My thoughts on #Spectrum10K

In case you haven’t heard, Cambridge Autism Research Centre, lead by Prof. Simon Baron-Cohen, have launched a new research initiative. They want 10,000 autistic people to send them their genetic material. There has been a bit of fuss in the Autistic community because of the unsatisfactory answers given by Spectrum 10K when asked about data safety and the way some ‘Ambassadors’ have behaved, including naturalist Chris Packham calling anyone who disagrees with the research a science denier and conspiracy theorist, and ‘comedian’ Paula White calling a respected autistic autism researcher ‘brainless’.

I haven’t commented on any of the Twitter threads, but I’ve been reading them and taking in the information. The main issue is that there isn’t any guarantee about the security of the data, which may be sold to companies at a later date, and that some of the people and organisations involved, even tangentially, are known to want to ‘cure’ autism. Yes, we’re scared of eugenics.

There’s no guarantee that in future the data won’t be used by dodgy scientists or politicians. Baron-Cohen has said this himself. And yet he wants to collect the material that could be used by said dodgy scientists and politicians. Surely, if you know that’s a possibility, you don’t give them the material?

Baron-Cohen is an arse; I wouldn’t trust him to look after a bucket of horse manure for my veg garden, let alone my genetic material. His various hypothesise about autism and autistic people have caused a massive amount of damage to autistic people, especially women, non-binary people and POC of any gender. This is not the man we want looking after our data.

Spectrum 10K claims to want to improve the wellbeing of autistic people by looking at our genetics. Things like why so many of us are depressed or anxious. Baron-Cohen et al. are convinced it must be genetic. If he’d bothered to ask us, he’d know it’s because so many of us are bullied, burnt out and forcing ourselves to ‘act normal’ because if we don’t we lose our jobs. Life is hard, we live in societies that place material wealth and status above good lives and living joyously. Capitalism and patriarchy are a hell of a drug if you’re at the top, but the only way to stay there is to keep forcing everyone else to work hard in the hope that one day they might be at the top. The way our society is set up doesn’t work for anyone, but it really hurts neurodivergent people, disabled people, people from any marginalised group who have multiple intersections of oppression. A long history of stress can cause damage to your mental health, obviously.

They also want to know why so many autistic people also have epilepsy. I can think of a better experimental design to discover any data on epilepsy and autism, than just asking 10,000 random autistic people for their DNA.

Let’s see, you get a cohort of autistic people with epilepsy, a matched cohort pf non-autistic people with epilepsy, a matched cohort of autistic people without epilepsy, and finally a matched cohort of non-autistic people without epilepsy, then compare their genetics, life and family histories gathered by questionnaires, maybe even access medical data.

Maybe there is a suite of genes that occurs more often in people with epilepsy, maybe for some reason they occur closely with genetic sequences found commonly in autistic people? After all the research is written up and published, everything, samples, raw data, medical records and any data taken is destroyed entirely.

Anyone want to give that a try? Even if the cohorts are small, because it’s hard to get matched cohorts, it might provide more useful information that randomly fishing around in DNA and hoping something will pop up.

For an in-depth discussion of the issues, Sarah Boon has a good blog post here.

There’s also this article here from autistic academics about why our concerns are valid.

Personally, I really, really want to look at my DNA and my relatives’ DNA. I’m fascinated by how we got to be as weird as we are; our normal is not everyone else’s normal. I know a lot of people like this, they might be the only one in their family with a diagnosis, but their entire families are neurodivergent in some way. I’m sure it would be interesting and might produce useful information.

However, I just don’t trust the researchers doing this project. Anyone who has a consent form that makes agreeing to allow your data to be used by commercial entities and other, as yet unknown, researchers, at a later date compulsory, and expects kids as young as six to consent to the research cannot be trusted. If the researchers want to know something specific, ask for that specific information and promise to destroy the samples and data after the research is done and published. The research would be repeated anyway, because that’s how consensus is formed, so nothing is lost by destroying the data and samples. How is this difficult to understand?