Midtown Raleigh News

Durham mom starts Triangle-wide group for girls with autism

"I want her to know I love her, so I say it over and over," says Tamara Hicks, with daughter Skylar. "I sing 'Mommy's on the bus, and I love you' because I know she understands that."
"I want her to know I love her, so I say it over and over," says Tamara Hicks, with daughter Skylar. "I sing 'Mommy's on the bus, and I love you' because I know she understands that." mschultz@newsobserver.com

Maybe the therapist was just trying to be nice.

“She’s not going to be a person you’d want to have coffee with,” she had explained when she told Dawn Dudley her daughter had autism.

At the time, about three years ago, Dudley didn’t know what to say. Her daughter, Trinity, had just turned 2.

“It’s not as easy as you think,” she said. “People start rattling things off, and you’re left in the dark.”

As Dudley spoke, a handful of parents and children began filing into the room behind her for My Circle of Girls, a new group she started for families like hers, with girls ages 2 to 6 on the autism spectrum.

Inside, dance teacher Carlita Victoria turned up the music and turns to the girls in the middle of the room.

In the back corner, Dudley’s daughter stood alone by the window and stared up at the sky.

Last month the Centers for Disease Control and Prevention announced that one in 68 children now has autism, up from the previous estimate of one in 88.

The numbers, based on health and education records for 8-year-olds in 11 states, show the disorder is four and a half times more prevalent among boys (one in 42) than girls, (one in 198).

Detecting autism in girls can be difficult because most of the research involves boys, said Dr. Rachel Bowman, assistant professor of psychiatry and behavioral science and of pediatrics at Duke University.

“A lot of times (girls) are overlooked,” Bowman said.

Autism ranges from mild to severe. Experts look for deficits in communication and social interaction. Children with autism may not speak or may stop speaking. They may not make eye contact or make eye contact when listening but not when responding.

Experts also look for patterns: hand flapping, body rocking, repetitive language or actions.

In one in four cases, children with autism also have an intellectual disability.

But just why autism is rising, no one knows.

“That’s the big question,” Bowman said. “A lot of it has to do with our ability to diagnose it. I don’t know that we really have a true answer.”

‘What does that mean?’

Tamara Hicks of Durham cried for three days after her daughter was diagnosed.

“I didn’t know much about autism,” she said. “I was like, ‘What does that mean? Will she have children? Will she get married.’ ”

Hicks, a single mother, didn’t know anyone with an autistic child, and she couldn’t leave work to take her daughter, Skylar, to day programs like the TEACHH Autism Program in Chapel Hill.

So she turned to websites like Autism Speaks and Facebook, where she found other mothers facing the same challenges.

And she works at it. When she hugs and kisses Skylar, she gets a blank look back – and keeps smiling.

When she hands her daughter a juice box, the 4-year-old sucks the juice up the straw and then lets it dribble out her mouth and onto the floor. Hicks wipes it up.

Skylar doesn’t speak. But she does sing, and she repeatedly plays the ABCs and “Wheels on the Bus” videos she finds by herself on her mother’s iPad.

One day, Hicks said they were out somewhere and Skylar saw a baby, ran over and started singing, “Baby on the bus goes, ‘Wa, wa wa.’ ”

“I was like ‘Yes! Yes!’ ”

Realistic hope

The most important thing, Bowman said, is to start therapy early.

“You figure out what things matter the most” to the child, then reward appropriate behaviors like making eye contact with small treats, toys or games.

Results vary, but when intervention occurs between ages 2 and 5, some children with milder autism show significantly fewer symptoms by age 10 or 11, Bowman said.

The numbers keep changing, but studies suggest between 5 and 15 percent of children with autism have “very good” outcomes, living independently as adults, she said.

“My approach is to present information in an objective, compassionate manner and inspire parents to be hopeful,” Bowman said.

“A lot of parents have said to me, ‘We saw this expert, and he said our child would never talk,’ ” she continued. “What’s the point if we can’t offer hope? I call it realistic hope.”

‘A good time’

Dudley started My Circle of Girls because she had looked for a group for Trinity and couldn’t find one.

“We’re just here to have a good time,” she tells the other mothers and a couple of fathers as she cradles her daughter in her lap

She hopes Trinity will find a friend. But the group also gives Dudley, an information specialist for Durham County government, a chance to share what she’s learned and find support for herself.

The little girl with her arms around her mother’s neck and the far-away look in her eyes keeps her going.

And that therapist three years ago?

“Today I’d say, ‘No,’ ” Dudley said. “My daughter is someone you should be honored to have coffee with, because maybe she’ll teach you something about life.”

“She’s more than autism. She’s Trinity first.”