Fictional Foresight and Autism Advocacy: The Role of Science Fictional Narratives in Unearthing Eugenic Motivations

Fictional Foresight and Autism Advocacy: The Role of Science Fictional Narratives in Unearthing Eugenic Motivations

Ryan Collis

At the end of August 2021, a research project named “Spectrum 10K” launched in the United Kingdom. Its goal: to collect the genetic data of 10,000 autistic people to “investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families” ( This quickly became a lightning rod for controversy as the autistic community wrote articles and circulated petitions against the project. The backlash eventually grew so strong that the project voluntarily paused, with project representatives “apologiz[ing] for causing distress, and promis[ing] a deeper consultation with autistic people and their families” (Sanderson). The reason for the strong condemnation of the project, as well as the formation of a community specifically to oppose it, is the subject of this paper. The fears of the potential eugenic use of DNA brought together a community that had a unified understanding of what DNA, genetics, and eugenics are, which was mostly based on the way they are presented in the fantastic. While there are real world examples of DNA editing, such as CRISPR (Le Page), most people’s understanding of what genomic medicine is comes from science fiction. Further, through the proliferation of autistic-coded characters in SF (such as Spock, Data, and the Terminator), negative stereotypes and misrepresentations of the autistic community further influence public perception of what it means to be autistic. The claims by Dr. Simon Baron-Cohen, one of the lead researchers, that the purpose of the Spectrum 10K project is benign, must be viewed in light of fantastic representation of genetic science and eugenics. 

Non-autistics consider Baron-Cohen to be one of the most knowledgeable voices in autism research. Autistics have a significantly less positive opinion of him, because while his claims have a wide reach, they are mostly “bad takes”—a slang term used to flag what is commonly seen on social media as a clear error in judgment made even more regrettable for having been published at all (Dias). He once ran a study that produced results so improbable that the authors of the software he used objected to its publishing (Bach and Dakin). To end the controversy, the research team ran the experiment again and had to retract their original results (Tavassoli et al.). To expand the scope and source of Baron-Cohen’s negative impact on the autistic community, we can also turn to science fictional representation. In SF, the autistic-coded alien/non-human (e.g., Spock or Data) often does not understand or experience emotions, thereby placing them outside the realm of the human. I use the term “autistic-coded” because the authors of these texts were not necessarily intending the character to be autistic, but there is a link between this type of dehumanized character and the archetype of the emotionless autistic who lacks empathy. That depiction of ‘what an autistic person is like’ comes from Baron-Cohen’s “empathizing-systemizing theory,” which claims that males are systemizers and females are empathizers, a conclusion he reached based on a study where baby boys looked longer at an object and baby girls looked longer at a person. However, these results could not be replicated (Spelke). Science journalist Angela Saini argues that Baron-Cohen overstates the significance of his findings and notes that his foetal testosterone level studies have provided no evidence for his argument (Saini). This clear lack of scientific viability is significant given that Baron-Cohen is one of the creators of the autism-spectrum quotient, a common questionnaire that is used in diagnosis (Baron-Cohen et al.; “Autism Spectrum Quotient (AQ)”). It has been criticized for its overuse of stereotypes as the basis for diagnosis—for instance, an interest in math increases the score while an interest in literature or art decreases it—which further reinforces stereotypes linking math skills and autism (McGrath). In his book, The Essential Difference, Baron-Cohen presents the idea of autistic mind blindness, the idea that autistics cannot understand the minds of others. A review of the book, published in Phenomenology and the Cognitive Sciences, described his work as “very disappointing,” noting that Baron-Cohen has a “superficial notion of intelligence,” and concluding that the book’s major claims about mind-blindness and systemizing–empathizing are “at best, dubious” (Levy 315, 316). Baron-Cohen’s response to criticisms has been to agree that while his results have not been replicated, he “remains ‘open minded about these hypotheses until there are sufficient data to evaluate them’” and yet he does not see a problem with publicising his theories before there is evidence to confirm them (qtd. in Buchen 26). With this attitude towards the necessity of evidence for his theories, Baron-Cohen problematically offers pure speculation as science, suggesting that he may be content to remain within the realm of science fictional thought experiments without care for the way narratives influence both science and public perception. Scientists rely on existing cultural narratives to explain the significance of their work, and so SF that presents autism or autistic-coded characters both reflects and influences the goals, understanding, and direction of actual scientists (Hamner, Introduction).

