Spectrum 10K – unpaused and still unethical

In August 2021 the Spectrum 10k (S10K) research project was announced. It aimed to collect 10,000 DNA samples and medical records of Autistic children and adults (there is more information on the study at Aucademy).

After a well thought-out and planned boycott from Autistic advocates, academics and many others, S10K was paused so the ethics board could review these claims.

This pause has now come to and end and…. nothing much has changed. The only thing which is new is a consultation period which is being lead by Autistic people (mostly researchers). There are many issues with this including the timing of the consultation, the focus on non-Autistic people’s needs, the probable continued exclusion of marginalised Autistic folk and the continued extortion of Autistic people.’

Why is this consultation happening 17 months after the start of the project? Autistic people should be consultants and lead researchers on all research on our experiences. We were clearly an afterthought for this work (for many reasons which have been made clear through Aucademy , Emergent Divergence and Boycott S10K ) but also due to the lack of our involvement in this work from the beginning. There was a consultation period before commencement of this work however this focused on the views of non-Autistic parents and caregivers and autism professionals. These pilots were simply not fit for purpose (unless the purpose is to pay lip service, then job well done).

Even if this consultation was worth the paper it was written on, it would likely exclude non-speaking; Black, Indigenous, People of Colour; transgender and non-binary; homeless and incarcerated (either in the prison or medical system) Autistic people. Many other marginalised Autistic folk, the most vulnerable in our community, are rarely thought about much less consulted with. It is terrifying to think that there would be a data base of BIPOC and / or trans Autistic folk, especially with the continued systemic and individual hatred and violence they experience on a daily basis. This information could be used to make sweeping derogatory statements about the supposed illness of these groups and could be used to affect more harm.

Furthermore, these marginalized folk are unlikely to be the ones who are paid as consultant leads. The people being used to gather information – information which has been clearly documented by so many of us last year – are being used. This information is all over the internet and Simon Baron-Cohen, the other team members and the project itself were tagged in hundreds of cases. There were even two hashtags which were trending in the UK over the summer of 2021 (#StopSpectrum10K and #BoycottSpectrum10k).

There was a huge online petition (in fact there were two!) which were signed by thousands of Autistic people and our allies. This information was created by our suffering and emotional labour which was given to free for and by our community. We poured our hearts and souls into this work. This work was traumatising and retraumatising, we were / are fighting against something which dehumanises us and hates us and then condescends us by saying it will help our well-being.

Pull the other one.

Why should people be paid to collect the information we not only gave and made for free but also off the back of our own mental well-being? I can name at least twenty of us who experienced extreme burnout due to this, and that’s just from my personal group of friends. There will be countless others out there who lost some of their self-esteem, time, resources and energy to this.

We are angry. Of course we are angry, we are never listened to. However, our anger does not make us any less correct or any less able to advocate for ourselves.

Consult all you like, it is completely meaningless and we can see right through it.

Leave a Reply