A small percentage of children diagnosed with autism lose the core symptoms and their diagnosis.
Illustration by Pep Boatella
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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 ofrecovery 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 8 to 21 years old 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 colleaguesreported results from 85 children with autism they had followed from ages 2 through 19. The team found that of the 32 children in the study who do not have an intellectual disability, eight—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 diagnoses 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 diagnoses were no less impaired than others at age 2.
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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 diagnoses. About 40 percent of children in the optimal outcome group received ABA therapy between ages 2 and 2 1/2, compared with only 4 percent of children who did not lose their diagnoses. 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.
Some in the autism community object to the very notion that autism can or should be left behind.
Another person who eventually left his diagnosis behind has a similar story. Jake Exkorn was a chatty, active 1-year-old who gradually lost interest in other children, then stopped responding to his name, and finally stopped speaking. At age 2 he was diagnosed with autism. For the next two years, he spent more than 40 hours a week in therapy, relearning the skills he had lost: how to clap and wave, how to make eye contact, how to play with other children.
At first Jake merely imitated his therapists or his parents, spurred by the promise of an M&M or an Oreo. But once Jake developed spontaneous language, his mother, Karen Siff Exkorn, says, “it was like someone hit the fast-forward button.”
By the time Jake was 4, a friend watching him at a birthday party remarked that he seemed just like any other preschooler. His mother had him re-evaluated, and the doctor said that not only did Jake no longer meet criteria for autism, he had none of the residual behaviors that sometimes persist. The doctor said he was a rare case of “full recovery.”
When Jake started kindergarten, his parents told the teachers about his autism history so they could keep an eye out for any lingering difficulties. But soon they stopped worrying—Jake did fine. By the time he reached middle school, no one there guessed he once had autism, says Exkorn, who in 2005 published The Autism Sourcebook, a resource guide for professionals and parents of children newly diagnosed with autism. This month Jake starts college at the University of Michigan. He says he doesn’t remember much about having autism—though he does remember the M&Ms.
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Some in the autism community object to the very notion that autism can or should be left behind. Autism “is intrinsic to who we are—it’s the hardware, not the software,” says Carol Greenburg, a professional special education advocate in New York and an editor of the Thinking Person’s Guide to Autism, a book and blog offering practical advice and perspectives on research, education, and other topics.
Greenburg says that in most, if not all, cases of apparent recovery, people have not actually lost their autism, but rather have learned coping mechanisms that allow them to “simulate a non-autistic persona,” even in formal assessments. But “passing” in this way takes enormous energy, as both Greenburg and her 14-year-old son know from personal experience. “All autistics are forced into a position where we have to use that energy to create an appearance of normalcy rather than to actually function,” she says. “I don’t want either me or my son using that energy trying to look ‘normal.’ I want us to use it trying to accomplish goals that we have set for ourselves.”