The children who leave autism behind
Autism is usually thought to be a lifelong condition, but a small number of children lose the core symptoms and shed the diagnosis. Some researchers are beginning to explore how common this may be, and why some children outgrow autism.
Alex, aged 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 1 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 compared with his brother.
“Alex was an expressionless child,” says his mother, Amy. (Alex 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 own 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.
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 25 or 30 hours a week, then in therapeutic preschool and elementary schools 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.
The notion of recovery from autism is both tantalizing and fraught. (Even the term ‘recovery,’ 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 behavioral 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 such as waving.
Traditional ABA and newer variations have been shown to significantly improve children’s cognitive and language skills, and adaptive behaviors.
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 followed 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 to be a lifelong condition.
Nonetheless, in the modern history of autism studies, researchers noticed that some children — estimates vary widely, from about 3 to 25 percent — seemed to lose the social and communication impairments and repetitive behaviors that define autism. But they 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.
It wasn’t until a February 2013 study, led by University of Connecticut clinical psychologist Deborah Fein and published in the Journal of Child Psychology and Psychiatry, that researchers once again began to seriously consider the possibility of recovery from autism.
In her clinical practice, Fein says, she occasionally saw children who had made “surprising, remarkable progress” — so much so that she couldn’t help wondering whether there was something unique about their early histories. In 2009, she began looking systematically at children in her own practice and elsewhere, identifying 34 young people between 8 and 21 years who had achieved what she and her colleagues labeled an “optimal outcome.”
To be included in this group, the children had to have had a verified early autism diagnosis and no remaining autism symptoms. Fein also excluded ambiguous cases — for example, those who had never had a language delay or who were still receiving special education to address social or communication impairments.
Although the members of this group are similar to their typically developing peers in their communication, facial recognition and language abilities, Fein wondered whether they might differ in subtle ways. To find out, she and her colleagues have conducted a series of follow-up analyses. One analysis suggested that some young people in the optimal outcome group are slightly more socially awkward than their peers — but they are perceived as more likable than those who either never had autism or who still have autism but are high-functioning. Another analysis revealed a few minor differences in language. But Fein’s group has found no deficits in executive function — a broad class of cognitive skills that includes abilities such as controlling impulses and emotional reactions, shifting attention between activities, and planning and organization.
More evidence that some children can outgrow an autism diagnosis followed. In a 2014 study in the Journal of Child Psychology and Psychiatry, Lord and her colleagues reported results from 85 children with autism they had followed from age 2 through 19 years. The team found that of the 32 children in the study who do not have intellectual disability, 8 — all boys, and just 9 percent of the original 85 children — no longer met diagnostic criteria for autism by age 19 and required no extra support. (Six of the eight boys in this “very positive outcome” group retained their diagnosis until they were at least 14.)
Fein’s and Lord’s studies don’t offer many clues as to why some children outgrow their autism. Those in Fein’s optimal outcome group had slightly milder social symptoms in early childhood than did their peers whose autism did not change, but their early profiles were otherwise largely the same. Similarly, Lord and her colleagues found that children who later lost their diagnosis were no less impaired than others at age 2.
Early access to treatment may have something to do with these outcomes: In an analysis last year, Fein’s group found that, on average, children in the optimal outcome group had received earlier and more intensive therapy than children who kept their autism diagnosis. About 40 percent of children in the optimal outcome group received ABA therapy between ages 2 and 2.5, compared with only 4 percent of children who did not lose their diagnosis. In Lord’s study, all eight children who no longer met autism criteria had received treatment by age 3, compared with only half the children who continued to have symptoms.
Because neither Fein’s nor Lord’s studies randomly assigned children to receive early intervention or not, it’s impossible to say whether or how much the therapy plays a role, however. “Most kids are not going to make this dramatic progress and lose the diagnosis, even with the earliest, most intense services,” cautions Fein.
In Alex’s case, treatment certainly seemed to help. When he was 3, he entered a therapeutic preschool that emphasized social interaction, and he blossomed there. One day Amy took him to meet a classmate at a playground. When they arrived, Alex couldn’t immediately see the child in the crowded park. “I remember him saying, ‘I lost my friend. That makes me sad,’” Amy says. “That was an early revelation that he recognized and cared about another peer.”
By the end of second grade, the director of Alex’s elementary school, a therapeutic school for children with language-based learning problems, assured Amy she thought he was ready for a mainstream classroom. Later, he joined a regular education classroom at a public school with strong special needs programming. A Monday-afternoon socialization group strengthened skills such as initiating conversations and compromising with teammates.