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

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And, of course, there's always denial. No parents expect their child to have autism, and some don't want to accept that there's something wrong with their kid. So when the doctor says a child is fine, many parents don't want to question them.

But they have to. Because there is no cure for autism, it's vital that families provide "intervention" — speech and occupational therapies — to their children as early as possible. Because young children's brains are still developing so rapidly, there's an ideal window in which to start therapy — between about 18 months and 5 years (though therapists prefer to start working with kids around 2), says Daniel Oppendum, vice president and clinical services director at the Southwest Autism Research and Resource Center.

With an average diagnosis made at 5 or 6, Spanish-speaking immigrant families are missing that window.


Even families lucky enough to get services run into roadblocks.

A sociable 5-year-old, Javier Acosta has mild autism that's combined with other developmental disabilities. Though he attempts to make eye contact and enjoys the company of others, he has trouble putting coherent sentences together and engaging others in play.

During a recent session, he and his speech therapist, Joanne McIntyre, sit on the faded blue carpet in a small, windowless white room full of toys — play ovens, Legos, a dollhouse, and a pirate ship. Javier instantly gravitates toward the pirate ship. Giggling, he reaches assertively for a gray-and-yellow pirate figurine held by his therapist.

"Say, 'Will you give me the pirate?'" she instructs patiently.

Javier babbles a string of words that don't make any sense. McIntyre listens intently, shakes her head then repeats herself slowly, gesturing at the figurine.

"Say, 'Will you give it to me?'"

"Da me lo!" says Javier, correctly responding to her request, but in Spanish. Not understanding, she repeats her request. And again. Finally, Javier says it in English.

From her perch on an indigo preschool-size chair in the corner of the room, his mother Thelma attempts to keep her 8-year old daughter entertained during Javier's therapy session. When Javier says "Da me lo," she laughs, delighted at her son's progress.

Acosta doesn't speak English. And McIntyre doesn't speak Spanish. Javier and his sister are the only ones who speak both languages. The fact that Javier and his therapist can communicate in English only won't necessarily affect his therapy — Javier understands English, so he's still benefiting.

McIntyre's inability to communicate with Javier's mother, Thelma Acosta, however, is a bigger problem. She can't ask Acosta about Javier's typical behavior, or about potential scheduling conflicts, or explain to her the techniques she's using with Javier and why. More importantly, she can't teach Acosta how to work with Javier at home. She has no idea whether or not Acosta even understands the techniques she's using during Javier's sessions.

Pretty much all communication between McIntyre and Acosta is filtered over the phone through Javier's bilingual third party. If McIntyre has notes or questions for Acosta, she'll tell the translator, who will eventually call Acosta. If Acosta has questions — though McIntyre says there haven't been any so far, which also concerns her — she'll do the same thing.

"I have no idea if the activities are being done at home," says McIntyre. "Working with some children — trying to make sure that they're understanding me — can be a real challenge."

As it is, there simply aren't enough speech therapists in the Valley to go around. Finding one who speaks Spanish is next to impossible, according to people in the community.

"I can count the number on one hand," says social worker Yanez.

Many therapists hesitate to work with families they can't talk with directly, Yanez says.

A few weeks ago, Yanez contacted a speech-therapy company on behalf of several of her clients. One of the therapists called the family but couldn't communicate with the mother. After only one phone call, she gave up.

"She called me back and requested that I only refer her to English-speaking parents," says Yanez.

So much of the progress of a child depends on how well their parents incorporate their treatments into everyday life. The language barrier makes things much more difficult.

But it's just as frustrating for therapists willing to work with such families.

Marti Baio, a speech therapist and the owner of Baio Enterprises Inc. — where Javier goes for treatment — says they do the best they can to work around the language barrier.

"Sometimes parents will bring translators," she says. "If they can't, we'll call a translator who will then talk directly to the parents."

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Malia Politzer
Contact: Malia Politzer