An Illness That Causes Compulsive Reading

April 11, 2002 -- When Jimmy suddenly started to read as a toddler still in diapers, his parents were shocked.

"We have these flashcards," explained his mom Janine, and "he just out of the blue pulled them out, and he started saying some of the words … It was amazing."

Likewise, at 3 1/2 years old, Kyler can read just about anything his mother Alma puts in front of him. He taught himself the letters, numbers and shapes without any help. While lots of children are fascinated by cars, Kyler focused on the lettering, pointing out car names and license plate details.

Most parents would have been proud of their child's incredible intellectual gift. And at first, Jimmy's and Kyler's parents were. But they soon discovered that their boys' astounding fluency for shapes and numbers was shadowed by problems.

Their dazzling ability to read is in fact a rare syndrome called hyperlexia, which means excessive reading. The illness, which affects mostly boys, is so unusual no one is sure how many kids it affects. It is accompanied by significant delays in language, and an inability to interact normally with others. Some who are affected with hyperlexia also suffer from autism.

A Physical Need

When Kyler turned 2, his mother realized that his desire to read voraciously was not a choice he made.

"It seemed like an obsession for him," said Alma. "Basically he ignored his environment and he would just look at signs and letters … He was not interested in associating with other people."

For Jimmy, too, his reading ability had serious drawbacks. "He wouldn't do anything that didn't have to do with letters and numbers," said his mother.

Margie, another mother of a hyperlexic child named Alex, remembers when her pride turned to concern. One Thanksgiving, Alex was so absorbed in a book that he refused to join the family.

"It wasn't just something that he wanted to do. He had to do it," said Margie. "It was like a physical need for Alex, that he had to decode things in order to be calm and happy."

Alex, now 10, can read from a college textbook with ease — even if it's turned upside-down. But he doesn't understand what he's reading.

Typical children, explains Phyllis Kupperman, director of the Center for Speech and Language Disorders in Elmhurst, Ill., learn the meaning of language before they can read words. "Children with hyperlexia do it the opposite way. They learn to read the language first, and then later on they learn what those sounds and words mean."

Using Words For Treatment

Kupperman has found that the reading skill in itself can be an essential pathway into the minds of hyperlexic kids.

"It's all that they can do at that time," she says, "and it's our job then to use that reading skill to get them to do the things that other kids learn to do at two, and three and four."

To help Kyler learn how to communicate with another child, for example, Kupperman writes out sentences for him to read and use. At first, Kyler pays attention to the written words — and not to the other boy. But ultimately Kyler grasps the give and take of the conversation, and learns to communicate directly without reading.

As hyperlexic children get older, other kids catch up to them in reading, but the confusing emotional swirl intensifies. The social gap between them and other children grows.

"For instance, if we go swimming at a public pool, Alex very much wants to play with the other kids," says his mother Margie. But Alex's inability to express himself leaves him feeling isolated. "All of a sudden, the kids move away from him, and he doesn't know what to do about that."

Far more fluent in writing than in speaking, Alex uses the computer in therapy to try to express himself. But for the time being, Alex's best friends are the cookbooks he devours wherever he is.

Margie remembers going to a parent support group, where parents said what their goals for their children were. When it was her turn to speak, she says, "I said, 'I just want Alex to be able to talk to me. That's all.'"