[galobj viewid=14]In some WNC counties, the number of kids living with autism has more than doubled in the past five years
Editor’s note: This is the first and second piece in a series about Western North Carolina children and adults living with autism. Read about a proposed bill that would, if passed, require all North Carolina insurers to pay for the diagnosis and treatment of autism and consult a list of resources for more information and help.
Two girls swing around each other, hands touching, on a gray February afternoon. One is a head taller than the other. One blonde. One brunette.
They laugh and twirl around; it had been a while since they’d seen each other, and they smile as they tug on each other’s clothing. “Mali! Mali!” one said. “Want to run?”
The answer is superfluous, and the two take off like long-legged gazelles, their long hair streaming like ribbons behind them. They run full-speed down the sidewalk to a classroom building at UNC-Asheville, a program staff member trailing behind them. They go in, and a short while later, the two spin around in a darkened classroom with a group of other students and a collection of UNCA volunteers as they dance to the soundtrack of Teenage Mutant Ninja Turtles.
It’s absolute, head-bouncing fun.
Loud and full of laughter, the group’s fun also has a serious intent. The two – along with about 14 other area children ranging in ages from 5 to 18 – are participants in a pilot project of the Asheville-based nonprofit called The Spectrum. Directed by Sylvia van Meerten, The Spectrum, a program of Dragonfly Forest, is a year-round social program for children and adults with autism. They offer a range of social group for adults with autism – ranging from cooking classes to technology groups.
This group, the Recreation Choice Program, is an after-school program for kids living with autism in Buncombe and nearby counties. In a world where children with autism are met with talk of behavioral plans and treatment – and a world that can be, at times, isolating – this group offers what seems simple, at first: a connection to and with other kids with autism, based on fun activities like coloring or dancing.
“It gives her an opportunity to hang out with kids who get her for being her,” said Asheville resident Michele Lemell, whose 13-year-old daughter, Rebecca, is, this day, surrounded by a table full of markers. She and a few other kids around her age color puzzles with a group of UNCA students who volunteer with the program by designing and leading the activities.
“She doesn’t have to figure people out,” Lemell said. “They don’t have to figure her out. Acting all day long can be a bit tiring.”
‘People are not alone’
Becca Wilson, 16, said she knows what it’s like to feel alone. At the “Recreation Club,” which is what participants call the program, that feeling subsides.
“I have Asperger’s syndrome,” she said as she colors different flags on the puzzle she’s making. Going down the street, she said, it’s hard to tell whether another kid is like her. It’s easier, she said, for kids who use wheelchairs to connect with one another. They can identify one another immediately. It’s harder with autism, she said, and here, there’s no doubt she’s not alone.
“It’s very cool to be in a group and meet people who are like you,” she said, staring into her drawing.
It may be hard, at times, to identify someone with a form of autism, but the number of people living with that diagnosis is significant. According to the Autism Society of North Carolina, the state’s leading organization for people living with autism, there are between 50,000 and 60,000 people with some form of autism spectrum disorder living in the state.
But because there’s no type of central registry, it’s hard to pinpoint just how many children and adults there are in any one particular community. One indicator is the number of students who have a primary diagnosis of autism and a related Individualized Education Plan, or IEP, in the public schools.
The N.C. Department of Public Instruction reported that in the 2010 school year, there were 10,664 students receiving services for autism only, not as a part of multiple diagnosis treatment, in North Carolina public schools. That’s double the number than in 2005.
Eight percent of those children, or 845 students in the 2010 school year, live in Western North Carolina. Buncombe County has the highest number at 251, followed by Henderson County at 121.
But the percentage increases tell a different story. In the last five years, for example, the number grew by 433 percent in Mitchell County, the highest percentage increase in the region. Polk County was second, at 200 percent. In Buncombe, the increase was 70 percent.
(Download a chart of Western North Carolina’s public school districts and the number of children receiving services for an autism diagnosis only.)
That rate of increase, says David Laxton, communications director with the Autism Society, is important to realize, considering the recent round of stress school systems are facing in the current state budget crisis. The rate of increase annually for students with autism is between 14 and 17 percent on average, still well above the growth of the student population as a whole, which is at 3 percent. “We emphasize that people are not alone,” he said. “We are seeing that the number of students with a primary diagnosis with autism has tripled in the last decade.”
Not the odd one out
And for children with that diagnosis, and their families, accessing services to help can be a challenge. “It’s been difficult to keep her in a school setting, public or private,” explained Lemell. Rebecca, a sophomore at Reynolds High School who is in advanced mathematics classes for her age and has some difficulties in social settings, was diagnosed with Asperger’s syndrome last year.
“In a big school setting, it can be exhausting (for children with autism),” she said. At The Spectrum’s Recreation Choices Program, “she doesn’t have to figure people out,” she said. “They don’t have to figure her out.”
The instructions on what happen in the group are spelled out. There’s no room for uncomfortable questions or unclear expectations. On a white wall on one of the classrooms, a volunteer had written instructions on what to do: Introduce yourself, color the mask, watch the movie clip, show off your masks, have a dance party, check-in time.
A typical kid might not need that, van Meerten said. They’d just know what to do. “That’s where the structure comes in,” she said. Group leaders set clear boundaries, and the kids work within them with the help of volunteers.
This model, now at work at UNCA, is a pilot project for the group, one they hope to replicate across universities and colleges in Western North Carolina.
“There’s no great after-school groups for our kids,” said project supervisor Samantha Erway. “People concentrate more on therapy than fun activities. Sylvia’s whole philosophy is that fun activities are therapy.”
“It’s a unique experience,” she said, “for them to come in and be automatically accepted and not be the odd one out.”