Chaos, Confusion, and Conspiracies: Inside a Facebook Group for RFK Jr’s Autism ‘Cure’

Keith Joyce fell on Leucovorine last December when he was trying to find ways to improve the life of his four-year-old autistic grandson Jose. He has spent the coming months looking for the drug and talking to neurologists. In April, he sent his research to the specialist in Jose’s development behavior, who agreed to prescribe the medication.

During the five months that followed the start of treatment, Jose went from non-verbal to constantly babbling.

“In a few days, I started to see a difference,” Joyce told Wired. “”[Before taking leucovorin,] He fought with sentences of two words, and last night, I had a three or four -minute conversation on the family with him. »»

Joyce wanted to share her research with others because there were so few online resources, so he started Leucovorin for Autism Group on Facebook in May.

There was a certain interest in the group at the start and in August, around 8,000 people were joined, said Joyce. But then came that the Trump administration and the Secretary in the United States of Health Robert F. Kennedy Jr. were going to recommend Leucovorine as a possible treatment for autism – the group exploded. In the week following Makary’s announcement, membership of the Joyce group jumped to nearly 60,000 people.

Even before the official announcement was made, tens of thousands of new members had joined depending on the speculation on the drug.

Then, last month, President Donald Trump pushed the baseless allegations that the active ingredient in Tylenol and the vaccines could contribute to a diagnosis of autism. The chief of the FDA Marty Makary announced on September 22 that the agency approved the use of leucuvorine to treat folate deficiency in the brain, a deficiency that certain people suffering from symptoms of autism have.

“Leucuvorine is something that has been prescribed for many years for autistic people in general, with incoherent results,” explains Matthew Lerner, program manager of the research program on the results of the Living Courses at AJ Drexel Autism Institute of the Drexel University. “There have been some small research studies to date, also with fairly incoherent results. But honestly, we don’t know much, even from these studies, in terms of what would be an optimal dosage, which would be an optimal period to be there. ”