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Latino Group Bridges the Barriers of Autism

Support: After son's diagnosis, couple found little data in Spanish. Now they share facts.

July 08, 2002|H.G. REZA | TIMES STAFF WRITER

A distraught Gloria Hernandez called her husband at work with the wrenching news: Their 18-month-old son was autistic.

Edson would never be "normal," she was told.

Jose Luis Hernandez struggled to find a way to comfort his frightened wife as she asked, "Do you know anything about autism?"

They blush now when they recall Jose's reply in 1998: "I saw 'Rain Man.' I know a little bit."

His answer, though sincere, spoke volumes about how much they had to learn about the complex neurological disorder afflicting their youngest child.

"I'm sure I wasn't the only Latino whose knowledge of autism came from a Hollywood movie," Jose said. And, he thought, they could not be the only Latino family with an autistic child.

So they set out to learn as much as they could about autism, which affects the part of the brain responsible for social interaction and communication skills and typically is diagnosed in the first three years of life.

And now they are sharing their knowledge--through a Santa Ana-based support group and 24-hour hotline, (714) 542-7032, they founded--with a growing number of Latino parents looking for answers about autism in their own language and within their own culture.

The Hernandezes had seen autistic behavior in Edson, now 6, but did not recognize it at the time. He had stopped communicating after his first birthday and was engaging in strange behavior, such as banging his head on the wall.

Frightened by the doctors' diagnosis and filled with uncertainty about Edson's future, they tried to glean information from local sources, including the UCLA Medical Center and the Regional Center of Orange County, which contracts with the state to help developmentally disabled persons. The couple, Mexican immigrants who live in Anaheim, also attended conferences.

"We were desperate for information. But there was nothing available in Spanish. UCLA gave us an outdated pamphlet in Spanish. The conferences were in English," Jose said.

"For Latinos who don't speak English, it's very frightening. Many have never heard the word 'autism.' Imagine a doctor telling you your child will never be normal," he said. "The only thing you understand is that your child isn't normal, and you want answers. But the only answers they give you are in English."

The Hernandezes were forced to do their own research to learn about the disorder that had stolen away their son.

Gloria quit her job as a market cashier and left for Mexico City, where she spent five weeks researching autism at the National Autonomous University of Mexico.

It was up to Jose, a lead cook for the Claim Jumper restaurants, to care for and support the family, which includes two older children.

While Gloria read and copied materials in Mexico City, Jose purchased a computer and learned how to access Spanish-language autism sites. Although proficient in English, like many nonnative speakers they are more comfortable using their first language.

In the months after Edson's diagnosis, the couple learned that there were dozens of Latino parents just like them; fathers and mothers who spoke little English, with children disabled by a condition they knew nothing about and that experts do not fully understand.

They also discovered that support for Latino parents of autistic children was hard to find. So the Hernandezes and four other couples with autistic children formed a support group, the Santa Ana-based Grupo de Autismo Angeles. It's a first-of-its-kind nonprofit in Southern California that now includes 140 parents.

The five families became the nucleus of Grupo Angeles, whose members now come from Fontana, Pomona, Moreno Valley and Los Angeles to attend monthly meetings in Santa Ana.

One of the founding couples bought a house to serve as a headquarters. The center--funded from garage, tamale and Avon sales--includes a computer lab with donated equipment and a library for parents and children. Jose and Gloria are also counselors and answer a 24-hour hotline.

The Autism Society of America estimates that as many as 1.5 million people nationwide have the developmental disorder. According to the state Department of Developmental Services, 17,614 Californians with autism receive some form of assistance. Of these, 2,085 come from households where Spanish is the primary language.

Resource groups throughout the state offer some information about autism in Spanish, Vietnamese and Cambodian. But Laura Ruesga, program specialist at Fiesta Educativa in East Los Angeles, said that Spanish-language information is "still very limited."

"That's why Grupo Angeles is so awesome. Their program educates and supports parents, all in Spanish. It's the only one of its kind," said Ruesga, whose office offers educational programs for Spanish-speaking parents about their children's disabilities. The Hernandezes' biggest frustrations have been with their own culture, where autism is a stigma made worse by misunderstanding.

An autistic child is often dismissed with a disdainful "Esta loco" ("He's crazy"), Gloria said.

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