Mark Utter, Vermont Writer and Filmmaker With Autism, Dies

Mark Utter in his 2013 autobiographical film, I Am In Here. Credit: File photo

Mark Utter, who was born with a form of nonverbal autism, spent the first half of his life unable to share with others the thoughts, ideas and aspirations that swirled constantly in his head. But at age 30, the Colchester man was introduced to a method of computer writing called assisted typing, also known as facilitated communication. He would spend the rest of his life making new friends and “speaking” to anyone who would listen, often composing long, eloquent prose that could take him hours to painstakingly type.

Utter, who shared his inspirational story in an award-winning 2013 film he wrote, I Am in Here: A View of My Daily Life With Good Suggestions for Improvement By My Intelligent Mind, died peacefully on October 28 at the McClure Miller Respite House in Colchester, one year after he was diagnosed with prostate cancer. He was 59.

Utter’s death was announced this week by Emily Anderson, his longtime friend and assisted typing facilitator, who now works at Green Mountain Self-Advocates, a statewide disability rights organization. As Seven Days explored in an April 11, 2012, cover story, “Utterly Mark: A Vermonter With Autism Makes His Inner Voice Heard Through Film,” Anderson spent years at Utter’s side, gently holding his elbow and helping him type his thoughts into a computer. As he explained at the time, Anderson’s physical contact on his arm “focuses my energy.”

Utter’s autobiographical movie was inspired by the 2010 documentary Wretches & Jabberers, about two Vermonters with autism, Larry Bissonnette and Tracy Thresher, who went on a global quest to change public attitudes about people with disabilities. Utter’s own movie would similarly inspire others to rethink their approach to people with neurological differences.

Throughout his childhood, Utter was labeled “mentally retarded” and treated as though he understood little, if anything, about the world around him. Years later, Utter would astound family members and friends by demonstrating that, in fact, he knew all along what people were saying about him and was capable of deeply creative and complex thoughts. In 2013 he launched a blog called Utterly Mark, to which he contributed regularly for more than a decade. Utter even officiated at Anderson’s 2018 wedding, using facilitated communication to address the ceremony’s attendees.

Mark Utter with Emily Anderson in 2012 Credit: FIle photo by Matthew Thorsen ©️ Seven Days

Utter was “a super-positive person [who] always tried to lighten things up,” Anderson recalled in an interview about her collaborator and friend of more than 15 years. Always greeting people with a big, toothy smile, Utter was deeply intuitive and attuned to other people’s emotions, Anderson said. For example, he could always sense, without being told, when she had undergone an acupuncture treatment and would remark on its positive effects on her.

As news spread of Utter’s death, tributes poured in to Anderson and his surviving family members via email and social media.

“Mark, you taught me to believe in the things I couldn’t see and to trust in what I felt but couldn’t prove,” wrote Monica Hutt, former commissioner of the Vermont Department of Disabilities, Aging and Independent Living. “I am forever grateful for that and for you.”

“Oh, Mark! You are one of my heroes!” wrote Douglas Biklen, founder of the Facilitated Communication Institute at New York’s Syracuse University. “You have brought joy to so many others, and with powerful humility and humor. Thanks for being your own person!”

Main Street Landing cofounder Melinda Moulton, whose own grandson Rowan has a similar form of nonverbal autism and was a friend of Utter’s, described him as “a philosophical and joyous man of ideas, thoughts, wisdom and love.”

Utter is survived by numerous friends and family members, including his sister, Sheryl Vuley, and brothers, Duane and Edmund Utter. As Anderson noted, his late mother, Rollande Utter, was so taken by her son’s movie that, before she died, she purchased him a gravestone inscribed with the words, “I Am In Here.”

According to Anderson, Utter approached his impending death with equanimity, receiving visitors in his final days with his signature smile on his face.

In a 2012 interview using facilitated communication, Seven Days asked Utter, “If you could accomplish one thing by the end of your life that would make you feel happy, what would it be?”

“I want to make sure that Emily is celebrated for believing in people who are different,” he replied. “I also hope that the barriers between people melt.”

In lieu of flowers, Utter’s family asked people to consider supporting his legacy through a donation to Champlain Voices, an advocacy group he helped build, which will continue his work. Use the password “Utterlymark” to access it.

This story was updated on November 4, 2024, to include another of Mark Utter’s surviving brothers, Duane.