Mercedes offers a glimpse into life with Asperger's disorder

Mercedes Jones is not your average 11-year-old girl. She'd rather watch the Discovery Channel than "American Idol." She followed the 2008 presidential election closely, spending hours watching the news networks and debating the merits of the candidates with her class. She would like to go into politics -- if she doesn't become a veterinarian -- and she wants to create a world without violence or meanness. She campaigns for a cause, speaking to groups of adults with poise.

"At camp, my nickname was The Protester, because I was always protesting," she said.

Oh -- and she's autistic.

Living with Asperger's

Mercedes, a fifth grader at Thomas Intermediate, was diagnosed with Asperger's disorder, a milder variant of autism. She is considered "high functioning" -- so much so, in fact, that she wasn't diagnosed until she was about 9 years old.

"It took her summer school teachers to notice it," said Mercedes' mother, Juanita Jones, a school nurse with the Bedford County system. "She wasn't making eye contact and when she ran, she tilted her head to one side when she ran."

Before then, she said, Mercedes had been "right on time with her development skills."

"But then," Juanita added, "she began to have problems with her speech."

The speech of those with Asperger's can sound odd -- there is a repetitive pattern and unusual inflection of certain words and phrases. Mercedes' voice, as she gave a speech to the Bedford County Health Council Thursday at lunch, did tend to jump in places -- but no more so than any other 11-year-old addressing a group of grownups on their own turf.

Isolated feeling

"Living with Asperger's is hard," she told her listeners. She talked about feeling set apart. She said she wanted to play "regular" sports, but was afraid the coach and other players wouldn't be able to handle it if she had a "meltdown." She told them how thankful she was for Aut-2-Be-Kids, a local organization that lets her play those sports, as well as participate in other activities.

"Autistic children don't handle change," she said. "I will be taking a class that will help me as I get older."

The class, she said, would teach her basic necessities, from doing laundry to balancing a checkbook.

Mercedes told her listeners that she had to be careful meeting new people.

"I can be easy to deceive," she said.

Speaking out

It was a speech she had given before. Once, at an Aut-2-Be-Kids Club meeting, she was sounding off about the obstacles she and her fellow club members faced, and Leta Frame, the Bedford County contact for the Autism Society of Middle Tennessee, overheard her. Frame helped form Parents ACT, a support group for families with an autistic member, and the Aut-2-Be kids club.

"I thought -- who better to hear from about what it's like to be autistic than someone who is autistic?" she said.

It took some coaxing, but Leta got Mercedes to agree to speak to the employees at Webb/Mason. The company had "adopted" Mercedes for Christmas.

"She wanted to talk to them and explain what autism was all about," said Juanita.

Mercedes was so nervous she banished her mother.

"I wasn't allowed to come into the room," she laughed. "I had to wait in the lobby."

Mom's help

On Thursday, Mercedes decided her mom could stick around for her second speaking engagement. She is Juanita's only child, and their relationship is close, as much like best friends as mother and daughter. Juanita gave up a job where she worked 12-hour shifts because, she said, "My daughter needed me more than my job did."

Working for the school gives her the same schedule as Mercedes, which has been a big help. But don't think they're joined at the hip. Mercedes has her own group of friends and her own interests to pursue. While she likes physical education best in school, her favorite class is science, especially anything related to animals. While she loves cats and dogs, she can't have one as long as she and her mother are living in an apartment.

"Next year, we'll have a house," she said.

"She's counting on me winning the lottery," her mother laughed.

Mercedes isn't only "The Protester," she's also ambitious. After the meeting was over Thursday, she was lobbying to be a full-time speaker.

"I can do this," she said. "I can."

AUT-2-BE KIDS POKER RUN

There will be a poker run to raise funds for Aut-2-Be Kids April 25 at H.V Griffin Park. Registration is 9 a.m. and the last rider will be at 12:30 p.m. There will be drawings, prizes, live entertainment, and a silent auction. For more information, call Leta Frame at 684-8169.

AUTISM AWARENESS MONTH

April is Autism Awareness Month. Look for more stories about how families are dealing with autism in the Generations page of the Sunday edition of the Times-Gazette throughout the month.