Boy with non-verbal autism finds his voice

Published: Apr. 27, 2016 at 5:12 PM EDT
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April is "Autism Awareness" month and one Perry County boy hopes sharing his story will give people a better understanding of what it is like to live with autism.

Kelby Johnson, 9, sits at his desk at Robinson Elementary School in Perry County.

He uses a tablet to do his assignments. However, it's used for much more.

When he was just 18-months old, his family noticed something was wrong. His vocabulary slowed down and eventually stopped all together.

Doctors diagnosed Kelby with autism.

"It's heartbreaking because he was very verbal, very expressive, very engaging with everything and all of his surroundings and people," Kelby's grandmother Shelia Barnett said. "Then all of a sudden ... locked up and lost and not able to communicate."

From 18 months to age 8, Kelby could not share his thoughts or feelings. But that all changed about a year ago when Kelby got access to a program called "DynaVox."

The program allows people to communicate using both a keyboard and symbols. Once a response is typed out, the person can push a button and the device speaks for them.

We asked Kelby a few questions, including what he would like to be when he grows up.

"I want to write books about autism and inform people about what it's like to live with autism," he said.

Kelby spends most of his day in class with all the other fourth graders. Academically, he is at the top of his class. Socially, Kelby struggles but DynaVox has helped with that giving him an avenue to talk with friends.

In the hallways of Robinson Elementary, the walls are covered with decorations celebrating autism.

"We are very aware that those students are just as meaningful to us as any other student is and sometimes they have a little bit more to offer because they have a totally different perspective on life," Principal Estill Neace said.

Kelby wants to share his perspective with the world. He has made it his mission to let people know what it is really like to have autism.

He said there is one thing in particular that people do not understand.

"That people with autism have hopes and dreams like everyone else," Kelby said.

Kelby will give a presentation Thursday at the Annual Special Needs Awareness Evening in Knott County.

The event takes place at Hindman Elementary from 6 p.m. until 8 p.m.