TAMPA - Talking about autism and educating parents about it is not an easy task.
Educating Hispanics about how to deal with autism can be even more complicated.
Cultural barriers, limited English proficiency, economic status and even the stigma attached to autism can prevent Latino parents from knowing how to act early and find resources and professional help for their children. The capacity of parents to provide care is affected by the stigma they perceive, according to Tampa physical therapist and specialist Lourdes Quiñones, who is Puerto Rican.
Starting last year, she set out to foster greater understanding about autism in the Hispanic community.
The result: La Hora del Cafecito (The Coffee Time), an online program in Spanish that analyzes and discusses issues related to autism with a panel of specialists, educators and health professionals that began in February of 2020.
“Our goal is to bring the informative content, tips and advice that are linked to autism research to the whole family and people who are interested in the topic,’' said Quiñones, who serves as a consultant at the Center for Autism and Related Disabilities (CARD) at the University of South Florida.
Autism is a developmental disorder characterized by abnormalities in language, behavior and social relationships. On average, it is diagnosed in one in 88 children nationwide, according to the Centers for Disease Control and Prevention.
Quiñones and her colleagues created a format to simulate a conversation much like a talk show. The panel is incorporated by two moms 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 a sibling of anyone with autism, but she has experience as a pediatric physical therapist and in special education.
A typical program runs for an hour and is live-streamed every Friday via “Grupo CARD Espanol,” a Facebook page, and it’s available to listen to anytime on CARD-USF’s YouTube channel. Programming includes comments and analysis on autism, educational therapies and testimonies.
“We talk in a simple and easy-to-understand way about how to address autism in our children, in our homes, our daily lives, and how we need to consider it without any fear or shame,” Quiñones said.
The style of the program brings the ‘Hispanic soul’, according to Quiñones, and a way to establish a closer communication with people through a component as symbolic as coffee.
“In our culture, when someone knocks on the door of the house and we invite them in, the first thing we offer is a cup of coffee, right? Our program has something like that because in my heart I believe that an open conversation brings us closer to the people,” said Quiñones.
She added that talking about autism among Hispanics is important because a deeper understanding helps parents have more tools and therapies to to care for and support their children.
That, along with other initiatives such as Quiñones’ program “Gain Strength in April,” serves to raise public awareness about the impact of autism. April is World Autism Awareness Month.
Marita Bernal, a Peruvian mother with an autistic son, has been promoting the development of alternatives to treat autism for more than a decade. Bernal follows and listens to Quinones’ program. She said that these types of initiatives serve as a guide and example for thousands of Hispanic families who need the advice of experts on autism.
“I think it’s important to encourage more programs like La Hora del Cafecito so that Hispanics can talk about autism freely and without fear that their children will be singled out for being autistic. There is much to do and much to explore,” said Bernal.
Her son, Fernando Corredor, was diagnosed with autism at the age of 2. Today, at 49, he writes poetry and has published two books: Continúo meditando en mi mundo desierto (I continue to meditate in my deserted world) and Yo soy el resorte que a mi mamá le falta (I am the support that my mother is missing).
Bernal said that her knowledge about autism and dedication to finding developmental alternatives were crucial. However, Bernal had to deal with an educational system that is complicated for children with autism. She also had to find new strategies to improve her son’s medical conditions, such as changing his diet.
“These are things that not many people think about but little by little, step by step, the victories and advances are presented,” Bernal said.
Among Hispanics, the discussion about autism acquires special meaning because many parents evade the topic or they don’t feel comfortable talking about it with others, Quiñones added.
Autism can usually be detected at 18 months of age or earlier. However, many children do not receive a definitive diagnosis until they are older. This delay means that there are kids who do not receive the help they need, according to experts.
Bernal decided to research all she could.
Her decision and perseverance were a breath of life for her son. Five years ago, Corredor participated in the Bogotá International Book Fair and presented a second edition of his first book. After that, he was invited to Lima, the capital of Peru, to speak about his poetry.
“The information is there but you have to look for it, especially in Spanish,” Bernal said. “But the key has also been to make my son happy at all times, too.”