Chris Davis just danced. On the green rooftop of Tellus360, I sat with Bill Davis for more than an hour as we talked about his son, Chris. Slowly swaying and bopping to 80s rock coming from the smartphone next to us, Chris reached over now and then with a gentle touch to his father’s arm. Those four outstretched fingers meant Chris had something to communicate to his dad. Most of the time this act was followed by Chris pointing into his empty glass. There is kindness in Chris’ eyes, an acknowledgment of camaraderie going beyond the typical father-son relationship. The 22-year-old Chris wanted more Diet Coke.
“Drink your diet soda, drink your diet soda,” says Bill, pulling out of our conversation for a few seconds. Then he repeats himself, repeats himself again, and adds, “Go ahead.”
The repetition is necessary for Chris, but as a man living with severe autism, intellectual disability, and neurological disorders, he has become less dependent on the devices and patterns he once needed to complete even the simplest of tasks. Still, Chris needs to follow a schedule to maintain his equanimity. The day starts with a bath.
“Chris wakes me up. He grabs my glasses and gets me out of bed,” Bill says.
Chris likes hot water, hotter than average. He then routinely pours himself a soda.
“Then I have to say, ‘drink your Coke Zero, drink your Coke Zero, drink your Coke Zero, yeah. Drink your Coke Zero, drink your Coke Zero, drink your Coke Zero, go ahead,’” Bill explains as an example of the ritualistic nature of the everyday occurrence. After the bath, Bill goes over the days schedule of events.
“You can’t tell him too much, and you can’t tell him later in the day,” he says. If he becomes too excited about an upcoming event he’ll ask when—in his own, limited-verbal way—over and over again.
All of this is minute compared to Chris’ earlier life. As a youngster, Chris would not sleep and was in need of constant stimulation. He wouldn’t wear clothes. He hurt himself, smeared himself with feces, and wouldn’t eat. He lived on formula until the age of seven. The smell of food would make Chris gag. Bill couldn’t cough, sneeze, or create any other sudden, unexpected noise without setting Chris off. Lights needed to be dim. He held his bowel movements for periods as long as 20 days.
“I knew something was off, or wrong, when he was two years old. At that time, more than 20 years ago, nobody knew what autism was,” says Bill.
Ultimately, he found support—through much perseverance—at the Kennedy Krieger Institute’s Center for Autism and Related Disorders. Here, Chris got his diagnosis and Bill got a hint of hope, but other doctors wanted to institutionalize Chris.
“I was angry,” says Bill, who knew there was more for his son. He battled the hospitals and school systems, ultimately creating a personalized curriculum for Chris who graduated high school and now even attends college classes. “Chris must have the knowledge of Albert Einstein. He listens to WITF all day long. I imagine if he ever had the ability to just say things he’d spit out knowledge that was incredible.”
With a goal of happiness over measured successes, Bill has created a Make-A-Wish-like life for his son. Every day is an adventure, and Bill embraces each day by striving to make Chris happy. The little things, like hugs, outweigh any formal benchmarks in the science of autism treatment. They go to concerts. Chris loves the E-town fair.
There’s a lull in the music and Chris stops dancing. Here comes that touch again, tender and earnest, a far cry from the boy who would bite or hurt himself or others to get attention. This time, Chris doesn’t point to his empty soda glass. He marks an invisible T on the table with his finger.
“Excuse me,” says Bill, and begins his own series of marks, just below where the T was traced. They are going over the schedule for the rest of the day. “Just five more minutes, okay? Five more minutes.”
Chris nods. He resumes dancing as Prince starts playing.
“Every time we go to a concert, he wants to be in the center of the mosh pit. I don’t want him to be in the mosh pit!” says Bill, smiling.
The whole experience has led Bill to pen two books, Breaking Autism’s Barriers: A Father’s Story and Dangerous Encounters—Avoiding Perilous Situations with Autism (both available on Amazon – see links below); he’s also created a GoFundMe campaign to help offset Chris’ expenses.
It’s a hard, but happy life… and Bill is more than happy to embrace it.