At 16, Cynthia Robinson was told she could never have children because of a rare health condition.
It was life altering she said when she discovered at age 27 that she was pregnant with her son Hayden.
"I wasn’t supposed to be able to physically do it," Robinson told SC Public Radio at her home in Lugoff. "The last two months that I was pregnant with Hayden, I actually had to stay in Richland hospital because I was just so high risk. Either I was fine, or he wasn’t. It would go back and forth. And then, finally, we delivered three months early. I was 26 weeks when I actually delivered Hayden."
Hayden’s tiny body measured at just 12 inches long, the size of a ruler.
"He was just a little, itty-bitty thing. And I’ll never forget it, because, of course, I had to be put under because the anesthetic stuff did not work for me with my C-section," Robinson recalled. "So, the nurse ended up taking my mom’s phone and snapping pictures of Hayden for me. And they said, ‘Well, when he came out, he wasn’t breathing but he was swinging.'"
It was at the hospital, not long after Hayden was born, that Robinson learned her son could be at higher risk of an autism diagnosis.
That linkage — premature birth and the risk of autism — was the focus of a pilot study run by the Carolina Autism and Neurodevelopment Research Center, known as CAN, at the University of South Carolina.
Robinson agreed to be part of the study, opening the door for resources and home visits.
By his third birthday, Hayden was diagnosed with Level 3 autism — the most severe on the autism spectrum disorder.
"I think it was pretty surprising to us to see such strong associations (in the pilot study) between these two measures, heart rate and temperature in the NICU (neonatal intensive care unit). And then autism symptoms a year later," said Jessica Bradshaw, an associate professor in USC’s psychology department, who is also an executive member of CAN.
Bradshaw and Robin Dail, a research professor in the College of Nursing and the former director of the Perinatal Pediatric and Family Research Center, have taken that research and embarked on a first-of-its-kind five-year study funded by the National Institute of Health to look at the linkage.
The pair and their team will follow 260 babies, some weighing under two pounds, born in the Midlands and admitted to the NICU right after birth, until they reach 3 years old.
Their team will track the infants' heart rate and temperature in the NICU that could help offer early signs of an autism risk. And they’ll visit the homes to do developmental assessments to give the families, both said, a circle of support.
Autism is a neurodevelopmental disorder that affects everyone differently.
It can impact how people communicate and process information and can affect their social skills.
One in 31 8-year-old children — just above 3% — were identified with autism, according to a 2025 Centers for Disease Control and Prevention report based on 2022 data that tracked 16 states.
And boys were three times as likely as girls to be identified with autism spectrum disorder, the report said.
After the release of the CDC report this spring, Health and Human Services Secretary Robert F. Kennedy Jr. called for studies to determine what specifically has contributed to the rise in autism diagnoses.
Many autism researchers cite the increase in part because of more awareness about autism and its symptoms, in addition to better reporting.
The CDC report says the national public health agency's Autism and Developmental Disabilities Monitoring Network "continues to report overall increases in ASD prevalence estimates since monitoring began in 2000."
Preterm babies, particularly babies born before 32 weeks old, face a higher risk of autism, USC's Bradshaw and Dail said.
Dail said they are a good group to study because "their systems are so immature, and they can't tolerate the stress."
" We’re really studying stress intensely. And if we show that more stress to these very preterm infants is leading to more diagnosis of autism, then we really need to focus on decreasing the stress to the babies in the NICU to help impact that diagnosis," Dail said. "And we don't know that that's going to be the outcome, but we are following it to see if that will be the outcome and if that makes a difference."
The goal of the study is not to prevent autism, but to better understand the signals — what doctors and parents should be looking for — from the start.
"I think in terms of science and research, we're interested in understanding this link between preterm birth and autism so we can really understand more about mechanisms of autism," Bradshaw said. "And then ultimately the goal, the second goal is to be able to identify earlier so that we can develop and provide supports to these infants and their caregivers and their families to improve overall health and wellbeing."
Back at her Lugoff home, Robinson, now 31, said she’s had to adjust to a different parenting experience than others.
Hayden, who can now say about 15 words and walk on his own, has good days and bad.
He has his routine.
But, like any parent, Robinson said she’s learned to enjoy the small moments.
And she’s grateful, she adds, for the study helping her to get there.
"It’s those little moments of him coming around here and climbing up on the couch and then looking at me, jumping, like, 'Hah hah. Did it,'" Robinson said. "These little moments are everything for us."
Raising Hayden has also given Robinson a desire to help other parents, just like her.
In November, she’ll start that journey — by entering nursing school.
