Only recently, Robert F. Kennedy Jr. has called for a large scale testing and research initiative to be launched against autism. He announced these initiatives at a cabinet meeting on April 10. His proposal would launch a bold, national, large-scale study which hopes to leverage private medical records from multiple federal and commercial databases. The initiative’s proposed measures go even further, aiming to create a new health registry specifically for tracking autistic Americans.
Kennedy’s proposal has set off a firestorm of concern from autism experts and advocates. He appointed David Geier to run the research. This study seeks to examine the relationship between autism and vaccinations, particularly the measles, mumps, and rubella (MMR) vaccine. As expected, this sudden about-face has drawn intense pushback. By 2011, Maryland authorities learned that Geier was practicing medicine without a medical license and prescribing dangerous unapproved drugs to autistic children to suppress their puberty.
To further inflame the debate, Kennedy issued a number of statements that have angered many in the autism community. He went on to make the outrageous claim that autistic people make no societal contributions. He claimed autism “destroys” families, which it doesn’t. He pointed to an “environmental toxin” as the most important reason for the crisis. He went on to call it an “epidemic” of “preventable disease.”
Experts have quickly refuted Kennedy’s claims. Daniel Geschwind, a professor at UCLA and director of the university’s Center for Autism Research and Treatment, called Kennedy’s approach “terrible, terrible.” He wanted to make it clear that genetics is huge, making up 95% of autism’s etiological landscape. He wasn’t just laying down the law on vaccine-autism correlation because there isn’t one.
“The evidence is overwhelming,” – Daniel Geschwind
Dora Raymaker, autism rights advocate, expressed her dissatisfaction. She argues that Kennedy’s narrative distracts from the real issues that autistic people, especially those like her who aren’t white males, face. “It’s hard to respond to something that is fiction,” she remarked. She cautioned that fearmongering about autism is dangerous and does real harm. This can increasingly undermine the hard-fought civil rights of people with disabilities.
Raymaker challenged the motivations behind Kennedy’s initiative, saying, “What is this distracting us from? She warned about the risks of promoting pseudoscientific claims linking autism and vaccines. These diversions might rub the spotlight of the urgent day-to-day struggles that these communities are encountering.
Many advocates consider Kennedy’s claim that environmental toxins are behind the rising rates of autism an overly alarmist view. What autistic advocate and photographer Stephen Shore encouraged us to see was that we should focus on the contributions of autistic people to ALL of our lives.
“It feels terrible. It’s attacking me – they’re attacking autistic individuals for no reason at all. Autistic people have a lot to contribute to society,” – Stephen Shore
Shore added that conversation needs to focus on how to deliver support to autistic people, instead of continuing to spread damaging tropes. He articulated the fear that Kennedy’s claims would have a chilling effect on public perception and policy towards autism.
Though, at least so far, almost no one is actually supporting Kennedy’s proposals. Experts are similarly telling us that there are larger looming threats to research and support for people with disabilities. The Trump administration has suggested cuts to health insurance, research funding, and special education services, which experts argue pose a more significant danger to those living with autism.
In the United States, nearly 15 million non-elderly people with disabilities rely on Medicaid. That’s because proposed cuts amount to a systematic slashing of funding by almost a third over the next ten years. Opponents say that this would drive down access to critical services and supports for individuals and families impacted by autism.
“The withdrawal of funding for research is going to dramatically slow down the acquisition of new knowledge,” – Stephen Shore
During the Trump administration, research centered around these principles was banned. This decision has greatly delayed important efforts in autism research. Experts warn that these cuts will have lasting negative consequences on efforts to understand and support the diverse needs of autistic individuals.
Robert F. Kennedy Jr. has recently come under the spotlight in his new role as federal chief advocate for all students with disabilities. Despite these positives, we are worried that his regressive ideas about autism and autism-related research will lead to harmful decisions in this post.