Helping kids on autism spectrum
By Nicolette Toussaint
Sopris Sun Contributor
Last fall, signs saying “Ascendigo” replaced those saying “Extreme Sports Camp” in Carbondale’s Third Street Center. The name change reflected the coming of age of a local non-profit. By serving dozens of clients from the Front Range and across the United States, Ascendigo has begun to put Carbondale on the map of places making a difference for individuals on the autism spectrum.
Currently, Ascendigo occupies two Third Street suites, employs 20 people, engages a host of volunteers and has even pioneered a residential care facility here in Carbondale. For kids, Ascendigo provides summer outdoor experiences and partners with the Aspen Skiing Company to offer winter ski and snowboard lessons. It also offers vocational support and retreats for “high-functioning” autistic adults.
“Ascendigo is a living lab for trying out all these things and then exporting them,” explains Hugh Zuker, who was hired as the non-profit’s executive director last fall. Zuker says that Ascendigo is “putting best practices online in collaboration with a national advisor, creating certifications for service providers,” training volunteers and partnering with other local non-profits.
With autism reportedly affecting one out every 68 American kids according to some statistics, it’s a needed resource, but perhaps not one you’d expect to find in a small mountain town.
“What’s unusual is that we have such a supportive community,” says Zuker. The setting is beneficial both in outlook and “in terms of the people who are working with the agency. It takes quite a level of empathy and training to teach a person with autism challenges, because everyone is different.”
The Aspen idea
Zuker traces the roots of Carbondale’s supportive spirit back to an “ethos growing out of the Aspen idea of nurturing mind, body and spirit” and notes that Ascendigo’s programs draw on the NDBI (Naturalistic Developmental Behavioral Intervention) theoretical framework of expeditionary and outdoor learning proven to help autistic children. In a town called “the base camp for adventure” by the Carbondale Chamber of Commerce, the NDBI approach fits right in.
Ascendigo was founded in 2004 as Extreme Sports Camp by Tom and Sallie Bernard, an Aspen couple who had three sons, one of whom was autistic. The Bernards wanted all three sons to have the same recreational outlets, but for an autistic child, skiing and camping ranked as “extreme” sports. Opportunities were few. Zuker says that until recently, “kids on the lower end of the autism spectrum were kept out of schools because of their disruptive behavior,” had little recreation and “wound up pretty much living in their own rooms in their parents’ houses.”
Given the extreme demands on parents’ time, finances and energy, “every parent who is dealing with a child on the autism spectrum is a hero,” he says. “Not a hero as we usually think of them, but facing a 24/7 challenge to care for a person who needs support for years on end.” Thus, Ascendigo supports families as well as kids. “If a child attends camp for a week, that’s a respite for an overwhelmed and exhausted caregiver,” says Zuker.
Having achieved Program Approved Service Agency (PASA) certification last year, Ascendigo can accept Medicaid payments. Medicaid does provide financial support for autistic children, but parents can’t qualify for aid until the child has been officially diagnosed — and in Colorado, there’s a nine-month waiting list for diagnosis.
What’s more, diagnoses are complex. In 2013, when the American Psychiatric Association published its official medical handbook, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), it combined autism and Asberger’s Syndrome to create something called the “autism spectrum disorder.” The disorders within that spectrum include communication problems, challenges with social relationships and repetitive behavior, which can range from rocking to things like the endless repetition of a phrase or gesture. But each patient is different.
Zuker says that for an autistic child, summer camp can provide a remarkable learning opportunity. For example, last year, a kid who initially didn’t talk at all — who didn’t want to even get out of his bunk — wound up going on weekend hut trip. “At the end of the hike, he gave the instructor a kiss on the cheek and said ‘thank you.’”
The price tag for a week of camp is $2,500, but Ascendigo’s cost is double that, reflecting the level of support needed to care for the highly individual campers. While 20 to 24 kids attend camp, it takes 50 staffers to run it, and thus, no child receives less than a 50 percent scholarship.
Ascendigo’s major star-studded, fund-raiser, “Light It Up Blue Aspen,” will be held on Feb. 13 at the Hotel Jerome. All proceeds will directly benefit Ascendigo’s programs. For details and tickets, see http://lightitupblueaspen.org or call 927-3143.
What: Light It Up Blue Aspen
Where: Hotel Jerome in Aspen
When: 6:30 p.m. cocktails,
7:30 p.m. dinner on Feb. 13
Why: Fund-raiser for Ascendigo
How much: Ticket prices vary
Published in The Sopris Sun on February 11, 2016.