Spectrum 10k is projected to be the UK’s largest study into autism with the vision to investigate how genetic and environmental factors impact autistic people and their wellbeing. Led by the Autism Research Centre (ARC), and directed by Professor Simon Baron-Cohen, Spectrum 10k has been met with concern and controversy by the #ActuallyAutistic community and their allies.
I’m autistic. It’s part and parcel of my identity and outlook – it informs my everyday life, and profoundly impacts my future. I was concerned to hear about Spectrum 10k, and interested in how having an insight into the genetic causes of autism might improve the wellbeing of autistic people.
I’ve always been an advocate for investing funds into support and services that can help to practically optimise the wellbeing of all autistic people, regardless of traits, behaviours, or comorbid conditions. Spectrum 10k is spending its money elsewhere, asking for a DNA sample and online survey from all autistic participants.
It’s important to recognise that there is widespread support for research into autism. We could call for a study led by autistic people with the lived experience, knowledge, and expertise to execute a considered and responsible investigation into our collective and individual wellbeing. I believe that developing our understanding of autism by way of transparent research informed by autistic voices can only be a good thing.
When we centre the autistic narrative, we look to interrupt and deconstruct the external oppressive and ableist structures that limit us. We are surrounded by a society built for neurotypicals, no amount of DNA samples and statistics can call for the accommodations and reasonable adjustments that we both need and deserve. Autism is a human condition, it’s nuanced, complex, and often rooted in anecdote, not locked in DNA.
Spectrum 10k instead presents an alternative approach that’s rooted in research rather than response. Some see real value in this, but I have concerns.
There have been reports that the co-principal investigator Daniel Geschwind has had historic connections with an organisation called “Cure Autism Now”, whilst the Wellcome Sanger Institute has had allegations of the commercialisation of health data. The Sanger Institute has since refuted the claims.
To be clear, most autistic people don’t want a cure for autism. I count myself in that camp, and as an autistic person with the privilege of predominantly “passing” as neurotypical, I don’t speak for everybody. There appears to be a difference of opinion between the autistic community and the autism community – some parents of neurodivergent children have expressed a desire for early diagnosis indicators, something that research could potentially provide.
I feel wary of this, but appreciate that my perspective is one of many. Should scientists find a cure, cause, or indication, what would they do with that information? This feels like preventative autistic care, positioned to anticipate a condition that affects approximately 700,000 people in the UK. What would happen if we could screen for autism pre-birth? The potential consequences could be catastrophic and have an impact beyond measure.
Simon Baron-Cohen suggests that the research will investigate why some autistic people have comorbid conditions like anxiety, epilepsy, and depression that exist alongside autism. I understand this effort, but why are we isolating autistic people? Investigating the genetic cause of depression is not exclusive to the autistic population – analysing a cohort of 10,000 for a condition shared by approximately a quarter of the UK doesn’t quite tally.
The potential repercussions of harbouring genetic data from a specific group of people generates valid questions about where that data ends up. The three options detailed in the FAQ about withdrawing from the study make it clear that Spectrum 10k reserves the right to hold onto the information for “archival audit purposes” as soon as you submit your details.
In the case of requesting “no further use” of data, Spectrum 10k says that it “would not be possible to remove data from the research that had already taken place”. My concerns lead into questions of privacy. The “commercial collaboration” clause makes it clear that anything shared with partners beyond the study will be in line with the aims of Spectrum 10k. This doesn’t provide me with a great deal of reassurance.
DNA to one side, Spectrum 10k asks for a formal diagnosis to participate in the study – this doesn’t include or represent the full scope of the autistic population. In my experience, autistic diagnoses are highly inaccessible, particularly for further marginalised people who either aren’t recognised as presenting typical autistic traits, or don’t have the funds to source a private diagnosis when NHS waiting times are often reaching into years. This is a highly divisive requirement, and further demonstrates why there’s a belief that the study’s authors have not paid attention to the lived experiences of the autism community.
An article published in 2019 by Spectrum News platforms Baron-Cohen’s views on his understanding of the biology of autism. The focus on genetics is presented as a significant concern in its potential to impact selective abortions or genetic engineering, issues that Baron-Cohen responds to as “fears [that] are not unfounded”.
Baron-Cohen goes on to say “There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.” From my perspective, the acknowledged risk of this sinister historical practice of eradicating “undesirable characteristics” including disability and disease is seriously alarming.
An assortment of celebrity ambassadors have been recruited for the study including conservationist Chris Packham who tweeted his support for the study, as well as presenter Paddy McGuinness who is a parent of autistic children.
I feel uncomfortable with Spectrum 10k using autistic people and those around them with influence to create a false sense of trust. Much of this discourse can be found under the hashtag #StopSpectrum10K where many autistic people have presented clear, considerate, and concise arguments against the study.
Ann Memmott conducted an informal poll on Twitter to help gauge the views of autistic academics, specialists, and professionals on the Spectrum 10k project. 69.4% of 556 votes (as of 28/08/21) agreed that they were “concerned” about the project. The poll was in response to some healthcare professionals suggesting that those raising concerns weren’t qualified to comment, a view that worries me deeply.
An autistic “qualification” feels uncomfortably clinical and professional – autism is found in lived experience, a resource that bears no comparison to arbitrary qualifications, educational or otherwise. With this issue to one side, but still in mind, it seems that academic specialists have good reason to question the Spectrum 10k study, in addition to the swathes of the autistic community that have already made their feelings known.
As Sara Gibbs says, there’s no reason to find the cause of something unless you’d like to prevent it. The discourse surrounding Spectrum 10k makes for uncomfortable reading, a misguided investigation into genetics with an outcome unknown.
This piece anticipates a roundtable on September 8th 2021 with the aim to provide clarity on the Spectrum 10k research.
Spectrum 10K researchers’ statement
In response to concerns raised throughout the past couple of weeks, Spectrum 10K researchers said in a statement: “We understand that some autistic people and their families have concerns over the collection and use of genetic data, which is one part of this study.
“We recognise that we need to do more to explain the value of this research, the measures in place to protect your data, and other concerns.
“We are actively working with autistic people and will be listening to more autistic voices to address these concerns.
“We will update our website and social media as this work progresses.”
METTE is a writer, collector, and curator working at the junction between print, audio, and interdisciplinary projects. Receiving an autism diagnosis at age twenty one she has a vested interest in representation and accessibility.
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