Autism Research Itself Is Harming Autistic People

The Doctors Who Treat Us Like Objects

In 2022, psychologists Monique Botha and Eilidh Cage asked 195 autism researchers a simple question: How do you think about the people you study?

The answers should terrify anyone who cares about autistic people.

Some researchers described autistic people as "a drain on society." Others said autism is "a fate worse than death." One wrote that autistic people "lack empathy, lack imagination, lack the ability to love." Another suggested that preventing autism would be "like wiping out polio" (Botha & Cage, 2022).

These are not random internet trolls. These are the people who design studies, apply for grants, and publish papers that shape how doctors diagnose, how schools educate, and how society treats autistic people. And according to Botha and Cage's study, the way many of them talk about autistic people meets the academic definition of dehumanization, objectification, and stigmatization.

The paper's title says it bluntly: "Autism research is in crisis." But the crisis is not a funding shortage or a methodological flaw. The crisis is that the field's own practitioners, the people supposedly working to understand and help autistic individuals, are actively causing harm through the way they construct autism itself.

The Three Faces of Academic Harm

Botha and Cage designed a mixed method study that combined quantitative content analysis with qualitative thematic analysis. They recruited 195 autism researchers through professional networks, social media, and mailing lists. The sample skewed early career (mean 9.5 years of experience) and heavily female (71.3%). Respondents answered five open ended questions about autism and autism research, plus demographic items about their career length, personal contact with autistic people, and how much they involved autistic people in their research.

The authors then coded each response for three specific forms of ableism:

• ▸Dehumanization: Talking about autistic people as less than human, using animal metaphors, or implying they lack fundamental human qualities.
• ▸Objectification: Treating autistic people as passive objects of study, as collections of symptoms rather than whole people, or as tools for non autistic ends.
• ▸Stigmatization: Making othering statements that set autistic people apart, below in status, or as fundamentally broken.

The results were stark. Researchers who used medicalized narratives of autism, framing it purely as a disorder or deficit, had significantly higher odds of using ableist language. Those who adopted social model or neutral embodiment narratives, which recognize autism as a natural variation shaped by social context, had lower odds. The effect was not small. Botha and Cage found that "using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives" (Botha & Cage, 2022).

But here is the finding that should change how research is done: Greater inclusion of autistic people in the research process predicted significantly lower odds of ableist cues, even after controlling for career length and personal connections to autistic people. In other words, the single best predictor of whether a researcher talked about autistic people with dignity was whether they actually worked with autistic people, not just on them.

The Ideological War Nobody Talks About

Botha and Cage's thematic analysis revealed something deeper than surface level prejudice. They found that the field is split by a fundamental ideological disagreement that most researchers never acknowledge.

On one side are researchers who believe autism is "an intrinsic barrier to a good life." For them, the goal of research is to fix, prevent, or eliminate autism. On the other side are researchers who see autism as a natural variation and believe the goal is to remove societal barriers that disable autistic people.

This is not an abstract philosophical debate. It determines what gets funded, what gets published, and what gets taught to clinicians. It determines whether a study looks for a cure or looks for better accommodations. It determines whether an autistic child grows up being told they have a devastating disorder or a different way of being.

Botha and Cage found that these worldviews were not just different. They were actively hostile to each other. Researchers in the medicalized camp often dismissed the social model as "political correctness." Researchers in the social model camp described the medicalized approach as "harmful" and "dehumanizing."

The authors write that these "core ideological disagreements" show a field that cannot even agree on what it is studying, let alone how to study it (Botha & Cage, 2022).

Instrumentality: Measuring Human Worth

One of the most disturbing patterns Botha and Cage identified was something they call "instrumentality," a form of objectification where researchers judged a person's social value based on intellectual ability and independence.

Here is how it showed up. When researchers talked about "severe autism" or "low functioning" individuals, they often used language that suggested these people had less value. One researcher wrote that "the severely affected may never be able to contribute to society." Another described "profound autism" as "tragic" and "a burden."

But here is the catch: The same researchers who used this language often claimed to be "pro neurodiversity" or "person centered." They seemed genuinely unaware that they were ranking human beings by their usefulness.

Botha and Cage found that "instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence" (Botha & Cage, 2022). This is not just an academic problem. When researchers treat people as valuable only if they are "high functioning," they justify interventions that erase autistic identity in the name of making people "less autistic." They justify therapies that train children to suppress natural behaviors because those behaviors make non autistic people uncomfortable. They justify research that looks for prenatal tests to eliminate autistic fetuses.

The Language of Violence

Perhaps the most chilling finding in Botha and Cage's study is how researchers talked about prevention and eradication. The authors found that researchers "relied on an amorphous idea of 'autism' when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing 'autistic people,' despite autism only existing within the context of autistic people" (Botha & Cage, 2022).

