SPECIAL REPORT: Autism, the Risk of Doing Nothing
Part two in a series: Major Hurdles for Latino Parents with Autistic Children
By Gloria Angelina Castillo, EGP Staff Writer
Beatriz Quirarte was just 16-years-old when her son Kevin was born, four years later he was diagnosed with Autism. Sympathy and support were hard to come by, says the Spanish-speaking resident of East Los Angeles.
Frustrated, her husband would at times blame her for their child’s disability. Her family’s reactions to her son’s situation made her feel ashamed, she told EGP.
They would tell me, “Poor thing, he is sick,” she said. One doctor even told her it was her fault that her then five-year-old son did not speak. He’s your first child and you’re probably not talking to him enough, she says the doctor told her.
Lea esta nota EN ESPAÑOL: El Riesgo de Hacer Nada
Autism is a group of complex developmental brain disorders, which can manifest in a variety of ways, including an inability to speak or function socially. But at age 17, Kevin is now a junior at Garfield High School and on track to graduate. He spent two years in Garfield’s Junior ROTC, and learned to play the violin in the school’s orchestra class, he says proudly. His dream is to someday work for Pixar as an animator and to travel to San Antonio Texas to visit the Alamo.
Over the years, Quirarte’s husband has become better informed and more supportive, and she says family members are surprised Kevin has surpassed all their expectations.
“They … see all that he has accomplished, more than regular kids. All the discipline he has. Even his cousins aren’t as well behaved, some have chosen different routes, some have joined gangs, others have dropped out of high school… they see him and say ‘being the way he is, he has achieved so much,’” Quirarte said in Spanish.
But Quirarte is quick to point out that her son’s successes are in large part due to the special services she secured for him through the Los Angeles Unified School District, Eastern Los Angeles Regional Center (ELARC), and Centro Estrella Family Resource Center, run by nonprofit Alma Family Services.
For the last eight years Kevin has been going to Centro Estrella, where he’s built strong friendships and received behavior and socialization therapy, and where she takes monthly parenting advocacy classes.
“I’ve told moms who have sons like mine to come here,” but says they probably don’t go because they understand how can “improve their quality of life,” or because it’s something they have to do themselves, Quirarte told EGP in Spanish.
Even the most diligent parents, however, can see their efforts thwarted by the very system that’s supposed to help them.
Jose is 18 and a senior at Franklin High School in Highland Park, she says he’s watched for years as his Spanish-speaking mother, Ana Brizuela, has struggled to get him help. The teen, who asked not to use his real name, has gone with his mother to the Social Security Administration office and to his own disability evaluations.
“She always goes to fill out paperwork, always goes to places and talks about me,” says Jose, who plans to go to a local community college after he graduates.
Jose received some services through LAUSD, but not from the local regional center that provides services to people with a wide range of developmental disabilities. His mother claims the center misdiagnosed her son years ago with Attention Deficit Disorder. Today she worries that he is leaving school without a safety net in the community.
During a Fiesta Educativa meeting for Spanish speakers three months ago in City Terrace, Brizuel was encouraged to appeal ELARC’s diagnosis, something she says she still plans to do. But she has not yet followed up on a psychologist’s evaluation and she’s feeling crushed by other stressors—like possibly loosing her home, she told EGP.
“It’s so frustrating because there’s no one to give you the help you need… one has to fight, and fight and fight,” said the weary mother.
She said people have made her feel like she’s asking for a handout when she’s just fighting to help her son. That’s a sentiment Maria Isabel Macias understands.
“Sometimes even our own people discriminate against us,” she said at the same meeting. Her still not fully potty-trained eight-year-old was first diagnosed with mental retardation, but now she is being told he has autism.
“Sometimes I would sit down to cry,” she said. “I’m in this country without family and I don’t know where to turn.” She says children with autism need to lean how to be independent, because their parents won’t always be with them.
Glassell Park resident Patricia Rasconi said her family accused her of being a bad mother and not teaching her son how to behave. Her son, 8, has been shuffled from school to school, and she was told that there would be no summer school for him, a point corrected by other parents in the group who told her LAUSD offers summer school to Special Education students.
