<\/p>\n\n\n\n
REUTERS
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.
\u201cHe had a laundry list of everything that upset him throughout the years,\u201d his mother, Dr. Kathleen Schnier, told us.<\/p>\n\n\n\n
Nathaniel Schuman, an autistic boy who began speaking, smiling while wearing a plaid shirt, bow tie, and suspenders, with his reflection visible in a mirror.<\/p>\n\n\n\n
From 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. \u201cHe was retaining absolutely everything,\u201d Kathleen, 54, said. \u201cPeople weren\u2019t having him be part of the conversation or just assuming he wasn\u2019t understanding it. But it was all there.\u201d<\/p>\n\n\n\n
Now 13, Nathaniel is one of a growing number of young people with autism who have found their voice with the help of leucovorin \u2014 a cheap, generic drug that\u2019s opening up new channels of communication, one overdue complaint at a time.<\/p>\n\n\n\n
The second child of Kathleen and Paul Schnier, 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.
\u201cHe didn\u2019t start walking until 14 months, and then he started regressing with his words,\u201d said Kathleen, who works as a provost and chief academic officer at Colorado Tech University. \u201cThat was when I started realizing something was off.\u201d<\/p>\n\n\n\n
At first, doctors dismissed her concerns, suggesting she was simply comparing Nathaniel to his older sister, who had walked and talked early. But Kathleen \u2014 ever the determined \u201cmama bear\u201d \u2014 pushed for answers. She enrolled Nathaniel in early intervention services at just 17 months old, including speech, developmental and occupational therapy.<\/p>\n\n\n\n
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 \u201cwater\u201d or \u201coutside.\u201d
At 3, Nathaniel was diagnosed with autism, receptive-expressive language disorder and ADHD. \u201cYou could never have a conversation with him,\u201d Kathleen said. \u201cThat was the most horrendous thing as a parent: knowing that you can\u2019t have a conversation with your own child, or that somebody could hurt him and he couldn\u2019t tell you.\u201d<\/p>\n\n\n\n
Following 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.
\u201cIt was like something clicked. He went from one or two words to full-on sentences within six months.\u201d
The pediatric neurologist was studying whether leucovorin could help autistic children with cerebral folate deficiency \u2014 or a shortage of vitamin B9 in the brain.<\/p>\n\n\n\n
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.
Frye 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.<\/p>\n\n\n\n
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. Our autistic son\u2019s speech was \u2018erased\u2019 at 18 months \u2014 now he uses full sentences thanks to an experimental drug.<\/p>\n\n\n\n
\u201cIf you\u2019re going to the doctor and looking for an autism pill, it doesn\u2019t exist,\u201d Frye, now director of research at the Rossignol Medical Center in Phoenix, previously told The Post. \u201cBut leucovorin has helped a lot of children.\u201d The drug costs about $100 per month without insurance, and as little as $10 with coverage.<\/p>\n\n\n\n
Kathleen was intrigued \u2014 and amazed to discover Frye\u2019s latest study was taking place at Phoenix Children\u2019s Hospital, just a mile and a half from their Arizona home.<\/p>\n\n\n\n
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\u2019t been given a placebo almost immediately.
\u201cWhen he started taking the leucovorin, it was like something clicked,\u201d Kathleen said. \u201cHe went from one or two words to full-on sentences within six months.\u201d<\/p>\n\n\n\n
Thanks to leucovorin combined with multiple therapies, Nathaniel can now speak after spending most of his childhood nonverbal. With his new ability to speak, Nathaniel finally found a way to express what had been locked inside for years.<\/p>\n\n\n\n
\u201cThe TV in my brain, I can say it in my mouth,\u201d Kathleen remembers her son telling her. \u201cIt was always there, he just couldn\u2019t say it.\u201d<\/p>\n\n\n\n
But she\u2019s careful to point out that the medication wasn\u2019t a cure-all. Nathaniel had been enrolled in speech, developmental and occupational therapies since he was 17 months old \u2014 and those interventions laid the foundation for his progress.<\/p>\n\n\n\n
\u201cI don\u2019t want people to be like, \u2018Oh, we\u2019re going to cut services for disabled children, but here\u2019s a pill.\u201d
\u201cSuddenly, he had the capability of talking, but he had to learn how,\u201d Kathleen said.
\u201cWhen you have a conversation with a person, you have to ask them things and listen to them. It\u2019s not all what you want to talk about the whole time, and he can do that now, but leucovorin didn\u2019t do that for him,\u201d she explained. \u201cSpeech therapy did that for him.\u201d<\/p>\n\n\n\n
Many of Frye\u2019s patients have continued their therapeutic interventions while taking the drug.
\u201cYou have to treat a lot of things to make the body well,\u201d he said. \u201cWhat [leucovorin] does, we think, is accelerate the effectiveness of all these therapies.\u201d<\/p>\n\n\n\n
Today, Nathaniel takes both guitar and trumpet lessons. He\u2019s a member of the Phoenix Children\u2019s 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.<\/p>\n\n\n\n
\u201cI want to be an ice cream man,\u201d 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.<\/p>\n\n\n\n
As the Trump administration moves to expand access to leucovorin for families like the Schniers, Kathleen says she supports the effort \u2014 but with a major caveat. \u201cThis is not a magic pill. You are still going to have to put in the hard work, and it might not work,\u201d she said, noting that several participants in Nathaniel\u2019s trial didn\u2019t experience improvements on leucovorin. <\/p>\n\n\n\n
\u201cIt definitely is in [Nathaniel\u2019s] favor to be taking this medication, but I don\u2019t think it\u2019s a wonderful drug for everyone,\u201d 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. <\/p>\n\n\n\n
Just this month, Arizona began cutting $47 million in services for up to 18,000 disabled children due to budget shortfalls \u2014 a move local advocates say will cause \u201ccatastrophic damages\u201d to their families.
\u201cI don\u2019t want people to be like, \u2018Oh, we\u2019re going to cut services for disabled children, but here\u2019s a pill,\u2019\u201d Kathleen said. \u201cIf you\u2019re going to work toward supporting the disabled community, you have to open up everything to them \u2014 and then you are going to see those amazing results that you see with Nathaniel.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
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