Photograph courtesy of Marty Pieratt

Carter Pieratt, left, and his father Marty have both lived their entire lives in the Ohio River Valley. Carter, who is 22 today, regressed from a "mouthy little toddler" into an autistic child at around age 3.

Marty Pieratt's awareness of autism began when the 1988 movie Rain Man was being filmed in Cincinnati, a year or so before his son, Carter, was born. Pieratt worked as a reporter on local television, and his editors assigned him stories on autism, Dustin Hoffman and Tom Cruise. In the movie, Hoffman plays an autistic savant, Cruise his long-lost brother.

"I can remember doing stories on autism," Pieratt said. "But little did I know that I'd personally be faced with the quintessential autism story."

Carter was born on "12-11-87," Marty says lyrically, and for the first three years of his life, "He was perfect, a mouthy little toddler." But soon after the family purchased a small farm in Walton on the Kentucky side of the Ohio River Valley about 20 miles from Cincinnati, Marty noticed his son had an unusual fascination with the grass after mowing. Carter also ran wind sprints, over and over again.


'Autism and the Indiana Environment Blog'

The more Marty's wife, Cathy, read about their son's symptoms, the more the family became convinced that Carter was autistic. When he was about 5, they drove north to the Indiana Resource Center for Autism at IU-Bloomington, where they filled out a questionnaire of about 100 questions. "He was affirmative on like 80 percent of them," Marty says.

Marty and Cathy Pieratt, history now shows, have lived the past 22 years on the front edge of the American autism epidemic. No one knows how many kids actually had autism when Carter was born, but diagnoses were rare back then. According to the Indiana Department of Education, only 136 Hoosier children received special education for autism in 1990. Over the past 17 years, the number has ballooned to 9,236.


'Autism and the Indiana Environment Blog'

"There was so little known about it at that time, you know?" Marty says during an interview in his office on the IU-Bloomington campus, where he is a visiting lecturer at the IU School of Journalism. Indeed, physicians at Cincinnati Children's Hospital at the time told the Pieratts that Carter suffered from "sensory integration" problems.

"We thought, 'Well, sensory integration, we can fix that, that's a hearing issue,'" Marty says. "Never once did they mention autism. They said he has to work on his sensory integration, whatever the hell that was."

***

Not only was Carter's condition actually autism, but the Pieratts were left pretty much on their own to face their fate. Indiana law mandates that school districts identify children with developmental disabilities like autism and provide them with "free and appropriate education," for example. But Carter never received such services from the Jennings County school system, where he spent most his school-age life.
"Never once did they mention autism. They said he has to work on his sensory integration."
Marty Pieratt grew up in Jennings County, about 20 miles north of the Ohio River, and he moved his family back there when his dad died in 1993. That was just before Carter turned 6, three years after the onset of his symptoms, which included decreasing reliance on verbal communications and odd behaviors, like putting his pants on backwards. "They didn't know quite what to do with him," Marty says of the schools.

Despite his emerging problems, Carter spent his preschool days in regular class. But by kindergarten, his developmental deficits couldn't be ignored, Marty says. "He could do the work with all of them, but he needed somebody, an aide or somebody, to say, 'Come on, keep doing it.'"

Indeed, Carter was the first and best reader in his class, and reading is a skill he carries with him to this day. While he may only say 10 or 15 words a day, 22-year-old Carter Pieratt can read out loud like nobody's business.

The Jennings County school system sometimes provided Carter with an aide; other times officials said they couldn't afford the luxury. The Pieratts offered to pay, but school officials would have no part of it. The family could have taken the school corporation to court but chose not to.

And in a pattern that persists to this day, when Carter was left on his own in school, he regressed. "He was left by himself a lot," Marty says. "And when that would happen, he would fall back."

While Carter was on the path to graduate, after his freshman year Marty and Cathy just didn't think it was worth it anymore. They tried home schooling for a while and then found what Marty calls the "Option Method" for treating their son, and their focus shifted.

"We started saying, 'Let's help him try to come out of autism as best we can,'" Marty says.

***

During a 45-minute conversation in his office in the Journalism Annex one block from the Student Union, Marty Pieratt uses the term "blessed" several times. He was blessed with three healthy daughters -- Chelsey, Marlayna and Callie Jo -- who loved and cared for their brother, and a wife who could and did stay home with their son.
"We started saying, 'Let's help him try to come out of autism as best we can.'"
To his list of blessings, Pieratt adds discovery of the Option Method. Also known as "The Son Rise Program" at the Autism Treatment Center of America in Sheffield, Mass., the Option Method recommends acceptance, energy, excitement and enthusiasm as tools not only to treat autism but to possibly cure it, Marty says.

Cathy went to a convention on the center's Berkshire Mountains retreat and "came back all fired up about these people," he says of center founders Barry Neil and Samahria Lyte Kauffman. "There was an NBC movie done about them called Son Rise. That's kind of where they started."

The 1979 movie tells the story of the Kauffmans, whose son Raun was autistic. Professionals said he needed to be institutionalized, Marty explains, but the couple resisted. Instead they spent time alone with their son in a room, and they joined in his activities, unusual as they may have been.