Julifa Alas of South Gate, is waiting for the results of her eight-year-old son’s evaluation. He has Autism, Epilepsy and asthma and he is also not fully potty trained. “I see how he is, and I know he needs help…” she told the other parents who encouraged her to keep on top of her son’s case with the regional center.
But this meeting for Spanish speaking parents is unusual, and many Latinos fail to seek out the services that could help their children. Shame, lack of education or access to resources in Spanish, has left many parents feeling alone and overwhelmed, and their children far behind.
Autism Has No Cure, But the Right Early Interventions Can Make a Difference
The Centers for Disease Control (CDC) puts the number of children with autism at one in 88. And while the disorder can vary from child to child, a diagnosis can usually be made by age three. Some children seem to develop normally at first, but stop gaining new skills, or lose those they do have, between 18 and 24 months, according to the CDC.
Children who don’t respond to their name by 12 months, point at objects to show interest by 14 months, or don’t play “pretend” games (“feed” a doll) by 18 months, could be showing signs of autism, according to the CDC. Other signs include: avoiding eye contact; delayed speech and language; obsessive interests; usual reactions to smells, tastes, textures and sounds; hand flapping; body rocking, spinning in circles or walking on tip toes.
There is currently no “cure” for autism, but research shows that early intervention can make a big difference in a child’s development, according to the CDC.
Dr. Martha Rivera is a pediatrician at White Memorial Medical Center in Boyle Heights and says it’s very important for parents to take their children to wellness check-ups because that’s when doctors screen for developmental benchmarks and other issues beyond the child’s physical health.
A delayed diagnosis could result in the child not getting the early intervention help, he needs.
“One of the most important things I tell parents is that early intervention is very important,” Fiesta Educative Parent Coordinator Josefina Nieves told EGP by email.
She said when a child is three and has a behavior problem, it’s easy to pick him up and carry him away, or to stop him from running in the street, but when the same behavior is still going on at age 15 and the child is taller and stronger than mom, correcting the behavior is much harder. So early intervention with the right services, “such as speech therapy so the child can find a way to communicate” if they are in pain, sad, or happy is very important, she said.
Many of those diagnosed with autism also have sensory issues, and getting occupational therapy early can teach a child how to regulate the sensations they are feeling, she explained. A comprehensive behavioral assessment followed up with behavioral therapy can really change a child’s life, according to Nieves.
“When a child receives services early and appropriate to his/hers needs the child definitely can have a good and prospect life. Unfortunately in our community early intervention is not taken serious enough.”
Mining Through the Barriers, and the Risks
Next month, the California Journal of Health Promotion will publish a study by Emily Iland, president of the Autism Society of America, Los Angeles and a researcher at Cal State University, Northridge. Iland’s work focuses on the factors that impede Latina mothers from accessing services for their children with autism spectrum disorders.
While the Latino population in the United States is growing and the incidences of autism is on the rise, the number of Latino children identified with autism is not proportional to the Hispanic population, Iland writes in her study, Half a Chance is Not Enough: Latina Mothers of Children with Autism Struggle for Equity.
Figures from the US Department of Education indicate that Latino/Hispanic children with autism have half a chance (a risk ratio of 0.5) of being identified as Autistic and receiving services in their educational system, she writes.
Disadvantaged Spanish-speaking mothers are not bad parents, they just need information to become empowered, Iland told EGP.
Iland helped create Fiesta Educativa’s parent training program and says she has seen parents attend their first autism workshop when their child is 16. Language, behavioral and socialization that is not addressed through adequate therapies not only hurt a child’s ability to become independent and hold down a job, but they can also get caught up in the criminal system, she warns.
Parents tend to want to explain away behavior issues, like a child touching a stranger’s hair, but when that child becomes a teenager or adult and is traveling alone, touching a woman’s hair can be interpreted as having criminal intent, she said. As young adults, individuals diagnosed with Autism are also at risk of being taken advantage of by people with bad or criminal intentions because they may be naïve or misunderstand the consequences of their actions.
