Karen Pierce did not have a peaceful introduction to autism. As an undergrad at Stonybrook University in New York, Pierce worked in a research lab whose focus was aggressive adolescents with autism. Most used very little language. Out of frustration, they would sometimes pull hair and throw chairs.
On one of her first days at the lab, the staff took one of the kids to an ice cream parlor as a reward for not using aggressive behavior. Pierce recalls the boy getting excited about ice cream, walking on his toes and flapping his arms. Then, out of nowhere, he punched her in the face. “I fell down and the world turned black for a moment,” she says. (The boy was 16 years old and 6’2”.)
A grad student rushed over and told a shocked Pierce not to cry or look at the boy because it “might reinforce the behavior.” The lab employed specific treatments based on principles of applied behavioral analysis (ABA), a common, evidence-based intervention for autism, to treat behavioral problems. A core tenet of ABA is to reinforce desirable behaviors but not undesirable ones. “It was an extreme introduction to autism,” she says.
Pierce was flummoxed. At the time, she knew very little about autism or ABA. Looking back, she realizes the boy was probably very excited about ice cream and wanted to share that with someone. “The only way he knew how to get attention was to hit,” she says.
Lab members took bets to see if Pierce would return the next day. “It didn’t deter me at all,” she says. “It made me more interested.”
GET SET EARLY
Inspired by that experience, Pierce pursued a degree in experimental psychology after college. “I was interested in helping kids improve their social communication so that they could feel happier and less frustrated,” she says.
As a graduate student at the University of California, San Diego, Pierce developed a program to teach typically developing students how to have a positive relationship with students with autism. More than two decades later, Pierce is still at UCSD, now as a professor and co-director of the university’s Autism Center for Excellence.
Toward the end of her graduate training, Pierce realized that she needed to know more about how biology drives behavior in children with autism. “If you don’t understand that, you’re not going to be able to help tens of thousands of kids,” she says. “You’ll never make the big, worldwide change that I was hoping for.”
She began searching for ways to identify autism-linked problems early on, so that children could begin therapy as soon as possible.
In 2005, soon after having her second child, Pierce approached her pediatrician with an idea — screening infants during their 1-year well baby checkup for signs of developmental delay. At-risk infants could then be referred for further evaluation and treatment.
She launched the program, now known as Get SET Early, a couple of years later. (‘SET’ stands for Screen, Evaluate, Treat.) Today, Pierce and collaborators have screened 100,000 kids and evaluated about 2,000. The program has gained attention in San Diego, with more and more parents requesting screening.
About 20 percent of the babies who are flagged in screening are later diagnosed with autism. But for Pierce, the most important part of the program isn’t the diagnosis. “The goal is to find developmental weaknesses and get those fixed as fast as possible,” she says. (Some states require an autism diagnosis before providing specific treatments. But others provide therapies to any child who shows certain deficits.)
Pierce was drawn to SPARK because its large size makes it possible to study autism’s diversity. “People with autism are so wildly different. One can go to college and one can’t speak,” she says. “The idea that the same treatment will work in the same way for all children with ASD is not realistic.”
This is why Pierce is searching for biological markers, such as distinct patterns of brain activity or eye movement, in people with autism. She hopes these markers will help define subtypes of autism or predict how severe the condition might be. That information could then be used to select specific therapies.
Eye-tracking — technology to monitor where someone looks — is one tool Pierce uses. She has developed an eye-tracking test in which children look at a video screen with geometric patterns on one side and children playing on the other. The idea is to quickly assess a child’s level of social interest, which is muted in some people with autism.
About 20 percent of children with autism focus mostly on the geometric side of the video, looking at it for almost the entire test. Pierce’s team found that this group tends to have more severe symptoms overall. This makes sense, she says, because these kids may tend to look at the nonsocial things in their environment such as the spinning blades of a fan, rather than things such as faces that will help their brains develop. The researchers haven’t yet studied whether this group might benefit from a specific type of therapy, but Pierce plans to research potential new treatments in the upcoming years.
On the flip side, Pierce predicts that children with autism who focus more on the social half of the video will fare better in the long term because they have more social interest.
In another study, Pierce’s team used a brain imaging technology called fMRI to look at brain activity in 1- and 2-year-olds as they slept and listened to stories. (The researchers study children while they are asleep because fMRI works best when people are very still.)
Typically developing children have lots of activity on both sides of the brain as they listen to the story. So do some children with autism. Other children with autism show little or no activity in the brain’s language areas. The latter group tends to have poorer language skills at ages 3 and 4.
Eventually, the researchers hope to recommend specific treatments based on results from tests like these. “Understanding an individual’s different biological profile is going to be important as we try to develop the most effective treatments possible,” Pierce says.