A small percentage of children diagnosed with autism lose the core symptoms and their diagnosis.
Illustration by Pep Boatella
This article originally appeared on Spectrum on Sept. 8, 2015.
Alex, age 10, bounds onto his bed to pose with his Aaron Rodgers poster, grinning as proudly as if he had recruited the Green Bay Packers’ quarterback himself. Continuing the tour of his suburban New York bedroom, he points out his Packers-themed alarm clock, his soccer trophy, his Boy Scout trophy, and then the big reveal: a homemade foam box in Packers green and gold.
“Mmm, very nice,” I say. Alex grins—part shy, part sly—as he turns it around to show me the message on the back: “Jets stink.”
Even though he seems to be an entirely ordinary boy, there’s something unusual about Alex: He once had autism, and now he does not. There was a time when Alex’s parents didn’t know if he would ever speak in full sentences, let alone joke around with a stranger. His autism, they suspected, might prevent any such future.
Alex’s parents began to worry about him before he was even a year old. He wasn’t learning to sit, crawl, or stand as his fraternal twin brother was. Even more striking was how much less social he was than his brother.
“Alex was an expressionless child,” says his mother, Amy. (Alex’s and Amy’s names have been changed to protect their privacy.) She remembers a friend trying in vain to get Alex to laugh—jumping up and down, gesturing wildly, making silly faces. “His brother would be in belly laughs, and Alex would be just glazed over,” Amy says.
Their pediatrician, suspecting autism, recommended early intervention. When Alex was only 9 months old, his parents arranged for speech therapy, physical therapy, and other special education services. Alex was formally diagnosed with autism when he was 2. He had all the hallmark symptoms: He avoided eye contact, he didn’t respond to his name, he wouldn’t point to communicate what he wanted, he was obsessively interested in letters, numbers, and animals. Like many children with autism, he had intense reactions to certain sensations, and mundane procedures such as getting a haircut were traumatic—the feel of the scissors on his neck made him writhe and scream.
Even the term recovery, with its connotation of illness, is controversial, and many researchers avoid it.
In the wake of the diagnosis, Alex’s father struggled to picture a future that was anything but bleak, says Amy. But she was more optimistic, putting her hopes in an intensive program of behavioral therapy. Alex made steady progress—first in one-on-one therapy that required as many as 30 hours a week, then in therapeutic preschool and elementary school, and, finally, in a mainstream classroom. This year his developmental pediatrician, autism specialist Lisa Shulman, judged that he no longer meets the criteria for an autism diagnosis.
Today, Alex is funny, gregarious, and obsessed with sports. He is keenly self-aware and socially tuned in, chattering about the status hierarchy on the school bus and explaining that scoring soccer goals only occasionally is actually better than scoring in every game, because then it feels more special to high-five your teammates.
Most children with autism will forever have the disorder. But a handful of studies in the past three years indicate that for reasons no one understands, a minority of children, like Alex, shed the core symptoms necessary for an autism diagnosis. Shulman, who runs a large clinical autism program at Albert Einstein College of Medicine in New York City, says most of these children face residual learning or emotional problems. “We still consider these kids as having had a wonderful outcome,” she says. “But they don’t get off scot-free.” Only “the minority of the minority” breeze through each new challenge life brings them—the book reports in elementary school, the social minefields in middle school, the expectations for independence in later adolescence and adulthood.
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The notion of recovery from autism is both tantalizing and fraught. (Even the termrecovery, with its connotation of illness, is controversial, and many researchers avoid it.)
In 1987, University of California–Los Angeles psychologist Ole Ivar Lovaas reported that half of young children who were treated for at least 40 hours per week with a type of autism therapy called applied behavior analysis, or ABA, became “indistinguishable” from other children by the time they finished first grade. His finding drove support for early, intensive intervention for children with autism.
ABA, first used as a treatment for autism in the 1960s, relies on principles of learning theory, including prompting and rewarding desirable behaviors such as social interaction, and minimizing behaviors, such as repetitive movements, that interfere with learning. Many forms of autism therapy are based on these principles. Alex’s therapists, for example, used a modified form of ABA to teach him basic aspects of social communication such as meeting another person’s gaze, pointing when he wanted something, and mimicking actions like waving.
Traditional ABA and newer variations have been shown to significantly improvechildren’s cognitive and language skills, as well as adaptive behaviors.
Early access to treatment may have something to do with these outcomes.
Some children given these intensive treatments improve more than others. But Lovaas’ claim that half of young children who receive intensive ABA therapy would “recover” was clearly an overstatement. And clinical psychologist Catherine Lord, an autism expert at Weill Cornell Medical College in New York City, says those promises did damage. They set up parents to believe that if they just chose the “right” therapy, they could make their child’s autism disappear. “There’s just no evidence of that at all,” she says. Today, autism is generally considered a lifelong condition.
Nonetheless, in the modern history of autism studies, researchers noticed that some children—estimates vary widely, from about 3 percent to 25 percent—seemed to lose the social and communication impairments and repetitive behaviors that define autism. But researchers often assumed either that most of those children had been misdiagnosed and never had autism to begin with, or that they continued to have autism with less obvious symptoms.