By Jessica Easthope
One in every 36 children has been diagnosed with autism, according to the latest data from the Centers for Disease Control and Prevention. The neurological condition has been steadily on the rise since doctors and researchers first started tracking it.
Today, while there are advances in communication technology and early intervention leading to more resources for the autism community, misconceptions, stigma and shame still exist – even within the Catholic Church.
People with non-speaking autism describe the condition to Currents News reporter Jessica Easthope as a “mind-body disconnect.”
They take in information and process it, but oftentimes there’s a disruption in the organization and regulation of things like speech and movement. It’s something that can make an experience like going to Mass challenging.
Susan Esposito, a parishioner at the Basilica of Regina Pacis on Staten Island, New York, and her two adult sons who both have non-speaking autism, spoke to Easthope about how faith plays a role in their lives and how the church has received them.
Thirty-three-year-old Charles Esposito can at times been found motoring through puzzles that help bridge the gap of the mind-body disconnect he experiences as someone who has non-speaking autism.
He and his brother Anthony live on Staten Island at On Your Mark, a residence and day program for adults with developmental disabilities. Their mother, Susan, fought to get them there.
“What you’re told when they’re babies and younger, what’s not going to be and what’s not going to happen, happened,” she tells Currents News. “They’re independent. They do their own thing. They come to program. They enjoy their lives.”
Susan has been fighting for her sons all their lives. While faith has been a constant for her family, she says her children have not always been compassionately received at church.
“We were parishioners at a church by my house, and we were thrown out with Charles a number of times. The usher threw us out,” she explains. “Then we went in, standing in the back. Then somebody else told us we had to leave. So it was difficult.”
Recently, thanks to something called a letterboard, both Charles and Anthony have been able to use their own voices to express their pain in moments like that.
“Church always increased anxiety, unfortunately when my vocalizations would take control, I very often felt judged and embarrassed,” he tells Current News.
“Though I have struggled resonating with God, I always felt comfort in the statues. It’s hard to accept why we were created this way,” adds Anthony.
Charles and Anthony take everything in: they learn and process information just like someone who’s neurotypical, but they can’t control their bodies in a way that allows them to consistently and reliably give that information back.
“It turns out that those individuals understand absolutely everything, and the technical term is apraxia for which is difficulty and motor planning,” explains Cheslea Cialino, a therapist at On Your Mark. “And the guys who communicate on the letterboard who have learned this method, it’s not in their control.”
She says that letterboard communication is only recently becoming widely recognized as a credible form of communication for people with non-speaking autism.
“To never know if their voices were ever going to be heard or found, if they were ever going to be understood. I mean, they lived 30 years of their life trusting and hoping that it would come to this,” she explains. “And fortunately it has.”
In terms of their faith, these two men have a lot to say. For the first time in their lives, they can say what they want to get out of the church experience.
When asked what the ideal Mass experience looks like for a Catholic with autism, Charles says it looks the “same as it would for a typical Mass, but I would like to see the parishes be informed on the truth behind non-speaking autism.”
Susan listens to – and is always learning about – her sons.
“We need to make it more welcoming. I know again, it’s overwhelming,” she says. “It’s loud at times with the music, but it’s part of our life. As Catholic families, if there were more religion classes, if there were more church functions, It would help them, I think, to realize, ‘I’m part of this family too: God’s family.’”