Autistic People Say Anti-Vax Misinformation Is Only Making Matters Worse
“Let go of the idea that it is better to risk killing your child or someone else’s with a vaccine-preventable disease than for the kid to be autistic.”
Anti-vaccine misinformation fueling this year's record-breaking measles outbreak and raising public health alarms across the country is making life harder for autistic kids and adults, feeding fears about disability and promoting dangerous fake "cures."
Despite public health officials repeatedly assuring parents that vaccines are safe, anti-vaxxers pushing the myth that a "vaccine injury" can cause autism has created more stigma, autistic adults and advocates told BuzzFeed News.
For autistic people, the claims, which have been repeatedly debunked, continue to be a source of frustration as people spreading vaccine misinformation play on fears and prejudices, often calling autistic children damaged.
“It reinforces the belief that an autistic person begins as a neurotypical person and there’s some way of getting them back to that state,” said Zoe Gross, operations director of the Autistic Self Advocacy Network. “It’s difficult to get people to calm down about autism when this stuff is out there.”
The US is on track to record more than 1,000 cases of measles this year, the most in 27 years and more than any year since the disease was considered officially eliminated. Before vaccination was common, the Centers for Disease Control estimates 500 people a year died from measles and thousands more required hospital care.
“#Vaccines are safe, they do not cause autism. The greater danger is the disease that vaccination prevents,” CDC Director Robert Redfield, MD, tweeted last week.
“I would like people to be aware that vaccines don’t cause autism, because they don’t,” Gross said. “I would also like people to let go of the idea that it is better to risk killing your child or someone else’s with a vaccine-preventable disease than for the kid to be autistic.”
Choosing not to vaccinate puts the most vulnerable people in society at risk, especially those who for various reasons can't be vaccinated, and it also feeds the false narrative that autism must be negative, said Morénike Giwa Onaiwu, co–executive director of the Autistic Women & Nonbinary Network.
“Essentially, it seems to imply that death is preferable to autism — whether that's the death of one's own unvaccinated child or the deaths of other innocent people whose health was endangered by exposure to others who chose not to vaccinate,” she said.
Falsely claiming vaccines cause autism also gives people a way out of actually accepting autistic people, she said.
“If there's some villainous reason why people are like me, people don't have to acknowledge that autism is a natural, inherent variation of human neurology; that it's a form of diversity in the way that gender and ethnicity are,” she told BuzzFeed News.
Giwa Onaiwu was diagnosed with autism as an adult, after two of her children were also diagnosed.
“I know what it's like to be inundated with messages that your child is broken; that your child is going to suffer; that it's somehow your fault; that you must wage war against this unseen force that has wedged a barrier between your child and the rest of the world,” she said. “But however frequent, convincing, and widespread those messages might be, they're not the truth.”
Instead of fighting autism, she said, parents should focus their attentions on connecting with their autistic children, building on their strengths, and adapting.
“One aspect of who we are does not serve as the defining factor for how happy or unhappy we are going to be, or for how fulfilling or unfulfilling one's life is going to be,” she said. “Autism is not the enemy any more than a child's freckles or blood type or eye color or skin tone is.”
Stigmas can also be reinforced by the same scientists and public health officials who are trying to quell misinformation, Gross added. Too often, experts focus on the deficits of autism or describe it as an epidemic, which only stokes people’s fears, she said.
“If with one hand, you’re trying to put out the fire of people being scared of vaccines … and with the other hand you’re putting gas on the flames of people being scared about autism, you’re not going to put out that fire,” she said.
Panic about vaccines has also kept the scientific community’s focus — and funding — on studying the cause of autism, or replicating studies that prove vaccine safety, she said. Meanwhile, autistic adults are left without research-backed answers to their questions: What health issues could they face as they age? What could help them communicate or be more active in their communities?
“They’re taking money that could be used toward improving our lives to calm people down,” she said.
In spite of years of data proving no link between autism and vaccines, the loudest anti-vaccine voices persist in books, social media, and documentaries. Pseudoscience autism “cures” can be good business, and parents can find themselves desperate for answers, making them easy prey, Shannon Des Roches Rosa, the mother of a high-support autistic teen, told BuzzFeed News.
After her son’s diagnosis with autism in 2003, she said she fell for it. But after learning about the dangers of some purported autism treatments, she began turning a critical eye to available information and meeting autistic adults of varying abilities.
“My husband and I were able to regroup and focus on making our son happy and healthy and accommodated,” she said. “It’s made a humongous difference in everybody’s quality of life, most of all my son’s I hope.”
In 2010, she and friends launched the Thinking Person’s Guide to Autism, hoping to debunk the pseudoscience that continued to dominate parenting blogs and forums.
Fake cures and skipping vaccinations won't help autistic kids, serving only to make their lives harder and put their health at risk, she said.
“It just makes me sad, and it makes me angry,” she said. “Because it doesn’t have to be that way.”
The Facebook page now has more than 200,000 fans, and the community is active in sharing resources and support as well as fighting misinformation.
“You have to above all be compassionate, because when people are scared, that’s when they’re grasping for straws,” she said. “You don’t want to treat them like they’re stupid for asking questions and inadvertently push them in the opposite direction."
Rosa said she’s hopeful for the future. There’s more solid resources for parents than she once had, and recent measles outbreaks have been a wake-up call.
“Most people are actually listening,” she said, “and most people are actually wanting more information.”