"Paradoxically liberating" is how Phil Schwarz has described his Asperger's syndrome diagnosis. He was in his late 30s at the time, and he had number of things on his mind: A software developer in Framingham, Mass., Schwarz had been labeled "gifted" as a child and had graduated third in his high school class. For years he had struggled with depression and a feeling that he was not living up to the promise of his past.
What's more, he had begun to worry about his toddler's delayed language development and repetitive play style. But he had no idea how the diagnosis that his son Jeremy would receive might affect his own identity.
Jeremy turned out to have a form of high-functioning autism. Later the same year, Schwarz received his own diagnosis with the related Asperger's syndrome. Only then did he realize that his long-standing difficulties with socializing, sensitivity to loud noises and bright light, and what he calls a "syncopated conversational style," were all related, both to one another and to being on the autistic spectrum. "It allowed me to make sense of everything through a new lens," says Schwarz, who is now vice president of the Asperger's Association of New England.
It seems that America has fallen in love with the stamp of medical authority. Increasing numbers of children are given increasingly specific labels, ranging from psychiatric and neurological diagnoses such as Asperger's and attention-deficit disorder to educational descriptors including "gifted" and "learning disabled." And parents who in the past might have fought ferociously against giving their children labels -- particularly for once-stigmatized conditions such as learning disorders -- sometimes actually seek such diagnoses for their children to get them extra time on tests, to receive insurance reimbursement for treatment, to qualify for extra educational services or simply to have a name (and treatment) for a problem.
The trend is widely acknowledged even though it is hard to quantify, and its causes and effects vary wildly. "There is no doubt that we are labeling children more," says psychiatrist Bruce Perry, my co-author on "The Boy Who Was Raised as a Dog and Other Stories From a Child Psychiatrist's Notebook." In fact, Perry says, "in order for clinicians to get reimbursed, they have to label. There is also a tendency on the part of both educators and parents to want to get an answer. They are very uncomfortable with ambiguity."
And although Stanford University psychology professor Carol Dweck cautions, "I think some children would rather be seen as 'odd' or 'quirky' than 'broken,' " others recognize how helpful the labels have been.
Robert Sternberg, a psychologist and dean of the School of Arts and Sciences at Tufts University, says there are numerous, complex factors involved in the increasing use of labels. "One reason is that in order for them to get special services, kids often need to be labeled. A second reason is for testing. In order to get accommodations like extra time, they need that label."
Because a diagnosis is often required before insurers will cover medical treatment, the rising use of psychiatric medications is also tied in with the trend toward labeling. The number of children taking such drugs rose two- to threefold between 1987 and 1996, a trend that is bolstered by pharmaceutical advertising.
Sternberg had his own childhood experience with labeling: He did poorly on IQ tests. "The teachers thought I wasn't very bright -- and that led me to meet that expectation, which led them to be happy that I met that expectation, and it became a vicious circle. The next year their expectations were a bit lower." Fortunately for Sternberg, his fourth-grade teacher didn't buy it: She saw that there was more to life than test scores, and she encouraged hard work.
As a result, Sternberg became fascinated with psychology and intelligence testing -- so much so that he got in trouble in seventh grade for testing classmates himself. He ultimately became a leading expert in the field. He thinks that one way around the tyranny of labeling is to reduce our obsession with speed -- and give all children extra time on tests.
Sternberg doesn't see labels as all bad, however. "Having a name for something in some cases can help you do something about it," he says, but he stresses that parents and teachers need to focus on children's strengths and reward accomplishments, rather than on what labels imply about ability and potential. Children, after all, tend to live up -- or down -- to the expectations of their parents and teachers.
Research finds that even subtle cues about stereotypes and associated expectations can have significant effects: Some studies have shown that simply being asked to check off "female" at the top of a math test can lower the way a woman performs on a test. Interestingly, if the woman happens to be Asian and is asked to identify her ethnicity rather than her sex before taking the test, her scores rise in line with positive stereotypes about Asians and math. But as in Schwarz's case, positive labels such as "gifted" can have negative side effects, too. Recent studies by Dweck show how labeling children as gifted or highly intelligent can actually inhibit their achievement and self-esteem.