When a person with autism turns 22 or graduates from high school, they lose all their services provided by the school, Iland said. “When that ends, eligibility for adult services is discretionary… If you leave the educational program unready for life, you are out of luck.”
“Every parent’s worst fear is what will happen to my child when I’m gone,” Iland said. Culturally, Latino parents are also less willing to consider institutional placement, she said.
Fiesta Educativa’s Executive Director Irene Martinez says children with disabilities are sometimes more at risk than other kids to be bullied, and in some case, they become the bullies.
Behavior programs are key to helping a child, but the parent has to be informed and involved, Martinez said.
While it’s not true across the board for all Latinos, there are some autistic children who could be at risk of being in gangs, and that’s the case not just in East LA—it affects all cultures given certain socioeconomic factors, she said.
“It’s also related to self-esteem. They find their own self-esteem hanging out with gang members and things like that. Other times, parents just don’t know how to deal with it,” she said.
Felipe Hernandez, ELARC Chief of Consumer Services, says there have been some cases of regional center clients being involved in gangs, but they typically involve clients who have mild mental retardation and who come from households with long-time gang ties.
Some clients with mild mental retardation, or even higher functioning clients, have had chemical dependency issues, have been involved in criminal activity, such as car jacking, he told EGP.
While this is still rare, the regional center has seen the number of these types of cases rise over the last 10 to 15 years, he said.
ELARC addresses delinquency by offering supportive services that can take them in a different direction, he said.
Issues like these or teen pregnancy are not really an issue among girls because their parents tend to shelter them more, Hernandez said.
In LAUSD, students diagnosed with Autism don’t have higher disciplinary issues because their behavior is supported in their IEPS, according to Nancy Franklin, LAUSD special education administrator. However, there are a small number of children with autism in continuation schools, she said. There are 11,000 of students with an autism diagnosis in the district, according to Franklin.
In LA County juvenile detention facilities, about 500 out of the 2,300 in LA County juvenile detention facilities have IEPS, but only one has a diagnosis of autism, according to Margo Minecki, Public Information Officer for the Los Angeles County Office of Education
Parent advocate and host of the radio show “Special Ed For Busy Parents” Gloria Perez-Walker says Latino culture tends to be fatalistic in general, which doesn’t help parents advocate for their child with autism or disabilities in general.
“We also tend to think that disability happens to us because of previous life events, etc. I remember my mom telling the doctor who was diagnosing my son with autism at age 3 that I had never wanted kids when I was younger, as if I had somehow brought autism upon myself and my child,” Perez-Walker told EGP. And “I don’t feel it does much for me in the long run to be told that it’s a blessing, that God gave him to me for a reason, or that I am great because I am raising a child with autism. Of course I am! I am his mother! What I want as a Latina mother, and what a lot of my clients want, is more discourse about autism in our culture/families,” she said. I need to know more about “my child’s rights, and how to access and influence services and policy, and not more pandering to us in simplistic terms about our children who are different. That does us no good and leaves our children even further behind.”
Speaking at a parent conference on Autism in collaboration with Fiesta Educativa at the Mexican Consulate last month, the Mexican Consul in Los Angeles, David Figueroa, urged parents to seek information and advocate for their children diagnosed with the disorder.
“We have to break-down the fear, understand what Autism is, break-down the barriers to information, it is so important that we obtain that information,” Figueroa said in Spanish, to the predominately Spanish-speaking group.
“Unfortunately, sometimes in our Latin American cultures, there is always an aversion, or fear of facing difficult barriers … We must face reality and when we confront the reality we will be able to overcome the condition and the disadvantage that we might have,” he told parents.
The first part of this series focused on the issues that make it difficult for local monolingual Spanish-speaking parents to find information about autism and available services. Read part 1: SPECIAL REPORT: Latino Parents With Autistic Children Face Major Hurdles
Next week Part 3—Know Your Rights to Better Advocate for Your Autistic Child
This story was produced in collaboration with the USC Annenberg/California Endowment Journalism Fellowships.
May 24, 2012 Copyright © 2012 Eastern Group Publications, Inc.