Keith Joyce stumbled upon Leukovorin last December while trying to find ways to improve the life of his 4 1/2-year-old autistic grandson, Jose. He spent the next months researching the drug and talking to neurologists. In April, he sent his tests to Jose’s behavioral specialist, who agreed to prescribe the medication.
In the five months since he began treatment, Jose has gone from being usually non-verbal all the time to babbling.
“Within a few days, I started seeing a difference,” Joyce tells Wired. Before he took Leukovorin, “he was struggling with two words, and last night I had three or four minute conversations with him about family.”
Joyce wanted to share his research with others because there were so few resources online, so he started Leucovorin for the Autism Group in May.
Joyce says there was initial interest in the group, and by August about 8,000 people had joined. But then news came that the Trump administration and U.S. Secretary of Health Robert F. Kennedy Jr. are going to recommend Leucovorin as a possible treatment for autism – the group has exploded. In the week after Makary’s announcement, membership in Joyce’s group jumped to almost 60,000 people.
Even before the official announcement, tens of thousands of modern members joined in to speculate about the drug.
Then, last month, President Donald Trump made baseless allegations that an vigorous ingredient in Tylenol and vaccines could contribute to autism diagnoses. FDA Chief Marty Makary announced on September 22 that the agency was approving the employ of leucovorin to treat folic acid deficiency in the brain, which some people with symptoms of autism are deficient in.
“Leucovorin is something that has been used in autistic people for many years, with inconsistent findings,” says Matthew Lerner, program leader of the AJ Drexel Outcomes Research Program at Drexel University. “There has been little scientific research done so far, also with quite inconsistent findings. But honestly, there’s very little we know about it, even from these studies, in terms of what the optimal dose would be, what the optimal time for it would be.”