The waters surrounding autistic genetic studies are best described as murky. The MSSNG project from Autism Speaks and SPARK from the Simons Foundation are prime examples (as both organizations are partners).
Aside from them being viewed as harmful by many autistic people online from trying to find genes rather than providing services for autistic people living today, they are also based primarily in the United States. Recently, The United Kingdom has weighed in on the matter with Spectrum 10K, a brand new project spearheaded by Cambridge University with Simon Baron Cohen serving as lead researcher.
Spectrum 10k aims to collect genetic material from 10,000 autistic people in the UK to identify “the genetic causes of autism, and the environmental ones,” according to Baron-Cohen.
For those who don’t know, Simon Baron-Cohen is a British clinical psychologist and director of Cambridge University’s Autism Research Center. Although the projects mentioned often create fear of eugenics for autistic people, Baron-Cohen has spoken out against eugenics in the past in a tweet from 2018. On the other side of the coin, he released a book called Zero Degrees of Empathy, which claims autistic people lack empathy. In reality, autistic people express empathy in a different way than the neurotypical majority.
Aside from Sacha Baron Cohen’s cousin Simon, a lesser known but equally impactful American professor of human genomics named Daniel Geschwind also helms the project. His work is described in the Semel Institute UCLA page as “identifying genetic factors that cause ASD and then using this knowledge to understand the mechanism of the disease.” Objectively speaking, a disease is something negative and undesirable, which paints autism in a way that many with the condition object to. Such language could excuse researchers when attempting to find the “causes” of autism, which could lead to any number of outcomes.
Geschwind helped create the Autism Genetic Resource Exchange, which was a genetic database funded by Cure Autism Now, which merged with Autism Speaks in 2007. One quote from the man stands out, taken from an interview in Spectrum News. “If you’re interested, even in a more abstract way, in human behavior and human cognition, autism is an extraordinary window into that,” Geschwind said. “It involves dysfunction in social cognition, language ― the things that are really part of what makes us human.” He seems to imply that one must have language and social cognition to be considered human, and if autistic people lack that, then it is possible they cannot be considered human. Geschwind also personally calls the condition itself a disease throughout the article.
As part of the Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium in 2018, a team which composed of Baron-Cohen, Gerschwind, Dr. Matthew Hurles, and Professor David Rowitch were given the collaborative award in science. All four men are part of the team behind Spectrum 10k. “We will accelerate gene discovery by collecting DNA samples from 10,000 people with autism in the UK and their immediate families,” the page states. “We will combine this information with genetic information from 90,000 other people with autism already gathered from around the world.” None of this is mentioned on the Spectrum 10k website.
“There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”
-Simon Baron-Cohen
Spectrum 10k being used as a tool for eugenics might not be as far-fetched as some may think. Baron-Cohen himself admitted in a Spectrum News article in 2019 when talking about genetic research, “There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.” He continues, “I think responsible scientists can speak out against that and say, ‘These are the positive reasons for doing [genetics research].’” Since the genetic material of Spectrum 10k will be combined with 90,000 samples from different databases, there is no way of knowing what could truly be done with those samples.
A specific example of eugenics towards the autistic population would be detecting autism in a mother’s womb and aborting the fetus, similar to the prenatal test for Down syndrome which began in the 1970s. This theory might be closer to reality, as evidenced by Hurles’s bio on the Wellcome Sanger Institute page. “I also lead the Prenatal Assessment of Genomes and Exomes (PAGE) Study (https://www.pageuk.org), a collaboration between pregnant mothers and their partners, a network of UK Fetal Medicine Centres caring for these pregnant women and the Wellcome Sanger Institute,” he writes. “Together we are investigating the genetic causes of developmental anomalies that are identified during prenatal ultrasound screening, with the aim of improving the prognostic information that can be provided to parents.” Given his experience with both that and genetic databases, could his expertise be the catalyst for prenatally detecting autism? It is only speculation, but worth noting regardless.
It’s not just the scientists leading the program who are questionable, but the ambassadors as well. Paula Wright (@SexyIsntSexist) describes autistic critics of the study, “Already, it seems, a highly politicised community on Twitter are scare mongering about #Spectrum10K being a slippery slope to eugenics.” She continues the thread detailing autistic people’s fears as “rubbish” and calling it “toxic ideologies.” Her words were met with much backlash.
“For eugenics – no thanks,” one person replied to another tweet. Wright replied, “You have a degree in genetics from the University of Brainless Ideologues, I see. Congratulations.”
The long-term outcomes of Spectrum 10k are not entirely clear. To a degree, such vagueness can be discomforting, as autistic people need predictability. A vital goal autistic people share is gaining access to services in the present day, which the project will not provide. Such studies are rather expensive as well; much of the money would lead to greater outcomes for autistic people living today if it was allocated towards support staff, respite, and counseling for those with co-occurring depression and PTSD, which many on the spectrum share because of a society that too often fails to meet their needs.
Whether Spectrum 10k, MSSNG, SPARK, and other massive databases become a footnote in historical scientific textbooks, possibly treating co-occurring conditions like seizures and GI issues, or leading to fetal autistic abortions is yet to be determined. Whatever the end result may be, many autistic people are justifiably worried given the evidence on the table.
The world greatly benefits from diversity, and to prevent any autistic people from existing, even if it’s a small portion of the population, would be a great disservice to society as a whole.
I enjoyed your writing. Very disturbing stuff!