Sunday profile: Carbondale-based Ascendigo CEO Peter Bell’s personal connection with autism, ‘the hard way’
Peter Bell wouldn’t be an expert in autism if his oldest son hadn’t been diagnosed with the spectrum disorder. He has a degree in hotel management and masters of business administration.
“My wife and I like to say that we were recruited the hard way,” said Bell, CEO of Ascendigo, a Carbondale-based autism services nonprofit.
Ascendigo — a portmanteau of the verb “ascend” and indigo, a color symbolizing autism — started in 2004 under a different name as an outdoor adventure camp for young people on the autism spectrum.
“I came to that camp with my own son, Tyler, who is now 25,” Bell said. Tyler returned to the camp for years, and when Bell and his family moved to the Roaring Fork Valley a few years ago, Tyler took part in the adult programs offered by Ascendigo.
The organization has grown in terms of budgets, programming and individuals served, with no signs of slowing down.
AUTISM IS TREATABLE
Ascendigo wants people with autism, young and mature, to thrive within a community and lead healthy lives.
“We have dealt with a history in the world of autism, that we don’t really know what potential there is,” Bell said. Many people discount those with autism as having nothing to contribute to the community. “That’s just not true,” Bell said.
The condition, officially known as autism spectrum disorder, has a wide range of symptoms. Mild instances of the disorder include difficulty speaking or obsessive behavior, and in more extreme cases a person may be non-verbal or exhibit aggressive behavior.
The rapid increase of autism spectrum disorder in the U.S. and around the world has led to countless studies and theories, many controversial, about the root causes of the disease.
The factors contributing to autism may be both genetic and environmental. Some studies point to children raised near busy roads, or near farms with pesticides, or born to older parents, as potentially increasing the chance of autism.
Though the underlying causes are unclear, for Bell, finding the cause or cure for autism is not the focus right now.
“If I could wave my magic wand and say, ‘I’d rather have a child that doesn’t have to face those challenges,’ I might choose that,” Bell said. “That being said, I love my son. He’s great, he’s awesome, but he has some issues that are hard to deal with, both for him and for the people who help care for him,” Bell said.
Bell believes people with autism can do more than they or anyone else believes is possible. Ascendigo’s mission “really is to help people with autism realize their potential,” Bell said.
Autism is treatable, mostly through behavioral therapy, Bell said.
Ascendigo has several types of programs. Some are aimed at supporting families with young children on the autism spectrum, and others assist adults with autism live healthy, productive lives.
The services range from seasonal, short-term adventure camps to full-time housing and living situations, but Ascendigo also partners with schools for educational programs.
The organization has a waiting list of families in the region who have children diagnosed with autism and are seeking to take part in support services.
Ascendigo has seven individuals with autism living in four houses in and around Carbondale. Five or six of them are employed at various businesses, including Marble Distilling Co. and Peppino’s Pizza.
“Living with autism requires a balanced life and, unfortunately, not many people with autism are able to get outside and do recreation and exercise,” Bell said. That’s why the summer sports camps are so critical.
While the summer camp expanded each year, Bell was working in activism for people with autism. From 2004 to 2007, he was president and CEO of Autism Now, which focused on science and advocacy. President Barack Obama appointed him to the President’s Committee for People with Intellectual Disabilities in 2012. In 2012, he joined Eden Autism in New Jersey, an autism services provider.
Ascendigo has big goals and plans to expand in the valley, including potentially replicating the programming elsewhere.
Bell hopes to find a permanent home for the outdoor adventure programs in the next year, and continues to expand the adult programs with two to four new full-time residents.
He also wants the Ascending to Adulthood, a summertime six-week course to help young adults with autism learn the skills to live independently within their community, to become a year-round offering.
“We really needed a leader like Peter, with his background and his capabilities, to manage and execute on that growth,” said Sallie Bernard, Ascendigo founder and chair of the board.
“He’s overseen large organizations, and so he’s a good business person. But also understands autism as well as anyone else in the world, so it’s quite a nice combination,” Bernard said.
In addition to improving the organizational structure, clarified reporting lines, and improving operations, Bell has helped communicate Ascendigo’s mission to outsiders, Bernard said.
Bernard thinks of the annual Presidents Day Weekend fundraising gala Ascendigo Blue Aspen (2019 tickets start at $300 for bar seating and $500 for a table seat). Bell hosted the 2018 event, and Bernard appreciated how he remained respectful of the families and individuals living with the disorders, without stressing the negatives of the condition, and engaged the community and donors.
“He’s able to get it all together and say things in the right way,” Bernard said. “We’re all about the positive, and having a good life. Peter gets that, and he’s representing us in just the right way,” she said.
Part of Ascendigo’s present and future success is the community of the Roaring Fork Valley.
“Ascendigo has spent the better part of 15 years helping this community understand the importance of people who have autism, and how they can be significant contributors to the overall wellbeing of a community,” Bell said.
Ascendigo itself has also worked to help the community. And at 35 full-time employees — up from around 20 when Bell started in May 2017 — Ascendigo is one of the larger employers in Carbondale.
Valley View Hospital reached out to Ascendigo recently looking for help in treating an individual with autism who was admitted to the emergency room. The organization has helped law enforcement with presentations and trainings on dealing with autism spectrum persons who officers may encounter.
Bell wants Ascendigo to become an exemplar of what people with autism can do with the right therapy and better quality of life. Overcoming the challenges of autism, behavioral and physical, is difficult, but Bell sees results and wants to share them with other families.
“If we can make the challenges better because of our activities, and if we have demonstrated that what we do results in a better quality of life, that will be a good outcome for the autism community as a whole,” Bell said.