California Latino community lacks information about autism

From The Santa Cruz Sentinel in Calif.:

WATSONVILLE, Calif. ­-- When Eduardo Moran was 18 months old, he didn't talk. He didn't smile. He didn't sleep.

His parents, Urbana and Raoul, took him to a Watsonville doctor, who said Eduardo was fine. A few months later, still unresponsive, the Morans were referred to Stanford University, where he went through a barrage of tests.

"One psychologist immediately knew what it was," said Raoul Moran in Spanish.

It was autism, something the Morans knew little about. Urbana thought it was a phase, until she started reading.

"I felt bad," she said in Spanish. "When I read the pamphlets, I realized it wouldn't pass."

Diagnoses of autism are on the rise, fueled in part by a better understanding of symptoms by doctors and parents. But in the Latino community, there is little information about how common autism is. Gina Fiallos, clinical and intake services director at the San Andreas Regional Center, based in Campbell, which serves developmentally delayed and disabled people, said the largest growing groups of autistic children are in the Latino and Asian communities.

A 2007 report from the California Department of Developmental Services found since December 2002, the autism population among Latinos grew 104 percent, while whites grew 59 percent. In 1987, there were just under 2,000 whites with autism in the state and a couple of hundred Latinos. In 2007, there were just under 10,000 Latino people with autism in the state, whereas there were about 14,000 whites, according to the report.

"The diagnosis is progressing faster than the system can keep up," she said.

In Santa Cruz County, the regional center serves 35 Latino children with autism, a number that Fiallos said is not inclusive, because some children with autism diagnoses don't meet the state criteria for services at the regional center. The center serves 143 Santa Cruz County children in all.

Studies suggest the illness may be under-diagnosed or misdiagnosed in Latino families. In California, the percent of all autistic people that are Latinos, 28 percent, is below the total percentage of Latinos in the state, 36 percent. Yet, the population of Latino children is growing in Santa Cruz County, meaning the autism diagnosis might rise, as will the need for services in Spanish and providers who speak Spanish.

Parent-run support groups are common in English-speaking communities. Santa Cruz has the Special Parents Information Network and the Special Needs Parent Training Alliance that offer community, resources and support to families dealing with disabilities in general.

And while such groups specifically for autism exist for Spanish-speaking families elsewhere in California, no such group seems to exist in Santa Cruz County, leaving families like the Morans feeling they must deal by themselves with an illness that has no cure, no single scientifically vetted cause and a lifetime of treatment.

"We're isolated. We still don't have a support system," Raoul said.

About 10 years ago, British researchers estimated autism occurred in four or five births per 10,000. More current estimates by the same group are one to two births per 1,000. The incidence of autism in California is about 44 per 10,000 births, according to the UC Davis Medical Investigation of Neurodevelopmental Disorders Center. Boys are more likely than girls to be affected.

Yet, in Latino children, diagnosis rates are seemingly lower, based on a study of Texas schoolchildren, but the results are dependent on school reporting in an environment where educators may not be trained to spot autism.

There is some evidence that California children of Mexican-born parents have a lower prevalence of autism. Yet, what isn't clear in those studies is whether Spanish-speaking or immigrant parents have the same access to and education of possible resources available. Also, there is evidence that minority children are misdiagnosed with attention-deficit hyperactivity disorder or obsessive-compulsive disorder before the correct diagnosis of autism is made.

This wastes what many professionals see as precious time to intervene and start treatment.

"There isn't a clear answer. So little is known about autism in Latinos," said Virginia Chaidez, a post-doctoral researcher at the UC Davis MIND institute. Chaidez, under the guidance of autism expert Irva Hertz-Piccioto, has begun a project looking at diagnosis rates of Latino children, and what environmental and genetic factors may contribute, including proximity to agricultural chemicals.

Meanwhile, some Latino families deal with the stigma associated with having a child with developmental needs.

Teresa Montes de Oca, leader of Fiesta Educativa in San Jose, which provides information and community to Spanish-speaking parents of developmentally disabled or delayed children, said it can be difficult for Latino families to deal with disability, especially in sons.

"Culturally, it's hard, because a lot of the times, they don't have the information they need," she said. "The parents really look up to having a boy in the family, but if the boy has special needs, parents feel like, What happened? This is not what I was expected,'" she said.

She said getting a diagnosis, as with the Morans, can be difficult and time-consuming because psychological testing is often done in English, rather than Spanish, and often, so is speech therapy and education. So parents who don't speak English have a hard time understanding the intricacies of autism and getting help for their children. Any many with young, non-school-age children are afraid to make themselves known if they don't have documentation.

Eduardo, now 12, goes to E.A. Hall Middle School, but still doesn't talk. He gets speech therapy for 20 minutes once a week and a behavioral specialist from the regional center comes to his home twice a week. But he eats constantly, and the family home in Watsonville has an alarm to warn when he's about to run into the street. He destroys things, bites and fights. Because the Morans feel they can't control him in public, he stays at home, watched vigilantly by his mother, while his father, an auto mechanic, works two jobs.

