Aug. 31, 2021 marked the launch of Spectrum 10K, an autism study led by researchers at the University of Cambridge, the Wellcome Sanger Institute and the University of California, Los Angeles. Spectrum 10K aims to learn more about improving support for autistic people by collecting survey responses about their experiences with autism, along with DNA samples from 10,000 autistic individuals and their families. Spectrum 10K also plans to investigate environmental and genetic factors contributing to autism and its comorbid conditions.
Numerous autistic neurodiversity advocates responded to the study with intense backlash, expressing ethical concerns about its design. On Sept. 10, leading researcher Simon Baron-Cohen announced that Spectrum 10K would pause recruitment of new participants and refrain from analyzing data already collected.
“This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K,” he wrote in the online statement.
However, pausing recruitment doesn’t adequately address the concerns of autistic advocates. If the Spectrum 10K researchers want to support neurodiversity like they claim, they should cease the project altogether.
Autism research is a contentious topic among autistic self-advocates. Historically, most autism research has focused on finding genetic and other biological causes of autism, often with the goal of reducing its prevalence. Many autistic people oppose this type of research; they value autism as important to their identities and prefer autism acceptance, viewing prevention and “cures” as eugenics.
I’d love to learn more about biological factors to further my knowledge of how my autistic brain works, but now is not the time. The problem is that autism stigma makes genetic research highly exploitable for those who want to eradicate autism. Society must learn to accept autistic people before researchers can conduct genetic studies that are at risk of falling into the wrong hands.
Spectrum 10K has expressed opposition to eradicating autism, but collecting DNA has high potential for abuse. Spectrum 10K aims to create an autism DNA database to be shared with external researchers in future studies. While they claim they will share data only with researchers who want to improve the well-being of autistic people, Baron-Cohen has previously said “there’s no way that we can ever say that a future political leader or a scientist won’t use [genetic] research for eugenics.”
Spectrum 10K’s genetic focus thus becomes puzzling. Exactly what future studies will investigate using the database is uncertain, so there’s no guarantee that the strictest caution will completely block database access to people seeking to cure autism. Even if these people never access the database, Spectrum 10K will present its findings in scientific journals and conferences. The results may still inform subsequent cure-oriented research.
Spectrum 10K clarified that genetic research will be used to target comorbid conditions like epilepsy and depression, not autism itself. But if the study wants to target comorbid conditions, it should include allistic (non-autistic) people with those conditions. It doesn’t make sense to study autistic people exclusively.
Additionally, many autistic people distrust Baron-Cohen and co-leading researcher Daniel Geschwind. Baron-Cohen previously formulated harmful and inaccurate ideas about autism, such as the debunked theory that autistic people lack a theory of mind. Geschwind guided development of the Autism Genetic Resource Exchange, a program under the nonprofit Cure Autism Now, which later merged with the organization Autism Speaks.
“[Autism] involves dysfunction in social cognition, language ― the things that are really part of what makes us human,” he asserted. This suggests autistic people aren’t fully human — an idea with dangerous implications for autistic people, several of whom die by filicide under ableist caregivers each year.
Spectrum 10K raises concerns about the lack of autistic involvement in autism research. Autistic people comprise less than half of the members of an advisory panel that reviews the study’s ethics. The specifics of autistic representation in decision-making — such as the number and diversity of autistic people on the study’s steering committee — are otherwise unclear.
Allistic researchers may fear that collaborating with autistic individuals as research partners introduces bias. I’d argue that it reduces bias by introducing a wider variety of perspectives. Predominantly allistic leadership can cause one view to unfairly dominate the research. With autistic viewpoints on the direction of the research, allistic researchers can more easily discover any flawed assumptions they might have about autism that may influence data collection and interpretation.
Autistic people can contribute their experiences to creating accessible data collection instruments. This prevents oversights in research design from inadvertently excluding a meaningful chunk of potential participants.
Despite pausing active participant recruitment, Spectrum 10K still allows people to register interest in participation. Spectrum 10K must recognize that for the study to improve in accordance with the wishes of numerous autistic self-advocates, the design of the research must be entirely different. According to autistic self-advocate Tanya Adkin, “without the DNA, there is no study,” in its current form. The study as it stands cannot continue.
Given the prior harm Baron-Cohen and Geschwind have caused to the autistic community, autistic individuals who are representative of the self-advocate community may be reluctant to partner with the two researchers in a different study. Should another study be initiated, the research team will also have to change.
This article is far from an exhaustive list of the issues with Spectrum 10K. For more information, please read, sign and share the Boycott Spectrum 10K statement. To learn about and help the general autistic community, I recommend donating to the Autistic People of Color Fund and browsing the Autistic Self-Advocacy Network, Autistic Women and Nonbinary Network and Academic Autism Spectrum Partnership in Research and Education.
Luciénne Reyes PZ ’24 is from Los Angeles, California. Her only dorm room decoration is a Live Laugh Love sign that she jokingly painted at a painting event shortly before the beginning of this school year.