Autistics being dehumanised is nothing new. In fact, most information out there about autism and the history of autism research is full of dehumanisation. However, this week has shown us that being dehumanised for being autistic may not necessarily end when we take our last breath.
A few days ago, controversial autism researcher Simon Baron-Cohen announced his latest study where he is analysing the private diaries of a 16-year-old autistic girl who died by suicide. Baron Cohen shares on Twitter.
Autistic suicide is indeed a problem and a major one that needs more research. However, going through the most private and intimate thoughts of somebody who can no longer consent, as part of a study, is deeply unethical. From the information that’s been made publicly available there are no indicators that she consented to her diaries to be used in such a way prior to her death.
As many autistics have pointed out online since the study’s announcement, there are many autistics, who are alive, experienced suicidal thoughts, and who can consent to share their lived experiences if they wish.
We do not have to invade the dead’s privacy to get the answers researchers seek to answer. There are far more ethical ways of doing this.
Also, I can’t help thinking about the potential misogyny that is at play here. As we should really be asking what motivation a man in his 60s has about scientifically analysing a teenage girl’s diary?
A question we have to ask ourselves is, if this girl was neurotypical and died by suicide, would they be doing this? Or would they think it’s too far to go through such personal belongings of an individual who wasn’t autistic? I suspect researchers would be less likely or willing to do this. Or at least there may have been more reservations for somebody who was neurotypical and whose humanity is more likely to be respected.
I have no doubt that the family members are suffering unbearable pain, and are probably wanting to seek answers. I want to make it clear I am not criticising the family.
My criticism is for autism researchers’ lack of ethics for autistic people, including after we have passed. I also have issues with not preserving the anonymity of the people you are using in your studies (particularly for those who cannot consent) and Encouraging ‘autistic children to send in their own diaries’ when most children will not have the maturity to understand the consequences or impact of sharing such information.
Being autistic myself, I find this really unsettling and it has made me start questioning if researchers would attempt to do something like this to me after I’m gone, which has only increased my anxiety.
Autistic being dehumanised by researchers is a tale as old as time but doing it to us, even after we have gone is a new low.
*Just after finishing writing the draft of this blog post, it was reported that consent has been withdrawn by the girl’s mother and the study has ended. However, I still felt it was important to share this post, and have a record that autism researchers thought it was okay in the first place to do this. Hopefully prevent further studies that are so invasive of autistic people’s privacy. After all, there is still a long way to go until people are no longer dehumanised for being autistic.
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