Debunked myths that vaccines cause autism are increasing stigma

Shallenberger finds this bewildering: “I would much rather my son be alive, healthy and autistic than dead from a preventable childhood illness. It’s not even a decision, really. There is only one choice for me: vaccinate my kids.”

Parents including Shallenberger are in the odd position of defending their decision to vaccinate – even though there is no evidence of a link between vaccines and autism. The myth, based on a 1998 study that was later retracted due to ethical concerns and falsified data, has been regaining traction since Covid-19 sparked debates over vaccine safety. Robert F Kennedy Jr, who was recently appointed as the US health and human services secretary, has also publicly suggested that autism may be linked to vaccination.

Lynne Peskoe-Yang, a 34-year-old Massachusetts-based journalist with autism, says the myth’s persistence illustrates something disturbing about how the world sees autistic people – that because they are different, they must be contaminated somehow.

“It fits really well into other kinds of beliefs about health that really boil down to morals more than science,” Peskoe-Yang said.

Autism spectrum disorder is defined by persistent social difficulties as well as repetitive behaviors and interests, sometimes shaped by heightened sensitivity to stimuli like noises, textures and touch, according to the Diagnostic and Statistical Manual of Mental Disorders.

The “spectrum” refers to the variety of ways people fit this definition. Many autistic people make it to adulthood without a diagnosis – despite the challenges that come even with mild cases, they are able to live independently. Others require lifetime support. While autism as a disability is defined by impairments, it is also associated with strengths, including dedication, focus and creativity in the workplace.

Even in more challenging cases, parents of autistic children find it repugnant that other parents are risking their own children’s serious illness or death, ostensibly to avoid the condition.

Kate Abarca, a retired occupational therapist in South Carolina, says that learning to understand her son’s autism was immensely rewarding. Caring for him made her a better therapist, and advocating for him helped her overcome her shyness. Now 35, her son Benjamin Beals is beloved in his community. He lives in a semi-independent facility and is known for his karaoke performances.

Abarca realized early that her son’s difficulties stemmed from her own inability to understand his needs. When he was an infant, she says he screamed constantly and would kick and bite her when she was trying to care for him.

“ I came to recognize his actions as self-defense against me providing caregiving that he perceived as an assault,” she said.

Jonathan Knapp, 71, a podcaster in Indiana known by the stage name Johnny Profane, agrees that some of the difficulties associated with autism are more manageable if you understand their cause.

“Any child will start screaming in a supermarket given the right stimuli,” he said. Knapp, along with others contacted for this story, suspects that anti-vaxxers see autism as a combination of exaggerated stereotypes stemming from misunderstood behaviors.

Knapp was diagnosed with autism at 63. While the diagnosis is still stigmatized, Knapp says that understanding why he felt different his whole life has been a blessing.

Emir Lopez, a 32-year-old working in IT in Massachusetts, also sees his autism diagnosis as a gift. Lopez said when he was diagnosed as a child, his parents hid it. He connected the dots himself studying psychology in college. When his mother confirmed he had autism, Lopez realized there actually was “nothing wrong” with him. He was “normal” – just autistic.

Hearing parents fret over vaccines causing autism “just makes me so angry”, says Lopez, adding: “Autistic people, we’re very logical, so that blows my mind even more.” Lopez remembers a particularly upsetting instance when his father’s former girlfriend told him he might not have autism had he not been vaccinated.

Eventually, Lopez became so fed up with the stigma he decided to disclose his autism on social media with the joke “vaccines are just computer updates for me.”

A 37-year-old autistic sound engineer said he finds misinformation so disturbing he loses sleep over it, adding that anti-vaxxers are not “entitled” to “their own set of facts”. He echoed Lopez’s sentiment that this cognitive dissonance can be especially distressing for autistic people: “It saps your energy away. You lose your appetite and your body temperature changes. It’s a drastically physical thing.”.

Knapp, too, said he’s lost days replaying social media conversations with anti-vaxxers over and over in his head.

While Lopez is troubled by misunderstandings over autism, he says he’s most concerned over declining vaccination rates.

“People need to vaccinate. This is life or death. People are dying. Babies are dying!”

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Stephen Collopy

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