Marina Sarris

Date Published: March 13, 2024

For Sherry Durbin, there was never a question that her son Bobby would do everything, and go everywhere, his family did.

Bobby was diagnosed with autism and intellectual delay three decades ago, before autism was well known. Sherry and her husband, Scott, made sure Bobby took part in church, sports, and community activities, even when people stared or commented on his behavior and limited speech.

That may be why, at 35, Bobby Durbin is a big part of his community. He works part-time at a parcel delivery service, greets churchgoers at the door on Sunday, and volunteers at many of the events for which his hometown, Louisville, Kentucky, is famous. You may see him handing out refreshments to people at the annual Kentucky Derby Festival, giving medals to marathon runners, helping at the Veteran’s Day Parade, or carrying a flag in the Parade of Cultures at WorldFest, an international festival.

“Everybody loves him now. I think they loved him back then; they just did not understand,” says Sherry, who participates with Bobby in the SPARK autism study.

Teaching a Community about Autism, One Person at a Time

When Bobby was born, few people understood autism, which was considered to be rare. Only 1 in 2,500 people were estimated to have autism back then,¹ compared with 1 in 36 children today.

Sherry herself did not understand autism. But she did know something about including and accepting people who are different. She grew up in a rural part of Tennessee, where children with Down syndrome and cerebral palsy helped their parents bale hay and snap beans, just like their brothers and sisters, she says.

Why wouldn’t she raise Bobby to do everything his big brother did?

So the Durbins took Bobby everywhere, helping others understand and embrace his differences, one person at a time.

“If we were volunteering for a cleaning day at church, he came with us, and he helped. I don’t care if he’s cleaning a window or sweeping a floor or picking up sticks. He was part of what was going on,” she says matter-of-factly.

When someone was concerned by Bobby’s autism traits or behaviors, Sherry did not get angry or defensive. She just found a practical solution and, when needed, gently set the person straight.

“I had to laugh because we had one parent say, and I loved this parent, that we just needed to spank his butt to make him sit down. They just don’t know,” she says.

She would bring toys to distract him at church. When she could tell that Bobby was overwhelmed and on the verge of a meltdown, she would take him to a quiet place. “I would give him a minute, or more than a minute, to find himself and then we’d go back.”

When Bobby was 4 or 5, some children asked her why he never talked to them. “I said, ‘Well, God made him special, and he can’t talk right now, but if you go play with him, he’ll be just fine.'” Bobby began to speak a couple of years later, she says.

Once a Bible teacher told Sherry she was afraid of Bobby. Sherry decided to sit with Bobby during Bible class to help him, even though she didn’t know what the teacher was afraid of. “I don’t think she meant it the way she said it. She just never worked with someone like Bobby.”

The Durbins did not allow other people’s misperceptions or low expectations about autism affect how they raised Bobby.

Some people asked her why she read to Bobby. “People said, ‘Well, he don’t know what you’re reading. And I said, ‘You don’t know what he knows.'”

“I never held him back,” Sherry says. “You can’t let other people tell you ‘you can’t take him to church’ or ‘you can’t take him to this restaurant.'”

Finding Community in High School and Beyond

In high school, Bobby took part in the U.S. Army Junior Reserve Officers’ Training Corps (JROTC) program, like his brother did. Bobby and his fellow JROTC cadets volunteered at the annual Derby Festival, two weeks of events including a steamboat race, parade, a marathon, concerts, food, and fireworks. The festival leads up to the Kentucky Derby horse race in May.

The Durbins continue to volunteer for the annual festival, where they help people find their seats, hand out sodas and snacks, and distribute medals to marathon runners.

Bobby enjoys telling festival-goers ─ and anyone else ─ about his favorite professional football players. He knows each player’s college, jersey number, position, height, and other statistics.

After the 2024 Super Bowl, when many fans were talking about Kansas City Chief  Travis Kelce, Bobby wanted to talk about another Kelce: “Jason Kelce, the Philadelphia Eagles, 6 foot 3, number 62.”

His favorite player of all time? He doesn’t hesitate to answer: “Bradley McDougald, 6 foot 1, number 30, Seattle Seahawks, from the University of Kansas.”

Bobby’s ability to absorb football statistics that he reads online amazes his mother. “It’s a talent. I wish I could figure out what he could do with that talent.”

Bobby works part-time, with benefits, at the same parcel service where Sherry works, although they have different shifts and duties. Bobby unloads bags of small packages and envelopes onto a conveyor belt that takes them for sorting, says Sherry, who is a mechanic there.

On Saturdays, he often takes the bus to go shopping. It’s a skill that a vocational service provider once doubted he had, so Sherry told the woman to travel with Bobby and see for herself.

He enjoys many of the same activities as the rest of his family with one exception: he never liked his mother’s motorcycle, she says.

Looking for a Genetic Cause for Autism

Sherry’s desire to learn more about autism led her to SPARK, the largest study of autism. She wondered if there was a genetic link because some relatives have autistic traits.

Sherry and Bobby submitted saliva samples to SPARK, where researchers are uncovering genetic variations that contribute to autism. SPARK did not find any of the known autism genes in Bobby’s DNA, Sherry says. Researchers will check again when new genes are found.

Sherry has a much better understanding of autism than she did 33 years ago, when Bobby was diagnosed. But there is so much more to know. “To me, autism is a little word for a big thing, a spectrum that is so large.”

Through it all, she also knows that Bobby has a community ─ family and friends ─ that accepts and understands him.

Interested in joining SPARK? Here’s what you should know.

Photo by Timothy D. Easley / Easley Photography. Reprinted with permission.

References

1. Ritvo E.R. et al. Am. J. Psychiatry 146, 194-199 (1989) PubMed