On September 22, the Food and Drug Administration announced it was approving a new use of a drug called leucovorin calcium tablets as a treatment for cerebral folate deficiency, which the administration also presented as a promising treatment for the symptoms of autism. In the days and hours after the announcement, tens of thousands of parents of autistic children joined a Facebook group, first set up in May, to share information about the drug.
The “Leucovorin for Autism” group was flooded with chaos, confusion, and conspiracy theories, according to a WIRED review, with parents, pediatricians, nurses, and affiliate marketers seeking to fill the void of information left by the Trump administration.
One angry parent shared an email from their health care provider refusing to prescribe leucovorin, even after the FDA announcement. “Get a different doctor,” a group member responded.
Another parent shared a spreadsheet filled with the names of doctors who they claimed would prescribe the drug. Two individuals who claimed to be nurses argued over whether leucovorin should be prescribed at all. Many others shared links to unproven alternatives, including folinic acid supplements that can be ordered online. Some offered advice on what dosage to give as the FDA has yet to provide such information. Others pushed conspiracy theories, blaming “big pharma” for covering up the effectiveness of leucovorin for years, or blaming vaccines for causing autism.
One person suggested prayer as a way to treat autism: “You may think this is crazy….get him in church. Get him listening to Christian music. Even just Christian kid songs. Children like him are so innocent….they can feel Gods presence and the comfort of the Holy Spirit.”
Many shared their positive experiences with leucovorin, which has for years shown promise as a potential treatment for certain symptoms for some autistic people. “We have noticed a huge difference,” one parent wrote this week about their child, who had been taking leucovorin for two-and-a-half weeks. “Anxiety is decreased, calmness, happiness, listening so well, lots of hugs and love to not only us but friends, and her mouth is really moving and making new sounds even like raspberry sounds which we have never heard.”