Dweck and her colleagues studied hundreds of early adolescents, giving them each 10 questions from a verbal IQ test. Most did well. Afterward, some were praised for having done well because they were smart, while others were lauded for the hard work that had gone into achieving their high scores. However, when given the opportunity to try a more challenging task, those who had been told they were smart were reluctant. Says Dweck, "They seemed to be thinking, 'They called me smart. I better not do anything too hard in case they change their minds.' " In contrast, about 90 percent of those who had been praised for their effort wanted greater challenges.
Dweck, author of "Mindset: The New Psychology of Success," sees the root of the problem not in the labels themselves but in the mind-sets they represent. "I had shown in earlier work that children who believe in permanent traits like fixed intelligence are actually vulnerable because when something goes wrong they think they don't deserve the label anymore." Alissa Quart, author of "Hothouse Kids: The Dilemma of the Gifted Child," says the gifted label "fixes kids' identities into adulthood. The label is sometimes useful in education, but as an internal self-image, it's not."
Dweck acknowledges that parents and children may be relieved to learn that there's a name for the problem and specific remedies. But, she says, "it's incumbent on parents to explain that 'Well, you may be wired a little differently; this might make it more difficult for you; you might have to work harder and use different strategies,' as opposed to 'This means you can't learn.' "
Recent research in neuroscience bolsters the idea that people can and do change. Says Perry: "The brain is like a muscle: The areas that are used grow and improve while those which aren't, don't." Such growth is often visible on brain scans. Parents should also be aware that the criteria used to define these conditions are not absolute and that they shift over time. The conditions themselves also change as children learn and grow, often worsening with stress and improving when the child feels calm and safe.
As Schwarz says: "It's not the label that's the problem, but the baggage associated with it."
Dan Grover, an 18-year-old college student in Boston, co-founded WrongPlanet.net, a site for teens on the autistic spectrum. He was 10 when he his Asperger's syndrome was diagnosed. "Sometimes people distance themselves from you when they know," he says. "It's both good and bad -- good because it definitely explains some things and gives you some perspective, but at the same time it can be a self-fulfilling prophecy. Being aware of [traits related to the label] can magnify them."
Another 18-year-old, David Dunnington of Yorktown, Ind., told me via e-mail that his Asperger's label "used to send me through the roof" because adults would treat him like an infant, but that he now values the photographic memory and problem-solving skills associated with the condition.
One 13-year-old from New York who has been diagnosed with attention deficit hyperactivity disorder e-mailed me recently that "labels make me see myself as a painting that didn't come out right, and it makes me feel really bad. I think that having these labels is negative because it categorizes children into groups. These labels can be very hurtful, and they don't truly reflect a person's true personality."
Kathleen Seidel is proprietor of the Neurodiversity.com Web site, a resource for autism information aimed at "honoring the variety of human wiring," and the mother of a child on the autistic spectrum. Her site highlights the strengths and talents, not just the problems, associated with autistic disorders. "Everyone has different responses to diagnoses," she says, explaining that the child's perspective about how public to be about the label must be respected and that it may change over time, particularly in adolescence.
Seidel notes that attempts to link autism with mercury poisoning -- though scientific evidence does not find a connection between the condition and mercury in vaccines -- inadvertently evoke images of contamination. "Some people say, 'My child is a toxic waste dump,' " she says. "People don't understand the stigma. I don't want someone looking at my family member that way."
Schwarz uses an adage to describe the dual nature of autism: "As sure as the sky is blue -- well, the sky is really black and starry, but we see it as blue. The sun is a metaphor for the only thing that arrests our attention -- the painful burning intensity of the disability, that's your world. But of course there's more to it."
Similarly, parents, teachers and children themselves need to see past the blazing brightness of any label and into the individuality and potential of the person in front of them. ·
Maia Szalavitz, a senior fellow at Stats.org, is co-author of "The Boy Who Was Raised as a Dog and Other Stories From a Child Psychiatrist's Notebook" (Basic). Comments:health@washpost.com.
