The only thing Kai Arroyo eats is butterscotch pudding. He only drinks milk from a bottle. When he speaks, you get the sort of language that you expect from a kindergartener – not a seventh grader. And he can’t go to the bathroom on his own.
"He’s still wearing pull-ups at 13," said his mother Astrid Arroyo. "I know! He’s actually a little more vocal about letting us know when he needs to go to the bathroom, but he’s still not fully there, so he’s still dependent on us to remind him and take him to the restroom."
Kai has autism, which affects his thinking, behavior, language and ability to relate to others. The severity of this neural developmental disorder can vary. Kai is low-to-moderate on the spectrum. There is no known cause, and there is no cure.
The prevalence of the disorder has risen dramatically over the years — just four years ago, the Centers for Disease Control and Prevention estimated that one in 150 children in the U.S. had autism. Now the estimate is one in 68.
Despite the disorder’s prevalence, Astrid Arroyo, who is originally from Puerto Rico, struggled to get her son diagnosed. Doctors told her not to worry because Kai’s speech struggles were the result of her speaking Spanish at home. But that wouldn’t have caused the sorts of issues her son was having.
"A lot of Spanish-speaking families here are going through the same thing where their kids are late, you know they’re not talking at the right time, and when they go to the pediatrician, the pediatrician will say it’s because you speak Spanish in the home - just give it some time and come back," she said.
For much of the last couple decades, Latinos have been the fastest growing minority group in the U.S. The growth has been slower in southwestern Pennsylvania than in other parts of the country. But while the population of Latinos here is smaller, it is growing. Between 2000 and 2010, the Latino population increased 70 percent. There are nearly 20,000 Latinos in Allegheny County, including children like 9-year-old Jesus Bernal, who has autism.
On a recent afternoon, Jesus and his sister were playing with a wooden labyrinth in a Children’s Hospital waiting room. Jesus was taking many of his cues as to how to act and where he can go from his younger sister.
Jesus’s parents, Jorge and Adinea, moved to Monroeville from Mexico 13 years ago. Early on, Jesus displayed developmental delays – but not having mastered English – or the American health care system, his parents believed what their doctor told them.
"Because we spoke two languages, he is probably confused. That's why he can't speak. But with my daughter, she spoke, and she is younger than him," Jorge said in Spanish.
They told them because they spoke Spanish at home, his English wasn’t developing. But that wasn’t the case. His younger sister Diana was already mastering both languages while Jesus was barely speaking either.
Eventually, through their own persistence, they found their way to Dr. Diego Chaves Gnecco, a developmental-behavioral pediatrician. Originally from Colombia, he runs a bilingual program called Salud Para Ninos, which over the years has grown busier and busier.
"If you're Hispanic in the U.S. you are less likely to be diagnosed with autism. If you are Hispanic in southwestern Pennsylvania, you are even less likely to be diagnosed with autism," he said four years ago.
For years, his work has been based on anecdotes: people like Astrid Arroyo and the Bernals whose children didn't have diagnoses. Eventually, they found their way to him or one of his colleagues and received a proper diagnosis. But in the last couple years, studies out of California and Oregon have backed up his work. And data from the CDC has shown that white children are more likely to be diagnosed with autism than black or Latino children. When Latino children are diagnosed — up to four years later, they are usually not evaluated as early.
"One of the few things we know the earlier you make the diagnosis and the earlier you start treating the better your chances are," said Chaves Gnecco who emphasizes that not being diagnosed early on can be detrimental.
"The problem with waiting is that when you're talking about development, you can't let time go," he said. "When I talk to families, I try to use a very lay example which is like catching the bus. If you're waiting for your bus and you miss that bus, you won't be able to take that bus ever again. You might catch the next bus, but it's never the same."
When Chaves Checco does help a family get a diagnosis, there are still other barriers.
"I have conversations with families where I mention the word 'autism,'" he said, "and families have never heard this term. They have never heard the diagnosis."
The Bernals hadn’t.
They asked if there was a cure or medicine their son could take, and they set about learning as much as they could. They then had to educate other relatives – both in Pittsburgh and in Mexico about autism – and convince them that when their son was acting up, he wasn’t misbehaving. It was part of his disorder.
There were other factors. Jesus qualified for wrap-around services, which help children work on skills, but the family didn’t own a car to get to appointments. Adinea Bernal became a stay-at-home mother to handle Jesus’s care, which has helped Jesus but has hurt the family financially. And she doesn’t speak English, making it difficult for her to communicate with the non-Spanish speaking behavioral therapists and teachers who work with her son.
Despite these barriers, with a diagnosis before age 3, Jesus has made great strides.
Astrid Arroyo’s son, who was also diagnosed early on, has made strides as well, although they aren’t as apparent to the naked eye. On a recent afternoon, Arroyo picked her son up from his North Hills school bus, and then spent a half hour with him as he watched and counted buses.
"He loves it. You’ll see, we actually have to stay here before all the school buses leave he’s actually in love with the school bus," she said.
He’s had dozens of specialists of every kind work with him. Arroyo said if he hadn’t, he would be more delayed.
Her experience of over a decade led her to work with the PEAL center, a parent advocacy group. She helps other Latino parents navigate schools and treatment.
"What they’ll do is they’ll put them in the ESL for like a half semester for those that are older," she said. "It's not like a waste of time, but it kind of delays the progress."
She also does outreach, teaching Latino families about Autism and related disorders, helping them navigate the state and federal services they qualify for based on their immigration status
Chaves Gnecco does outreach as well, writing columns for La Jornada, the region’s Spanish newspaper, traveling to families in the surrounding rural counties and training and working with residents at Children’s Hospital.
