At a White House press conference on Sept. 22, President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. made two alarming public health recommendations, misrepresenting already-flimsy science and causing serious societal harm. First, they advised against Tylenol use during pregnancy on the false claim that it causes autism. Second, they recommended the unproven use of a cancer drug to “treat” autism. In the face of such scientific distortions, as students, faculty and staff of Cornell University, it is our ethical imperative to both actively counter misinformation and revamp research processes to minimize possible harm.
The history of autism research shows that even well-intentioned studies often cause more harm than good. Scientists agree that autism is overwhelmingly genetic and that vaccines are safe and effective. That didn’t stop a deeply flawed study from suggesting otherwise in 1998. The paper was retracted and the author’s medical license revoked, but the damage was already done. Other quack researchers blamed autism on parenting style and subjected autistic people to zany diets and dangerous (even deadly) injections intended to treat lead poisoning.
Research today is not much better. Genetic autism research and stigmatizing medicalized frameworks lack benefits, perpetuate exclusion and invite eugenic misuse. Egregiously unrepresentative sample demographics create a self-reinforcing cycle of biased diagnostic criteria and access. Meanwhile, the main “research-proven” autism therapy, a derivative of gay conversion therapy, is now known to cause trauma. Current research evidently creates more problems for autistic people than it solves.
With this context, the false federal claims are particularly disturbing. First, the administration misconstrued the message intended by scientists who found the purported link. The authors of one study that Trump cited have clarified that their results should not broadly limit Tylenol use, since the well-established risk of fever in pregnancy outweighs any possible autism link. Second, the science suggesting a link is flawed, conflating correlation with causation. A high-quality study evaluated all two million children born in Sweden across 25 years and found no association between Tylenol and autism after controlling for parental factors, including genetics and health. Thus, parents of autistic children are merely more likely to take Tylenol for another reason, such as chronic pain, which correlates with autistic traits. Moreover, many trusted organizations affirm Tylenol's continued safety.
Finally, the very idea of autism “risk” contradicts the true nature of the condition. Consistent with the social model of disability, autism is a highly heritable collection of traits, many of which are societally marginalized. Autism is not inherently problematic, though it can co-occur with medical conditions like seizures or stomach issues. Viewed in this light, neurodivergence is not that different from identities like race, gender and appearance, which all correlate with social oppression and various health problems. If you accept the absurdity of investigating whether prenatal Tylenol exposure causes increased risk of red hair, why would the question be any less ridiculous for autism? In short, keep taking Tylenol; suggesting otherwise is not just incorrect but dangerous.
Meanwhile, leucovorin, a prescription vitamin used to prevent cancer treatment side effects, has no proven benefit for autistic people. The 2021 meta-analysis that the administration cited identifies only two small studies concerning leucovorin and autism that meet basic methodological standards (blinded, placebo-controlled). Significantly larger studies are needed before any conclusion is warranted. Nonetheless, on Sept. 24 the Food and Drug Administration approved expanding leucovorin’s label to cover a subset of autistic people with low folate in the brain. Bypassing the meticulous FDA-approval process sets a dangerous precedent and has already spurred an unfounded run on folate supplements. Promoting leucovorin as an autism drug misleads citizens to pursue unproven treatments and reinforces harmful ideas of autism as a disease to cure rather than a neurotype to understand, accept, celebrate and support.
If researchers asked autistic people, they would learn that we overwhelmingly disapprove of “cures” and oppose genetic and cause-seeking research. Rather than vilify, traumatize and exploit us, we want research to serve autistics of all abilities. We want intersectional research on effective services, accessible education, inclusive workplaces and co-occurring conditions through a disability justice lens. We want to join the conversation, not merely as study participants but as partners.
Unfortunately, Cornell’s own autism research portfolio includes abhorrent deficit-focused genetic studies, clinical work and cure pursuits. Just last week, Weill Cornell boasted that parents and professionals will help steer a new autism center, notably excluding autistic people ourselves. This is unacceptable. These practices simultaneously harm autistics everywhere and pollute the accepting campus climate that we work hard to build. Existing research ethics systems are insufficient; preventing harm requires new systems of accountability and collaboration, like community-based participatory research, supplemented by proactive personal diligence.
Beyond autism research, researchers in all fields must realize that it is their responsibility to avert unintended negative consequences in their research. Directly involving the intended beneficiaries is essential for effectiveness. Although higher education now faces significant federal pressure, it is these times of transition that present a prime opportunity to overhaul the system and replace harmful norms with participatory, justice-focused alternatives.
Here are four ways you can promote ethical research on and off campus:
1. Email the Cornell investigators conducting harmful autism research, demanding that they adopt a participatory model that respects autistic dignity.
2. When you encounter misinformation, spread the true science to friends and neighbors, applying evidence-backed debunking strategies to avoid inadvertently reinforcing myths.
3. Make research ethics a real discussion and reflection point in your work, not just a hurdle for institutional compliance. Critically assess research in your lab and department to identify and mitigate risks of unintended harm.
4. Collaborate with the community to align priorities, methodologies and analysis with their needs and insights. To kickstart participatory research, consider the resources and grants of Cornell’s Einhorn Center for Community Engagement. Additionally, Neurodiversity@Cornell offers training specifically for ethical neurodiversity research. We encourage investigators in any field to reach out to explore research collaborations.
In closing, we must fight for ethical science, not just federally but in our own backyard.
Rebecca McCabe (she/her) is a 5th year PhD candidate in mechanical engineering. She is proudly autistic and ADHD. She leads neurodiversity and disability advocacy on campus through her involvement in Neurodiversity@Cornell, the Student Neurodiversity Alliance at Cornell and Cornell Graduate Students United Disability Justice Committee. She advises several neurodiversity research projects at Cornell and serves on the Virginia Tech Center for Autism Research’s Self Advocate Advisory Committee. She can be reached at rgm222@cornell.edu.
Anthony Ruiz (he/him) is a junior studying Information Science. He is the treasurer of the Student Neurodiversity Alliance at Cornell, and helps advocate for neurodivergent members of the Cornell community. He can be reached at abr232@cornell.edu.
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