Sept. 9, 2014 -- Kristin Hinson knows the signs of autism well.
Her two older sons, Justin and Simon, both have the disorder. So when baby Noah didn't seem to be making much eye contact and wouldn't always respond when Hinson tried to play simple games like peek-a-boo, she feared that he, too, might going down the same road.
"It was a little scary," she says. "I hate to say scary because I've done it before, but it was. We were worried."
Fortunately, her older sons had been enrolled in a study at the University of California at Davis that was tracking siblings with autism.
When researchers there told her about a new project that was going to test early intervention to help babies who were showing signs of developmental problems, Hinson didn't hesitate.
"I said absolutely, anything to help," she recalls.
Today, Hinson says, Noah is symptom-free. He was one of seven infants at high risk of developing autism who got early, intensive attention from their parents in a bid to change their fates. Researchers say these daily, play-based exercises that are done at home may help steer growing brains into more typical development and could spare kids a lifetime of disconnection and delays.
Risks Among Siblings
Children with autism have trouble connecting and interacting with other people. They misinterpret social cues, or miss them completely. They may be highly sensitive to their environments, upset by everyday noises like the blare of a car horn or by textures they don't like, such as the scratchy tag on a shirt. And they often repeat certain behaviors like rocking or flicking their wrist.
While no one is sure what causes autism, researchers do know that there's a strongly inherited aspect to the disorder. A baby boy has a 1 in 4 chance of getting the disorder if an older sibling also has it, a 2011 study in the journal Pediatrics found. For girls, the risk is about 1 in 9.
That's far higher than the risks seen in the general population, where 1 in 42 boys and 1 in 189 girls has autism at age 8, according to the latest figures from the CDC.
And even when brothers and sisters don't go on to have full-blown autism, studies have shown they're at higher risk for other kinds of developmental delays.
Searching for Early Signs of Trouble
Knowing that the risks are so high, researchers have focused on siblings of children with autism to see if they can catch children early and perhaps alter their fates.
Noah Hinson was 9 months old when he joined what became known as the "Infant Start" study.
He and six other babies between the ages of 6 months and 15 months were put through a battery of tests to check their development. Four of them had siblings with autism. Three others did not, but were referred to the study because their parents were concerned about their development.
The researchers weren't trying to diagnose autism. That's usually not possible until a child is older – typically not until at least 18 months of age. Instead, they were looking for very early signs that a child's development was off-track in subtle but telling ways.
For example, says lead study author Sally Rogers, PhD, these babies:
- Spent a lot of time looking at objects. "It looks like they're studying these objects and it goes on for an unusual length of time for a child of this age range," Rogers says. Typically developing babies may pick up an object and look at it, but then they'll suck it, touch it, bang it, and eventually try to show it to someone else. These infants would fixate.
- Showed signs of repetitive behaviors. "I have a video of a little baby with her open hand between her eyes and the light, watching the light through her open fingers," Rogers says. Another little boy kept dropping a lid in a certain way to get it to spin. If it didn't, he'd repeat the motion until he could get the lid to spin down to the ground, then he'd start the process over again.
- Didn't send or receive messages very well. Rogers says that by 6 to 12 months of age, even babies who aren't talking can communicate. They point to things they want you to look at. They'll bring parents toys they want to them to play with. These babies weren't using their bodies, voices, or hands very often to signal to others. They also didn’t get messages sent by other people, respond to their names consistently or pick up games like patty-cake.
- Were quiet. "They're not using their voices to play with other people or communicate. They're not making that pre-speech baby talk. If they are vocalizing, it's really to themselves, and they're not doing it very often," Rogers says.
- Had neutral facial expressions. "It's rare to see a big smile on their faces," Rogers says.
- Weren't paying much attention to other people. "They're not watching people move around. They're not interested when people enter or leave a room," Rogers says. If someone, a kid or parent is doing something interesting across the room, they may not show any curiosity about it.
Rogers admits that spotting these signs in babies isn't black-or-white. "It's not that they can't do any of these things, but there isn't very much. There's way less than there should be at this age," she says.
What's more, to be included in the study, the children had to show these behaviors consistently over 2 weeks, and they were jointly evaluated by their parents, the researchers, and independent observers who didn't know what the study was about.
Once the kids were accepted into the study, researchers met with parents at least 15 times over 18 weeks. During each 1-hour session, they taught parents playful skills to help change the way their children were interacting with them. The parents kept up their skills for three years.
For Hinson, that meant singing songs with noises that would grab son Noah's attention.
"For example, if there was a song that had a loud noise in it that he was waiting for, like a pop or a clap, I'd wait for him to respond before I'd continue," she says.
She'd stop the song and wait for him to look at her or make a noise before she'd go on, she says. At first, they focused on just getting one response from him. Later, she'd wait for two or three.
Or if he was eating a snack, she'd take the snack away until he would look up or make a sound indicating that he wanted it.
"It seems almost common sense after they taught it to me. But it didn't come naturally to pause and wait like that," Hinson says.
"I'm a mother of five, and he was my fourth child, so I'm busy. So it made me have to take my time with some of the routines and slow down and pay attention," she says. "It really made me, I think, a better mom."
By 18 months of age, she says, Noah was really coming out his shell. His language took off, and he started responding to other people, both his parents and his brothers and sisters.
Noah is now 4, and he's been given several follow-up assessments. All tests show he is developing normally for his age.
"I don't have a crystal ball. I don't know what he would have been without it," Hinson says. "I know that it would have helped my other two, if I would have had it for them. I don't know that it would have cured my other two, but I think it would have significantly contributed to a change."
The researchers agree that there's no way to know what would have happened to Noah without the early intervention program. They say a larger trial is needed to answer that question more definitively.
But they can make some guesses based on what happened to kids who were like him but whose parents declined to participate in the study.
In that group of four children, three ended up with a diagnosis of autism by age 3. The fourth was diagnosed with intellectual disability.
Among the seven children who did early intervention, only one qualified for a diagnosis of autism by age 3. Another child was diagnosed with a related kind of developmental disorder -- pervasive developmental disorder not otherwise specified (PDD-NOS) -- though her language scores were in the normal range.
Still, experts who were not involved in the study, which is published in the Journal of Autism and Developmental Disorders, caution that the study was very small. Seven children, they point out, isn't a big enough sample to draw firm conclusions about how effective of this kind of treatment might be.
But they say even for a small study, there are some important ideas here.
"There's no infant test for autism," says Rebecca Landa, PhD. She's the director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. But the study shows "these kinds of early interventions might attenuate [or lessen] the severity of autism symptoms or the number of autism symptoms that the child would have had," she says.
Other experts agree.
"It's exciting and promising, but it's also very preliminary and it requires a lot more research and exploration," says Jennifer Stapel-Wax, PsyD. She's the director of infant and toddler clinical research operations at the Marcus Autism Center, in Atlanta.
"It really is the beginning of a new generation of studies that are focused on treatment in infancy," Stapel-Wax says. "Kids are learning so much in the first year to 2 years to life, and we need to capitalize on that brain growth, especially if children are going to be at risk for autism."
Stapel-Wax points to a study, published last year in the journal Nature, which showed the first signs of autism could be detected in babies as young as 2 months of age.
"People begin to veer off the developmental course very early," she says. She adds that this study is exciting because it suggests that there are things parents can do to put kids back on track.
"Let's begin to do some things that are going to put them on the right developmental trajectory," she says.
Hinson wholeheartedly agrees.
"I hear people wasting time on so many potions, and trendy pop-culture fix-alls, and cures for autism, and really the only clinical proven success is in early intervention," the mother of five says. "It makes a huge difference" in the life of a child who has autism, she says.