Cambridge autism research paused following backlash
Simon Baron Cohen’s research on the diaries of a young girl who committed suicide has been paused
Cambridge’s Autism Research Centre has paused a new study by Professor Simon Baron-Cohen which was exploring the diaries of Caitlyn Scott-Lee, a young autistic girl who killed herself.
Critics saw the study as infantilising and dehumanising autistic individuals. Others highlighted the lack of privacy towards the young girl.
Professor Baron-Cohen told Varsity that following the media attention, the Autism Research Centre in Cambridge will no longer go ahead with this study.
Simon Baron-Cohen, a Professor in the Departments of Psychology and Psychiatry University of Cambridge and Fellow at Trinity College, is also the director of the Autism Research Centre (ARC) at Cambridge.
An article published by the Times (28/01) explained that the ARC was hoping to study the diaries of Caitlyn Scott-Lee in order to further understand why autistic individuals are at higher risk of killing themselves.
Professor Baron-Cohen was quoted as saying: “The extremely detailed diaries kept by Caitlyn Scott-Lee offered ‘a window into an autistic teenager’s very personal reflections, maybe cries for help’.”
Professor Baron-Cohen also told Varsity: “Reducing the risk of suicide by autistic people is one of the Autism Research Centre’s (ARC) top priority areas of research. We currently have a survey underway to ensure we hear from the largest number of autistic people who have experienced suicidal feelings about what they have tried, what has worked for them, and what they wish could be in place by way of support.”
However, the intent to study the diaries was met with backlash: many questioned the ethics behind such a study, seen as a breach of privacy for the young girl.
Others argued that the study was “part of a wider trend of dehumanisation and infantilisation of autistic individuals”.
This backlash put the research to a stop. Professor Baron-Cohen told Varsity: “The [Sunday Times] news article generated more public and media interest than Caitlyn’s family were comfortable with. As a result, in the interests of the family’s well being, it has been agreed that this study will no longer go ahead.”
This is not the first time that Professor Baron-Cohen has come under fire for his work. Last summer, Varsity reported on the backlash surrounding another study from Prof Baron-Cohen, Spectrum 10K. The study asked 10,000 autistic people and their families to contribute DNA samples for analysis.
This was met with controversy, with critics claiming the study “failed to properly consult the autism community about the goals of the research”. Some feared that this study pathologised autism and would push research in the direction of ‘curing’ autism.
The group Boycott Spectrum 10K stated that there is “‘historic mistrust’ of Simon Baron-Cohen within autistic advocacy and academic communities”.
The project was then paused in 2021 to “conduct a 2 year in-depth consultation with the autism community”.
Professor Baron-Cohen has also been criticised for his theory of mind, claiming that autistic people have a lack of socio-cognitive skills, which he describes as “one of the quintessential abilities that makes us human”.
The professor told Varsity: “My view is that autism involves both differences and disabilities and we are strong advocates of the neurodiversity framework. The differences can include excellent attention to and memory for detail and a preference for depth over breadth. The disabilities include difficulties in social relationships and communication. The benefit of focusing on the difficulties is that we can identify potential interventions and support for autistic people.”
“Many researchers have studied theory of mind in autistic people over the past 40 years and since then literally hundreds of independent studies internationally have confirmed that many autistic people struggle to imagine another person’s thoughts and feelings (theory of mind). We are delighted that much of this basic research has been developed into teaching materials to support autistic children and adults,” he said.
“The ARC is also explicit about our commitment to listening to and working with autistic people, and those who support them, on every study we conduct, to ensure that autism is not pathologised and that our research ultimately leads to positive outcomes for autistic people,” Prof Baron-Cohen concluded.
If you are affected by any issues raised in this article then in the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, you can call or text the National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
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