November 2008 Issue
How Youngstown journalist and author Sean Barron broke the bonds of autism.
A visitor arrives at Sean Barron’s home in Poland, Ohio, near Youngstown, and taps on the screen door. Wearing shorts and a T-shirt, he offers a friendly welcome. The guest has parked her car in his long, narrow driveway and asks if that is okay.
“Well, I was going to suggest you park it on the roof, but I wasn’t sure if your transmission could handle it,” he deadpans.
You’d never suspect it, but Sean Barron didn’t always have a sense of humor. In fact, there was a time when he rarely smiled.
In 1965, at age 4, Barron was diagnosed with autism. At the time, not much was known about the neurological disorder that impacts social interaction and communication skills.
Today, Barron, 46, is a happy, successful author, freelance journalist and activist who spends much of his free time volunteering for causes benefiting animals and people in crisis, and touring the country to speak about how he broke free from autism’s bonds — a feat many thought was impossible.
“It took me a while to feel comfortable in my own skin,” he says. “For a long time I viewed autism as my enemy.”
Though no two cases are the same, there are some common characteristics of autism, which affects more than 1.5 million people in the U.S. today. According to the Autism Society of America, children with autism often take longer than their peers to start speaking, use repetitive language, exhibit unusual motor mannerisms (like hand-flapping or twirling objects), have difficulty making eye contact, and show little or no interest in interacting with their peers.
When Barron was growing up, his days followed self-imposed routines: He had to be the first in his family to sit at the kitchen table in the mornings, he always sat in the same seat and always had to sit on the right side of the backseat when he rode in a car. If forced to stray from one of these routines, chaos and loud, violent tantrums ensued. He didn’t begin speaking until age 5.
He was angry, destructive and unable to communicate his needs verbally to his parents, Ron and Judy, who, in turn, had no idea how to help their son. They took him to a number of doctors until one finally attached a term to their son’s odd behavior: autism.
In those days, autism was often misunderstood. Some doctors believed it was caused by “refrigerator” mothers, who were cold, distant and unloving toward their children. In Barron’s case, this could not have been further from the truth. He grew up in a loving household, with a mother and father who stopped at nothing to get help for their son. His younger sister, Megan, played with him and helped him make friends. In 1992, Sean co-wrote a book about his life with his mother, titled There’s A Boy In Here: Emerging from the Bonds of Autism (Future Horizons, 2002).
“No matter what the statistics said, despite the horror of the prognosis, we caught rare glimpses of a helpless child trapped inside the bizarre behavior of Sean’s autism, and we were determined to get him out,” she wrote in the book. “We used everything we had — our love, our rage, our frustration, patience, inventiveness, violence, ignorance, and humor... Somehow, it worked.”
As a youngster, Sean attended public school and squeaked by in his classes, but he struggled with behavior problems and yearned desperately to fit in with his peers. “It was always a little bit of progress, and then a little bit backwards,” his mother says of his struggles over the years.
At age 14, Barron determined that in order to make friends, he needed one thing: A sense of humor. He checked out joke books from the library, and when those didn’t get him laughs, he started watching “Gilligan’s Island,” memorized jokes from the show, and then repeated them ad nauseum. “[Every] single person in the world has [a sense of humor] except me,” he told his mom. It would be years before he learned the art of a two-way conversation, or the importance of empathy.
One day, when Barron was in high school, his mom summoned him to watch a television movie, “Son Rise,” about a boy with autism. He watched intently, and when it was over, he asked, “Mom, I’m autistic too, aren’t I?” She said yes and they talked for hours. It was a breakthrough for the entire family.
With his parents as coaches, Barron set out on a journey of self-discovery and learned, by trial and error, the basic social skills most children learn instinctively in their formative years. He graduated from high school and attended Youngstown State University, where he earned a degree in 1987 in early childhood development. After that, he found work as a teacher’s aide.
In 1990, Barron came up with the idea of writing a book about his experiences with autism. He proposed the idea to his mom, who he says was “kind of hesitant at first, because she didn’t want me to have to dredge up all those memories. But I talked her into it and we started writing.