What does genetic research with dubious justification and a researcher with a history of publicizing stereotypes about a minority have to do with the fantastic? The answer comes from the link between how people understand advanced science and SF. SF can provide an understanding as to how and why resistance to ‘advances’ formed as it did regarding the Spectrum 10K project. For most people, knowledge of genetics comes from their exposure to fiction rather than formal education, but Hamner makes the claim that scientists, too, use cultural narratives to explain their work; science both shapes and is shaped by fictional narratives (Introduction). There is no shortage of fantastic works that imagine the role of genetics in possible futures. In Jurassic Park, egotistical scientists “were so preoccupied with whether they could, they didn’t stop to think if they should” (Spielberg) while in Gattaca, testing DNA determined who was a member of the elite and who was condemned to the lowest rungs of society (Niccol). The autistic understanding of biomedical research is, in part, shaped by fictional media representations, such as those above, that often show it as “an unscrupulous enterprise that exploits individuals for the sake of advancing knowledge and/or profit” (Cottingham 285). Cottingham calls on Foucault to argue that just as texts shape and construct reality, fictional media is more than mere representation (285). Rather, fictional narratives have the power to shape public perception and public discourse and, in turn, can help us better understand the public and community-driven response to the Spectrum 10K project. To provide evidence for this claim, I will illustrate key connections between the following three concepts: that media (and specifically SF) influences public perceptions of science; that autistic people are exposed to this media and internalize the message that future scientists may weaponize genetic screening for eugenic purposes; and that this distributed knowledge has lead to the formation of a community predicated on social justice objectives: specifically that there should be no research on autism that is not guided by autistics, or, as per the motto of the Autistic Self Advocacy Network (ASAN), “nothing about us without us” (

In pursuit of my first assertion—that media influences public perceptions of science—I turn to an additional example. Kirby examines the 2002 film Blade II (del Toro), and notes the plot is a retelling of the story of aristocratic purebloods (those born with vampirism) worried that newly turned vampires are degenerating their race. The leader employs genetic manipulation to remove flaws (e.g., weakness to silver and sunlight) preventing vampiric ascendancy, mirroring how historical eugenicists argued against the dilution of pure bloodlines in pursuit of a master race. Kirby notes that “eugenics, it seems, is a clear-cut means of making vampires more evil. By implication, the film condemns any person utilizing gene-altering technologies to achieve social control” (“The Devil in Our DNA” 100). In his two-part story Beyond This Horizon, Robert Heinlein claimed that “Only under absolutism could the genetic experiments . . . have been performed, for they required a total indifference to the welfare of individuals” (Heinlein, qtd. in Clayton 324). Heinlein’s narrative cautions that if humanity learns to pick and choose what traits are permitted to pass on, we risk “homogenization of the species, or its opposite, overspecialization” (Clayton 324). Other fantastic literature echoes this claim. For example, Kirby notes that in Frankenheimer’s 1996 adaptation of The Island of Dr. Moreau, “Even though Moreau feels he can save humanity from its genetic demons, the film makes it clear that the devil is embodied in a scientist’s willingness to manipulate humanity’s molecular soul” (“The Devil in Our DNA” 100). One of the most explicit examples of fundamentally non-human beings who appear human are the replicants in Ridley Scott’s 1982 film Blade Runner, based on Philip K. Dick’s Do Androids Dream of Electric Sheep? (1968). Like the stereotype of autism promoted by Baron-Cohen, these simulacra lack the ability to empathise (a trait that is used to identify them so they can be executed) and these less-than-human beings are used to do the tasks humans cannot or will not do. The film asks if beings who are biologically similar to humans can be considered “human” despite their lack of empathy and artificial nature. Like autistics, “the replicants do not want to be considered ‘superior’ to humanity, rather they want to be considered an equal part of humanity” (“The Devil in Our DNA” 95). Often in SF there is a link between being human (with all its rights and privileges) and possessing empathy. This connection is demonstrated by the treatment of the white female protagonists in both Alien: Resurrection and Species (see Stacey 82). 

My intent is to demonstrate how SF influences both scientific aspirations and public perceptions and responses to genetics projects. At the same time, SF representation of autistic-coded characters also influences perceptions of autism, giving rise to stigma and stereotypes. Three threads intertwine here:

  • The representation of autism influences and is influenced by stereotypes, such as Dustin Hoffman’s Raymond in Rain Man , and those presented by SF and the fantastic like She-Ra’s Entrapta;
  • Expansive projects like Spectrum 10K are inspired by these representations and by the veneration of scientists’ speculation;
  • Communities also have SF as a resource to see potential futures and to push back against problematic research using SF texts as speculative narratives that illustrate their fears.

SF texts provide a way to examine possible futures, which is why SF “has come to be seen as an essential mode of imaging the horizons of possibility” (Csicsery-Ronay 1). Texts opposing genetic research argue a society which allows selection or screening of genetic traits is the opposite of a free, individualistic (and thus Western) society. These texts have alerted the autistic community to the dangers of genetics research that leads to eugenic ends. SF becomes a space where we argue the ethics of science.

