A battle for truth and understanding is unfolding in the world of autism advocacy, and it's time to shine a light on this crucial issue.
The Centers for Disease Control and Prevention (CDC) made a controversial move last month by altering its website to reflect the beliefs of Robert F Kennedy Jr., the US health secretary. Kennedy claims there's a causal link between vaccines and autism, a theory that has been thoroughly debunked by scientific studies. This decision sparked a powerful response from autism advocates, who are determined to set the record straight.
Leaders of the Association of University Centers on Disabilities took to Instagram, demanding that public health officials "listen to autistic voices." The Autistic People of Color Fund called for donations to support their mutual aid fund, recognizing the threat Kennedy's lies pose to the disabled community. The Autistic Self Advocacy Network (ASAN) boldly stated on Instagram, "Kennedy's lies endanger public health and our community."
Zoe Gross, the director of advocacy at ASAN, explained their strategy: "We direct our community to reliable sources of public health information, sources that aren't influenced by conspiracy theories or anti-science agendas." Autism advocates have been fighting an uphill battle against misinformation, especially since Kennedy's appointment as head of the Department of Health and Human Services in February.
Maria Davis-Pierre, an autistic licensed mental health therapist and founder of Autism in Black, emphasized the importance of their role: "Our community relies on us for accurate information. We must refute RFK's misinformation because it poses a unique threat to our community."
The fight against autism misinformation is at the heart of this movement. Despite autism spectrum disorder being identified in the 1940s, advocates still face an enormous challenge in educating the public about autism. It's a developmental condition affecting communication and behavior, impacting individuals with varying levels of independence and support needs.
In the 1980s, the Diagnostic and Statistical Manual of Mental Disorders (DSM) established diagnostic criteria for autism. However, the movement for autism recognition faced a significant setback in the 1990s when a medical paper suggested a link between the MMR vaccine and autism. This study, based on just 12 children, was retracted in 2010 due to insufficient evidence. Since then, large epidemiological studies on various vaccines have consistently shown no relationship between vaccines and autism.
Yet, the myth persists, and Kennedy has given it new life. "When Kennedy makes outrageous claims, I spend weeks answering press inquiries. It becomes my full-time job," Gross said. "It's disheartening to fight the same battles I fought when I entered autism advocacy 15 years ago."
ASAN has released numerous statements addressing the administration's claims, using plain language and visual aids to reach a diverse audience. The Autism Science Foundation, which funds autism research, has partnered with the American Academy of Pediatrics to create infographics and tools to reassure families that vaccines are safe.
Since Kennedy's confirmation, the administration has repeatedly framed autism as a chronic disease that needs investigation, despite autism being a neurological and developmental disorder, not a condition to be cured, according to advocates and researchers.
In April, when the CDC released its report on autism prevalence in children, Kennedy called the increase in autism cases "alarming" and a sign of an "epidemic." The CDC attributed the rise to better screening, wider diagnosis parameters, and greater access to services. However, Kennedy attributed the increase to "environmental toxins." Advocates responded by doubling down on storytelling and education to counter Kennedy's narrative.
For example, Autism Empowerment not only shared evidence-based information on social media but also helped autistic adults share their stories through Spectrum Life Magazine, community events, and other programs. When Kennedy proposed creating a national autism database to find autism's causes, advocates launched a Change.org petition, gathering nearly 50,000 signatures. They argued that Kennedy's plan could lead to the government tracking autistic people and restricting their participation in society. Kennedy reversed course three days later, likely influenced by the public outcry.
ASAN wrote, "Speaking as though our existence is a calamity to be eliminated is a form of eugenics. Such ideas led to the incarceration and forced sterilization of disabled people in this country and their murder in Nazi Germany. It's disturbing to see this administration reviving authoritarian policies."
In September, when Trump and Kennedy claimed that taking acetaminophen during pregnancy leads to autism, Davis-Pierre shared local resources to support families. She understands the challenges of navigating support networks, having been diagnosed later in life and leading a sit-in at a pediatric neurologist's office to secure her child's autism diagnosis.
"The fear-mongering will create gaps in diagnosis, especially in the Black community. People are scared now," Davis-Pierre said. "While we hope this administration takes accountability, we must prepare for the remainder of their term and work hard to refute this misinformation."
Autistic people face significant challenges, including limited access to health and wellness assistance, long waitlists for diagnosis and services, shorter life expectancy, barriers to employment, housing, and food security. Advocates are pushing for the government to focus on tangible efforts to help autistic people, rather than pouring money into disproven theories.
The Autism Society of Greater New Orleans has successfully increased vaccine confidence and access among autistic people through a multi-pronged approach. In 2023, they vaccinated over 2,000 people, exceeding their goal of 600. They also trained 300 medical professionals to better administer vaccines and create sensory-friendly environments for people with autism. The organization developed and distributed over 1,000 vaccine kits for autistic people, including headphones, sunglasses, fidget toys, and shock blockers, to reduce the pain of shots.
"The kits completely changed people's experiences with vaccines," said Claire Tibbetts, the chapter's executive director. "Children and adults with autism had reduced fear and anxiety."
Advocates are also advocating for better-funded services, early intervention, and early diagnosis. In the Greater New Orleans area, patients on Medicaid face a two-year wait for an autism diagnosis due to a lack of providers who accept Medicaid and offer the test, according to Tibbetts. A national study found the average wait time to be about three months, which advocates and medical professionals consider too long.
Without a diagnosis, autistic people cannot access developmental disability services, including in-home professional support, childcare, or respite care. Advocates plan to increase pressure on elected officials, with some organizations calling for Kennedy's removal.
During Trump's first term and Biden's presidency, advocates regularly communicated with the health department. However, a sudden communications freeze in January, as Trump appointees laid off thousands of staffers at the agency, left advocates without a voice. Jill Escher, president of the National Council on Severe Autism, said, "We hope to meet with HHS staff to engage directly on the vaccine question and other responsible autism research topics."
Some advocates, like Tonya Haynes of Autism Speaks, have taken their message to Capitol Hill. Haynes accompanies her autistic son, Tyler, to deliver speeches about his experiences graduating from college and being employed with autism. "The impact is instant when individuals see Tyler in person," Haynes said.
When the Senate voted to confirm Kennedy as health secretary, Louisiana Republican senator Bill Cassidy cast the deciding vote, despite expressing concern over Kennedy's anti-vaccination activism. To reassure Cassidy, Kennedy made concessions, including leaving intact the CDC webpage stating vaccines do not cause autism. Now that Kennedy has broken that promise, Cassidy has expressed shock but refuses to directly challenge him.
Tibbetts, a constituent of Cassidy's, said, "We'll continue meeting with Cassidy's office to share information about vaccines and autism. Framing autism as a disease to be eradicated is harmful. It hurts autistic people living their lives."
This battle against misinformation is a critical fight for the autism community, and it's time for all of us to stand with them.
