ORLANDO, Fla. – According to the Centers for Disease and Control and Prevention, the rise of autism in the United States has gone up by about 10%, steadily increasing since researchers first began tracking it in 2000.
“Some people say, ‘No, it’s OK.’ No. It’s not OK. That day that you listen to that doctor telling you that your boy, your baby, has autism, it really shocks you and your heart starts crying,” Marytza Sanz, the president and founder of Latino Leadership in Orlando recalled.
Nine years ago, her first grandson was diagnosed with autism when he was 2 years old.
“We hardly slept in our house. We had to take turns, two hours each person because he would be awake the whole night,” she said.
After the diagnosis, Sanz said she began to look for therapy centers but didn’t find any that catered to minorities.
“Something that I observed with the ABA therapy was that most of the places, they didn’t had anything culturally sensitive for our families,” she said. “One day I came to my board of directors in one of our meetings and I said, ‘Why don’t we start an ABA program therapy?’ So, everybody look at me like, ‘What are you going to do? Are you a therapist?’ And I said, ‘No, I am a grandma.’”
Sanz is not just a grandmother. She is a community advocate who in 2001 founded the nonprofit Latino Leadership with the focus of improving the quality of life for Latino families in Central Florida. In 2015, she opened the Santiago & Friends Family Center for Autism in Orlando.
“I see Santiago being a lighthouse for our community. We don’t serve only Latinos because here we have every child that needs therapy can come here,” she said. “I think that early intervention is the key for our kids. We have to be proactive.”
In 2020 the CDC reported about 1 in 54 children are identified with autism spectrum disorder and boys are four times more likely to be diagnosed with autism than girls.
“It’s very hard to see...when you see other kids at his age, the things they have done or they are doing and you know that your kid maybe he will never do it or maybe it will take longer for him to reach that. It’s painful,” the grandmother said through tears.
Despite the hardships, she’s also seen the silver lining in her Santiaguito -- her tender way of calling her grandson.
“He has really teach us to have patience, to have understanding for things that you cannot change,” she said. “Thank you to the pandemic he was potty trained, yes, potty trained at 11 years and he learned how to ride bicycle this year.”
As for her message to parents learning how to cope with autism, Sanz said love helps lead the way.
“Don’t feel embarrassed. Open your heart and...it’s a new challenge that you have in life but it’s, I think that it’s a proof of love for our kids,” she said.