To explain living with autism, stories of kindness and challenges
When Lynn Ricci wrote about people she’s grateful for, grocery store clerks ranked high on the list.
Ricci’s 18-year-old son, Lincoln, has autism. When he meets people, he sometimes asks a seemingly endless list of questions about their name, house, mailbox, whether they have a pool or a basement, and other details. She’s grateful for the people in the checkout line who respond with smiles and kind words.
“I now know the clerks in the store. I know who I can go to and who will talk [to him] through the line,” Ricci said in an interview. “It makes a huge difference because it’s a part of everyday life. I want to take him with me but I also want to have a good outcome.”
Ricci wrote about grocery clerks and others for “Spectrum of Kindness,” an online collection of stories gathered from people affected by autism and presented by the Hospital for Special Care in New Britain, where Ricci serves as senior vice president and chief operating officer.
It’s intended to give families and others affected by autism a place to acknowledge kindnesses that have made a difference.
It’s also a way to show others what it’s like to have a child with disabilities — and to offer guidance for people who don’t know what to do when they encounter someone with autism.
“People do sort of look past you,” Ricci said.
She thinks it’s because they don’t know how to respond.
“If you said to somebody standing next to you in a grocery store, ‘Don’t look away when I’m standing next to you, this is my kid,’ they would want to do the right thing. They just don’t know what the right thing is,” she said.
Ricci ended her story on the website with this advice: Treat him or her “as you would want your child treated; smile, make eye contact, be patient and most of all, embrace their unique qualities.”
“We’re trying to take some of the fear and stigma away from it, to say ‘OK, now that it’s here, what are we going to do with this really kind of pandemic population that’s growing?’” she said.
The prevalence of children diagnosed with autism has been growing, according to federal data.
A recent report indicates that about one in 68 U.S. children have been identified with autism, up from one in 150 at the start of the decade. Among boys, one in 42 has autism, compared to one in 189 girls, according to the report, which was based on the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network.
In Connecticut, more than 5,000 children under 21 have been identified as having autism, according to the Hospital for Special Care, which has a center for children and adolescents with the disorder.
Many of the Spectrum of Kindness stories are from parents, describing a person who played a pivotal role in their child’s life.
Melissa Willette wrote about the little league coach who helped her son, an apprehensive player with autism, gain a sense of belonging on the team. Patty Raymond wrote about her son, who began high school with no friends and unable to take the noise in the hallways, but had a gym teacher who made him the assistant in class and helped him feel important.
“To this day he likes to talk about his experience in Mr. Stango’s class,” she wrote of her son, now 22.
A man submitted a video describing what happened after the choir director at his family’s church suggested that his son, Ryan, join the youth choir instead of sitting in the back with adults as he usually did. They agreed.
“A lot of the kids that are in church that wouldn’t normally come and talk to Ryan or kind of look at him as, ‘Why doesn’t he talk?’ or ‘I don’t want to be his friend’ have now accepted him,” he said, beaming. “I’m so blessed for that.”
A woman named Ellen recorded a video about two women who helped her while her son was having a meltdown in the parking lot while grocery shopping.
Ricci said the stories also show how varied autism is.
“While it has limitations, there are many folks who have autism who can be potential employees, and certainly go on to college, and it isn’t one size fits all,” she said.
Madison resident Hannah Jurewicz submitted a video featuring her daughter’s Girl Scout troop, which includes a girl named Amanda who has autism. Their local state representative, Noreen Kokoruda, had suggested they make a video about inclusion.
But Jurewicz found herself stumped about what the video would say.
“We don’t think of it this way,” she said. “We might have a tougher time trying to include people with different views than we do with somebody who may or may not have autism.”
When Amanda joined the troop, there might have been some confusion among the other girls about why she didn’t have to take her turn or might be looking in a different direction. But Jurewicz said the girls were young enough that some who didn’t have autism also got distracted.
And now, if Amanda needs help, they “wrap around her,” Jurewicz said. If they’re on a team, they coach her about what she has to do.
“They’re more concerned with issues like bullying and getting citizenships in developing country, because there are bigger issues in the world than whether Amanda has autism,” she said.
Jurewicz has made sure the girls learn about the challenges other people face, giving them awareness exercises like navigating obstacle courses while having to rely on someone else’s sight or getting around on a skateboard as if it were a wheelchair.
She’s passionate about it in part because of her brother’s experiences growing up. He has disabilities that Jurewicz believes are autism but was never diagnosed. He struggled through school and got bullied.
“He has paid for this his entire life,” she said.
Jurewicz came up with the video idea during a field trip, when the girls were singing together in the back of a car. The video shows the girls singing. Amanda is among them, but Jurewicz said it would be hard to figure out which one she is from watching.
“My message is my relationships, whether it’s my brother or with Amanda, those are some of the most precious relationships I know because it forces me not to take things for granted,” she said.
People can submit stories or videos to Spectrum of Kindness by clicking here.
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