"Her only rest," said Raoul of his wife, "is when he's at school or asleep."

Dr. Salem Magarian sees lower-income children at the Dominican Pediatric Clinic. Over time, he said, seeing autistic children has become more common, not just because the definition of autism has become more inclusive, but because more children fit the definition.

Autism is defined by developmental delays in speech, spastic movements, repetitive behaviors and impaired socialization. Onset is usually before age 3, said Magarian, and diagnosis is best made by a team of clinicians, including pediatricians, psychiatrists, neurologists and psychologists.

Magarian said when a child comes into his office with autism symptoms, he'll have families fill out questionnaires, and talk about the child's development and intellectual functioning. He sees one child per month who may have autism, and takes referrals from schools and other clinics. Many of his patients are Spanish-speaking.

"It's different because there isn't a diagnostic test," he said, referring to a blood or genetic test. "It's not like you can go to the doctor and say, Can I have the autism test?'"

Under-diagnosis or misdiagnosis may happen, Magarian said. Diagnosis can take multiple visits. Even after diagnosis, it may not be clear what a family should do next. Community-based services are limited, and not all are covered by Medi-Cal. Children may need special education, speech therapy, behavioral therapy and sensory therapy.

"It's a challenge for these kids to try and thrive in this society," he said of any autistic child. "I think it's hard for any family. Latino families are incredibly devoted to their kids and their kids' welfare."

The Morans followed several dead-ends in treating Eduardo, including a trip to Mexico for therapy with dolphins and sending off stool samples to a researcher in Hawaii. The dolphins scared young Eduardo, and the researcher never contacted them.

Even locally, getting autistic children to services creates a challenge, said Don Sapoznek, a Santa Cruz psychologist.

"It's just a few of us that see most of the kids," he said.

There are few, if any, providers that specialize in autism in South County, he said, but getting children treatment early is associated with what he calls "rewiring." Early speech therapy, for example, means some previously non-verbal children can learn some language.

"You can't take a 10-year-old or a 12-year-old and make too much change," he said.

Yet because of confusion surrounding outcomes for autism versus other autism spectrum disorders, such as Asperger syndrome, parents can be unclear as to what changes may happen. Children with Asperger's syndrome have better language and outcomes and can live and thrive independently, whereas children with autism often need constant care for their entire lives.

Susie Christensen of the Special Education Parent Training Association said Spanish-speaking families sometimes come to their meetings, but "they are afraid to speak up."

She said part of the issue is identifying those Latino families with autistic children, because many hide in the woodwork.

"They have a child with a disability, and don't know what to do with it. It's a hundred-fold harder fight when you don't speak the language well," she said.

The Ortiz family in Watsonville has a 15-year-old son, Nazario, with autism. They don't get out much with him, and don't interact with a lot of other families. Elda Ortiz went to a couple of meetings with the Special Parents Information Network in Santa Cruz, but it can be hard to get to meetings. She said she would be interested in support, but doesn't seek it out.

Montes de Oca said the Ortiz family is common.

"We don't ask the neighbor for help," she said. "We don't want our neighbor to know that we need it."

She has been trying to start a branch of Fiesta Educativa in Santa Cruz County for years, but has had trouble finding volunteers to help run the support meetings. There aren't a lot of books written in Spanish, and not all information on the Internet is available in Spanish.

Day care is an issue for many families, she said, so she tells them to bring their children. But, like the Ortiz and Moran families, parents believe their children are difficult to manage, and won't bring them out of the house.

"We're concerned about the rest of the world, what the neighborhood thinks," Montes de Oca said.

But despite what neighbors think, Latino parents still said they want other parents to talk to, in their language, with their cultural upbringing.

Julisa Diaz has two sons with autism at the public Chrysalis School in Live Oak. Jesus Antonio is 6 and Francisco Antonio is 4. Before moving to Santa Cruz, Diaz lived with Jesus in Santa Rosa. They took the bus around town and Jesus would scream if the driver was someone he didn't recognize.

He didn't talk, and she learned about autism in a parenting class.

"I kept on crying because he was hitting kids and people were saying I was a bad mom," she said.

A public health nurse accompanied her to get Jesus tested. The diagnosis was a relief, she said, because it explained his behavior.

Then Francisco was born, and also behaved like Jesus. Diaz thought her youngest was imitating his brother, but then he too, was diagnosed with autism.

The Chrysalis School specializes in autism, and the boys spend their days rotating every 15 minutes from one station to the next, playing and learning to talk.

Diaz said she'd love to talk to more Latino parents with autistic children, but has to deal with child care as well. She can't work, she said, because she has no one to help her look after the boys.

"When I would get a baby sitter, they would have no patience for my kids," she said.

The state budget looks to cut funds from the regional centers, leaving parents like Diaz, the Ortizes and the Morans in fear they'll have to go without services. Fiallos said the center serves about 143 autistic children in Santa Cruz County. There weren't a lot of services a decade ago, but with improved diagnosis comes need, not just in Watsonville, she said, but in Live Oak and Beach Flats in North County.

"All resources are lacking for all people in Santa Cruz County," she said.