply don't realize their children are autistic, so it often goes overlooked.

This story isn't necessarily about all Latinos — it's about lower-income Spanish-speaking immigrant parents of children with autism. These parents face a double whammy when it comes to communication. Because of their autism, the children often can't express their needs. Parents need to become their children's advocates and translators. But for parents unable to speak English or navigate the medical system, getting adequate help can seem next to impossible.

There's also the fear factor — in the past two years, Phoenix has been the target of immigration sweeps by the Maricopa County Sheriff's Office. Now, social workers report that many parents living in Arizona illegally are too scared to seek the services their citizen children so desperately require.

Then there are the cultural complications. According to Serpas, some families mistake autism for a mental disorder, which is often stigmatized. Many of the social workers, therapists, and doctors interviewed for this story note that fathers tend to have particular trouble accepting the diagnosis of their sons, who are four times more likely to have autism than daughters. Less-sensitive dads see their sons' disabilities as reflections upon themselves — some even abandon their families, experts say.

"When you have a child that is not what they consider to be 'normal' they get outcast by family members and society," says Dilcia Yanez, a social worker and GALA volunteer whose clients are all Spanish-speaking immigrants. "It comes from their culture. If you have someone with mental retardation, others might feel that the whole family is the same."

Because Phoenix is home to three Spanish-speaking support groups for the parents of children with autism — Grupo de Apoyo para Latinos con Autismo (GALA), Gane, and another through the Southwest Autism Research and Resource Center (SARRC) — the situation here has improved over the past seven years. But many families are still falling through the cracks.

"Incidence of autism is on the rise, and the Latino population is growing faster than any population in the United States," says Emily Iland, a California-based education consultant with a masters in special education focused on Latino issues in autism. She's also the author of the bilingual reference book Autism A to Z. "Yet they have half the chance of getting recognized as other children. It's a crisis."

And it's not letting up.

Celia Sanchez and her family live in Mesa. All three of her children have been diagnosed with autism. A friendly woman with a ready laugh, she's eager to talk about the progress they've made — especially her middle son, Pedro. As a baby, his symptoms were severe. He cried constantly and wouldn't allow himself to be picked up. He'd bang his head against a wall, refuse food, and rip at his clothes. Now he's a chatty boy of 14 who loves Pokémon cards and joking around. And he's so smart, she says.

But when she talks about her oldest daughter, Rosillo, 15, Celia's enthusiasm wanes. There's a long silence, and she sighs.

"Rosillo . . .," she says. "I should have seen it earlier."

Perhaps because Pedro's autism is much more severe than Rosillo's, he was diagnosed early, at the age of 2, and started receiving therapy almost immediately. Sanchez just assumed that Rosillo was quiet. And she was so busy with Pedro that it was easy to miss the milder symptoms in her daughter. But when Rosillo never learned to talk, Sanchez became worried.

Finally, Rosillo was diagnosed with autism at 7. Her doctors and teachers all missed it for years — and so did Sanchez. She was devastated. "I feel responsible," she says.

KEEP PHOENIX NEW TIMES FREE... Since we started Phoenix New Times, it has been defined as the free, independent voice of Phoenix, and we'd like to keep it that way. With local media under siege, it's more important than ever for us to rally support behind funding our local journalism. You can help by participating in our "I Support" program, allowing us to keep offering readers access to our incisive coverage of local news, food and culture with no paywalls.
Malia Politzer
Contact: Malia Politzer