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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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Several weeks and dozens of calls into the process, Catalan remembers walking through one of the office buildings she works in, making sure the lights were turned off and everything was clean. She began to cry. She couldn't stop.

"I felt desperate," she says. "I didn't know where to go. I didn't know how to start. I didn't know what to do."

She persisted — all while working full time and taking care of her husband and four other children. In what little free time she had, she took English classes, hoping to acquire enough of the language to persuade English-speaking therapists to take on her son. At the worst of it, she was sleeping two to three hours a night.

And — at least for the first four months after Leonardo was diagnosed — she did it all alone, without the support of her husband.

"At first he didn't want to believe it," she says. "My husband didn't think anything was wrong with Leo. He said I was crazy."

Dilcia Yanez, a social worker affiliated with the support group GALA, says that she sees that sort of thing a lot: Lots of more traditional dads have trouble coming to grips with their children's diagnosis.

"There are fathers who abandon their families — it's part of their macho," says Yanez. "When a father realizes that their child is not typical they struggle with it to the point that they can't cope. They leave the home."

Others blame their wives for being unable to control the child. The situation is improving with education, says Yanez, adding that now most fathers do stick around.

Even so, many of the therapists, doctors, and social workers interviewed for this story still find that immigrant fathers are rarely as involved as mothers in their child's treatment (this is often true of most fathers as well).

"I let them know that I really recognize that they are so involved and that it is so important for their child," says Yanez. "Running away is not going to make their child better."

After several months, Catalan's husband finally did accept his son's diagnosis, and began to support his wife's efforts to get Leo therapy. He even went to educational seminars to learn more about his son's diagnosis. Still he rarely attends therapist appointments — partly because of his work schedule — and generally leaves interacting with the therapists to his wife.

Things eventually got better. Catalan found Jump Start — a bilingual program offered though SARRC to teach parents of newly diagnosed children how to work with their kids. Through SARRC, she was also able to get habilitative services — therapists who come to the home an hour per week to help autistic children meet self-help goals.

The first year of therapy was the hardest, she says. Despite all that she had done to fight for therapy for her son, he wasn't improving. She did all the exercises taught to her by SARRC at home religiously, but nothing seemed to reach him.

"It was like he was closed up in a box," she says. "He didn't want to learn. It was so difficult."

She cried a lot. Then — after nearly a year of therapy — Leo had a breakthrough. One day, he began to play with a variety of toys in a therapy session. He responded to people. It was as though someone had flipped on a switch, and suddenly he wanted to learn.

Now a lively 7-year-old, Leo has proved many of DDD's initial predictions wrong. He can go to the bathroom on his own, dress himself, and play with toys. He's even learning to prepare his favorite foods. Although he still can't talk on his own, he communicates quite well through a speech device — a computer that talks for him. And he hugs and kisses his parents.

"That first day I cried," says Catalan. "I just thanked God because finally my child is starting to discover the world."

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Malia Politzer
Contact: Malia Politzer