Photograph by Matthew O'Shea
The child heads straight for the toys; her parents sit by the desk, the mother twisting one hand over the other. Pediatric neurologist Dr. John Mantovani (who also serves as medical director of Mercy Children’s Hospital) asks his questions in a voice so gentle, they both start to relax, and information tumbles forth. “Don’t worry if I’m not looking at you,” he murmurs, his eyes tracking the child as she plays. At the next pause in the grown-up conversation, he picks up a bottle of liquid soap and exhales slowly, blowing a shimmery drift of bubbles.
He waits for the response.
Bubbles are one of Mantovani’s favorite diagnostic tools. Toddlers find them especially delightful: Typically, they will glance over in surprise, meet his eyes, giggle, and demand more.
“The child on the autism spectrum will very often look not at me, but at the soap jar,” he says, “because that, to them, is where the bubbles are coming from. It’s possible that they don’t realize the person in front of them has a mind like theirs.”
The mysteriousness of such a disorder is part of what Mantovani finds compelling; his reason for becoming a doctor was “to help by understanding.” His practice includes all facets of child neurology, but he’s recently thrown much of his energy into autism-spectrum disorders. He refuses to make generalizations—there are far too many variations—and he won’t presume to know what goes on inside any child’s mind. But over the years, he’s caught glimpses of an inner world in which “it just looks like their brain is going too fast to stop and process anything. They can’t focus on the big picture, so they focus on the details. It’s like they have these little compartments where they can process, but their overall brain, their connection to the world, is full of static.”
The difficulty seems to come with processing multiple layers of information, he explains: “The miracle of the developing brain is how capable it is, from a very young age, of receiving information, integrating it, and responding in a socially interactive way.” The brain is doing this multilayered processing all day, automatically, as data gushes and trickles in from different parts of the body, various chemical systems work simultaneously in the brain, and reverberations occur around memory or prior experience. When there are snags in that processing, “it’s like, for lack of a better analogy, they’ve got crossed wires. They don’t have a nice cabling system that connects everything in the appropriate sequence. Individuals on the autism spectrum seem to be overconnected in certain regions of the brain and underconnected in others.”
Over the past 27 years, Mantovani’s seen between 25,000 and 30,000 children. “Half a stadium full,” he says, sounding dazed. “It’s humbling. You learn how resilient people can be; how they can deal with adversity and not be defined by it.” Parents come up to him in grocery stores or theater lobbies, thanking him for something he said to them a decade ago. Often, it was an emphatic statement: “We’re not going to define this child by a diagnosis. A diagnosis just gives you a place to put the things you are concerned about. Then you put a wall around that diagnosis, and you let your child be much more than that.”
There were no doctors in Mantovani’s family, yet at the age of 5, he announced that he was going to become one. “At least, that’s the family myth,” he adds with a grin. “Memory can be tricky.” He went to medical school at the University of Missouri in Columbia, then did residencies and fellowships at St. Louis Children’s Hospital and Washington University School of Medicine (he is now on its faculty). He joined St. John’s Mercy Medical Center in 1984, and the following year, he started St. John’s Mercy Child Development Center, the first interdisciplinary center in the area for evaluation and treatment of children with developmental delays or impairments. He remains its medical director.
Working with pediatricians affiliated with Mercy Clinic, Mantovani has pushed the screening rate for autism spectrum disorders up to 90 percent of children seen, four times the national average. Now he’s starting a preschool for kids with these disorders, because “it didn’t make much sense to me that we were making all these parents nervous about whether their kids had autism, and then when they did, there were few places for them to go before age 3.”
Those early years matter.
“By communicating from your mind to theirs, using words or gestures, you can create a bridge,” Mantovani says. “When you start early and work intensively with a young child, you can actually build neurobiological connections in the child’s brain.”
The disorders that stretch along the autism spectrum—not fitting into neat boxes, but muddling one into the next—are all variations of the same neurobiological difference. What we need are neurobiological treatments, whether medications or gene therapies, to normalize the systems involved. Right now, “we’re sculpting the brain from the outside, by altering the child’s experience,” Mantovani says. “We also need to be able to sculpt from the inside.”
