A mother sets up a support group for girls with autism to inspire other parents to be hopeful.
Maybe the therapist was just trying to be nice.
“She’s not going to be a person you’d want to have coffee with,” the therapist 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 two.
“It’s not as easy as you think,” she said. “People start rattling things off, and you’re left in the dark.”
As Dudley speaks on a Sunday afternoon, a handful of parents and children begin filing into the room behind her for My Circle of Girls, a new group she has formed for families like hers, with girls ages two to six on the autism spectrum.
Inside, dance teacher Carlita Victoria turns up the music and turns to the girls, some holding their mothers’ hands or straddling their feet, one girl wildly running and jumping across the floor.
In the back corner of the room, Dudley’s daughter stands alone by the window and stares up at the sky.
In March, the US federal Centres 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 eight-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).
Experts think girls’ two x chromosomes helps protect them against autism and/or the environmental factors that might trigger it, said Dr Rachel Bowman, assistant professor of psychiatry and behavioural science and of pediatrics at Duke University.
But detecting autism in girls can be difficult because most of the research involves boys, she said. If girls with autism do obsess over things, one of the disorder’s warning signs, it’s often over things like princesses and ponies that typical girls also like.
“A lot of times (girls) are overlooked,” Bowman said. “I’m used to it because I deal with it all day, but a lot of professionals have difficulty recognising it.”
Autism ranges from mild to severe. Experts look for deficits in communication – verbal and non-verbal – 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, lining up objects or repetitive language or rituals like Dustin Hoffman’s character counting toothpicks in Rain Man.
In one in four cases, children with autism also have an intellectual disability, what Bowman said used to be called mental retardation. This has come down from 75% as more and less severely affected children are diagnosed, she said.
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.”
Tamara Hicks of Durham, North Carolina, 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 programmes like the TEACHH autism programme. So she turned to websites like Autism Speaks and Facebook, where she found mothers in the United Kingdom facing the same challenges she was.
And she works at it. When she smiles at Skylar, or hugs and kisses her daughter, she gets a blank look back – and keeps smiling.
When Hicks hands her daughter a juice box in the My Circle of Girls group, she sucks the juice up the straw and then lets it dribble out her mouth and onto the floor. Hicks wipes it up.
Skylar, four, doesn’t speak. But she does sing, and she plays the ABCs song and Wheels On The Bus videos she finds by herself on her mother’s iPad over and over.
One day, Hicks said they were out somewhere and Skylar saw a baby, she ran over to the infant and started singing, “Baby on the bus goes, ‘Wa, wa, wa.’”
“I was like ‘Yes! Yes!’”
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 behaviours like making eye contact with small treats, toys or games.”
Results vary widely, but studies show that when intervention occurs between ages two and five, children with milder autism show significantly fewer symptoms by age 10 or 11, Bowman said. In some cases, they no longer even meet the autism criteria.
The numbers keep changing with the disorder, but studies suggest that between 5% to 15% 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.”
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 on the meeting-room floor. “That’s what this is about.”
She hopes that 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.
“It’s exhausting,” she said. “My daughter’s four years old. She’s just started sleeping through the night. I go to work. I’m trying to stay on top of my game. But I’m exhausted.”
The little girl with her arms around her mother’s neck and the far-away look in her eyes keeps her going.
“I am more educated now about what autism is,” Dudley said. “I know my daughter more and what her needs are. I am more aware of resources, and I want to share. … If this group here is a stepping stone (to helping her daughter), if it takes every Sunday for me, if it takes more phone calls, I’m going to do it.” 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.” – The News & Observer/McClatchy Tribune Information Services