BURLINGTON - Autism Spectrum Disorder affects approximately one in every 150 young children in America. In Vermont, the numbers are worse. ASD diagnoses in the Green Mountain State have increased by 20 percent per year since 1997 - compared to the national figure of between 10 and 17 percent.
Despite the trend, though, local parents say autism services are often inadequate, nonexistent or hard to navigate. In 2005, Burlington filmmaker Anne Barbano illustrated the problem with a documentary called Living the Autism Maze.
Last week, Barbano's disability-rights activism took a different form: She started hosting a radio show on Burlington's brand-new radio station, "The Radiator" (see story this issue). "The Next Frontier," airs Wednesdays from 9 to 10 a.m. at 105.9 FM. As Barbano noted in her inaugural broadcast, the show will address the "full disability world," not just ASD.
"I feel as if we have films, we go to talks, but there isn't anything that keeps informing the public about a culture in America and Vermont that we don't know a lot about," Barbano tells Seven Days. Her son Nicholas, 11, was diagnosed with ASD when he was 4. "People can live on the same street as you and really not have a clue as to what [your child's] disability is."
The Vermont Legislature appears to be paying attention. Last fall, concerned parents convened for a series of community forums on autism. Then parents, consultants and educators compiled that feedback into the "State of Vermont Autism Plan," which reached the Statehouse in late January. Though the report doesn't guarantee any funding, it does inform S.274, a bill that would earmark $500,000 for the creation of two "pilot regional autism centers." The legislation responds to documented regional inequities in autism services.
But according to Marshfield resident George Africa, Vermont's autism plan can't possibly solve systemic problems. A guest on Barbano's first show, he began home-schooling his son, now 15, after a "terrible" experience with Twinfield Union School in Plainfield. Africa, who reports receiving "absolutely zip for services," says that even when personal-care assistance is offered, state officials don't adequately publicize it. Moreover, he worries for autistic adults who require help adjusting to working life.
"The need for information is incredible," says Africa, who's convening with other central Vermont parents on February 19 to talk legislative strategies. Vermont's House and Senate education committees are "taking a look" at the new plan, he concedes. "But unless a whole bunch of enthusiasm comes up, [autism] could get back-burnered for another year."