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 UCLA gave us an outdated pamphlet in Spanish.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.
Mothers often get blamed. One misconception is that inattention by the mother makes a child autistic. Another holds that autism resulted from a scare the mother received while pregnant. And there is a common belief among immigrants that American doctors do not know what they are doing.
"We had friends and relatives tell us over and over that the doctors didn't know what they were talking about," said Jose. "People would tell us to take Edson to doctors in Tijuana."
Autistic Latino children face an additional handicap, because parents frequently refuse to believe there is anything wrong with them, Jose said. By the time parents accept that a child has a neurological problem, he or she has lost valuable time in which to learn social skills through specialized instruction.
"Friends and relatives would tell us there was nothing wrong with Edson. Everyone had a story about their Juanito not starting to talk until he was 5, and he was perfectly normal now; that Edson was no different," Jose said.
"In our culture, a lot of people lose time in getting help for their children because of the false expectation that they will get better. We fell into that trap for a while."
They also initially blamed each other for their son's condition, Gloria said. Each accused the other's family of having a flawed gene that caused the problem.
"We are better informed now and can make more intelligent decisions for Edson," she said. The Hernandezes' experiences are at the heart of their work with Grupo Angeles.
Angie Carrillo, certified child life specialist at the UC Irvine Medical Center and advocate for autistic schoolchildren, calls the center "a historic first for Latino parents."
"They are an amazing couple," she said. "They're just ordinary people who stepped in and filled a big need."
Parents find Grupo Angeles through referrals, word-of-mouth or the Internet. The group's e-mail address is [email protected] Jose Hernandez said they receive e-mail inquiries from throughout Latin America.
Claudia and Adolfo Garrido learned about Grupo Angeles through the Internet from their home in Hermosillo, Mexico, where they had a tortilla factory.
At the Hernandezes' urging, the Garridos, former Santa Ana residents and holders of U.S. residency visas, decided to return to the United States about two years ago with their autistic son, Daniel, now 4.
"There was no school or assistance for him in Mexico that we could afford. We looked at the Internet for help and found Grupo Angeles," said Claudia Garrido, whose family lives in Moreno Valley. "We sold everything and moved back." She and her husband left a middle-class lifestyle in Mexico for his $9 per hour electrician's job here. She does not work outside the home.
"We returned because my son can get an education here. Grupo Angeles taught us about our rights, but it's a constant battle with the school district and our regional center over the services available to our son," Garrido said.
Grupo Angeles and the Hernandezes perform perhaps their greatest service in teaching parents how to assert their rights--especially how to negotiate with school districts for a special curriculum for their children.
Rita Rubin, president of the Greater Long Beach-Whittier Chapter of the Autism Society of America, knows the Hernandezes and works closely with Fiesta Educativa on outreach programs to the Latino community in Los Angeles County. She said Grupo Angeles plays a key role in teaching Latino parents about their rights. "Typically, if somebody in authority tells Latino parents they can't have a particular service for their child, they accept it without question," said Rubin, who has a 24-year-old autistic daughter.
The Hernandezes fought with Anaheim City School District officials over an instructional program for Edson and won; the experience enabled them to help other parents maneuver through the bureaucracy.
They also insisted that their son be taught in a regular classroom.
"If he needs speech therapy, we want the district to give him speech therapy. He's not sick. He's just different and expresses himself differently," Jose Hernandez said. "This is where we're changing the world, by teaching Latino parents to exert their lawful rights for them and their children."
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