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Keith Joyce stumbled across Leucovorin 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 few months researching the drug and talking to neurologists. In April, he sent his research to Jose’s developmental behavior specialist, who agreed to prescribe the medication.
In the five months since he started treatment, Jose has gone from being typically nonverbal to constantly fading.
“Within days I started seeing a difference,” Joyce told Wired. Before he took Leucovorin, “He struggled with two-word sentences, and last night, I had a three- or four-minute conversation about family with him.”
Joyce wanted to share his research with others because there were so few online resources, so he started the Leucovorin for Autism Group on Facebook in May.
Joyce says there was some interest in the group at first, and by August about 8,000 people had joined. But then came the news that the Trump administration and US Health Secretary Robert F. Kennedy Jr. were recommending leucovorin as a potential treatment for autism – the group exploded. In the week following Makary’s announcement, Joyce’s group membership jumped to nearly 60,000 people.
Even before the official announcement was made, tens of thousands of new members joined based on speculation about the drug.
Then, last month, President Donald Trump pushed unsubstantiated claims that the active ingredient in Tylenol and vaccines may contribute to autism diagnoses. FDA chief Marty Makary announced on September 22 that the agency was approving the use of Leucovorin to treat brain folate deficiency, a deficiency in some people with symptoms of autism.
“Leucovorin is something that has been prescribed for many years off-label for people with autism in general, with inconsistent results,” says Matthew Lerner, M.D., leader of the Life Course Outcomes Research Program at the AJ Drexel Autism Institute at Drexel University. “There have been some small research studies on it so far, also with very inconsistent results. But frankly, we don’t know a lot about it, even from those studies, in terms of what would be an optimal dose, what would be the optimal time period to be on it.”