For Spanish-speakers, accessing information and resources is difficult and making time for therapies can be a challenge, but Josefina Nieves, a single mother, is managing to raise two teenage sons, Daniel and Nestor, both of whom have autism.
When Nestor was diagnosed back in the mid-1990s, the doctor told Nieves to lower her expectations: he would never talk, never get a job or get married.
āWho do you think you are to tell me that my sonās life would amount to nothing?ā Nieves says she would like to ask that doctor now.
In addition to her can-do attitude, Nieves speaks both English and Spanish, and is computer and Internet literateāall abilities that give her an advantage accessing resources that can help improve her sonsā opportunities, and quality of life.
She also has the advantage of being an employee of Lincoln Heights-based Fiesta Educativa, a non-profit group that educates parents about their rights, resources and about the disability.
But Nievesā āadvantagesā are not the norm.
Understanding what a diagnosis of autism means is difficult no matter who you are, but if you happen to be Latino, only speak Spanish, are illiterate or have little formal education, or are not Internet savvy, the difficulties are significantly greater.
Highland Park resident Ana Brizuelaās son is a senior at Franklin High School and has autism.
āWhen my son was little I knocked on a lot of doors and I didnāt get any help,ā she tearfully said in Spanish during a February parent workshop hosted by Fiesta Educativa.
Brizuelaās son now receives services for his disability through the school district, but she is worried that there is no safety net for her son as he enters adulthood.
Latinos and Autism
Autism, a term used to describe a group of complex developmental brain disorders, is being called a pandemic by public health officials.
According to new figures by the Centers for Disease Control (CDC), one in 88 children have been diagnosed with the disability. That is up from 1 in 110 in 2006, and 1 in 150 in 2002.
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āAutism is an epidemic. We never thought that autism would be as high as we are currently seeing, so it is an epidemic,ā Carolina PeƱa-Ricardo of Childrenās Hospital said during a recent parent conference at the Mexican Consulate where Nieves also spoke.
The California Department of Developmental Services (DDS) has calculated a 70 percent increase in autism cases in the state from 2002 to 2007, and the number of Latino children with autism is increasing at a similar rate of white children, according to PeƱa-Ricardo.
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The spectrum disorder, which varies from child to child in severity, causes significant social, communication and behavioral challenges and in less severe cases those issues can be alleviated with intervention. Early intervention, by age three, is considered critical.
Knowing if you need to seek help is not easy.
Autism speaks, but does it speak Spanish?
While organizations like Talk About Curing Autism (TACA) and Autism Speaks provide some information in Spanish, the information is not readily available in the community.
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Centro Estrella Family Resource Center offers socialization programs and numerous other services considered key to helping children with autism thrive. Run by non-profit Alma Family Services in unincorporated East Los Angeles, the center reaches out to parents by word-of-mouth and to community organizations through established relationships.
āItās a lot harder when youāre a monolingual Spanish-speaking family and both parents work and donāt know what resources, or when they get the resources, or how much to ask for,ā said Lourdes Caracoza, the centerās director of program operations.
While autism greatly affects the Latino community, Fiesta Educativaās Executive Director Irene Martinez says families are not getting all the information available.
āPartly it has to do with language, most of the information out is in English, most of the conferences, most of the trainings,ā she said.
Lack of familiarity with institutions and how to navigate them, as well as immigration status also creates barriers for immigrant families.
āSometimes they are afraid; itās an element,ā Martinez said. āFor the most part the children are born here but the parents are not so they are afraid they are going to get into some legal difficulties, so that holds them back from getting the services they have a right to, by law. So itās a reality. We are trying to break down those barriers, but situations like this make people more uncomfortable to come in and get more information.ā
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Angelica Herrera is a parent coordinator at Fiesta Educativa and works directly with parents like Brizuela, but says attendance at their monthly parent meetings is dismal. Herrera says sheās happy when five parents show up, but too often no one attends.
āGetting the word out has been a challenge,ā Herrera said.
And for many Latino parents, acknowledging that their child might have autism in the first place can be an overwhelming and confusing undertaking.