Teddy DeGolier is One Person With Autism 

by Annette Pinder 

“If you’ve met one person with autism, you’ve met one person with autism.” The phrase, coined by Stephen Shore, an autistic professor and advocate, highlights that autism is a broad spectrum and that each person has unique strengths, challenges, and personalities. Nothing could be truer for 13-year-old Teddy DeGolier.

Teddy and his family moved from California to Western New York when he was 3 months old. His early development seemed normal, but changed at 12 months. He started losing developmental milestones, ate only pureed foods, burnt toast, and overcooked bacon. By 15 months, he had lost all verbal communication.

Following a friend’s advice, Nicole took Teddy to the Robert Warner Center at Children’s Hospital, where he underwent extensive testing. Teddy was diagnosed with autism spectrum disorder (ASD), OCD, ADHD, and sensory processing disorder at 18 months. “We hit the ground running,” Nicole said. “As soon as you get the diagnosis and understand the importance of early intervention, your whole life changes.” Suddenly, Teddy had a care coordinator, occupational therapist, physical therapist, and a traveling special education teacher providing home-based therapy through New York State’s early intervention program. “I was with Teddy 24-7 and the only one who could connect with him. He wouldn’t look at anyone, including my husband Ted,” Nicole explained. Eventually, Teddy qualified for a preschool program through Summit Educational Services, where he began to thrive.

Then, Nicole learned about a stem cell clinical trial for autistic children conducted by researchers at Duke University in North Carolina. Following her doctor’s advice in California, Nicole stored Teddy’s umbilical cord blood cells because of her own blood disorder, Immune Thrombocytopenia (ITP). Her ob-gyn said the cells might someday help Teddy if he inherited her condition. So, when they received a call from Duke informing them that Teddy was eligible for the autism study, the family joined him for an infusion of his own stem cells. What happened six weeks later was truly miraculous. Teddy’s attentiveness, engagement, eye contact, and connection improved dramatically. “We felt like we were on an amusement ride, and didn’t know where we were going next,” Nicole said. Teddy returned to Duke for a second infusion and soon outpaced his peers at Summit.

Meeting Teddy was a remarkable experience for me. “He is always moving, talking, and pontificating about something, even in his sleep! We call him the professor,” said Nicole. During our chat, Teddy proudly shared his full name: Roy Theodore DeGolier V. After spending most of his life in self-contained classes, Teddy now takes Regents-level general education classes at Newfane High School, where his favorite subjects are Biology, Chemistry, Math, Social Studies, and Earth Science. He eats breakfast at 5:30 am, is dressed by 6 am, and boards the school bus at 6:20 am. “I remember a lot of information and details, which sometimes makes it harder to listen and focus, but I’ve made a lot of progress. My weekly sensory integration classes help,” Teddy said. He loves basketball and the Chess Club. “I learn about chess strategies on YouTube, and recently beat my teacher in a match,” he added. Teddy cares about the environment, conservation, and geology, enjoys going to Penn Dixie to collect fossils, and his favorite movie is Home Alone. He loves the family’s golden doodles, Duke and Nova; their two cats, Principessa Meow-Meow and Blaze; Brownie the rabbit; and Bella the fish. He looks forward to leading his team at Summit’s autism walk on May 2 and celebrating his 14th birthday on June 7.

Meanwhile, Nicole and her husband Ted are busy. Their 8-year-old daughter, Bella, and 12-year-old son, Jack, are also neurodivergent. Ted works as an IT director at a local company. Once a film publicist, Nicole now facilitates a cooking class at Terra House in Akron called Community Cooking for people of all abilities. She also co-hosts The Link, a virtual support group for parents of children with special needs, on the second Monday of every month through the Parent Network of WNY. She appreciates her husband Ted’s support, as well as the services of Baker Victory Health Center, Molly Pitman of Sweet Charlotte’s, Kate Houck of David’s Refuge, and her Facebook support group. Nicole, who is in awe of Teddy every day, says, “Being a parent is the most important job I have ever had. Nothing I’ve ever done is more important than trying to raise good humans. Putting good people out into the world is more important than anything. They become incredible advocates if you empower them.”