“When I was working my way through [autism],” he explains, “my awareness level started to change. I started to see very clearly how my actions and behaviors affected other people, and that created a lot of guilt and a lot of anger towards myself, because I never intended to hurt people.... Writing the book was painful at times...but getting everything in print, and published, helped me to move past those negative feelings I carried around for so long.”
The book, and its heartbreakingly honest portrayal of life with autism, also brought the Barron family closer together. “With understanding comes awareness, and with awareness, that opens the door to closer relationships with people,” he says. “We learned a lot about each other.”
Judy Barron recalls traveling to New York City with Sean for meetings with book publishers, and discovering the man her son had grown into, seemingly overnight. “He was just this relaxed, confident urban guy in a sport jacket, sitting in these publishers’ offices, with all these people around him, and he was completely nonplussed,” she says.
Inspired in part by the success of the book, and also by his lifelong love of writing, eight years ago Barron decided to return to school; this time, he studied journalism. Today, he is finishing coursework for his master’s degree from Youngstown State and writes freelance articles — up to five a week — for the Youngstown Vindicator. He covers everything from breaking news to arts events. Journalism, he says, is his idea of “the opposite of autism.”
“When I had autism, I didn’t have the ability to empathize with people. It wasn’t that I was cold or heartless. It’s just that I didn’t understand or have the abstract ability to put myself in other people’s shoes,” he explains. “I was very isolated socially... You can’t do very well in [journalism] if you’re focused on yourself, if you expect things to happen a certain way. You have to have all the qualities that to me are the opposite of what I was like when I had autism.”
In 2005, Barron teamed up with best-selling author Temple Grandin — who is also on the high-functioning end of the autism spectrum — to write another book about autism, entitled Unwritten Rules of Social Relationships: Decoding social mysteries through the unique perspectives of autism (Future Horizons, 2005). The book is equal parts psychology text, memoir and self-help book for anyone affected by autism.
He was drawn to the project, Barron says, because “I want people on the spectrum to be successful and happy. They don’t have to be like Sean Barron. They can find those things in their own way.”
Barron starts every morning by saying a prayer. “I’m not a religious person,” he says. “I’m a spiritual person.” A daily prayer is one way he expresses his gratitude for being able to turn his life around, he explains.
Now, he says, “Each day is different, and there is something refreshing about that. I don’t have a repetitive kind of day, which is kind of ironic, because when I had autism, I hated change.”
Barron lives in the home that his grandparents once owned. He’s seated on a chair in his enclosed back patio when another car pulls into the driveway. “That must be my girlfriend, Barb,” he says, cheerfully. A petite, raven-haired woman with dark eyes lets herself into his house and makes her way to the porch. “Hi, I’m Barb,” she says, extending her hand. “I’m not sure if Sean already told you, but I was diagnosed with autism, too.”
Barbara Protopapa, 36, grew up in Youngstown and works part-time at the Rich Center for Autism at Youngstown State University and part-time for a local cleaning company.
The two smile, laugh and joke around almost constantly. They’re affectionate and loving toward one another. “Our relationship is just like any other,” says Protopapa. “We’ve had our disagreements and other challenges that any other relationship has.”
Both Barron and Protopapa refer to their battles with autism in the past tense. Although there is no known cure for autism, the two have learned to cope with the various manifestations of the disorder so well that people are shocked to learn of their backgrounds.
“A lot of times, people tell me, ‘I can’t believe you have autism. You seem so normal,’” Barron says.
He and Protopapa travel the country giving speeches to parents, psychologists, doctors and educators about overcoming autism.
Parents often approach him after such presentations to solicit advice. “Why does my child do this?” they’ll ask, or, “What is the best treatment to help my child?” Barron says he feels unqualified to offer any sort of advice; instead, he lends a supportive ear.
When parents first receive an autism diagnosis for their child, he says, “It’s a very traumatic thing. It’s a difficult piece of news to hear, swallow and absorb.” He encourages parents to try various treatments until they find something that helps, and most importantly, not to give up on the child or lose hope. “I don’t think it ever gets old telling a child you love him or her,” he says. “Just because they don’t respond doesn’t mean they aren’t getting it.”
“[Sean] is a person more filled with goodness than anyone else I know,” his mother says. “He wants to reach out to people. It’s kind of the reverse of everything he was when he was a child. He was so inward, and now he’s so outward.”