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Autism

Why Autistic People Are Worried by Spectrum 10K

A Personal Perspective: Controversial research on genes and neurominorities.

As many people in the autistic community have by now heard, Professor Simon Baron-Cohen, who has spent the past few years rebranding himself as a neurodiversity proponent, has announced a new research programme called Spectrum 10K. This collaboration, between the University of Cambridge and the University of Los Angeles, will, among other things, examine the DNA of a hoped-for 10,000 autistic participants, with the expressed aim of increasing autistic well-being.

While the aim of improving well-being is a welcome one, the focus on autistic DNA has worried many autistic people. After all, autistic people have long been subject to eugenicist attempts to eliminate us, despite most of us wanting to be accepted.

In their efforts to reassure the autistic community that they are not a eugenics programme, Spectrum 10K states on its website that “The Spectrum 10K team views autism as an example of neurodiversity and is opposed to eugenics or looking for a cure for preventing or eradicating autism itself.” However, the researchers still received swift condemnation from many autistic people worried about how the data on autistic DNA might be used in the future by other researchers.

In light of this backlash, the Spectrum 10K team quickly released a further document to explain their reasoning for focusing on DNA. Yet to me this, if anything, is more worrying still. What they state is that the genetic research is only to allow them to target "co-occurring conditions," not autism itself: “Understanding the genes underlying these conditions can help develop better medical support targeting these conditions in autistic people”.

This might sound plausible. After all, many autistic people would benefit, for instance, from a cure for epilepsy. And yet they further explain:

“...many co-occurring conditions (e.g. dyspraxia, motor difficulties, ADHD, depression, sleep difficulties, anxiety) are genetic to various extents. We understand that disability ultimately results from a person’s biology in the context of society. To this end, whilst survey results provide very helpful results they provide incomplete results in understanding some of these critical co-occurring conditions.”

They aren’t completely explicit here, but if they only want to use the genetics to target “co-occurring conditions,” and if two of the key examples they use are dyspraxia and ADHD, then it sounds like, since eliminating autism itself is no longer so acceptable, they have instead turned their focus onto other neurominorities. To many, this core aim of the project will be fairly indistinguishable from eugenics: It is just that the focus has been turned to eliminating intersecting neurodivergence instead of autism itself.

The Need for Voices of People with Intersecting Disabilities

To the researchers' credit, Spectrum 10K does have a small committee of autistic people, family members, and clinicians who review its ethics. But as I have written before, when the focus is on intersecting disabilities (e.g. autism and ADHD in one person), it is imperative that the voices of people at those specific intersections be centred. Put concretely, an autistic person without dyspraxia cannot talk for an autistic person with dyspraxia.

Perhaps some autistic people with ADHD or dyspraxia would want research into the genetic basis of these disabilities, or even for them to be eliminated from future generations? But even if so, it is far from clear that the majority of people with dyspraxia or ADHD would want this research, and it may actively harm those who won't want it. In any case, as Josefina Troncoso, an advocate living at the intersection of being autistic and dyspraxic, put it to me:

The line between conditions falling under the neurodivergent umbrella is only there insofar as professionals keep trying to categorise them as entirely disconnected from one another, when actually they blend into each other; certain symptoms will overlap and hence it’ll be impossible to say whether they’ll be related to one or the other condition. Our brains diverge from the neuronorm in individual ways and you can’t pick what you want to keep and toss away the rest. It seems to me as if this project wants to treat us as humanoid robots with customisable traits in order to perform optimally — it’s eugenics very poorly disguised as forward-thinking research.

To be clear, it is too early to say whether this research will ever be used for eugenic purposes, and some of the Spectrum 10K research may turn out to be useful for well-being. For now, what is clear is that the Spectrum 10k team do not remotely understand the neurodiversity movement they claim to support.

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