The autism puzzle

Early interventionist Stacy Kephart works with Tarrone Gordon, 4, who is autistic, once a week at his family's home. She encourages him to interact with her and to follow through on tasks.
Early interventionist Stacy Kephart works with Tarrone Gordon, 4, who is autistic, once a week at his family's home. She encourages him to interact with her and to follow through on tasks.

Taronne Gordon abruptly stopped talking about a month before his second birthday. He had been speaking in short sentences. But suddenly, everything just changed.

"He's asking for chips and drinks, and the next day, he's screaming and pointing at things and not being able to tell me what he needed," said his mom, Yolanda Gordon, 27. "It was like overnight, he lost it."

Taronne, or T.J., as the family calls him, was diagnosed with a mild form of autism after Gordon took him to her pediatrician for help. "She asked if he talked," Gordon said, recalling her visit to the doctor. "I said he mostly screamed. I started to see that we had a problem."

T.J., now 4, has been receiving several forms of therapy to help him communicate and function better. His social skills have improved; he talks in short phrases and he kisses and hugs Gordon.

Still, his attention span is short -- Gordon struggles to get him to sit long enough to eat lunch -- and he has some repetitive behaviors, such as clicking his tongue and humming.

But Tarrone's early diagnosis -- before the age of 3 -- means that he's more likely to benefit from therapy. Researchers agree that early intervention can dramatically improve a child's future and his or her ability to function in society.

The problem is that many autistic children aren't diagnosed until they're much older. Nationally, autism is usually diagnosed around the age of 3, said Craig Stoxen, president and CEO of the South Carolina Autism Society. But in South Carolina, he said, many children are almost 5 before they get help.

"The earlier intervention can start, the better the long-term outcome," said Stoxen. "We're still having issues with getting appropriate diagnoses as early as possible."

Autism is characterized by an inability to communicate or interact socially with other people. Often, autistic people display unusual behaviors, such as repetitive speech, tantrums, oversensitivity to sound and other sensory cues.

Researchers at the U.S. Centers for Disease Control and Prevention now say that studies show that as many as 1 in 150 American children have an autism spectrum disorder, and the symptoms may range from mild to severe.

That's a dramatic change from just a decade ago, when autism was believed to be an extremely rare condition that affected as few as 10 to 15 children in 10,000, Stoxen said.

"That's an incredible change in a short period of time," Stoxen said about the statistics. "It's getting more attention because more and more people are getting diagnosed with it."

One reason for that is that the CDC has campaigned in recent years to increase public awareness about childhood development. Just as parents observe their baby's physical growth, watching milestones in a child's behavior can lead to earlier detection of autism and other developmental disabilities.

And though many experts say autism can't be definitively diagnosed until at least 18 months of age, they note that parents are usually the first to realize that something might be wrong.

Diagnosing autism is complicated by the wide range of impairments that it includes -- and also because the disorder seems to develop at different rates.

A new study by the Kennedy Krieger Institute in Baltimore suggests that about half of children who are diagnosed with autism showed signs by their first birthdays. But others seem to develop normally and then regress, gradually losing social and language skills.

The cause of the condition isn't known, and there is no cure, but behavior therapies can be effective at improving the ability of a child to function.

"The mind is quite a sponge when they are young," Stoxen said.

'We have milestones'

Once a week, Tarrone receives an in-home session using a therapy called applied behavior analysis, or ABA, one of several common approaches to helping children with autism. ABA involves training the brain to think and do things in a sequential order and to respond to social cues.

Early interventionist Stacy Kephart, who works with the Easter Seals program, spends an hour playing with him, encouraging him to say words, complete tasks such as sorting toys by color or shape and answer questions.

At one point, Tarrone turns to kiss Kephart, something he probably wouldn't have done a year ago. Kephart smiles. "Awww, you giving me kisses?" she says. "Thank you!"

Gordon said Tarrone, who attends a preschool program at the Central Child Development Center, also receives both speech therapy and occupational therapy, which helps him with basic skills like feeding and dressing himself and fine motor skills.

Gordon, a divorced school bus driver who has two daughters, ages 7 and 1, has been diligent about using the available resources to get Tarrone the help he needs. Some South Carolina counties don't offer such therapies, she said.

"Some days I feel like crying," she said. "Some days we have these milestones where he's learning something and he shows me. Some days, I grieve for my child."

Gordon is also a volunteer and a family partner with Family Connections of Rock Hill, a nonprofit, privately funded agency that serves the families of children with special needs. She is pursuing a degree that will allow her to teach special education.

Hollye Reid, area coordinator with Family Connections, said many families face obstacles to getting necessary help for autistic children. For example, she said, some children score too high on IQ tests to qualify for the treatment they need.

"Some kids don't get diagnosed until they're 12 or 13. They are high-end functioning," Reid said. "They're always the ones that are considered the odd child."

'They look normal'

Parents sometimes feel they're being judged by strangers because autistic children behave differently, but the disability isn't obvious, Reid said. Parents may avoid going out in public for that reason.

Unlike children with Down's syndrome, for example, "children with autism have no particular look about them," Reid said. "Nobody else knows the child is disabled, because they look at them and they look like a normal child."

Autistic children tend to be socially isolated, she added, because they can rarely participate in activities with other children unless the activities are created by the parents.

"Kids with disabilities learn by mimicking what's around them," she said. "So if they're put in a class with other kids with disabilities," they don't have a chance to learn normal behavior.

But Reid said awareness is increasing as the number of children and adults who are considered autistic continues to grow.

"To me, it makes all the difference to invest during their school years, and before and after their school years," Reid said, "in helping them be productive members of society."