Pensacola, Florida
Tuesday October 21st 2014

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Piecing the Puzzle

Autism and Life on the Spectrum
By Jeremy Morrison

Angela Owens is like a lot of other mothers. She loves to talk about her children.

“How long do you have?” Owens laughs. “Having two children on the spectrum is a lot different than having one child on the spectrum.”

Owens stands in a maze of informational booths at the Autism Information and Resource Fair held recently at Sacred Heart Hospital. The term “on the spectrum” refers to developmental disorders such as autism and Asperger Syndrome.

Both of Owens’ children—ages two and three—are on the spectrum. Tomorrow she’s taking them to Disney World.

“They’re gonna have the same things that every other kid has,” the mother said. “You know, the fireworks, the characters—Mickey’s giant on TV, but when he’s five feet tall!”

Autism and other developmental disorders under the spectrum-umbrella tend to affect a person’s social and communication skills. Other characteristics include restricted or repetitive interests or behavior, as well as cognitive delays.

Standing next to Owens is Aileen Ilano. Her son is seven.

“He uses a ‘talker,’ an AAC device to communicate,” Ilano said, explaining how her non-verbal son now communicates needs such as “drink water,” “eat gummies” and “go outside.”

The autism resource fair hums with activity. It’d be too much for Ilano’s son.

“This place?” she said. “He’d only be here for 20 minutes, it’s just too overwhelming.”

The mothers are hoping to stay a bit longer tonight. The annual resource fair offers a wealth of information for the autism community—a community that’s growing at an alarmingly rapid pace.

The Puzzle

The annual resource and information fair is held each year in April as part of Autism Awareness Month. The event is hosted by Autism Pensacola, which celebrated its 10th anniversary last year.

“We started as a support group,” said Susan Byram, the organization’s director.
Since its founding, Autism Pensacola has grown into a mecca of services for the local autism community. The non-profit is an association of parent, professionals and concerned community members who are dedicated to nurturing that community.

Autism Pensacola offers support, education and networking opportunities. There’s the Parent Empowerment Project and, in the summer, Kids for Camp. The group strives to better the horizons for persons living on the spectrum.

“We’ve been working on it for 10 years,” Byram said. “It’s gotten better, but we’ve got a long way to go.”

Byram’s son was diagnosed with autism in 1994. He works for the Blue Wahoos now. When he was diagnosed, the autism rate was somewhere around one in 1,000.

“Since then, every year or two the number keeps getting cut in half, and cut in half,” Byram said. “There’s a lot of kids with autism.”

The current rate is one in 88.

“No one really knows why,” Byram said.

Not only are researchers still grappling with the reasons behind the rate increase, they are in fact still in the dark about what causes autism and related disorders.

“Everybody’s asking why,” said Debra Keremes, Autism Program Training Coordinator at Sacred Heart’s Autism Resource Center. “There’s a lot of people trying to figure out those answers.”

Autism Awareness

People living on the spectrum weren’t always labeled as autistic or otherwise. They were considered different, perhaps odd.

“Old so-and-so,” explained Byram, “that’s just very smart and just can’t get out of the rain.”

Leo Kanner, of Johns Hopkins Hospital, is considered to have introduced the term “autism” in the modern sense in a 1943 report detailing children with striking behavioral similarities. Hans Asperger had also used the term—basing it on the Greek word autos—in 1938, during a lecture about child psychology.

The medical community is still wrapping its arms around autism. Pieces of a puzzle are often used as a visual representation of autism.

“I think it’s because autism is a puzzling disorder,” Byram explained the symbolism. “I think the puzzle pieces represent hope and the mystery of the disorder.”

Puzzle pieces are featured throughout Sacred Heart’s autism center. They are in paintings on the wall and rugs on the floor.

“Trying to solve that puzzle,” Keremes explained.

In the main room of the center, are toys and games and swings hanging from the ceiling. It’s a room designed to encourage engagement and communication.

“We start with letting them ask for what they want,” Keremes said. “Everything that we do is communication.”

At the resource fair, Owens said her family’s life had improved dramatically since first coming to Sacred Heart’s center.

“He went from speaking one word to thousands of words,” the mother said.

Owens is hoping her children’s early diagnosis—at 20 months and 16 months, respectively—will mean a fuller life.

“Early intervention to me means my kids are going to go to college and get a job and do everything a kid typically does,” she said.

Right now, though, Owens is enjoying the small triumphs. Big deals like eating pudding and drinking through a straw.

“For us, the world is coming to an end we’re so excited,” she said. “Little things, like taking my kids to a restaurant and not getting stared down, getting the look.”

Also at the autism fair, was Bobby Cochran. He and his wife, Wanda, are taking care of their autistic grandson. He recently joined them from Mississippi.

“I think he’s doing alright,” Cochran said, scanning the auditorium, “because Wanda hasn’t come and said, ‘Okay, it’s time to go.’”

The grandparents recently completed the Parent Empowerment Project class. Made possible through a grant from Impact 100, the class teaches how to use the principles of Applied Behavior Analysis with a child. It’s been helpful.

“This empowerment class taught Wanda and I to pay attention to him,” Cochran said. “Like when he has a meltdown, pay attention to what happened right before that.”

Wanda arrives with the couple’s grandson. He holds a small beanbag pouch—featuring puzzle-piece fabric—and a Thomas The Tank Engine train toy.

“It’s called a fidget,” smiled Wanda, motioning to the pouch.

“As long as he’s got this and Thomas The Train he’s alright,” the grandfather said.

Autism Pensacola
(850)450-0656
autismpensacola.org

Emerald Coast Autism Society
(850)736-0879
ecautismsociety.com

Sacred Heart Autism Center
(850)416-4933
sacred-heart.org/childrenhospital/autismcenter/