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

On September 22, nan US Food and Drug Administration announced it was approving a caller usage of a supplier called leucovorin calcium tablets arsenic a curen for cerebral folate deficiency, which nan management besides presented arsenic a promising curen for nan symptoms of autism. In nan days and hours aft nan announcement, tens of thousands of parents of autistic children joined a Facebook group, first group up successful May, to stock accusation astir nan drug.

The Leucovorin for Autism group was flooded pinch chaos, confusion, and conspiracy theories, according to a WIRED review, pinch parents, pediatricians, nurses, and connection marketers seeking to capable nan void of accusation near by nan Trump administration.

One angry genitor shared an email from their wellness attraction supplier refusing to prescribe leucovorin, moreover aft nan FDA announcement. “Get a different doctor,” a group personnel responded.

Another genitor shared a spreadsheet filled pinch nan names of doctors who they claimed would prescribe nan drug. Two individuals who claimed to beryllium nurses based on complete whether leucovorin should beryllium prescribed astatine all. Many others shared links to unproven alternatives, including folinic acerb supplements that tin beryllium ordered online. Some offered proposal connected what dosage to give, arsenic nan FDA has yet to supply specified information. Others pushed conspiracy theories, blaming “big pharma” for covering up nan effectiveness of leucovorin for years, aliases blaming vaccines for causing autism.

One personification suggested dream arsenic a measurement to dainty autism: “You whitethorn deliberation this is crazy … get him successful church. Get him listening to Christian music. Even conscionable Christian kid songs. Children for illustration him are truthful guiltless … they tin consciousness Gods beingness and nan comfortableness of nan Holy Spirit.”

Many shared their affirmative experiences pinch leucovorin, which has for years shown committedness arsenic a imaginable curen for definite symptoms for immoderate autistic people. “We person noticed a immense difference,” 1 genitor wrote this week astir their child, who had been taking leucovorin for 2 and a half weeks. “Anxiety is decreased, calmness, happiness, listening truthful well, tons of hugs and emotion to not only america but friends, and her rima is really moving and making caller sounds moreover for illustration raspberry sounds which we person ne'er heard.”

But others shared antagonistic reactions to taking nan drug. “Did you announcement your kid's behaviour improving aft starting Leucovorin??” 1 group personnel wrote connected Monday. “My girl becomes aggravated very easily, hits, & screams to nan apical of her lungs!”

For decades, nan parents of autistic children person been sold mendacious dream by charlatans claiming their products could cure autism. While nan Trump management is not making this claim, it has created disorder by changing leucovorin’s explanation without rigorous testing arsenic an autism curen aliases providing accusation astir dosages aliases magnitude of treatment. This accusation void is now being filled by posters connected Facebook.

“Families are understandably worried erstwhile they perceive a azygous supplier being presented arsenic a imaginable ‘answer’ to autism,” says Danielle Hall, head of wellness equity inaugural astatine nan Autism Society of America. “But autism is not caused by 1 thing, it’s a analyzable operation of genetic, biological, and biology factors. Announcing a ‘cause’ aliases ‘cure’ without rigorous subject not only fuels stigma but besides harms families who are near pinch much disorder than clarity.”

Leucovorin useful by boosting nan body’s folate levels, which is captious for nan patient accumulation of reddish humor cells. It has typically been utilized to dainty crab patients, to counteract nan effect of chemotherapy connected nan body’s immune system. For decades, it has been prescribed off-label by immoderate doctors to dainty cerebral folate deficiency, which had been linked to autism by now-sidelined research. However, it has ne'er undergone nan benignant of expansive objective tests usually required for narcotics approved to dainty autism.

The support was based not connected years of rigorous study and session trials, arsenic is emblematic for an FDA supplier approval, but alternatively connected a “systematic study of lit published betwixt 2009-2024.” The problem pinch this, experts say, is that location is very small investigation connected nan effectiveness of leucovorin for this circumstantial use.

Keith Joyce stumbled crossed leucovorin past December while trying to find ways to amended nan life of his 4-and-a-half-year-old autistic grandson, Jose. He spent nan adjacent fewer months researching nan supplier and speaking to neurologists. In April, he sent his investigation to Jose’s developmental behavioral specialist, who agreed to prescribe nan drug.

In nan 5 months since he began treatment, Jose has gone from being typically nonverbal to babbling constantly.

“Within days I started seeing a difference,” Joyce tells WIRED. Before taking leucovorin, “he struggled pinch two-word sentences, and past night, I had a 3 aliases 4 infinitesimal speech astir family pinch him.”

