An increased demand for autism services finds Chapel Hill-Carrboro City Schools lacking

Kristine Lewis’ autistic son was in the first grade at Chapel Hill’s Ephesus Elementary when she decided to pull him out for home-schooling.

“We had such a good experience with Chapel Hill schools with our older children, I just assumed everything would be set up for him and it would continue to be great for him, as it was for them,” she said. “But he was regressing. He certainly wasn’t making any progress.”

April is Autism Awareness month, and this year’s marks a time of transition for some local autism resources.

As childhood autism rates increase and at least one support service prepares to close, parents worry that the school system isn’t prepared to meet growing demand. But Chapel Hill-Carrboro City Schools special education officials say they are keeping pace.

Autism increases statewide

Lori DeTrude, executive director of the Exceptional Children special education program in the Chapel Hill-Carrboro City school district, said the number of autistic children in the district has doubled in the past decade and now totals about 165.

That increase follows national trends.

Last month, the Centers for Disease Control and Prevention released results showing that autism prevalence increased by 23 percent nationwide from 2006 to 2008. The study is the agency’s most recent analyzed data.

“The rates have increased all across the counties that we covered in North Carolina,” said Julie Daniels, North Carolina principal investigator for the study.

Daniels could not give county-specific numbers for confidentiality reasons, but said Orange County’s are generally higher.

She said that can be attributed, in part, to the diagnostic services available locally through resources like UNC Hospitals.

And in general, children are being diagnosed with autism more frequently, Daniels said.

“It’s fairly clear that more people are aware of autism and more parents are seeking that diagnosis,” she said.

Services move away

As prevalence grows, so does demand for services, and local need could be greater after the Frank Porter Graham Child Care Center closes in July 2013.

The program is already serving fewer children this year because of its budget-related closing.

There are 78 children enrolled in the program, which educates children with disabilities alongside their peers. Director Kate Gallagher said about 20 to 25 percent of them have disabilities, though she could not give specific numbers on autism.

The center notified parents about the closing last year to give them time to find another childcare center.

“It’s a transition. I think it’s difficult for all families,” she said. “For families of children with disabilities, they probably feel like there are fewer good options.”

Gallagher said the public schools will provide program placement for children aged 3 to 5. For those who are younger, she said other high-quality options exist locally.

But one resource notably isn’t available to local autistic students.

The Frank Porter Graham Child Development Institute — which hosts the childcare center but is not closing — is one of three sites through which the National Professional Development Center on Autism Spectrum Disorders operates.

Sam Odom, director of the institute, works with public school systems in 12 states to create training programs for teachers. But he said it hasn’t worked with the state of North Carolina.

“For our work to begin, we do require our states to form state teams that would be involved in training and professional development,” Odom said. “We really looked for states that were ready to begin to work in this area rather than states that have a higher prevalence.”

He said he hopes to partner with North Carolina schools soon, and many parents agree.

Lisa Kaylie, whose autistic son is a student at Ephesus Elementary School, wishes the school system had access to the institute’s resources.

“It has definitely been frustrating for me,” she said. “It is very difficult to see that that institute, which is not five minutes away, is flying to Indiana.”

Despite other local autism-related services, Kaylie said she has often seen the burden of providing care to autistic children fall on the public schools.

“The schools are really becoming the last place for parents of special needs children in general to get services and support,” she said.

Bridging the gap

Kaylie’s son is in a class of children in kindergarten to second grade with a range of autism spectrum disorder diagnoses. The class is led by one teacher and three aides.

“The teacher really has a lot to do,” she said. “It’s a pretty broad range for one classroom.”

But DeTrude said the schools’ resources are adequate. She said there are six autism specialists who work in district schools and around 90 Exceptional Children teachers, who must be certified in special education.

“We have a variety of people that support them in the regular classroom settings as well as in the special education settings,” Detrude said.

Though Kaylie said she is worried that the district isn’t preparing for the growing number of autistic children, DeTrude said the school recognizes growing demand.

She they will add a special education classroom next year, bringing the district’s total to 25. One of the six specialists is also recently hired.

Still, Kaylie said she wishes schools would partner with UNC for autism resources and provide more thorough teacher training.

And she said she isn’t willing to wait passively for better autism services — she sits on the Autism Society of North Carolina’s Orange Chatham chapter and works to support parents with autistic children.

“I will definitely do everything I can to make sure it gets better because North Carolina is an amazing state and Chapel Hill is an amazing city. The potential we have here is huge,” Kaylie said.

Contact the City Editor at city@dailytarheel.com.