UCR center focuses on autism's other isolation
By JANET ZIMMERMAN
The Press-Enterprise, Saturday, November 10, 2007

Victor Concepcion wishes he had pushed harder when he thought his toddler needed help.

He and his girlfriend were worried because their son, Christian, wasn't talking by age 2. Caseworkers at the agency that oversees services for developmentally disabled children told them to call back in a year if he still wasn't progressing.

Concepcion said he considered insisting on an examination, but his girlfriend wanted to believe that nothing was wrong. The couple also disagreed about whether to speak Spanish or English at home after hearing that growing up with two languages would further slow Christian's speech development, he said.

After six months, Concepcion, 54, of Rialto, became so concerned that he took Christian to a neurologist, who said the boy needed educational services immediately or risk permanent speech loss. Concepcion called caseworkers, but it was several months before the boy could be evaluated.

Christian was diagnosed with autism and enrolled in a San Bernardino County preschool that offers therapy. Now 3, he doesn't talk, is not potty trained and has trouble socializing with other children, Concepcion said.

"We waited it out and wasted a whole year," he said.

The family's experience illustrates the need for culturally sensitive approaches by doctors, therapists and teachers in treating autism, a developmental disability that strikes as many as one in 150 U.S. children, experts said.

Determining how best to reach and serve those families will be part of the mission of the SEARCH Family Autism Resource Center, a new venture at UC Riverside. The center is open to all Inland parents, with a focus on Spanish speakers and the poor.

"Children with autism present greater behavioral challenges than other disabilities," said Jan Blacher, founder of the center and a professor in UCR's graduate school of education. "As if this weren't enough, the struggle to negotiate the service-delivery maze adds new levels of stress and worry, even more for Spanish speakers and low-income families. Many of them don't know what to ask."

Studies show that poor and minority children with autism access fewer services, and obtain them later than other children. Latino and black children are typically diagnosed two to five years later than whites, according to the Southwest Autism Research and Resource Center.

In the Latino culture, families are often reluctant to seek help outside the home, have difficulties with transportation and child care and are less likely to fight for services, said Jose Fuentes, a clinical neuropsychologist in Loma Linda who runs a behavioral intervention program for children with autism.

About 43 percent of the Inland area's population is Latino. Of almost 22,500 people receiving services for developmental disabilities in Riverside and San Bernardino counties, 39 percent are Hispanic, 12 percent are black and 41 percent are white, according to Inland Regional Center, the state-funded agency that coordinates services. The center offers materials and services in Spanish but doesn't keep tabs on the number of clients whose first language is Spanish.

Autism crosses all ethnic and socio-economic lines. Once rare, it is now the fastest-growing developmental disability in the nation.

The cause is unknown, though researchers have linked it to genetics and possible environmental triggers. Yet even combined with more awareness among pediatricians, those factors don't account for the spike in cases, Blacher said.

Autism strikes in early childhood and affects four times more boys than girls. The disorder is characterized by impaired communication and social interaction and repetitive patterns of behavior such as hand flapping and spinning.

Children with autism don't instinctively learn from the environment around them. They must be taught even the most basic skills, such as waiting in line, following directions and making eye contact. About half have little or no language skills, and as many as 75 percent may have mental retardation.

Autism presents a range of symptoms and intelligence levels. Some children can lead normal lives when they grow up; others will require lifetime assistance.

"With increased education efforts and the emphasis on training and social skills, we expect these kids to go much further than they have in past decades," Blacher said.

Early Diagnosis Crucial

Educating parents about the disorder is critical because researchers now know that early intervention produces the most dramatic gains, Blacher said. Autism used to be diagnosed around age 3 or later; now it can be reliably diagnosed as early as 18 months.

The American Academy of Pediatrics recently recommended screening all children for autism twice by age 2.

Autism treatment is complicated because no one therapy works for all children, even those with a similar diagnosis. The SEARCH Center is beneficial because it can objectively evaluate information on studies and therapies, said Fuentes, the neuropsychologist, who is a member of a state autism advisory committee and helped translate materials into Spanish for the center.

As part of the university's graduate school of education, SEARCH families will be invited to participate in two ongoing studies about autism. Blacher and her team are looking at how cultural differences affect the way families deal with autism and at children's adaptations to transitioning into preschool and out of high school.

SEARCH will help Inland parents of children with autism navigate the labyrinth of treatments and services through an informational and interactive Web site that will be up and running at the end of this month and through parent support groups later this year, said Blacher, a nationally recognized expert on families of children with developmental disabilities. Eventually, autism screening and assessments may be added.

SEARCH stands for support, education, advocacy, resources, community and hope. Blacher's inspiration for the center was watching the ceaseless efforts of parents to help their autistic children, she said.

