White Knights

Early last year, New Albany residents Marci Ingram and her husband Bill, CEO of White Castle Systems, announced a $10 million gift to The Ohio State University and Nationwide Children’s Hospital for collaborative autism research.

It underscores a most personal journey: Fifteen years ago, their son was diagnosed with autism. Then, the odds of an autism diagnosis were 1 in every 10,000 children. Today, it’s 1 in 110.

There comes that awful moment, long before the pediatrician has voiced suspicions or the specialists have gathered, when the parent knows with certainty: Something is wrong with my child. Perhaps it’s a repeated lack of response to a smiling face, no interest in peek-aboo, a delay in talking or walking, or a deficiency in fine motor skills. Wherever that certainty comes from, it’s devastating.

Seventeen years ago, the Ingrams faced just such a moment. Their little boy, then 2, was minimally verbal. He had a hard time transitioning from one place to another. Loud noises were overwhelming. Certain textures of clothing, especially tags in the back of his shirts, irritated him.

absence of social skills, and repetitive behaviors are ASD hallmarks.

“When you get a diagnosis like that,” Marci says, “it feels like a death. You’re mourning all the things your child won’t do – be independent, hold a job, have relationships. Anger kicks in – the ‘why me?’ But I decided to be positive. I wouldn’t give up.” Hoping to avoid stigma, doctors advised the Ingrams to keep the diagnosis secret, which they did for the next 11 years.

behaviors were reinforced, inappropriate ones redirected. “ABA motivates a child to learn by rewards. But when Skittles and stickers don’t work anymore, you have to find new motivation,” she explains.

“At the time, insurance didn’t cover it, so we paid for it ourselves. It was like running a business – holding team meetings, scheduling – with Dr. Wynn as our consultant,” Marci says. For third, fourth and fifth grade, their son was mainstreamed into public school in Upper Arlington, discreetly assisted by a classroom aide. Three years of home schooling followed. For high school, he was enrolled in a work/study program at Graham School, a Columbus charter school. “He worked in a Clintonville bakery,” Marci says, “mopping floors, making cookie dough.” She adds, smiling, “He was very good at crafting wedding cake flowers.”

“When you get a diagnosis like that, it feels like a death... Anger kicks in – the ‘why me?’ But I decided to be positive. I wouldn’t give up.”

- Marci

Ingram

The Ingrams’ pediatrician took a waitand-see approach. Marci meanwhile enrolled their son in preschool at Columbus Speech and Hearing, hoping to jump-start his verbal skills. “But my close friends were frank,” she recalls. They noted he was not only behind verbally, but socially challenged as well. Finally, at 4 ½, he was diagnosed with autism. Autism spectrum disorder (ASD) encompasses autism, Asperger syndrome and pervasive developmental disordernot otherwise specified (PDD-NOS). All are neurological-based conditions impacting development, ranging from mild (or high-functioning) to severe. Delays in language and communication, an

Marci found an applied behavior analysis (ABA) program, one of the few in Columbus at the time, to provide intensive behavioral intervention at home for her son. She joined a support group at an Upper Arlington church and engaged doctors at Nationwide Children’s Hospital and UCLA’s Lovaas Institute, the highly-regarded autism center. Its director, Dr. Jacquie Wynn, agreed to serve as the Ingrams’ consultant for the next three years. In 2000, Wynn moved to Columbus to become director of the Center for Autism Spectrum Disorder at Nationwide Children’s Hospital.

For five years after the diagnosis, Marci oversaw the ABA program in her home: 32 hours per week, with seven tutors rotating in two-hour blocks, breaking down skills into small tasks, dotting the day with exercise breaks. Desired

In 2008, Marci decided to go public about their son’s condition. “It was like the weight of the world was off my shoulders,” she says. That year, she co-chaired the first Walk Now for Autism in Columbus, and she continues to be involved in the event to this day. White Castle began fundraising campaigns for Autism Speaks, the autism research and advocacy organization. In 2011, the White Castle Walk Now team raised more than $500,000.

But it’s the Ingrams’ major gift of $10 million to Nationwide Children’s Hospital and OSU that has already begun to impact autism research. Studies in genetics, pharmaceuticals, nutrition and sleep intervention have been green-lighted, says Marci, who serves on the oversight committee for the collaborative initiative.

What accounts for the dramatic increase in number of autistic children? Environmental factors, genetics? Dr. Eric Butter, research investigator at Nationwide Children’s Hospital, says researchers are examining those possibilities.

The Ingrams turn their son's autism diagnosis into widespread hope