Over the past 20 years, the rate of autism has increased in the U.S. by 600 percent. In 2000, according to the Center for Disease Control, one out of every 150 children was diagnosed with autism. Now, that number has jumped to one in 88. Autism or Autism Spectrum Disorder (ASD) is five times more common in boys than girls, regardless of the child’s racial, ethnic or socioeconomic group.
Deb Sullivan Gravelle, executive director of Extreme Sports Camp (ESC), a Carbondale nonprofit organization that works with ASD kids and adults, isn’t sure what’s caused the spike. “There are certain pockets in the U.S., areas that have better services, and people move there,” she said. The range of symptoms and behaviors associated with autism, called the spectrum of autism, has also increased, widening the diagnostic net.
Recent studies from the University of California link autism with an increase in prenatal exposure to air pollution, pesticides and chemicals such as polychlorinated biphenols (PCBs). And, said Gravelle, the way women give birth can also play a role. “A study in England found an increased incidence of autism in children whose birth had been induced.”
According to Autism Speaks, a U.S.-based research and advocacy group, autism and Autism Spectrum Disorder are “general terms for a group of complex disorders of brain development.” In other words, autism is complicated. It includes a host of symptoms and a range of symptom severity. Gravelle, who joined ESC last year, calls someone with ASD as being “on the spectrum.”
“On one end, you have Temple Grandin,” she explained. Grandin, 66, is a professor at Colorado State University, noted animal behavior consultant, and author. She was portrayed by Claire Danes in a 2010 biopic. “[Grandin] is high-functioning, but she has some different behaviors, and she’s socially awkward,” said Gravelle.
“On the other end, you’ll see someone rocking and making noises,” she added. Or using other self-soothing behaviors such as “scripting” — repeating phrases from movies, music and stories. Like, Dustin Hoffman in Rainman? Maybe, said Gravelle. “Their behavior could be more impacted but they could still function at a high cognitive level.”
Other diagnoses along the spectrum include Asperger’s Syndrome and a general diagnosis of Pervasive Developmental Disorder or PDD-NOS.
And, said Gravelle, ESC works with them all. “We don’t discriminate.”
ESC opened its doors in 2004 with a summer overnight sports camp, which now features eight 1-week sessions jammed with activities, including water sports, rock climbing, biking, hiking, a ropes course, yoga, disc golf and more.
At ESC’s winter day camp, ASD kids and adults enjoy five days of skiing and snowboarding at Snowmass, including lessons from Aspen SkiCo staff. ESC provides training for Aspen SkiCo employees so they can better serve the ASD population.
ESC’s buddy program allows ASD clients to take group lessons with skiers who don’t have ASD. U.S. Forest Service regulations require that all ski instructors be Aspen SkiCo employees. So, ESC buddies are “like para-professionals in the classroom, specially trained in autism,” explained Jill Pidcock, ESC developmental director. “The ski instructor is the certified, credentialed professional, and the ESC buddy understands ASD needs and assists them.”
The partnership has benefited both SkiCo and ESC. Winter day campers get discounts on lessons and SkiCo employees get to serve everybody on the mountain. “All the ski pros have an opportunity to learn about autism,” said Pidcock.
Both Pidcock and Gravelle agree that ASD education should be experiential and hands-on. “It helps develop confidence, physical wellness and independence,” said Gravelle, who was once Bermuda’s national sailing director and is ranked 4th in the U.S. for women’s double-handed sailing.
Now that ESC is firmly rooted in the Roaring Fork Valley, it’s expanding once again. The organization recently purchased a house in Carbondale that will eventually be home to three ASD adults. “It’s not a group home,” explained Gravelle. “It’s a life program, community-based with natural supports.”
The goal is for the residents to participate in life like any young adult who lives with roommates — share meals, do laundry, go to work and enjoy a social life. “They won’t be inside four walls or institutionalized getting therapies,” added Gravelle. “They’ll be out in life, fully integrated.” ESC hopes to have the house ready for its first resident by March 2014.
For more information on this season’s winter day camp, scholarships, and the upcoming Light it Up Blue Aspen fundraiser, go to www.extremesportscamp.org.