COVID-19: Click here for an updated message from our principal investigator, Dr. Wendy Chung.

Discover SPARK

A Father’s Tale

Emily Singer

Ten-year-old Christopher Smigle doesn’t talk a lot. But he gets into his share of mischief. He likes to play jokes on his father by changing the password on the family X-box. And he’s reset the password on six of his school’s iPads. “They called me to ask for the password—I said, I don’t know, ask him,” says Christopher’s father, John Smigle. “I work in IT, and there are things he does to my computers that I have no idea how he did it.”

Smigle wants to better understand both his son’s special talents and the areas where he struggles, like speech. That’s part of what inspired him to enroll Christopher in research studies. Christopher has participated in studies of language delay, trying different therapies designed to improve speech. But the therapies had little impact. “They relied a lot on technology and didn’t get into why he’s not speaking at level he should be,” Smigle says.

Smigle, who lives in Ontario, NY, first learned about SPARK from a Facebook post on a friend’s page. He particularly liked the genetic focus of the study. Smigle also appreciated how the SPARK site outlined the project’s goals. “It said ‘here’s what we want to do and what we’re hoping to accomplish,” Smigle says. “I hope through all this testing, you can find out a root cause. I want to not just treat symptoms but hopefully figure out someday what’s wrong and work on treatment that way.” In the meantime, Smigle is adamant about treating Christopher like any other ten-year-old. He fought to keep Christopher in a typical boy scout troop, rather than one for children with special needs. “He loves it, it’s great for his social skills,” Smigle says. In fact, Smigle says the first time he saw his son show true emotion was during an award ceremony for the scouts. Christopher didn’t win an award that he had hoped for, and he teared up as the winners went on stage to be recognized. “I waited ten years of my life for him to be happy or sad or something,” Smigle says. “He was sad, but it made me happy.”

Smigle includes Christopher in all the family’s activities, from boy scouts to camping, bowling and baseball. “My son loves baseball,” Smigle says. “He’s not great at it but still has a blast playing with other kids.”

Christopher, who is very interested in community service, wants to inspire more people to participate in Light It Up Blue, an international campaign where homes and buildings display blue lights as a sign of support for autism on World Autism Awareness Day, April 2. Last year, Christopher convinced the hospital where his father works to take part by writing a letter to the CEO. This year, a police officer and parent from Christopher’s boy scout group brought several officers to the event to show their support. “People love him, they want to do things he’s involved in,” says Smigle.