Inside an anti-vaccine autism summit in the age of RFK Jr.
'Some of this is easy to understand. Other stuff? I'm like, 'What are they talking about?'' said the 40-year-old woman from Escondido, California, who spoke to NBC News on condition of anonymity to protect her son's privacy.
'There's a lot of technical terms, medical terms, brain diagrams. I'm like, 'Just tell me what I need.''
Other parents were more practiced. A woman in her 60s from Laguna Beach told me she had healed her daughter in the 2000s with trips to Greece for stem cell transplants. She'd come to the summit to learn whether anything new was out there; her daughter was feeling better from an all-carnivore diet but still had bad days. (Scientific evidence is lacking to support the theory that an all-meat diet benefits people with autism.)
There were roughly two dozen sessions over two days. Some were meant as inspiration, to show parents what was possible. Among the first speakers was Collin Carley, a 28-year-old in a neat black suit who spoke about his journey from a toddler diagnosed with autism who threw tantrums, obsessed over trains and insisted on blowing on every dandelion.
Carley recounted years of intensive therapies, with 'one biomedical plan after the other.' He got IV infusions and chelation treatments, where pills, sprays or injections are used to 'get the metals out' of the body. He described a childhood stripped of normalcy, a '40-hour workweek' of treatments and regimens.
He said it had worked. He now swims and surfs, holds a blue belt in Brazilian jiu jitsu, and has worked jobs from deckhand to pizza delivery driver.
Women in the audience whispered to each other, 'Wow.'
But it's also the kind of life enjoyed by many on the autism spectrum who never received the biomedical interventions that Carley did.
The first day's headliner was Peter McCullough, a cardiologist who now works for a supplement and telehealth company selling alternative treatments and vaccine 'detoxes." He ran through a list of risk factors he said warranted further study: gene mutations, premature birth, parental age, immune system dysfunction and vaccine reactions.
He also talked strategy, offering a language shift in the anti-vaccine community, away from suggesting that vaccines 'cause' autism. It would be more palatable to the masses, he argued, if everyone started saying vaccines were a 'risk factor' for autism.
He defended Wakefield, comparing him to Ignaz Semmelweis, the 19th-century Hungarian doctor who was institutionalized after suggesting handwashing could prevent infection.
And McCullough dared to cast doubt on Kennedy's ability to deliver on his promise by September.
'It's too short of a time to actually do any research study,' he said.
The crowd groaned.
I sat near the front of the room to hear the final speaker, anti-vaccine activist Del Bigtree, former communications director for Kennedy's presidential campaign and CEO of the movement's newest offshoot, Make America Healthy Again — MAHA, which Bigtree has turned into a nonprofit, a super PAC and an LLC (a limited liability company).
Two women at the table asked me if I had an autistic child. I said that I did, but that wasn't why I was there and gave them my business card.
They told me about their children. One woman, with white hair and a bedazzled 'Kennedy for President' water bottle, spoke about her 26-year-old son who loved swimming and needed round-the-clock care. The pandemic and California's 'tyrannical' lockdowns, she said, had been devastating — interrupting his routines, closing beaches and cutting off his services.
Another described her now-adult son's febrile seizures, which she said had started just days after a diphtheria, tetanus, acellular pertussis shot and landed him in the children's hospital.
When the women politely but pointedly asked what I thought about it all, I paused for a minute to think. The conference seemed designed to prey on the fear of autism and the love we all feel for our kids. I told them I hadn't seen convincing evidence presented during the summit that would shake my belief in the mainstream science around autism.
Bigtree, meanwhile, was going way past his allotted time to the crowd's delight, recounting his long career in anti-vaccine activism and his intersection with Kennedy's. He described watching Kennedy's swearing-in from the Oval Office, where he'd been invited as one of a handful of close advisers.
While Bigtree played the clip of Kennedy's September promise — the third time I'd heard it that weekend — one of the two women I'd been chatting with stood up to leave, touched me on the shoulder and handed me a handwritten note:
'Brandy, I'm glad I got to meet you. I respect people on all sides of the issue. I don't claim to have all the answers. Maybe there are multiple causes of autism. I hope your article goes well, and that you just consider, for a brief space in time—what if there is a chance—even a small chance—that they are right?'
Bigtree, from the stage, continued, now with the flair of a revival preacher. 'It'll be cataclysmic,' he said of the answers he said Kennedy would deliver in September. 'For some there will be gnashing of teeth, there'll be great fear and terror, there'll be concern, there'll be lack of trust, there'll be pain — but there will finally be truth.'
He wanted parents to know they had a hero fighting for them in Washington
'Robert Kennedy Jr., who stood with you and hugged you and has been here with you this whole time, now has the most powerful position in health in the world,' he told the room.
'God … is … good.'
His speech signaled the end of the summit. The crowd shuffled out into the foyer for a reception.
A snaking line formed for photos with Bigtree.
The inventor of a sensory play tent for kids with autism danced alone to Journey's 'Any Way You Want It.'
People sipped cocktails from plastic cups and visited, talked and chased their kids around.
Nobody seemed ready to go.
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