Joyce wanted to stock his investigation pinch others because location were truthful fewer resources online, truthful he started nan Leucovorin for Autism group connected Facebook successful May.

There was immoderate liking successful nan group initially, and by August astir 8,000 group had joined, Joyce says. But past came nan news that nan Trump management and US wellness caput Robert F. Kennedy Jr. were going to beryllium recommending leucovorin arsenic a imaginable curen for autism—the group exploded. In nan week pursuing Makary’s announcement, rank of Joyce’s group jumped to almost 60,000 people.

Even earlier nan charismatic announcement was made, tens of thousands of caller members had joined based connected speculation astir nan drug.

Then, past month, President Donald Trump pushed baseless allegations that nan progressive constituent successful Tylenol and vaccines whitethorn lend to an autism diagnosis. FDA caput Marty Makary announced connected September 22 that nan agency was approving nan usage of leucovorin to dainty folate deficiency successful nan brain, a deficiency immoderate group pinch autism symptoms have.

“Leucovorin is thing that has for galore years been prescribed off-label for autistic group generally, pinch inconsistent findings,” says Matthew Lerner, programme leader of nan Life Course Outcomes investigation programme astatine nan AJ Drexel Autism Institute astatine Drexel University. “There's been immoderate mini investigation studies connected it to date, besides pinch beautiful inconsistent findings. But honestly, we don't cognize a batch astir it, moreover from those studies, successful position of what would beryllium an optimal dosage, what would beryllium an optimal clip play to beryllium connected it.”

The FDA did not respond to a petition for comment.

While immoderate members urged Joyce to make nan group private, he wanted to support it nationalist to let arsenic galore group arsenic imaginable to find nan accusation he had posted connected nan group. But allowing everyone to subordinate a Facebook group brings a batch of problems, including what Joyce has branded arsenic “the haters.”

“I’ve spent astir of nan time coming going done my filters and deleting and banning group because they want to shame people, saying you shouldn't springiness them vaccines aliases you shouldn't person done this, you shouldn't person done that,” Joyce says. “Anybody who wants to talk astir what caused autism, they tin spell location else.”

The Department of Health and Human Services, of which nan FDA is simply a constituent agency, has clarified since nan announcement that it is only recommending nan usage of prescribed leucovorin taken successful consultation pinch a doctor, and not alternatives specified arsenic folinic acid, an over-the-counter supplement.

Within nan Facebook group, however, a batch of parents are recommending alternatives to those who can’t get leucorovin, including folinic acerb and different supplements, thing Joyce says is very concerning.

“People are going to these supplements, which really scares me, because now you're doing it without a doctor,” says Joyce, adding that group don’t cognize what is successful nan supplements aliases what dosage they should beryllium giving.

There besides look to beryllium group successful nan group seeking to profit from nan uptick successful liking successful leucovorin—which is simply a inexpensive generic drug.

“There's a mates of [supplement makers] retired location spamming this group really bad,” says Joyce. “I don't cognize if they're affiliates from a website aliases whatever, but we're perpetually removing their small ads.”

Among nan worst offenders, he adds, is simply a supplement institution called Spectrum Awakening, which past twelvemonth breached advertising standards successful nan UK aft it claimed successful a Facebook advertisement that 1 of its supplements could dainty connection issues. The institution did not respond to nan regulator earlier its ruling.

Joyce claims that his group had besides been spammed pinch links to iHerb, different supplement institution wherever Mehmet Oz, nan existent administrator of nan Center for Medicare and Medicaid Services, was formerly a pitchman and investor. iHerb’s folinic acerb is presently listed connected nan website arsenic retired of banal until precocious successful November.

Spectrum Awakening and iHerb did not respond to requests for comment. iHerb told Newsweek it is nary longer moving pinch Oz aliases pinch nan Trump administration. The Department of Health and Human Services did not respond to a petition for comment.

Hall, nan head of wellness equity inaugural astatine nan Autism Society of America, says nan group and its dozens of affiliates crossed nan state person besides been inundated pinch calls from concerned parents who are seeking much accusation aft nan FDA’s announcement.

“Last month's property convention was a premier illustration of really misinformation doesn’t conscionable confuse, it erodes spot successful science, doctors, and nationalist health,” says Hall. “Autism has a achy history of mother-blaming myths for illustration nan ‘refrigerator mother’ theory. Today we’re seeing that rhythm repetition pinch pregnancy-related claims, which re-traumatize families and displacement attraction distant from existent solutions. False claims discarded resources and support america from making existent progress.”