Lost in Translation: Autism Is Tough to Diagnose and Treat – and for Immigrant Families, It Can Be Impossible

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Still, such a game of "telephone" is hardly optimal when it comes to working with autism.

Some therapists think that working with families is unethical if family and therapist don't speak the same language, McIntyre says. If a child's Spanish is delayed but his English is fine, then it's a language issue — not something that requires a therapist. And if both the child's primary and secondary languages are delayed?

"It's hard for children to progress beyond their primary language," says McIntyre. "And my Spanish vocabulary is so limited — I know Javier's sometimes speaking Spanish, but I can't always tell."

Most Latino children with autism are not identified until they go to school.

Under Arizona law, all children are required to go through a screening within the first 45 days of their beginning school. Teachers must fill out questionnaires that evaluate the behavior and development of each child.

It's an imperfect process. Teachers are still getting to know kids in the first few weeks of school and won't always catch the difference — at least not initially — between a child who is painfully shy and one on the autism spectrum.

Thanks to the recently passed budget, schools are expected to suffer staggering funding cuts. Neda Shafir, a spokeswoman with Roosevelt School District, says that many schools have been forced to reduce programs and staff.

"What's happening with the Legislature is nothing less than brutal," she says. "We're looking at significant funding cuts, which means that class sizes are going up and schools have to reduce services."

School districts with high volumes of illegal immigrants are hit even harder, because undocumented families often go unreported in the census — which means the schools might not get complete funding for those kids.

"Teachers are committed to giving kids the best education," says Shafir. "But when you have a classroom with 35 kids, you can't give attention to every child. We might be looking at a lot of teacher burnout."

The process is additionally complicated by language. Since the implementation of Proposition 203 in 2001, all second-language learners are required to take four hours of intensive English every day. All other classes are also taught in English. Teachers sometimes have trouble telling whether a child's speech delay is simply because they're a second-language learner or due to a disability.

A study conducted in California by autism expert Emily Iland found that of the 108 Spanish-speaking mothers of children with autism surveyed, 44 percent reported that the teacher or staff at school thought their children's problems were caused because they were an English-language learner, or because they spoke Spanish at home.

Teachers do their best to identify kids. Even so, not all children are getting the services they need. It took Celia Sanchez nearly a year and a half to get her daughter's school to provide special education services to Rosillo.

She had a doctor's diagnosis, but the school wouldn't recognize it. Even after she resubmitted her daughter's medical records — including a diagnosis of autism from a licensed doctor — the school kept Rosillo in normal classes. Rosillo's doctor had to threaten to take the school to court for challenging his diagnosis before they'd finally give Sanchez's daughter the services she was entitled to. By then, Rosillo had already lost more than a year of school.

Joanne Phillips, the former director of special education for the state Department of Education, says Rosillo's the exception. Now a private education consultant and owner of the company CADRE, which helps train schools and teachers to identify and work with children with special needs, Phillips says that most children do eventually get identified and served in schools. But she acknowledges that the process is far more challenging for the children of monolingual, Spanish-speaking parents.

Phillips says that anyone trained to look for autism should be able to easily identify the children who have it, regardless of their linguistic and cultural background.

"When I meet the children, it's the autism that shines through. It transcends culture," she says.

To a trained eye, she says, there are certain telltale universal signs. For example, children with autism will often look at a person's mouth rather than their eyes, because that's where the sound is coming from.

Or she looks to see if children follow "joint attention." If the child is walking down the street, and a stranger suddenly looks up, will the child look up, too? Such behaviors are universal to typical human behavior, but not to people with autism.

The big problem, according to Phillips, is that teachers and staff at schools aren't being adequately trained to identify kids. In some schools, funding cuts are so severe that much-needed staff vacancies have been open for months — jobs like special education teachers, psychologists, etc.

"School districts need training and staff," she says. "They don't know how to work with kids with autism, and they don't know how to evaluate the skills of the children to know where to intervene."

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Malia Politzer
Contact: Malia Politzer