CW: suicide, ableism, Simon Baron-Cohen
Another study suggested by Cambridge’s Autism Research Centre (ARC) has been paused. The new study by Professor Simon Baron-Cohen planned to read and pick apart the diaries of CSL*, a young Autistic girl who killed herself.
The intention was that researchers could use her diaries to improve their understanding of why so many Autistic people end their lives. This study was meant to run alongside other work around this area at the ARC.
Baron-Cohen suggested that CSL’s diaries would give a ‘window into an Autistic teenager’s very personal reflections, maybe cries for help’.
This just feels like a complete disregard for this young person’s privacy and autonomy. And using the grief of a family to violate the inner thoughts of a young girl. This completely smacks of ableism, misogyny and ageism.
It was not a memoir she was writing, it was her pain and her anguish.
The thought that Baron-Cohen and the ARC would put a Autistic and / or autism family through this retraumatising is beyond disgusting.
Since the media attention at the end of January (when the study was announced) the family have asked for the study to stop. I’m very glad that they’ve taken back control of their child’s narrative and privacy.
We know this isn’t the first, and probably won’t be the last, awful study Baron-Cohen and the wider ARC will be involved with.The Spectrum 10K study is still on it’s retroactive consultation period. This is only happening due to the amazing activist work of Boycott Spectrum 10K and other groups and individuals. We saw the poor ethical considerations, the lack of Autistic people in the research team let alone leadership, and spending millions on work which won’t make our lives better.
Not to mention his work on extreme male brain theory which posits all men as unempathetic and all Autistic people as ‘hyper masculine.’
Or the theory of mind, where we are considered to not understand the thoughts and feelings of others whilst studies on the opposite doesn’t seem to happen?
I try not to keep up with the ARC too much as I know whatever they’re doing will anger, frustrate and upset me. They just do not care about Autistic people and those who love and support us.
Update, May 2024: After the inquest into her death, several organisations and individuals have written an open letter to the government calling for urgent action to be taken with regards to the rates of Autistic suicide. Find out more here.
More on Spectrum 10K:
Spectrum 10k: The Boycott Continues
Spectrum 10k: Unpaused and still unethical
*I’ve left out this young lady’s name as I thought it best.