Giving It a Name: Why Labels Are Important

Sarah was 4 years old. For a long time, I had tried to understand this special child in my life, a girl I knew quite well but whose mind seemed closed to me. She was brilliant. At 18 months, she could recite stanzas from Clement C. Moore’s “The Night Before Christmas.” She spelled words with blocks at the age of 2. By the time she started preschool, she knew her multiplication tables and could read seven-digit numbers.

But what to make of the couldn’ts? She couldn’t hold a conversation. Couldn’t use personal pronouns like I and you. Couldn’t be toilet trained. Couldn’t make eye contact. Couldn’t follow my finger when I pointed to something across the room—even when she desperately wanted to see it.

Her doctor shrugged when Sarah’s mother brought up these concerns. “Kids develop differently,” she said.

“But it’s not normal,” Sarah’s mother insisted. “Shouldn’t I take her to see a specialist?”

“Why?” asked the doctor. “You don’t want to label her, do you?”

Actually, yes. A label would be nice, thanks.

In our politically correct age, labels are the boogeymen, and it’s easy to see why. Think of the ugly words that have been used over the years to describe kids under the special education umbrella: Mongolian idiots (once the name for those with Down syndrome), imbeciles, morons, retarded—all words that translate to stupid in playground lingo. Later, we tried elevating the kids by calling them “special.” It took all of five minutes for school bullies to figure out that special meant—again—“stupid.” And while some of our “special” kids may not even know they’re being teased, plenty of them do. And it hurts even more than you imagine.

So why pin such placards to our kids and set them up to fail? Can’t we just identify their needs and provide for them? Do acronyms like PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) or ADHD (Attention-Deficit Hyperactivity Disorder) really tell us anything about what’s going on inside the child?

By themselves, no. But they’re a necessary evil. Right now labels are literally where the money is. Without a diagnosis, most health insurers won’t pay for medical bills or therapies. Schools may not get federal money for undiagnosed students who are left flailing about in the reading room getting generalized help but no coherent educational plan. And with no label, organizations like Johnson County Developmental Supports can’t provide help to overwhelmed families.

Often, a diagnosis is exactly what those families are looking for. Those who haven’t faced a child’s disability don’t know what a lost, shell-shocked feeling it can produce. Sometimes a parent’s only anchor is having a name for the problem. It gives you a place to begin researching the diagnosis and finding support groups. And as the child becomes an adult, a label can even become a badge of pride. Adults with autism have their own advocacy groups dedicated to helping NTs (neurotypicals) understand that people with autism have their own particular gifts, without which society would be considerably poorer.

The danger comes in hanging every hope on the label. It’s no magic salve. It may well be changed at some point. It means strangers, family members and even doctors will misunderstand and limit your child. You become your child’s best advocate, an expert in who that child is and what he can achieve. You never say, “He can’t because,” no matter how many times everyone else says it—including him. You educate his peers. You insist they understand, accept and embrace his differences. You hate the label, but you bless it too. You take every benefit it offers and fight its every limitation. Sarah, the special girl in my life, has high-functioning autism. We know the name. Now the work begins.

Shawnee resident Claire M. Caterer writes frequently about children with special needs. For more information on autism and other disabilities, she recommends Shannon Des Roches Rosa’s blog at www.Squidalicious.com.