When the Spectrum 10K project was announced it caused quite a stir, because anything that has the potential to be used to prenatally screen for autism holds the potential to exterminate a minority group. This is not hyperbolic: after screening programs for Down Syndrome became commonly available in Iceland, abortions of fetuses that tested positive reached 100%: no babies with Down Syndrome have been born in Iceland since 2017 (Rogers). This elimination—or as Chambers calls it, genocide—of those who have a detectable condition is feared as the fate of any group that carries a marker in their genes. Research has shown that over half of parents who had their child (aged 2-6) genetically tested for biomarkers of autism would have chosen to have the results at conception or birth (Wagner et al. 3118), recalling the warning of the film Gattaca “that the eugenic mentality of the early twentieth century might return with even greater discriminatory force in the twenty-first” (Hamner Ch. 1)—a world where human futures are decided before birth. Stacey traces the idea of the “encoded body as a threat” back to the 1950s and 1960s “body rebellion films” making it a site of suspicion and a space for potential rebellion requiring, as Gonder explains, “‘special and extreme levels of surveillance by scientific experts’” (qtd. in Stacey 72) to quash rebellion and ensure conformity. Autistics and their allies, drawing on narratives that clearly articulate the genocidal consequences of genetics screening, began to organize a resistance against the project almost immediately. 

The internet has led the creation of many communities of people who would have otherwise never encountered each other (Nicolaidis et al.). When word of the Spectrum 10K project’s plan to collect large numbers of DNA samples circulated online, a community of autistic people formed to resist this project. Botha et al. note that autistic community connectedness (ACC) plays a role in protecting the wellbeing of autistic people. Here, community is defined as a group of people united by a collective identity and shared values (Botha et al. 3) working together toward a common political goal (16), and “refusing to take part in genetic research which may lead to the potential for the removal of autistic genes or a cure” because they feel “detached and dehumanized by autism research” (19). Bothea et al. specifically reference ACC’s connection to “an awareness of shared grievances (genetic research and a fear of eradication), [and the identification of] adversaries with whom they have a power-struggle with (researchers and professionals who advocate for these genetic understandings)” (Botha et al. 20). Boycott Spectrum 10K, a coalition of autistic advocates, identified a number of red flags, including issues surrounding transparency and consent (Boycott Spectrum 10K). Spectrum 10K’s rationale for collecting DNA was suspect, and participants were required to allow unknown third parties in the future to have access to the anonymized data. The collective noted that the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium grant funding the project is “solely focused on identifying ‘several genetic variants that contribute to the development of autism’” with no mention of aiding “co-occurring conditions,” despite that being the reason given by Spectrum 10K for collecting genetic samples. This immediately led to fears that the data could be used to create screening tools to eliminate autistics before birth. Baron-Cohen is on record in 2019 agreeing that “there’s no way that we can ever say that a future political leader or a scientist won’t use the [genetic] research for eugenics” (qtd. in Opar), which is part of the reason that autistics fear having their genetics exist in a database with unclear regulations for who will be granted access. Quinn, host of the Autistamatic YouTube channel, argues that one of the reasons autistic people are drawn to SF is because SF involves clear distinctions between the ‘good’ and ‘bad’ guys, alleviating the difficulties that autistics have with “the ambiguity of people’s motivations” (Autistamatic). An SF outlook on a mistrusted scientist leading a mysterious, well funded project that collects people’s DNA (for reasons they represent differently in the grant and in public) and can share with unknown parties in the future can only be read one way: as a potential threat. Bruno Latour wrote of the power of fiction to, “through the use of counterfactual history, thought experiments, and ‘scientifiction’,” see connections that are otherwise hidden (82). SF empowers marginalized groups in their resistance against violence by helping them articulate their fears of the consequences of potential research in a way that the public can understand, given the wide-spread proliferation of fictional narratives that depict such possibilities. SF becomes a space of empowerment.