Inside that room, Raun was in charge. "If he would rock, they would rock," Marty says. "If he would spin, they would spin. And slowly and surely, after doing that for hours and hours and days and days and months and months, slowly and surely he started connecting with them."

The story the Kauffmans tell is that Raun eventually came out of his autism totally and graduated from Brown University with honors. "Now he's like their chief financial officer," Marty says. "He goes around and speaks."

Marty and Cathy trained in the Option Method and set up a room to practice it with Carter. They also pay a South Carolina woman with extensive training in it to come to Indiana and work with him.

"That's the only thing we've been able to hang our hat on," Marty says. "There haven't been any miracle stories for us."

***

Pieratt says he has also been blessed with the financial resources to provide for Carter's considerable needs. "When I was in TV, and he was a kid, I was making pretty good money," Marty says. "It was a union shop, and we were good in the ratings, and we had Jerry Springer as our leader, so everything was going good."
"It is a huge, huge financial burden. ... I mean, it's a tough thing."
He made enough to "throw money" at whatever came along -- diets, conventions, seminars, people, "whatever we could find," he says. There were some dry years, to be sure, but at one point Marty put together a radio group of seven different stations. "I had some cash," he says.

Considerable cash is needed to provide for children with autism. In June 2007, the U.S. Vaccine Court in Washington, D.C., for example, ruled that a child who developed autism after receiving vaccinations required an estimated $30,000 to $40,000 in services per year for his condition.

Through Carter's life, the Pierrats have anted up for hearing tests, motor skills training, psychologists, parental training and aides to help their son. One week at the Autism Treatment Center of America costs $14,000.

"It is a huge, huge financial burden," Marty says, adding that he bleeds for those who aren't as blessed. "I don't know what those people do. I mean, it's a tough thing."

Carter was on a waiting list 11 years before receiving a Medicaid Autism Waiver that qualifies him for health care provided by the state. "I hear today it's 30 years in Indiana on the waiting list," Marty says.

***

The fact is Marty Pieratt's journalistic work on Rain Man marked the first time he thought about autism; it wasn't his first exposure. That came as a child growing up near the Muscatatuck State Hospital just outside North Vernon, Ind. The facility started in 1919 as the Indiana Farm Colony for Feeble Minded Youth and at one time held about 2,000 kids, he says.
"2010 is the toughest time to have my child have autism. He's a 22-year-old man. He's 6-2."
"Looking back, Muscatatuck was full of autistic people," he recalls. "I grew up around that. Those kids would come with their families to my mom's little restaurant. I'd ride my bike out there."

With the benefit of hindsight, Marty almost sees his life with Carter as destiny. "There's been autism all around me, so it's like I've been ordained to be a guy who could have the patience to put up with it," he says.

And just in the past couple years, he has come to understand the greatest challenges are ahead. "2010 is the toughest time to have my child have autism," he says. "He's a 22-year-old man. He's 6-2. He needs to shave every day. He needs to shower everyday. He wishes he had a girlfriend. He wishes he had friends."

Since Chelsey, 24, and Marlayna, almost 20, left for school, Carter has indicated that he expected to finish high school and be involved in choirs and bands like his sisters. He thought he, too, would go to college.

"It's harder now than it ever was," Marty says, noting that Carter has actually regressed in the past couple of years. "In many ways, he does as little verbally as he's ever done. I don't know if it's partly the realization that he's different, and this is kind of a permanent thing maybe, he's thinking. Also his sisters are gone, except for one."

***

In high school, Carter spent some time alone. He could microwave pizza, fix himself sandwiches and perform other basic functions independently. But as he got older and his sisters left for college, that changed. "There's no question he went backwards," Marty says. "We're still trying to recover from that."
"What do parents of autistic people do when (the parents) are 70 and 80?"
Regardless of why he regressed, the family strategy changed. "We try to never have him home alone," Marty says, noting that he's heard of special needs kids who have choked on hot dogs and peanut butter. "He loves hot dogs and peanut butter."

In a few short months, Carter also lost 40-plus pounds. He had the weight to drop, but losing so much in such a short period was alarming, Marty says, so the family had a battery of medical tests run on him. The results showed Carter in good health, but the episode drew attention to issues previously unconsidered.

Pieratt is 52. "What do parents of autistic people do when (the parents) are 70 and 80?" he asks.

He doesn't want his girls to think that they must redirect their lives to take care of their brother. "They might," he says. "They love him. They enjoy him. But we don't want them to decide what they're going to do and where they're going to live and who they're going to marry and how their lifestyles are going to be based upon their brother."

Carter's college fund became just the Carter fund to provide his needs, and with the Autism Waiver, he could go live in a group home, and the state would pay for it. "We don't want that," Marty says. "We want him with us."

But given the magnitude of the autism epidemic and the limited few who can get the Autism Waiver, Marty fears for those families not as blessed as his.

"What do they do?" he asks. "What are they going to do?"

Steven Higgs can be reached at editor@BloomingtonAlternative.com.