On a Monday afternoon, the Hinsons are going full throttle.
Kristin Hinson, mother of five, is helping 10-year-old Justin plod through problems from his math textbook, while husband Neal walks Simon, age 7, through a homework packet. Amelia, the oldest of the bunch at 13, is buzzing around the kitchen for an after-school snack while 6-month-old Lucy sleeps quietly on the second floor of their finely furnished Lincoln home.
Kristin’s coaxing an answer out of Justin when Noah, age 4, chimes in from the kitchen counter, where he’s been playing a game on his iPad.
“And 400!” the toddler exclaims, answering the question.
Noah, now in preschool and chatty for his age, began showing what researchers called severe symptoms of autism spectrum disorder – a complex developmental disability that affects a person’s ability to communicate and interact with others – when he was just 6 months old. His eye contact was off, Kristin said, and he wouldn’t reciprocate facial expressions.
Those were red flags for the young mother, who noticed similar signs in her sons Justin and Simon before they were diagnosed with autism years earlier.
Shortly after concerns about Noah were raised, Kristin enrolled him at 9 months of age in the Infant Start study at the UC Davis MIND Institute
Results of the three-year study, released today, tested the merits of a new parent-driven intervention for infants showing symptoms of autism. The study showed a significant reduction in those symptoms for six of the seven infants enrolled, including Noah. His mother called the chance to participate “a big blessing.”
“I don’t know if it’s a cure, but his language and social skills just took off,” Hinson said. “I’m a big believer in the earliest intervention possible. It’s really the only thing that shows significant results, and I see it in my own family.”
Noah was one of seven local infants, ages 6 to 15 months, involved in the Infant Start study. All of them initially exhibited severe autism symptoms, such as failure to make eye contact, repetitive play behavior and an absence of babbling. The infants were evaluated over a three-year period, by the end of which six of seven showed normal patterns of verbal and nonverbal development.
As part of the Infant Start model, which teaches parents how to improve babies’ social skills through everyday routines, Kristin visited the institute’s Early Start Lab once a week for 12 weeks to learn a new parenting skill from MIND therapists. Each week, she’d come back with Noah after implementing a skill, such as turn-taking or song-singing, and perform it for the researchers.
“It was a lot of pressure,” Kristin said. “I had to learn to get in his bubble ... It seems like it should be natural, but people are so busy they don’t always do it.”
The intervention, which includes a thick manual on interpreting and responding to infant cues, helps parents identify a child’s struggle and walk them through it.
A child with repetitive toy behavior, for example, can expand his or her range of play skills with the right support, or a quiet baby can learn to imitate sounds, said Dr. Sally Rogers, principal investigator at the Early Start Lab.
“We need to be fairly persistent with these babies,” Rogers said. “We need to look for very subtle cues of their engagement and interests in order to help the babies get on the parents’ wavelength, and help the parents find a level of broadcasting their signal on a level the child can pick up and participate in.”
Before this, Rogers developed the Early Start Denver Model in 2009, which is now a widely accepted treatment method for infants ages 12-48 months. Simon Hinson, who was diagnosed with autism by MIND Institute psychologists at 15 months, was enrolled in a study for that model and benefited from it immensely, said Kristin.
Though Simon still has some autism-related quirks, they’re not as noticeable with him as they are with Justin, who did not benefit from an early intervention treatment, she said.
Most existing interventions are made for toddlers, leaving a gap in treatment for infants, despite the disorder being spotted earlier and earlier, said Rogers.
Dr. Paul Wang, senior vice president of medical research at the national nonprofit Autism Speaks, said psychologists do not typically diagnose the disorder before age of 2, but that’s changing as new screening methods come into play.
Wang said there is “essentially nothing” in terms of treatment for infants, and that Rogers is “really pioneering” this area.
“This paper is very important because it’s a first effort to have treatment research catch up with the early diagnosis work,” he said. “Once kids are diagnosed, we need to figure out what’s going to work best for them. I think (Infant Start) has a lot of promise, and I look forward to seeing more of her work on this topic.”
With researchers hailing the preliminary study as successful, the next step for Infant Start is a randomized, multiple-site trial, which Rogers said she hopes to launch in the near future, with UC Davis as a trial site.
Back at the Hinson household, Kristin and husband Neal are juggling schedules for Noah and siblings packed with everything from piano lessons to soccer practices. Though they’ve got the system down to a T, there’s one lingering item on the to-do-list: enrolling 6-month-old Lucy in an associated MIND Institute study open to siblings of children who are on the autism spectrum.
While Lucy appears to be developing normal social skills, Kristin said it’s worth having her monitored after what she’s been through with the boys.
She and Neal – a pilot with a geographically demanding work schedule – said participating in the MIND Institute programs was as helpful for them as parents as it was for the kids. They now use the strategies they learned with Noah to help Justin and Simon. Eldest daughter Amelia, who is not on the autism spectrum, is picking up on it too.
“It was tough, especially when Neal was gone a lot,” Kristin said. “But having the skills to make it better made it easier to have another child ... This is our ride. I don’t know it any other way.”