The connection between autistics and SF has been written about before. English professor, and father to a non-speaking autistic son, Ralph James Savarese, writes that he “had a sense, a strong sense really, that autism and sci-fi went together. They were like two astronaut peas in a spaceship pod” (89). While one cannot say “all autistics love SF,” there is some research to show that it is popular with autistics (see, for example, Davidson and Weismer) and even Baron-Cohen noted that the “more systemizable” SF had greater appeal to autistics than “pure fiction” (“Autism, Hypersystemizing, and Truth.” 72). SF is influential in how people negotiate futures (Reinsborough) and “both proponents and opponents of any given technology or scientific advancement turn to science fiction narratives” when there is uncertainty about research and its social impact (Lynch 37). In some cases, books, television, film, and video games inform public perception of scientific research and public debate more than the actual developments in research (see, for example, Reinsborough; Kirby, “The New Eugenics in Cinema”; Clayton). Weingart et al. describe the SF trope of the scientist who starts out idealistic but becomes corrupted when their ambitions cause them to “lose sight of the consequences of their work; and, most importantly, they grow willing to violate ethical principles for the sake of gaining new knowledge.” (Weingart et al. 283). They further note that:

The utopian or dystopian views about science are clearly dominated by concerns about the manipulation of human and animal life. Not surprisingly, medical research is, again, most often associated with fictional developments, followed by genetics, physics, psychology, and chemistry. (286)

When the geneticist in Gattaca meets with Vincent’s family, he is eager to impress on the prospective parents that the genetic selection process removes traits that would be socially disadvantageous: baldness, poor vision, obesity. His playing on existing beliefs and attitudes is a representation of what parents, given the opportunity to secure what they see as the best possible future for their children, would experience should genetic testing and pre-implementation screening become more accurate and available. Hamner notes that “even when genetic fantasies have little to do with actual biology, they often powerfully shape science’s public reception” (Introduction). Yet the message of Gattaca is that it is because of Vincent’s defective genes that he has honed a trait the genetically enhanced characters lack: “inner strength or ‘spirit’” (Kirby, “The New Eugenics in Cinema” 207). Hamner, writing about similar issues of genetics in the X-Men movies, notes that there is a double reality at play: while the “genetic specifics might be ludicrous,” science fiction “is often deeply insightful about the ultimate inseparability of biology and culture” (Introduction). 

Hamner argues that the lesson of the X-Men universe is “less about the effects of personal genome testing or new gene therapies than whether experiences of prejudice and injustice should inspire reform or spark revolution” (Introduction). In the case of Spectrum 10K, the result was a revolution that demanded reform. In Botha et al.’s definition of ACC they employ a broader definition of community: a shared form of collective identity, values, and emotional cohesion that is not limited by proximity, which “reflects the cognitive and affective components of community; emotional bonds or ideological solidarity” (Botha et al. 3). They note that political ACC has been described by others as either a connection to a “power grid of activists” promoting social justice or a “grand counter-culture” (15). The connection to other autistic activists gave members of the group a sense of purpose, a feeling of control, and a network of like-minded individuals fighting for similar goals (Botha et al. 16). Those active in political ACC work to end stigmatizing depictions of autism, educate the public, ban unethical ‘cures,’ and direct research funding towards areas considered important by the community (Botha et al. 13). 

As a result of the attention drawn to it by autistic resistance, Spectrum 10K paused its research. Not only that, but, because of the “significant amount’ of feedback about the study” they received, the Health Research Authority and the Research Ethics Committee have requested further information from the research team about “social or scientific value; safety or integrity risks to participants; the study’s feasibility; the adequacy of the site or facilities and the ‘competence or conduct’ of the study’s sponsor or investigators” (O’Dell). Operating from a common understanding of the risks of genetic research, an understanding that was in no small way the result of the Fantastic influencing popular culture and the social understanding of science, a group of autistic advocates and their allies formed a community. This community had fewer resources (funding, public reputation, the cachet of ‘science’) yet was able to prevent, at least for now, a well-funded scientific project helmed by a world renowned ‘expert.’ Even after the announcement of the study’s pause, a group of autistic advocates engaged in a physical protest at Baron-Cohen’s research center. When autistic advocates announced they would protest at his center, Baron-Cohen, who was knighted in 2021 for his “services to people with autism” (Brackley), threatened the protesters with police officers and dogs, something he later apologised for and admitted “there were ‘no plans for police, or police dogs’ to be present” (Pring). The research center did, however, get a new chain to secure the front gate causing one protester to note, “‘Literally, they’ve locked us out completely. And that’s how it is in reality, we are locked out of any research or anything about us and it shouldn’t be like that, there should be nothing about us without us’” (Pring). 


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Ryan Collis is a Ph.D. student in the faculty of education at York University, working in the intersection of autism, expertise, and science fiction to discover future imaginaries where autistic students are truly supported. He holds degrees in English (B.A., Queen’s), computer science (B.Sc.H., Queen’s), education (B.Ed., OISE), and science and technology studies (B.Sc.H., York; M.A., York). Ryan has been a high school teacher in the York Region District School Board since 2006, is a Member at Large of the executive of the Canadian Committee of Graduate Students in Education (CCGSE), and serves as the Graduate Student Officer of the Canadian Educational Researchers’ Association (CERA). Ryan lives with his wife and son in Ajax, Ontario. 

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