The center's outreach efforts are unique for UC campuses, which emphasize research, Blacher said. The center will have to depend on private donations because major federal funding agencies such as the National Institutes of Health don't cover outreach, she said.

The SEARCH Center is staffed by two graduate assistants and two full-time research fellows, whose salaries are covered by the Doug Flutie Jr. Foundation for Autism and special education training grants. The center has raised $40,000 in private donations so far, is using university offices and eventually will be self-sustaining with a $5 million budget, said Steven Bossert, dean of UCR's graduate school of education.

A spring gathering to gauge support for the center included UCR alumni and actress Rene Russo, who has offered to help promote SEARCH. State schools superintendent Jack O'Connell and the Latino Caucus of the California Legislature endorsed the center.

Steep Learning Curve

The center formalizes help that many parents have struggled to find on their own.

Jose Luis Hernandez and his wife, Gloria, started the Grupo de Autismo Angeles support group for fellow Latinos after their son was diagnosed with autism a decade ago.

At the time, the Mexico City natives knew little about the disability. They searched for books on the subject, but the only information they could find in Spanish was an outdated pamphlet. Though the couple speaks English, they said they are more comfortable learning new subjects in their native language.

Their group started in Orange County with five families. Nine years later, they have 300 members who come from throughout Southern California. They meet monthly in the city of Orange.

Hernandez, a restaurant cook, teaches families to be more assertive with authorities.

"When you go to the school district, you go to the psychologist, the teachers, the principal; you think they have authority so you respect them. If they say no, you say, 'Thank you, you're right,' because they have a higher level of education," he said. "We try to educate parents to know in the U.S. ... the laws protect your kids, but you have to know your rights."

Many Latino families are hesitant to get outside help because in Mexico, there is often shame with having a disabled child, Hernandez said. It can be hard to adjust to a culture that supports families dealing with disabilities, he said.

Hernandez said he also has pushed for more involvement of fathers when it comes to autism because in Latino families, women are responsible for the children.

Ten years ago, when he attended an autism conference at the urging of his wife, Hernandez was one of only two men in a crowd of 300.

"They applauded us. It's a big issue for us," he said.

Challenge for Schools

School districts become responsible for services to children with disabilities at age 3, and are responsible for education costs even for children who cannot be mainstreamed, or placed in regular classes. More than 34,000 children with autism attend California schools, according to the state Department of Education.

Adding to the difficulty is the demand on schools for one-on-one aides, occupational therapy, equipment and speech and language services, which threaten to overwhelm local districts, according to an Autism Advisory Committee report O'Connell released this month.

The report, which was forwarded to the Legislature, noted funding shortfalls for autism programs, particularly at the preschool level; a lack of universally accepted, effective educational practices; a lack of knowledge and training at all levels; and personnel shortages.

The committee recommended creation of a statewide clearinghouse on the Web and a toll-free telephone number for information on autism treatments and other resources for parents and teachers, similar to SEARCH's mission. The group acknowledged the need for sensitivity to cultural and economic obstacles.

Tami Duncan, of Corona, said many parents don't know about or cannot afford the thousands of dollars it costs for a special education advocate or attorney to help them understand the law and fight school districts for services their children need.

Duncan hired an advocate to help her get the school district to cover speech and occupational therapy for her son, Michael DeNicola, 10, who has a high-functioning form of autism known as Asperger's syndrome, which allows him to attend regular classes.

The response from the district was almost immediate and Michael got the services she sought, Duncan said.

Steve Morford, director of the Special Education Local Plan Area for the Riverside Unified School District, said parents desperate to help their children often perceive that attorneys and advocates are necessary.

"If you believe there's only one approach to helping your child, then you're going to be reluctant to listen to district staff if they discuss other possibilities," he said.

Bossert, dean of UCR's graduate school of education, experienced the struggles himself after his daughter, Kathleen, was diagnosed 19 years ago.

At age 5, Kathleen was hardly speaking and was resistant to touch, both symptoms of the disorder.

At the time, there were few support systems or networks to help the family, and they moved from Utah to Syracuse, New York, where more services were available to Kathleen, he said.

Today she lives with friends in New York, drives and works for a grocery chain that trains people with disabilities.

Bossert said that even being well educated and financially stable didn't make finding services for his daughter any easier.

"Think of parents who are struggling -- single moms, those who don't speak English well. How do we reach out to those parents to get them help?"

Reach Janet Zimmerman at 951-368-9586 or jzimmerman@PE.com

1 in 150

The chance that a child will be diagnosed with autism, according to the U.S. Centers for Disease Control and Prevention