The Preemie with a Fighting Spirit
Date Published: May 27, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first families who joined.
Hunter Carlton came into this world with a tiny body ― just 2 pounds, 7 ounces ― but a large spirit. He fought a severe infection and other complications from being born 13 weeks too early. He amazed the nurses at the hospital when he wedged himself into odd places in his incubator.
“His nurses said, ‘You’re going to have your hands full with this one,'” recalls his mother, Candida Sedillo.
And she did. By age 1, Hunter could not eat solid foods yet or talk, and he slept poorly. But he could walk, run, and figure out ways to escape. His mom found out about that last one the hard way.
One day she was ironing clothes while keeping one eye on the toddler. Suddenly he disappeared. She searched under the beds and in the closets, thinking he could not possibly leave the house. She ran to get a neighbor to help her look outdoors. They found him, two blocks away, happily walking down the sidewalk with a push toy. Somehow, she says, “this little shrimp of a kid, as big as a minute, could reach the doorknob.” Some young children with autism wander or run from safe places, a behavior called elopement. But no one knew he had autism then.
By the time he was 3, Sedillo heard the words she had been expecting: Hunter has autism, a specialist said. She had researched his speech and behavior symptoms online and “autism” kept popping up. Autism is much more common in children who were born prematurely.1
Sedillo’s online research led her to SPARK, a scientific study that is looking to understand autism. SPARK collects saliva samples from study participants in its search for genes that contribute to autism. Sedillo enrolled herself, Hunter, and his younger sister. “I am very interested in the DNA analysis,” she explains. To show support for SPARK, her family appears in several photos marking SPARK’s fifth anniversary in 2021.
From the NICU to an Autism Diagnosis
Hunter is a fighter. When he was still in the newborn intensive care unit (NICU), he suffered a bout of necrotizing enterocolitis, an infection that damaged part of his intestine. Doctors placed two tubes in his abdomen to help with feeding and intestinal problems. He also takes food by mouth.
After his autism diagnosis, Hunter met with a developmental specialist in Georgia, where they live. His mother often took his younger sister, Alexandria Carlton, with them for those appointments. At one visit, the specialist told Sedillo that Alexandria also needed a developmental evaluation.
Although she expected Hunter’s diagnosis, Sedillo was surprised when a doctor told her that Alexandria has mild autism. She knew her daughter, a spunky 3-year-old nicknamed “Miss A,” had trouble paying attention, but her symptoms seemed different from Hunter’s. According to research, some girls with autism may have fewer repetitive behaviors and appear more social than autistic boys. “The more I paid attention to what she was doing, I could see the autism then,” says Sedillo, who also has two grown children living in other states.
Hunter and Alexandria, who are 20 months apart in age, are close. In fact, they began to talk around the same time, their mother says.
Challenges and Strengths in Autism
Hunter has significant struggles with certain academic and social skills, but he also does things that astound his mother.
Even as a preschooler, he figured out a way to outsmart the door latches his mother installed to keep him from leaving their home by himself. She installed the latches well above his reach. One day she stepped outside for a minute, and Hunter used a broom handle to flip the door latch shut. Locked out of her home, Sedillo peered inside a window to check on Hunter. “He was just standing there, smiling, looking at me, and clapping.”
Today, Hunter is a 13-year-old technology whiz. In fact, he has outsmarted some of the safety controls his mother put on his cell phone.
Like some people with autism, Hunter is very trusting and may not recognize when people are lying to him,2 his mother says. “He was giving out his address and phone number to people he didn’t know online because, to him, they weren’t strangers because he knew their names. He was FaceTiming them. I’m like, ‘Dude, no!'”
To keep Hunter safe online, she removed the SIM card, which is needed to connect to cellular service, from his phone. She also restricted his access to the internet through Wi-Fi. Yet he somehow manages to get online without her permission. “He still goes on Walmart.com and looks for pants,” she says. “How do you do that?”
Sedillo advocates for her children to get the help they need at school. Alexandria, 11, no longer has an Individualized Education Program (IEP) or even a plan for receiving accommodations for her autism. “They say, ‘Oh, she’s too smart,'” Sedillo says. But, at least to her mother, “she has a lot of the same tendencies as Hunter.”
Hunter is assigned to a seventh-grade special education classroom. But he does not receive autism therapies such as Applied Behavior Analysis (ABA) there. His mother has arranged for him to have ABA at home to help him manage his behavior and prevent meltdowns.
Bullying and Autism
He has run into discipline problems at school when bullies have provoked him, she says. Research shows that autistic children are more likely to be bullied than others.
For example, some teens smacked him on the head, as part of an online fad. Hunter did the same thing to them, but they reported him to a teacher, she says. Hunter was the one who got in trouble.
Another time, a student called Hunter an “idiot,” a curse word, and a racial slur during lunch. Sedillo says that her son did not really understand what the slurs meant, but he knew they were offensive. He told a teacher what the other student had said, but the teacher did not believe him. Hunter tried to convince her, but that backfired. “Hunter got in trouble for disrespecting the teacher,” Sedillo says.
Moving Forward with SPARK
Sedillo became interested in SPARK after it launched in 2016, but she was not able to submit saliva samples for DNA analysis until late 2019. As of mid-2021, she had not received any genetic news from SPARK.
In addition to investigating genetics, she hopes that autism researchers will look at how both parents’ environmental exposures may affect their children. Sedillo is interested in chemical exposures because her late father, a Vietnam veteran, was exposed to Agent Orange, a strong herbicide used to remove jungle plants during that war. Agent Orange has been linked to health problems in veterans and spina bifida, a spine condition, in their children.
Sedillo hopes that research will help improve the lives of autistic people. “I want all of my kids to have the best they can have, as all parents do,” she says. “It’s been harder with the two younger ones to get what they need.”
Interested in joining SPARK? Here’s what you should know.
Photo courtesy of Candida Sedillo.
See a SPARK article, “The Link Between Autism and Prematurity.”