Since its announcement in August 2021 thousands of us Autistic people have raised major concerns around the ethical considerations (or lack thereof) of the Spectrum 10K study.
If you’re unaware of the study and it’s aims please see the immense amount of resources created by the Boycott Spectrum 10K via aucademy here.
Due to the inpouring of concern the study was paused whilst the ethics committee reviewed the study.
The biggest pressure was a group effort from Boycott Spectrum 10K, a group of Autistic advocates and academics, as well as the work of Liam O’Dell, a Deaf Autistic advocate, and many others off and online.
During this pause S10K did not have to cease processing data they had already collected. They simply were not allowed to collect any new data.
The ethical review saw no issues despite the glaring red flags to so many of us Autistic folk – you know, those people the study is supposed to help! So, S10K have started collecting more data and now have the gaul to do an ‘autistic led’ consultation, some 18 months after the study started!
Lead consultants will get paid whilst those of us who laboured over this all last year – and made some pretty amazing resources for the community, as well as protesting – are being asked to join (unpaid).
The answer is an empathic ‘no.’
Payment or no payment – I am not being involved in a study which will contribute to well established eugenics studies.
The consultants involved, who are Autistic themselves, are either extremely naieve or do not particularly like Autistic people. I genuinely cannot think of another reason someone would sign up for this.
The team at S10K have been involved in autism research for over 30 years, they are seen as the top of the field and they have NO stake in this outside of their careers. Who is changing the minds or intentions of these people?
Boycott means resistance, it does not mean getting into bed with the enemy.