ALLENTOWN, Pa. — When Karina Castillo’s son, Alonzo, was diagnosed more than a decade ago with autism spectrum disorder at 3 years old, she was overwhelmed with information.

“I just felt like I didn’t know how I was going to manage all this,” said Castillo, of Allentown, who added that the resources offered to her family weren’t created with the values and struggles of the Latino community in mind.

“I thought that if this was hard for me, as someone who speaks English, I couldn’t imagine how difficult it was going to be for the people who spoke only Spanish,” she said. “I felt there was a great need in our community to bring support and resources to parents with children on the spectrum.”

Castillo, who has two children diagnosed with autism, continues to work to meet those needs through her nonprofit, Corazones Unidos para el Autismo, partnering with agencies and community members across the Lehigh Valley to connect the region’s Latino and Hispanic residents to the support and services.

In November, she published “Amo A Alguien Con Autismo: Historias y Recursos para Cuidadores,” a collection of stories, all in Spanish, focused on the challenges and achievements of Latino caregivers and parents.

“Alonzo means ‘ready for battle’ and his middle name (Lazzaro) means ‘God is with us,'” Castillo explained. “We picked his name without even knowing what we were going to have to withstand.”

While the prevalence of an autism diagnosis in children across the country has increased in recent years, historically there have been disproportionately lower rates of the diagnosis in Hispanic and Latino communities. In addition, white children are more likely to be diagnosed with autism earlier than Black or Latino children, widening disparities in care and resources.

Studies from the early 2000s to the mid-2010s show Hispanic and Latino children were diagnosed about 2 ½ years later than non-Hispanic children. However, recent data from the Centers for Disease Control and Prevention show increased equity.

The CDC’s Autism and Developmental Disabilities Monitoring Network found no overall difference in the percentage of white, Black, Hispanic and Asian or Pacific Islander 8-year-old children identified with autism, according to the CDC’s 2021 Community Report on Autism. But, when looking at specific areas in the U.S. — Pennsylvania was not included — the percentage of Hispanic children identified with autism was lower compared with white or Black children.

“We’ve come a long way in terms of children with autism being identified earlier and earlier,” said Ana Dueñas, assistant professor of special education at Lehigh University. “But we do, you still see a disparity for minoritized families — Latinx, Black, immigrant families.”

The first hurdle to overcome for many across the region is getting the diagnosis, said Mimi Ludwig, president of Autism Society Lehigh Valley.

“Initially, of course, it’s just, ‘How do I get a diagnosis here in the Lehigh Valley?’ There’s not as many developmental pediatricians as there used to be,” Ludwig said. “There are some resources to getting a diagnosis, but we get a lot of requests for people that would like to get diagnosed as teens or adults as well.”

Dueñas, who also contributed a story to Castillo’s book, said the disparities in acquiring a timely diagnosis have a trickle-down effect.

“If you’ve already received a late diagnosis, you’re already kind of late in the game — that’s kind of the first part of the sequence already getting disrupted,” she said, explaining how many families depend on a Medicaid waiver to cover services and often end up on a waitlist because there’s a cap to the funding. “And then the cultural and linguistic diversity piece of the barrier is that we have very few professionals that speak Spanish.

“A lot of families have to choose, once they do secure the services, between continuing to speak to their child and in their own language and English,” she said.

And securing a diagnosis is only the start, Ludwig said.

“You need support. You need a way of making sure that you feel good about yourself,” Ludwig said. “How do we deal with the challenges, and how do we feel good about ourselves? Because it’s not all tears, there’s a lot of joy as well.”

While autism has become an umbrella term to describe challenges with social communication, language and a tendency for repetitive behaviors that can interfere with learning, the language used to describe a person with autism is changing, with some advocates preferring “neurodiverse” to describe themselves and others with the diagnosis.

“Not a disorder, not an illness — just different,” Dueñas said. “Just the brain developing differently. I think we’ve come a long way in terms of inclusivity and using language that is inclusive (but) I think we have a long way to go.”

Castillo has partnered with Autism Society Lehigh Valley, collaborating through donations, webinars and training, as well as sharing resources and emotional support.

“We are dedicated to creating a world where everyone within the autism community is connected to the support they need when they need it,” Ludwig said.

Castillo hopes her book works toward strengthening that community, filling the gaps in care, exchanging experiences and spreading hope for Latino families caring for someone with autism.

“I didn’t choose autism. Autism chose me,” Castillo said. “And now we just have to find ways of being able to live with autism, not just for our own sake, but for our children’s sake, and also finding resources and information out there for families to be able to not feel like they’re alone.”

© 2022 The Morning Call
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