May 28 , 2007

Autism Effects Bay Area Latinos

By Alison Fromme
Special to the Neighborhood Newswire

At the Perez household in San Mateo, skinny six-year-old Joshua momentarily stops playing among his sea of toys — a playhouse, a bouncy ball, a bike, an easel, and countless others — to hug a visitor.  “Wanna meet my friend Zoe?  Wanna meet my friend Zoe?  Wanna meet my friend Zoe?” he asks eagerly, eyes darting around the room. 

His mother, Maria, coaxes him to look the visitor in the eye and introduce himself.  He tries once, saying “What’s my name?” and then repeats the same question.  After several attempts, he gets it right: “Hi.  My name is Josh.  What’s your name?”  Once the introductions have been made he runs outside to play with his friend Zoe.  Maria watches through the window, hoping that he’ll interact directly with his playmate.

Getting Joshua to speak even this well didn’t come easily.  He has autism, a lifelong disorder that effects his ability to communicate and interact socially.  He didn’t say “mama” until he was almost three-years-old.

According to the Centers for Disease Control, as many as one out of every 150 eight-year-olds has autism, a disability that manifests itself in a variety of ways with varying severity.  Boys are four times more likely to have the syndrome than girls.  Children with autism can face a constellation of challenges, including learning how to appropriately speak and play with their peers.  They frequently avoid eye contact, prefer to be alone, echo words said to them, and have trouble expressing their needs.  Instead of playing with a toy truck by animating it, an autistic child might seem transfixed while twirling a single wheel repeatedly. 

Maria noticed early on that her son wasn’t the type of baby who liked being cuddled, or demanded a lot of attention.  He didn’t focus on people’s faces.  At two-years-old he still wasn’t speaking.  Since she works with hundreds of babies as a medical assistant at a pediatrician’s office, Maria knew Josh’s behavior wasn’t typical. 

Still, Josh babbled liked any other baby and walked when he was one-year-old.  Maria wasn’t eager to admit that her son might have a problem.  “We Latinas, we don’t talk about these issues because of the stigma, because mental health problems are taboo, because we’re embarrassed, because we’re scared, because it’s socially unacceptable,” she said. 

According to researchers, Latinos have traditionally believed that having a child with a disability is punishment for the parents’ sins.  In addition to the culturally-embedded shame associated with disabilities, strong family ties dissuade some Latino parents from seeking outside help:  families are supposed to provide whatever loving support is needed and government services can seem foreign and confusing.  Some Latino families are reluctant to access assistance that they perceive as a hand-out to the poor. 

Autism is not as commonly reported among the Latino population as compared with European- or African-Americans, but the reason for this difference is still unclear.  In California, more than 20,000 autistic people receive services from the state.  About 4,700 — roughly 23 percent — come from homes where Spanish is the primary language spoken, compared with the 26 percent of all Californians who speak Spanish at home.

“Autistic Latinos are definitely undercounted, which may be because they are under-diagnosed,” said Dr. Sandy Magaña, Assistant Professor at the University of Wisconsin’s Waisman Center of Human Development, Developmental Disabilities, and Neurodegenerative Diseases.  “Since many Latinos lack health insurance, their children may never be observed by professionals who know how to observe these behaviors and diagnose autism.” 

Maria read everything she could about autism.  “I had so much to learn,” she said.  Many of the books she consulted indicated that early intervention is critical, which made Maria worry that it was already too late to help her son.  She, originally from Valparaiso, Mexico, and her husband, a pediatrician of Ukrainian-Jewish descent, decided to seek care for their son.  When Josh was about two and a half years-old she brought him to the Golden Gate Regional Center (GGRC), a nonprofit organization that coordinates services for individuals with developmental disabilities in San Francisco, Marin and San Mateo counties.   

GGRC evaluates infants and toddlers who are suspected of having autism.  If a child is found to have a disability, the center provides free classes for the child and their family, parent support groups, and other services, such as job placement assistance, throughout the disabled person’s lifetime. Spanish and Cantonese translators are available.  “It is hard for families with limited or no English to communicate with English-speaking professionals, even through interpreters,” said Rocio de Mateo Smith, Executive Director of Area Board Five on Developmental Disabilities, an independent state agency working to ensure that people with disabilities receive the services they need.  “It is critical for parents to understand the what, why and how of interventions.  There are very few bilingual autism therapists available, so some families go without services because they cannot find someone who can work with them.” 

