A small percentage of children diagnosed with autism lose the core symptoms and their diagnosis.

By Siri Carpenter
Illustration by Pep Boatella

(Continued from Page 2)

Brain imaging seems to support the idea that losing the behaviors necessary for an autism diagnosis doesn’t necessarily mean the brain has “rewired.” In an unpublished study, Fein and her colleagues found that when performing a language task, young people in the optimal outcome group have patterns of neural activity in some brain regions that more closely resemble those of their peers with autism than the patterns of typically developing individuals. The finding doesn’t negate the idea that those children’s autism has faded, Fein says: After all, the disorder is diagnosed based on clinical observations of behavior, not based on brain scans. But, she says, “the brain functioning is not normalized. It looks like they might be compensating.”

Ari Ne’eman, president and co-founder of the Autistic Self Advocacy Network, argues that losing an autism diagnosis deprives people of the opportunity to be part of the autism community, and that adults in this situation often sense that they’re somehow different, but can’t make sense of the feeling. In other cases, children may reject their own history. “If your whole life your parents have looked at autism as something that was this scary thing that, thank goodness, was no longer associated with you, that’s a hard thing,” Ne’eman says.

Karen Exkorn says she’s convinced that’s not how Jake feels. “He embraces his past and can talk about it,” Exkorn says. They are both certain that for him, autism is part of the past. But she says she understands why it seems hard to believe. “I’m not sure if I would have believed that full recovery was possible—if we didn’t have a son who fully recovered.”

For many children, loss of the diagnosis can be a double-edged sword. Many continue to have persistent difficulties, such as attention deficit hyperactivity disorder or language-based learning issues. “Some of our kids do amazingly well, but they still need help,” Shulman says. Some of these deficits might not show up right away. Problems with attention might not emerge until first grade, when children are expected to sit still, for example, and language-based learning difficulties may not become apparent until third or fourth grade, when children are expected not just to read, but to read in order to learn.

Digging into the charts of some of the children she has treated, Shulman found that of the 569 children diagnosed in her program in the last decade, 38, or 7 percent, no longer meet the criteria for autism. Of those, 35 continue to have emotional, behavioral, or learning difficulties, and only 10 are in a mainstream classroom with no additional support. (Shulman does note that her study may overestimate the proportion of people who have persistent problems because those without problems may stop visiting the clinic.)

Amy, Alex’s mother, sees hints of these lingering difficulties in her son, despite the stunning progress he has made. When he was a baby, one of the first clues that something was wrong was his poor motor development. Now, at age 10, he is all knees and elbows. He bumps a glass of milk, catching it just before it spills. He accidentally taps the edge of a plate of chips and scatters them on the counter.

These may seem like signs of ordinary clumsiness. But to his mother, they represent a persistent, if minor, problem with gross motor skills. In Alex’s Aaron Rodgers fascination, Amy sees not a typical adolescent interest in sports but an echo of his earlier fixation with letters and numbers. His thinking also retains some of the rigidity that marked his earlier years: He’s strongly averse to reading unless it’s about sports, Amy says, and “shuts down” if he can’t find a book to his liking.

These remnants of Alex’s past, Amy says, “remind us that while they may be a little bit more latent than they were, they’re still there, and they’re still part of who he is as he grows older.”

* * *

In fact, Amy says she is not confident that Alex has completely left autism behind. He still struggles in school, especially in reading comprehension and other areas that strain his still-immature language-processing skills. But he has learned coping and compensatory strategies that, at least for now, can convince teachers that he is understanding and processing information as any fifth-grader should.

This leaves Amy with a fresh set of worries. Although she is grateful for Alex’s many gains, she has mixed feelings about him losing the autism diagnosis—and the many sources of help that come along with it. “He just gets lost in a sea of other students because he’s a sweet, compliant kid, and somehow in his crafting of his answers to the homework, making it look like he’s on it—but he’s not,” says Amy. “My ongoing struggle with the school is making sure he doesn’t fall through the cracks, and that becomes harder without an autism diagnosis.”

In his fifth-grade science class, for example, Alex was skimming through the assignments, and his mother became convinced that he didn’t really understand the material even though he was keeping up. His science teacher didn’t realize what was going on until Amy pointed it out.

Parents like Amy sometimes face another conundrum: whether and when to tell their children, or the rest of the world. Some parents see autism and everything that came with it—the anxiety and perseverance, the setbacks and successes—as core parts of their children’s and their families’ identities, parts that cannot and should not be erased.

Jake’s parents told him about his diagnosis when he was about 5. “I wanted him to find out from us,” his mother says. “I didn’t ever want him to hear from another family member at a family reunion.” She says she also wanted to destigmatize autism: Why should it be a big secret? Jake took it in stride, she says. “It was as if we told him, ‘You had the chickenpox and then you recovered.’ ”

Others say they worry that a history of autism will affect how friends or teachers treat their children, or affect college admissions, or damage their children’s sense of self. Alex is aware that he gets extra help with reading, writing, and social skills. But his parents have not yet told him about his autism, and Amy says she’s not sure if or when they will.

But that’s a question for another time. Today, Alex’s parents are happily looking forward to their son graduating from high school, going to college, and finding a fulfilling job. And they hope that as he grows, he’ll form meaningful friendships and find love. “Sometimes it is amazing to think about his beginnings and to see this kid who has evolved into a very thoughtful, very self-reflective, socially aware child,” says Amy.

Amy might never be able to think of autism in the past tense, and she might always worry whether Alex gets all the support he needs—but what parent doesn’t? “I'm not sure any parents, of typical or non-typical developing children, can say there is an ‘optimal outcome’ in the end,” she says. “We all try to develop and leverage our children's strengths, but in the end they are who they are destined to be.”

Spectrum Autism Research News

Perched on a kitchen stool as he finishes a snack, Alex gamely entertains questions about what it was like to move to a new school a couple of years ago. Making friends was the hardest part, he says. “I had to stretch to do things that other kids were into so I’d have something to talk to them about.” Luckily, he says, he figured out a key to social success: Minecraft. He’s not the best at this game, just like he’s not the best reader in his class. But that’s OK with him. “I’m proud of me because I’m good at being me,” he says. “I don’t want to be anybody else.”

FIRST PAGE