Updated: Sep 17, 2021
Update - SUCCESS! - Simon Baron-Cohen pauses the Spectrum 10k study:
An apology and an update from Simon Baron-Cohen:
'I am writing on behalf of the Spectrum10K research team, including the co-lead researchers, to provide a further update regarding the study. From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.
Pausing whilst we listen
We have decided to pause any further recruitment of new participants into Spectrum10K. We will also not analyse any data already collected in Spectrum10K. This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum10K. This may take several months. Details of the consultation will be announced on our website.
The University of Cambridge, the Wellcome Trust, and the Cambridgeshire & Peterborough NHS Foundation Trust (co-sponsor of the study) are all fully supportive of us pausing Spectrum10K to undertake this listening. They recognise the study’s scientific importance and that there has been no breach in the protocol as approved by the NHS research ethics committees. This pause reflects that we want to listen to and address concerns.'
Simon Baron-Cohen on behalf of the Spectrum10K team
Our original blog post:
Many people will have heard about the new Spectrum 10k study.
Arrive Therapy's Kathy Carter has been asked about her stance, and, in line with other neurodivergent and autistic advocates, she has grave concerns.
As Robert Chapman Ph.D. states on psychologytoday.com (in response to the S10k team’s responding document explaining their reasoning for focusing on DNA): ‘To many, this core aim of the project will be fairly indistinguishable from eugenics: It is just that the focus has been turned to eliminating intersecting neurodivergence instead of autism itself.’
If you are interested in taking part in Spectrum 10k for yourself as an autistic person or an autistic family member, we suggest delving into the info provided by the Spectrum 10k study, including its focus on DNA, and reading some of the autistic community’s concerns: