Parents can be resistant to hearing that their child faces a challenging health diagnosis. But when Thomas Leaf and Emanuela Palmares learned that their son Caio has autism spectrum disorder (ASD), the diagnosis answered many questions with which they’d been grappling as parents and as individuals.
It wasn’t clear to them that Caio might be on the autism spectrum. Only after their insurance stopped covering hearing tests nearing Caio’s third birthday, did the two bring him into Yale’s Child Study Center to undergo evaluation for a study. It turned out to be a wise decision.
“When they described Caio’s behavior in terms of autism, a lot of things clicked into place,” said Leaf. “His focus on a tree on the horizon and tuning the rest of the world out. His fixating on a soccer line during a soccer game and ignoring the game around him. His difficulty discriminating foreground from background noise.”
“I had some trouble as a kid—acting out, throwing tantrums—feeling misunderstood and apart. That’s as awful thing to go through when you’re young, and autism is the kind of disorder that, without therapy, can make alienation worse,” said Leaf. “Hearing Caio’s diagnosis, we wanted to give him the best treatment as soon as possible.”
“For the first 18 months, we’d been raising an infant, basically,” said Palmares. “Once we embraced what was happening, though, we started seeing improvements in Caio almost immediately.”
ASD affects approximately 1 in 59 children, and is nearly four times more likely to be diagnosed in boys than girls, according to the Centers for Disease Control and Prevention. While many children are diagnosed after age 4, there are reliable mechanisms for diagnosing children earlier. The earlier children are diagnosed, of course, the more effective treatment can be. Caio’s diagnosis at the age of 3 put him in a good position to lead the kind of life available to most children, fully integrated into society.
Fred Volkmar, MD, the Irving B. Harris Professor in the Child Study Center and professor of psychology, is one of the people driving efforts to expand early diagnosis and treatment of children with ASD. He said that just in his lifetime, he’s watched autism go from a once little-understood diagnosis considered by many a kind of lifetime prison sentence (think Dustin Hoffman’s character in Rain Man) to a fully treatable condition, driven by a wealth of research.
“I’ve served as an editor for the Journal of ASD, and the number of submissions we get to publish papers has really taken off over the last 10 years,” said Volkmar.
Even so, Volkmar said that there were gaps in research and treatment—specifically, studying two very promising fields, robotics and smartphone applications. Children on the autism spectrum have trouble with what psychologists call executive functions: monitoring multiple stimuli and completing complex tasks. Social interactions are among the most complicated tasks humans perform many times over on a daily basis. Navigating those interactions can quickly overwhelm children with ASD, which explains why they have difficulties interacting with others as well as with the specific challenges they face in professional environments.
“Children on the autism spectrum get only about 10% of the social affective information in a scene, in large part because they’re looking at mouths, not eyes,” said Volkmar. “The top half of the face is where the action is, socially speaking, in terms of nonverbal communication.”
Robots are interactive partners with which children on the autism spectrum can feel comfortable because there is little or no nonverbal communication. This simplicity can help children learn to express themselves without anxiety, which in turn can lead to better interactions with humans in the child’s life (adults, siblings, and friends).
Brian Scassellati, PhD, the A. Bartlett Giamatti Professor of Computer Science and Mechanical Engineering and Materials Science, is developing robots designed specifically to help children on the autism spectrum improve social skills. He has worked with the Child Study Center and Volkmar to ensure that the robots are ideally designed for children with ASD, down to a narrative for their arrival in the house and their imminent departure. This narrative has been tested in a recent study that was published in Science Robotics in August 2018.
“From the first moment in the house, the robot tells a story about how it is a space explorer whose spaceship has broken down. The child, in interacting with the robot, is helping it to perform tasks to get its spaceship working again. At the end of the study, the robot has fixed its ship and can return to space, leaving the child’s home,” said Scassellati. “This story helps the children build empathy at the same time that they’re building social skills, and makes the departure of the robot less disruptive.”
Thus far, feedback has been extraordinarily and overwhelmingly positive, according to Scassellati. “All of the children in the study made significant gains in their social skills, and the robots were very well received. The parents don’t want the robots to leave; even more so than the children, even.” He said that after the robots left, some of the children lost the gains they had made, but that in and of itself isn’t exceptional. “We didn’t expect the robots to create permanent changes after just a month. Our best therapies don’t work that quickly,” he said.
Apps are another way to help children with ASD. David Grodberg, MD, FW ’99, assistant professor of psychiatry and medical director of the Child Study Center’s Outpatient Clinic, has been developing an application to help parents learn to use the same behavioral interventions with their children that are used by experts. “Much of the important work that’s done by professionals in a clinical setting can—must, really—be augmented by engaging the parents and other caregivers,” he said. Giving them tools to guide their treatment plans along carefully prescribed lines and with feedback from clinicians is key, he said, to maximizing the benefit to affected children.
Palmares, who has since remarried, noted that having a child with ASD requires great efforts as a parent, but also that the process has been personally rewarding. “Caio has made me a better mother and a better wife,” she said. She and Leaf divorced not long after Caio’s diagnosis, for reasons unrelated to his condition, and “co-parenting him has allowed both of us to forgive each other and have a healthy, respectful relationship. We have to, for Caio’s sake.”
Leaf agreed. “I think Emanuela and I both see raising Caio as a call to make ourselves better people. I remember my childhood, growing up as an outsider, not really feeling at home until I went to Hopkins [a private school in New Haven]. Caio’s never going to feel like he’s a bad kid, like he’s weird or unaccepted. He is who he is.”
Caio has become adept at using educational apps, and has his own programmable robot that he loves playing with. He’s even mastered a form of programming to get the robot to perform different tasks. Increasingly, what could have been a debilitating condition is for Caio and children like him, just another one of life’s manageable challenges.