Why Don't We Call Them Quirky?

Like the conscientious pediatricians they are, Perri Klass and Eileen Costello keep up with the ever-evolving vocabulary of childhood dysfunction. They know all about autistic spectrum disorder, sensory integration dysfunction, pervasive developmental disorder, Asperger's syndrome and more. They've waded through the medical literature and analyzed the studies. They know the clinical nuances that distinguish the diagnoses. They've seen hundreds of kids, counseled and comforted hundreds of worried parents. And Klass and Costello know how scary it can be when those medical labels are applied to a young child for the first time. "The terminology has real value," says Klass, "but it is also terrifying." So the two Boston pediatricians chose a simpler term to lessen the terror for families. Their solution: just say "quirky."

That's the word Klass and Costello settled on as another way to describe and think about the hundreds of thousands of kids who are "outside the common patterns," as they put it in their book, "Quirky Kids," which will be in paperback this summer. These are kids (and more are being identified than ever) with a wide range of quirks and traits who occupy a gray zone of slippery, often overlapping diagnoses, like autistic spectrum disorder, that can leave parents frightened and confused. Kids with high IQs who can't read facial expressions, who prefer vacuum cleaners to toys, who hate the feel of sand or wind, who have no idea how to make friends, who may suffer daily over things that come easy to others. Kids whose parents sometimes wonder: is my child a socially awkward math genius destined for greatness, or a loner destined for loneliness? (Klass and Costello do not use "quirky" to describe the severe disability of classic autism, or major mental illness, such as bipolar.) "We wanted a term that was genuinely affectionate because we think the kids and families we talk to and write about are fascinating, sometimes heroic and very likable," says Klass. "We meant it to say in a positive way, these kids are different."

Klass and Costello are part of a growing effort by experts and families to remove the social stigma from problems like "pervasive developmental disorder" (box) by de-emphasizing the technical diagnoses and focusing on each child's individual strengths and weaknesses. "People see a label and they just follow what's under the label, but that's not who the person is," says Kendra Bartig, program director of the Brush Ranch School for students with learning differences, outside Santa Fe, N.M. Mel Levine, a pediatrician and longtime opponent of diagnostic labels, agrees. "Let's identify what someone needs and help them, rather than branding them," he says. Levine, a widely respected expert on learning problems, says terms like attention-deficit hyperactivity disorder (ADHD) "are basically pessimistic. They suggest that there is definitely something deviant about you, which can be a self-fulfilling prophecy." So "quirky" may be a clinically useless term (Levine prefers the equally inexact "eccentric"), but that's the point. It's not that a quirky child doesn't need treatment--she may--but the word can help the people in her life to see her for who she is. And it may also help the child feel comfortable being different.

For some parents, a label like "quirky" is better than a medical diagnosis. Evan Clucas memorized "The Night Before Christmas" at 2 and taught himself to read at 4. Today, at 14, he memorizes and re-enacts long scenes from "The Simpsons," excels at acting and art, but keeps to himself at school. He sometimes jumps up and down, flapping his arms, and he worries about contamination, opening some doors with his shirt over his hand. Evan's dad, Tom, a psychologist, has never had his son worked up by a doctor. "Being in the field, I wouldn't want him stuck with a diagnosis," Tom Clucas says. "If you stuck it in a school file, where people may use those labels in a pejorative way, they're maybe not as likely to see all the good things."

For other parents, "quirky" is a way to talk about their diagnosed kid without fear of prejudice. " 'Quirky' is a benign label," says psychologist John Sommers-Flanagan, coauthor of "Problem Child or Quirky Kid?" published in 2002. The word works for Dan Reiter. "Whenever you mention your son has a mental disorder, people think he's retarded. He becomes an undesirable," says Reiter, 43, of Easton, Pa., whose 11-year-old son Scott was diagnosed with high-functioning autism. "But 'quirky' gives a comfortable nickname to his diagnosis that people accept."

Veterans in the field see potential good in using a blanket term like "quirky" to describe kids, but they also see the limitations. "If by labeling people 'quirky' we could then get people to accept them more, that would be great," says Linda Andron, director of Focus on All Child Therapies, a community-based agency in Los Angeles that runs a variety of programs for families dealing with autism and related disorders. "The problem is, if you just call kids 'quirky,' will that get them any services?" Lots of so-called quirky kids need real therapy, regular medication and special education, and there's help available from state and local governments, much of it through the schools. But the Q word won't qualify a kid for any of it. The promoters of the term know that as well as anyone. " 'Quirky's' not a substitute. The diagnoses point you in the direction of the knowledge, experience and understanding that's out there," says Klass. "They get you to the specialists who know the most." In addition, Klass notes, for many families a diagnosis is a relief after years of uncertainty, and a connection to a larger community of other families facing the same problem.

What Klass and Costello offer parents in their smart and comprehensive book is a navigational guide to the land of the quirky. They cover it all, from the earliest signs that a child might be "different" to the unique challenges of quirky adolescence. But there is no straight path across this foggy terrain, and in the end it's the kids who lead the way. Kids like Evan Clucas, who says he's "a comedian who doesn't always get the laughs he deserves" and thinks "quirky" is an interesting-sounding word. So if he had to pick one word to describe himself, what would it be? "Splurch," he says.