This is linguistic sleight of hand. By saying "we want to prevent autism" instead of "we want to prevent autistic people from being born," researchers distance themselves from the actual implications of their work. They treat autism as a disembodied pathology that can be removed without removing anyone.

But you cannot prevent autism without preventing autistic people. Every time a researcher celebrates a breakthrough in prenatal screening for autism, they are celebrating a technology that would reduce the number of autistic people in the world. Every time a grant application promises to "reduce the burden of autism," it is promising to make autistic people disappear.

Botha and Cage call this "language as a tool of normalization of violence." The violence is not physical, but it is real. It is the violence of telling a community that their existence is a problem to be solved. It is the violence of building a research enterprise on the assumption that the people you study should not exist.

What Inclusion Actually Changes

The most hopeful finding in Botha and Cage's study is also the most actionable. Inclusion works. When researchers involved autistic people in their work, not as subjects but as collaborators, consultants, and co authors, their language became measurably less ableist.

The effect was not small. Botha and Cage found that "greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length" (Botha & Cage, 2022).

This is important because it rules out alternative explanations. It is not just that researchers who already like autistic people choose to include them. Even when you account for personal relationships with autistic family members or friends, the act of including autistic people in the research process itself changed how researchers talked about them.

But here is the problem: Most autism research does not include autistic people in meaningful ways. The study found that many researchers reported no involvement of autistic people in their work at all. Others reported tokenistic involvement, like having an autistic person read a consent form or sit on an advisory board with no real power.

True inclusion means autistic people helping to set research priorities, design studies, interpret results, and write papers. It means autistic people having power over what gets studied and how findings are framed. It means treating autistic people as experts on their own lives, not just as sources of data.

What This Research Does Not Prove

Botha and Cage's study has limitations worth being honest about. The sample was self selected, meaning researchers who already care about these issues were more likely to respond. The study likely underestimates the problem because the most ableist researchers probably did not participate.

The study also cannot tell us exactly where ableism comes from. Is it a product of medical training that frames everything as pathology? Is it a selection effect where people who are already uncomfortable with difference gravitate toward deficit focused research? Is it a structural problem in how funding agencies reward certain kinds of questions? Probably all of the above.

And the study does not prove that all autism research is harmful. Many researchers in the sample used respectful, nuanced language and genuinely wanted to help. The problem is that the field as a whole tolerates and even rewards harmful narratives.

The Crisis of Legitimacy

Botha and Cage's paper is titled "Autism research is in crisis," but the crisis is not just about bad language. It is about legitimacy. If the people who produce knowledge about autism cannot talk about autistic people with basic human dignity, why should anyone trust that knowledge?

This is not an abstract question. Autistic adults have been saying for years that much of the research on autism is irrelevant to their lives, that it focuses on problems they do not have while ignoring problems they do. They have been saying that research on "cures" and "prevention" makes them feel like their existence is a mistake. They have been saying that researchers talk about them as if they are not in the room.

Botha and Cage's study provides empirical evidence that these complaints are not oversensitivity. They are accurate descriptions of how researchers actually talk.

The field faces a choice. It can continue as it has, producing knowledge that harms the people it claims to help. Or it can fundamentally restructure itself around the principle that autistic people deserve to be full partners in the research that shapes their lives.

What This Actually Means

• ▸Inclusion must be mandatory, not optional. Funding agencies and journals should require evidence of meaningful autistic involvement in any autism research they support. Tokenistic consultation is not enough. Autistic people need real power over research priorities, study design, and interpretation of findings.

• ▸Medicalized language is not neutral. When researchers frame autism as a disorder, deficit, or disease, they are making a choice that has consequences. That choice predicts dehumanizing, objectifying, and stigmatizing language. Researchers need to understand that their framing is an ethical decision, not just a scientific one.

• ▸The field needs to stop pretending that "prevention" and "cure" are benign goals. These goals imply that autistic people should not exist. Researchers who pursue them need to be honest about what they are actually trying to do, and they need to reckon with the message this sends to the autistic community.

• ▸Training in ableism should be standard. Just as researchers are trained in ethics for human subjects research, they should be trained in how their language and assumptions can harm the communities they study. This training should be developed and delivered by autistic people.

• ▸Autistic researchers need to be centered in the field. Currently, autism research is dominated by non autistic people studying autistic people. This is a structural problem. The field needs to actively recruit, support, and promote autistic researchers, and it needs to treat their perspectives as essential, not optional.

Botha and Cage's study is a mirror held up to a field that has spent decades looking at everyone but itself. The reflection is uncomfortable. But looking away is not an option anymore. The people being studied have been saying this for years. Now the data says it too.