Leucovorin Helps Nonverbal Autistic Boy Find His Voice at Age 8
Nathaniel Schumann had notes — years’ worth of them.Having spent much of his childhood barely able to mutter more than a few words at a time, the young boy began speaking in full sentences at age 8. His first order of business? Setting the record straight.“He had a laundry list of everything that upset him throughout the years,” his mother, Dr. Kathleen Schnier, told The Post with a laugh.Nathaniel Schnier, a 13-year-old with autism, has shown positive changes thanks to leucovorin. Courtesy of Kathleen SchnierFrom disappointing dinners and denied desserts to long-held grudges against his older sister, it was clear Nathaniel had been waiting a long time to be heard.“He was retaining absolutely everything,” Kathleen, 54, said. “People weren’t having him be part of the conversation or just assuming he wasn’t understanding it. But it was all there.”Now 13, Nathaniel is one of a growing number of young people with autism who have found their voice with the help of leucovorin — a cheap, generic drug that’s opening up new channels of communication, one overdue complaint at a time. A voice gone quietThe second child of Kathleen and Paul Schumann, Nathaniel was a babbling, social toddler who made eye contact easily and engaged with the world around him.But soon he began to fall behind, missing developmental milestones in his early years.“He didn’t start walking until 14 months, and then he started regressing with his words,” said Kathleen, who works as a provost and chief academic officer at Colorado Tech University. “That was when I started realizing something was off.”At first, doctors dismissed her concerns, suggesting she was simply comparing Nathaniel to his older sister, who had walked and talked early.The Schnier family lives in Phoenix, Arizona. Courtesy of Kathleen SchnierBut Kathleen — ever the determined “mama bear” — pushed for answers. She enrolled Nathaniel in early intervention services at just 17 months old, including speech, developmental and occupational therapy.By age 2, however, Nathaniel was only able to repeat what others said or use a single word to express basic wants and needs, like “water” or “outside.”At 3, Nathaniel was diagnosed with autism, receptive-expressive language disorder and ADHD.“You could never have a conversation with him,” Kathleen said. “That was the most horrendous thing as a parent: knowing that you can’t have a conversation with your own child, or that somebody could hurt him and he couldn’t tell you.”A new frontier in treatmentFollowing his diagnosis, Nathaniel continued with multiple therapies. But Kathleen kept digging for other options. In 2021, she came across a notice in the Federal Register recruiting participants for a double-blind clinical trial led by Dr. Richard Frye.“It was like something clicked. He went from one or two words to full-on sentences within six months.”Kathleen SchnierThe pediatric neurologist was studying whether leucovorin could help autistic children with cerebral folate deficiency — or a shortage of vitamin B9 in the brain.Researchers believe up to 70% of autistic children have antibodies that block the transport of folate into the brain, leading to these deficiencies and contributing to speech delays and behavioral challenges.Leucovorin has been used safely for decades. REUTERSFrye theorized that leucovorin, a form of folate, could bypass the block and more effectively deliver the nutrient to the brain, potentially easing symptoms. The drug was first approved in 1988 to reduce the toxic effects of chemotherapy.In an early study of 44 children, Frye found that 67% of those who took a twice-daily leucovorin pill showed improvements in both receptive and expressive language within 12 weeks. None experienced serious adverse effects.“If you’re going to the doctor and looking for an autism pill, it doesn’t exist,” Frye, now director of research at the Rossignol Medical Center in Phoenix, previously told The Post. “But leucovorin has helped a lot of children.”The drug costs about $100 per month without insurance, and as little as $10 with coverage.Finding Nathaniel’s voiceKathleen was intrigued — and amazed to discover Frye’s latest study was taking place at Phoenix Children’s Hospital, just a mile and a half from their Arizona home.After testing confirmed that Nathaniel had both the antibody and a cerebral folate deficiency, he was enrolled in the trial. It became clear that he hadn’t been given a placebo almost immediately. “When he started taking the leucovorin, it was like something clicked,” Kathleen said. “He went from one or two words to full-on sentences within six months.”Thanks to leucovorin combined with multiple therapies, Nathaniel can now speak after spending most of his childhood nonverbal. Courtesy of Kathleen SchnierWith his new ability to speak, Nathaniel finally found a way to express what had been locked inside for years.“The TV in my brain, I can say it in my mouth,” Kathleen remembers her son telling her. “It was always there, he just couldn’t say it.”But she’s careful to point out that the medication wasn’t a cure-all. Nathaniel had been enrolled in speech, developmental and occupational therapies since he was 17 months old — and those interventions laid the foundation for his progress.“I don’t want people to be like, ‘Oh, we’re going to cut services for disabled children, but here’s a pill.”Kathleen Schnier“Suddenly, he had the capability of talking, but he had to learn how,” Kathleen said.“When you have a conversation with a person, you have to ask them things and listen to them. It’s not all what you want to talk about the whole time, and he can do that now — but leucovorin didn’t do that for him,” she explained. “Speech therapy did that for him.”Many of Frye’s patients have continued their therapeutic interventions while taking the drug. “You have to treat a lot of things to make the body well,” he said. “What [leucovorin] does, we think, is accelerate the effectiveness of all these therapies.”Speaking freely, living fullyToday, Nathaniel takes both guitar and trumpet lessons. He’s a member of the Phoenix Children’s Chorus and recently sang the national anthem at a Diamondbacks game.The 13-year-old is also active in Special Olympics golf, swims on a local team and is working toward scuba diving certification. Last month, he even flew solo to New York City to visit his sister.“I want to be an ice cream man,” Nathaniel told The Post as he dashed out the door for school, dreaming of his future. Nathaniel experiences no side effects from leucovorin, aside from brief irritability that faded within weeks of starting the medication. Courtesy of Kathleen SchnierAs the Trump administration moves to expand access to leucovorin for families like the Schniers, Kathleen says she supports the effort — but with a major caveat.“This is not a magic pill. You are still going to have to put in the hard work, and it might not work,” she said, noting that several participants in Nathaniel’s trial didn’t experience improvements on leucovorin.“It definitely is in [Nathaniel’s] favor to be taking this medication, but I don’t think it’s a wonderful drug for everyone,” Kathleen said.She also worries that if too much attention is given to the drug, the critical services that many children depend on could fall by the wayside.Just this month, Arizona began cutting $47 million in services for up to 18,000 disabled children due to budget shortfalls — a move local advocates say will cause “catastrophic damages” to their families.“I don’t want people to be like, ‘Oh, we’re going to cut services for disabled children, but here’s a pill,’” Kathleen said.“If you’re going to work toward supporting the disabled community, you have to open up everything to them — and then you are going to see those amazing results that you see with Nathaniel.”
