TAMPA, Florida – Talking about autism and educating parents about it is not an easy task.
Educating Hispanics on how to deal with autism can be even more complicated.
Cultural barriers, limited English language skills, economic status, and even the stigma associated with autism can prevent Latino parents from acting early and finding resources and professional help for their children. According to Tampa-based Puerto Rican physical therapist and specialist Lourdes Quiñones, parents’ ability to provide care is influenced by the stigma they perceive.
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Starting last year, she set out to promote a better understanding of autism in the Hispanic community.
The result: La Hora del Cafecito (The Coffee Time), an online program in Spanish that analyzes and discusses problems related to autism with a group of specialists, educators and health professionals that started in February 2020.
“Our goal is to make the informative content, tips, and advice associated with autism research available to the entire family and people who are interested in the subject,” said Quiñones, who is a consultant at the center for Autism and Related Disabilities (CARD) from the University of South Florida.
Autism is a developmental disorder that is characterized by abnormalities in language, behavior, and social relationships. It is diagnosed in 1 in 54 children nationwide, according to the Centers for Disease Control and Prevention.
Quiñones and her colleagues have created a format to simulate a conversation similar to a talk show. The panel consists of two mothers and a sibling of people with disabilities who are also professionals in mental health, special education and public health. Quiñones is not a parent or sibling of someone with autism, but she does have experience as a pediatric physical therapist and in special education.
A typical program runs for an hour and is streamed live every Friday via the “Grupo CARD Espanol” Facebook page. It can be listened to at any time on the CARD-USF YouTube channel. Programming includes commentary and analysis on autism, educational therapies, and testimonials.
“We talk in simple and easy-to-understand ways about how to fight autism in our children, in our homes and in our daily lives, and how to look at it without fear or shame,” Quiñones said.
According to Quiñones, the style of the program brings the “Hispanic soul” and an opportunity to create closer communication with people through a component as symbolic as coffee.
“In our culture, when someone knocks on the door and we invite them, the first thing we do is offer a cup of coffee, right? Our program has something like that because I believe in my heart that open conversation brings us closer to people, ”said Quiñones.
She added that talking about autism among Hispanics is important as a deeper understanding helps parents have more tools and therapies to care and support their children.
This, along with other initiatives such as Quiñones’ Gain Strength in April program, aims to raise public awareness of the effects of autism.
Marita Bernal, a Peruvian mother with one autistic son, has been promoting the development of alternatives to treating autism for more than a decade. Bernal follows and listens to Quinones’ program. She said these types of initiatives serve as a guide and example for thousands of Hispanic families in need of advice from experts on autism.
“I think it’s important to promote more programs like La Hora del Cafecito so that Hispanics can speak freely and without fear about their children being classified as autistic. There is a lot to do and to discover, ”said Bernal.
Her son Fernando Corredor was diagnosed with autism when he was 2 years old. Today, at the age of 49, he writes poetry and has published two books: “Continúo meditando en mi mundo desierto” (I continue to meditate in my abandoned world) and “Yo soja el resorte que a mi mamá le falta” (I am the support that my mother misses).
Bernal said her knowledge of autism and her commitment to finding development alternatives are vital. However, Bernal had to grapple with an educational system that is complicated for children with autism. She also had to find new strategies to improve her son’s health, such as changing his diet.
“These are things that not many people think about, but gradually present the victories and progress, step by step,” said Bernal.
Among Hispanics, the discussion of autism takes on a special meaning because many parents are evading the topic or are uncomfortable talking about it to others, Quiñones added.
Autism can usually be diagnosed by the age of 18 months or earlier. However, many children do not get a definitive diagnosis until old age. This delay means there are children who, according to experts, are not getting the help they need.
Bernal decided to research everything she could.
Her decision and persistence were a breath of life for her son. Five years ago Corredor took part in the International Book Fair in Bogotá and presented a second edition of his first book. Then he was invited to Lima, the capital of Peru, to talk about his poems.
“The information is there, but you have to look for it, especially in Spanish,” said Bernal. “But the key was also to make my son happy at all times.”
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