ORLANDO, Fla. — At first, when Marytza Sanz found out her 18-month-old grandson, Santiago, was diagnosed with autism spectrum disorder, she went into the bathroom and cried.

“Then, I wiped my tears and we all sat down and said, ‘OK, from now on our life is different. Everything is going to be different. We have to all work together,'” Sanz said.

A lot has changed since that day five years ago for this Puerto Rican grandmother.

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She started accompanying her daughter to therapy sessions and every so often, she would come across a Spanish-speaking family who would ask her for help in translating care instructions.

“They would ask me, ‘Did you understand what they were saying?'” Sanz said.

Sanz, who had founded the nonprofit Latino Leadership 15 years ago to help integrate the Hispanic community into mainstream America, decided to embark on a new project: a therapy center where the majority of providers and the front-desk staff, are bilingual.

It’s now been a year since Santiago & Friends Family Center for Autism opened its doors in Orlando. So far, the center has provided applied behavior analysis, or ABA therapy, to 41 families and kids, with a total 3,500 hours of therapy, parent training and other services.

The center doesn’t limit its services to Spanish-speaking families, nor is it unique in having providers who are bilingual. Many therapy centers in Central Florida, especially in areas like Kissimmee, have bilingual providers. But it may be unique in having mostly bilingual staff.

Of its 12 full-time employees, which include board-certified behavior analysts and registered behavior technicians, 10 are bilingual.

“We’re a family center for autism,” said Marucci Guzman, executive director of Latino Leadership and Sanz’s daughter and Santiago’s aunt. “We’re linguistically and culturally sensitive to our families, but we accept anyone and everyone.”

Lucia Murillo, assistant director of education research at Autism Speaks, said she couldn’t recall coming across centers like Santiago & Friends.

“I think it’s great that a focus on Latino families and different cultures in general is being thought about,” she said. “And I encourage other centers to think a little more about different cultures that they see to make sure that they’re providing services that are beneficial and understood in different cultures.”

Studies show black and Hispanic children are less likely to be diagnosed with autism and when identified, it tends to be at an older age than their white counterparts. It’s still not clear whether autism rates are lower among Hispanic children, or if they’re diagnosed later, but researchers attribute the later diagnosis to socioeconomic and cultural barriers.

Maria Torres’ son, for instance, was diagnosed with Asperger’s syndrome at age 12, after the family moved to Orlando from Puerto Rico.

Back home the doctors told her that he had some traits of bipolar disorder and schizophrenia. “But after we came over here, and he was correctly diagnosed, he’s doing much better,” said Torres, who is also a registered behavioral technician at Santiago & Friends.

“And finding a group like this, makes one feel stronger. This helps me in a sense to understand what’s going on and not feel a cultural barrier,” she said.

Although translation services are improving and many centers have access to video translators, “there’s nothing like speaking with someone who’s fluent in your tongue and there’s no language barrier,” said Laufey Sigurdardottir, a neurologist at Nemours Children’s Hospital.

“We know we have a lot more work to do … We were extremely happy to hear that a Spanish-speaking center was opening. Just to be able to communicate with the parents is a big deal.”

There’s no cure for autism, but evidence-based treatments like ABA therapy have shown to improve symptoms, which range from difficulties in communicating, repetitive behaviors and social and behavioral challenges.

One in 68 children has autism spectrum disorder, according to the Centers for Disease Control and Prevention. That’s 1.5 percent of kids in the United States. Boys are 4.5 times more likely to be diagnosed with autism than girls.

Meanwhile, there’s a shortage of ABA therapists across the board, said Marisa Salazar, coordinator of education and training programs at the University of Central Florida’s Center for Autism and Related Disabilities. There’s a waiting list for most programs (17 people are on the waiting list at Santiago & Friends).

Santiago & Friends, which is funded by Latino Leadership’s profits from its Housing Rehab program, accepts Medicaid and private insurance. It supplements its income with fundraisers and the adjacent thrift shop, which also serves as a job training site for young adults with autism. And it’s now planning to expand to Osceola and Brevard counties.

“Some people decide to mourn all their life because of the situation of the kid and I tell them you cannot do that,” said Sanz. “There has to be a day that you change your black dress for a red one and you’re going to say we’re going to work with this. We’re going to make this happen.”

© 2016 The Orlando Sentinel
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