Before Josh was evaluated at GGRC, some of his doctors suggested that his bilingual environment might explain why he hadn’t begun speaking by the age of two and a half.  But Maria, who speaks excellent English, wasn’t convinced.  In addition to the GGRC evaluation, she brought Josh to the University of California, San Francisco’s Autism Clinic, which serves people who are covered by private insurance and offers discounted services to those who cannot pay, for another opinion.  Maria was able to rely on her family’s health insurance to pay for needed care, although many interventions, such as speech therapy, aren’t covered
 
Monica Arroyo, clinic coordinator, has handled evaluations for a handful of Latinos.  “When I translate for families, I can sense their difficulty and I can tell that they have lots of questions they’re not asking because they’re uncomfortable,” said Arroyo, who grew up in Puerto Rico.

Although the Perez family didn’t require the clinic’s translation services, they were grateful to more accurately pinpoint where Josh was along the autism spectrum.  Having clinic director Dr. Bryna Siegel’s name on the evaluation was also important, said Maria.  “When she speaks, people listen.”  Siegel, author of several books on autism, including Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals, said that autistic children’s experiences in San Francisco are closely tied to their interaction with the school district. 

The San Francisco Unified School District (SFUSD) offers a variety of treatment approaches that are individualized to meet each disabled student’s needs, according to Gentle Blythe, Director of SFUSD’s Office of Public Outreach and Communications.  Depending on the severity of the disability, educational support can be informal or highly structured, including access to speech, language, and physical therapists.  Parents can also request translation services for both face-to-face meetings and written documents.   Roughly 50 Latino SFUSD students have been identified as autistic.  “Our highly qualified teachers employ a variety of instructional techniques and supports,” said Blythe, citing several types of interventions.

“Some kids are getting quality services, but there is a large number who aren’t,” said Siegel, who consults with school districts across the country.  “San Francisco’s educational practice is biased towards inclusion in regular classrooms, and educational research doesn’t support that.  In essence, you’re taking the child out of the hands of a certified teacher and into the hands of an aide with limited experience, although there are some very good aides.”    

Finding school services that meet Josh’s needs has been challenging for the Perez family.  Several years ago they moved from San Francisco to San Mateo in search of better school services for their older daughter who also requires special education.  The San Mateo preschool programs available for Josh were either below his abilities or tailored to speech problems, not autism.  Maria feared that her son would pick up bad habits, such as banging his head on the wall or finger-chewing, from the children in the low-performing classroom.  She decided to enroll him in the higher level speech class, since he was calling things by their color, asking for “red” instead of “apple.” 

Josh significantly advanced in preschool. “The teacher, Marcy Anderson, was the best thing for my son.  She taught him how to talk,” said Maria.  But that progress came at a price.  Based on the abilities he demonstrated in preschool, the San Mateo School District wanted to place him in regular kindergarten, with no additional support.  Maria was told that the District didn’t offer “Cadillac service.”  Fearful of how Josh would fare without additional help, Maria considered suing the District.  But her pushing ultimately succeeded in getting Josh a placement in a regular classroom with a personal aide and two and a half hours of therapy each week, where Josh learns important social skills, like taking turns and sharing.  He appears to be thriving.

“It is uncommon in Latino cultures to have a right to services, such as special education, and families are grateful for any services whatsoever, so they often won’t challenge the system when their rights are denied,” says de Mateo Smith, who was born and raised in Mexico City.  

Autism services tailored for Spanish-speaking Latinos are available throughout the Bay Area.  In the Mission District, Support for Families of Children with Disabilities coordinates Spanish language workshops, support groups, counseling, and has Spanish-speaking staff, a Spanish language newsletter, and other services geared towards families affected by all kinds of disabilities.  Almost one-third of the organization’s clients are Latino, with about 20 percent coming from primarily Spanish-speaking households.  The Center for Independence of the Disabled, Parca, and Parents Helping Parents also provide assistance and Spanish translation for families of disabled children.  In the East Bay, a group of parents called Angelitors del Futuro con Autismo offers support for Latino families. 

Today, Maria takes out her new digital camera, eager to take photos of Josh: a favorite hobby.  “One day he told me, ‘Mom, enough with the pictures!’” she says, laughing.  “I see my little troublemaker out there and I feel truly blessed.  I am lucky because mothers before me have paved the road.  In the end, we’re all just parents trying to help our kids,” she said.

For more information:

Golden Gate Regional Center, 120 Howard Street, Third Floor, 546.9222, www.ggrc.org.
Hispanic Alliance Support Network, www.manitasporautismo.com.
SFUSD Special Education, 1098 Harrison, 355.7735
http://portal.sfusd.edu/template/default.cfm?page=chief_academic.special_ed.
Support for Families of Children with Disabilities, 2601 Mission Street, Third Floor, 920.5040
 www.supportforfamilies.org.