The Spectrum10k study was announced Tuesday the 24th of August 2021. The statement written by a group of which I am a member and other amazing autistic Advocates that I am honoured to know.
The statement and link to the letter to add your name is here-
There have been so many good blogs, like :
The autistic Advocate:
Autistic Science Person:
So much good writing. Please do take some time to look at them all. I’ll include a list at the end.
The collective statement as well as the writing I’ve included have detailed why the study is so problematic. It remains problematic at the time of writing this regardless of the statement by Spectrum10k pausing the study.
Because they state the study is only paused, the issues raised in the Boycott Spectrum10k remain. Notice it is Simon Baron Cohen, who is the principal researcher of Spectrum 10k, whom we have issue with regarding suitability, background research and affiliations, ethical issues, conflict of interest and lack of transparency is who replied. The social media campaign that we created and delivered across all of the platforms resulted in the number of signatures we received. At the time of writing this three thousand and two hundred and fifty nine people signed along with us.
Spectrum10k speak of a “wider consultation”, giving no details with whom, and as of the timing of writing this, we, the collective that is Boycott Spectrum10k have not been contacted in any way. It’s not like they do not know we exist with our contact details readily available online and on most social media platforms. 3259 signatures. That is an impact that Spectrum10k would have noticed and yet we wait for them to contact any of us directly. We can only conclude that they are ignoring us and wonder why.
For me, personally, the fact that the collective hasn’t been contacted is indicative of the complete disregard of autistic people by Spectrum10k. The disregard for the very people they want as research. As an Neurodivergent/Autistic parent of two Neurodivergent now adult children, it is this continual disregard of autistic people from the very beginning idea of creating the study to the implementation of it, that concerns and upsets me. It is just another example of how society treats Autistic people. I don’t want a future where my children and their possible children, or any future child is included in a data base of their DNA that can be used by any organisation in the future for any means? Again, getting that through ethics continues to baffle me.
The disconnect of the researchers to the human beings they are studying is a dark truth of academic research that needs to be addressed. Ethic committees need to take a hard look at their guidelines and ask themselves how can they assure this dark truth is acknowledged and procedures put in place to ensure it does not happen. Because given the latest documentation provided by Liam O’Dell . See here-
With one health official stating:
“To be honest this is a little bit of a messy [sic] of an application. To me they are creating a registry/DNA bank of a vulnerable group ‐ not sure it should have gone through as basic science.”
So how did it “get through”? What made these researchers think that Autistic people would be okay with it? Why was it ok with the Ethics committee after stating it was a mess, to allowing it in it’s current state? Will they ever address the question of why and how DNA samples will “improve the lives” of autistic people? Because I am positive if the researchers actually asked the autistic community, we would have a wealth of ideas of how to improve our lives. One of the first suggestions would be to stop excluding us.
“Nothing about us without us”https://kar.kent.ac.uk/62812/
I recently watched a documentary called “Hating Peter Tatchell”. The constant struggle, being constantly dismissed. beaten, killed and even arrested for just wanting to live their lives and be accepted for who they truly are. The humour displayed in their protests as well as the lengths that their protest went to with OutRage to be heard. To me, the similarities between the Autistic Community’s treatment, fight for rights and to have our voices heard to the LGBTQAI+ Community same fight and treatment is striking. Just as in the program, Peter states the fight for LGBTQAI+ Rights was similar to the Black Civil Rights and Suffragettes. The intersectionality with the LGBTQAI+ and Black Community is already there with our Autistic community.
I just kept thinking while watching the documentary that we, the Autistic community if we united as many as we can as we really could be doing amazing things. Maybe its time we were a bit “louder” in our call for our rights? It’s just a thought….
As promised- some links.