Spanish-speaking parents face unique barriers when trying to access information about autism

From Metro West Daily News in Framingham, Mass.:

Six weeks ago, the Ortizes read in the local paper about a talk in Spanish for Latino parents of children with autism held at the library in downtown Framingham.

They were thrilled.

Since they moved to Framingham from their native Puerto Rico in 1998 looking for help for their then- 3-year-old daughter Yamilex (pictured), they have yearned to connect with other Latino parents of children with Autism Spectrum Disorders (ASD).

They were disappointed when they realized they were the only ones who attended the talk on April 5.

It has been that way for the Ortizes, they said. For the past 10 years, they are often the only Latinos in support groups for families of children with ASD. And because Yamilex's mother, Judith, 46, doesn't speak English, they don't attend support groups. Yamilex's father, Tomas, 59, learned English when he was growing up in New York City, but he, too, feels lonely.

"It's hard when you're alone," said Tomas in their Beaver Terrace Circle apartment. "You want to find other people like you to relate to them and help each other out. It'd be less hard."

Finding Latino parents of children with ASD is not easy. Mauricio Perea, a special education assistant teacher with the Framingham School District, gave the April talk to break the isolation in which they live due to language and cultural hurdles.

"They face so many barriers that it's harder for them to look for help for their children," said Perea. "One of my goals is to help them find the resources to help their children improve their lives."

Nearly 1.5 million Americans have ASD, but nobody knows how many are Latinos. Experts said that as the Latino population keeps growing, the condition may be more prevalent among them in years to come. Experts also said Latino children with autism tend to be diagnosed later than non-Hispanic children.

Advocates already report an increasing demand for information in Spanish about ASD, but if the language barrier can be overcome with Spanish pages in their Web sites and more Spanish-speaking workers, cultural barriers continue to be challenging.

"In other cultures, there is shame involved with special education needs and a stigma associated with autism, and some families are hesitant to ask for help," said Jennifer Repella, director of programs for the Maryland-based Autism Society of America. "It has to happen both ways. Organizations should be aware that the need is out there and provide information, but families need to act, call and ask for help."

In the Bay State, Massachusetts Advocates for Children has offered workshops for Latino and Haitian parents of children with autism to help them get over cultural, linguistic, and literacy barriers and make them better advocates for their children's needs in the public schools. Three years ago, the group started a project in Lawrence serving 25 Latino families, said senior project director Julia Landau. It's the right thing to do, she said.

"Latino families cannot participate the same way other families do in making decisions that will affect their children's well-being," she said. "There is a real need to provide help to Latino parents and address cultural barriers they face."

Early diagnosis and intervention is crucial to help children with ASD develop their potential and better their outcomes. In Yamilex's case, her parents didn't wait long. After Yamilex turned 2, they noticed she wasn't talking, making eye contact or showing interest in other children. They took her to several doctors in Puerto Rico, who couldn't diagnose her condition. In Boston, Yamilex was diagnosed with autism in her first appointment.

She was 3 1/2, and soon after that, she started receiving special education services. Navigating the school's special education system was overwhelming in the beginning, her parents said.

"It's hard when you don't know what kind of services you can get," Tomas said.

Yamilex, who just turned 14, goes to Ashland Middle School, where she attends a special education class taught by teachers from ACCEPT Education Collaborative, a group that provides special education services to 14 different school districts in the region. At home, Emily Stahl, a home-based education teacher with ACCEPT, helps Yamilex with school homework, behavior management and problem-solving skills.

"She's fantastic," said Stahl of Yamilex. "She's very smart and wants to be very independent. She's always happy, always smiling and laughing, but she seems to have difficulties managing her own behavior."

Yamilex has tantrums, a common episode among children with ASD. During her outbursts, she hits the walls with her fists or head, breaks lamps and throws computer monitors and other pieces of furniture on the floor. Other times, she hits her mother and father or bites her own hands out of frustration. Her parents had to learn to live with her tantrums, but it's not easy. Stahl is working with Yamilex on how to express her feelings.

"I used to go to work with bruises on my arms and scratches on my face," said Tomas. "My co-workers would ask me if I had an argument with my wife. They wouldn't believe me when I told them it was my daughter."

Yamilex's developmental age is 8 years old, said her dad. Her favorite pastime is lining up her 75 Barbie dolls on the floor, something she can do for hours. She loves music and dancing and can read and write, add and subtract, but her language and communication skills still lag behind.

On a recent morning, Yamilex was sitting in the living room watching television and listening to her iPod, where she has songs by Shakira, Britney Spears, Rihanna and others. From time to time, she would laugh and smile without looking at anyone in particular.

Yamilex's parents have learned to accept her. "To me, it's not a handicap," said Tomas. "It's a condition, and she's a pretty happy child. She has her own way of doing things. If I see her smiling, that makes my day and recharges my batteries."

Though they worry about the future, the Ortizes try to live in the present. Their desire to connect with other Latino parents of children with ASD is still great, not only to build friendships, but also to help other Latino children improve their lives.

"People shouldn't feel they're alone," said Judith.

In the meantime, Judith and her husband find comfort in watching their daughter's progress over the years. Yamilex showers and dresses by herself, has been toilet-trained since age 4, and can play computer games. Though she still doesn't interact with others, she makes eye contact more frequently. Judith has been relishing a recent development. In general, Yamilex doesn't like to be touched, but lately she lets her mother hug her.

"And sometimes, she hugs me and kisses me," said Judith. "And one time, she told me 'I love you.' I told her 'I love you, too."'