Ever since Gibrán Álvarez was diagnosed with autism at age three, the lives of his parents have been filled with challenges and the search for answers.
“I think that from the moment you hear the diagnosis, everything is a challenge. The first challenge is receiving the diagnosis and being able to accept it and move forward and work toward the child’s future. To enroll him at school, so he gets his therapies,” said Adriana Álvarez, his mother. “In fact, just coexisting with other people day to day, that’s also a big challenge, because many times these children have sensory issues, and sometimes, people don’t know and misinterpret and think it’s just a child having a tantrum.”
Autism, which affects one in 68 people, according to the Centers for Disease Control and Prevention, is a condition still surrounded by many unknowns. For parents such as Álvarez, people’s lack of knowledge about the condition complicates matters further.
“It’s a big challenge to teach people what autism is, all its variations, because not every child with autism is the same. A lot of times people think that a child with autism will be flinging himself against the wall and hurting himself and be in his own world all the time, just moving his arms and rocking his body back and forth. That was the first real image people had of autism, but children with autism come in all shapes and sizes. We as parents need society to accept them,” said Álvarez who hails from Colombia.
Patricia Lanaspa has spent many years on the difficult path of supporting a child with a disability. Her son, Nacho, who today is 20-years-old, was diagnosed with autism in his native Uruguay at just four year old.
The diagnosis was why Lanaspa emigrated to the United States in search of opportunities for her son. Her experience led her to Parent to Parent of Georgia.
As regional manager for the organization, Lanaspa has helped Hispanic families seeking support.
“There’s nothing wrong with feeling depressed when you receive the initial diagnosis. It’s O.K. to ask for help, it’s O.K. to go to a therapist or a counselor, it’s O.K. to go to a doctor and say: ‘I can’t face my day to day,’ she said. “My general guide is, if you can’t get out of bed and you’re crying all day … then it’s time to seek professional help.”
María Correa, a family support specialist at the Latin American Association, has witnessed the needs of many Hispanic parents whose children have special needs.
“Often, the parents are embarrassed. First, because they don’t know, secondly because they think their child has something wrong with them, that he’s not normal, and that’s where start to debunk the myths,” said Correa who is originally from Puerto Rico.
Hispanics who have children with disabilities face additional struggles when seeking services for their children, she added.
For example, home finances can become complicated when a parent must quit working to attend to their child. Getting to and from therapy services is also a challenge for many, said Correa.
The lack of bilingual specialists is also an obstacle.
For Lola Hernández, whose son, Eric, has autism, immigration status is another barrier for many Hispanic families.
“Undocumented families don’t have access to services,” said Hernández, who also works as an activist for the rights of children with disabilities and their parents. “They only receive services at school, but they can’t receive therapeutic services. They don’t receive speech therapy, occupational therapy or psychological counseling.”
A study published by the American Academy of Pediatrics found that Latino children had very low rates of diagnosis and tended to be diagnosed at an older age and with more severe symptoms.
“The Latino community in the United States unfortunately is being diagnosed much later, and it’s for many reasons, but one of them is this belief of, ‘don’t worry, he’s going to talk. It’s ok, he’ll walk. He’s lazy, he’s stubborn, he’s misbehaving.’ The other is not having access to services,” said Hernández.
For those reasons, Correa encourages parents not to wait to get a specialist’s opinion if they observe any developmental delays in their child.
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