Kid sister isn't rebellious -- she has NLD

By Emilie Holmes

December 21, 2004 | Growing up, my little sister was labeled a smart aleck and manipulative. Her teachers always said while she appeared very smart, she sometimes asked stupid questions and talked back to them while in class. While we didn't see her as quite so bad at home, there were undoubtedly some behavioral problems.

But, she was two years younger than me -- the oldest -- and following in what my parents called "high-standard footsteps." I was shy, and therefore well behaved and quiet. I was decently smart and I turned in my schoolwork. Amy, on the other hand, constantly talked in class, her backpack was an organizational disaster and we had a hard time getting her up in the morning for school. My parents thought for several years that she was either rebelling to my good behavior or was just the typical opposite second child.

It was the pre-teen years when we realized there might be something going on other than just that. The move from elementary school to middle school had about killed Amy and teachers were asking if there was something wrong -- if she had attention deficit disorder, or something else.

The U.S. Department of Health and Human Services now reports that during that time, in about 1997, more than 2.6 million children (ages 6-11) in the United States were reported to have been diagnosed with either a form of ADD or a learning disability (LD). From the department's report, Attention Deficit Disorder and Learning Disability: United States 1997-98, it reported that in the past 30 years, diagnoses and treatment of ADD and LDs has become a major concern of the department. Educators and pediatricians had been reporting an increasing number of children with the disorders. A survey in 1996 of pediatricians reported that 19 percent of all child or adolescent visits to the doctor involved a psychiatric disorder that needed to be treated.

Since mental illness is not a stranger in our immediate and extended family, my parents were open to the idea of testing Amy for a disability. After more than a year of misdiagnoses and really scary medication, we learned that Amy had a somewhat new learning disability commonly called NLD, which stands for non-verbal learning disorder. The symptoms fit to a T. NLDline.com says people with the disorder show early speech and early reading skills and incredible rote memory skills, which explained Amy singing entirely memorized songs at 18 months old. Those were the assets. Those who suffer from the disorder have motoric, visual-spatial, social and sensory problems.

Specifically, the Web site says some social problems include a "lack of ability to comprehend nonverbal communication, difficulties adjusting to transitions ... deficits in social judgment and social interaction." Some sites say NLD is to Aspergers Syndrome as Aspergers is to autism -- several steps down in intensity, but affecting the same area of the brain.

This explained why when Amy's teachers said, "If you're going to continue talking, go into the hall," that Amy did just that. Her teacher didn't realize that Amy was following literally what she was told. She never understood the unspoken message that her teacher's statement meant she was supposed to quit talking, only that if she wanted to continue, she needed to leave. She never understood anything unspoken. Everything had to be verbally explained to her. Doctors gave us literature that explained NLD more fully and gave real-life examples of other children who were going through the same situations. Seeing this on paper gave us more relief than can possibly be put into words.

Explaining it to other people was a different story.

Most teachers, friends' parents and neighbors assumed NLD was another form of ADD, that we were just medicating Amy because she was loud and there was nothing really wrong with her. Some actually said too many kids were being diagnosed incorrectly with ADD and Amy was one of them. The road since her diagnosis has been hard, but so much better than it was before. Within a year, Amy was somewhat stabilized, but more importantly -- we knew how to deal with her. We knew her school planner needed to be big so she could find it, that if she put books in her locker at school she'd never see them again, and that even at age 17, we needed to go through what homework was due the next day. We knew to say, "Amy, you're talking too much," instead of giving her a "look" that anyone else would understand, but she didn't. We soon found journals and Web sites reporting that kids with NLD actually need to sleep more and that sleeping (literally) all day on Saturday was their way of rejuvenating for the coming week. We learned that because of chemical deficiencies in Amy's brain, she had to sit on the left side of the classroom to understand and pay attention to the teacher more.

NLD is still a relatively new idea and condition. The most sophisticated doctors are now just realizing that many who were diagnosed in the 1970s and '80s with ADD or another LD really had NLD. But most people have no idea what it is, and explaining to people that Amy, who can memorize seven verses to a song in five minutes but forgets her homework for a week straight, has an LD is about as easy as telling a 1-year-old how to drive a car.

People need to be educated and educators, of all people, need to help with that. High school was the worst for Amy academically until one counselor opened his mind to her disability. Other people need to do the same thing. She doesn't have ADD and she isn't misdiagnosed. And, yes, sometimes medication helps.

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