The Spectrum 10K research team have put their study on hold in light of the feedback they've received from autistic people, their families and charities. This means pausing recruitment and not analysing data already collected. They have also promised a wider consultation, co-designed with autistic people and their families, and will announce details of this on their website in the coming months.
It’s right that they have paused the study and committed to a wider consultation. This must address the serious concerns and questions raised by many autistic people, and some researchers, before the study team decide what do next and the changes to make.
We will update this page when the consultation launches.
A study called Spectrum 10K was launched last week by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA). Its aim is to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families."
Research to improve support for autistic people is vital. However, we are not involved in this project as an organisation and declined to participate. We know it is proving divisive and that many autistic people and some researchers have serious concerns and questions, particularly about the nature of the consent, the collection of DNA samples and how this could be used in the future.
We are writing to the Spectrum 10K research team to raise these important concerns. We note that Spectrum 10K have recognised that there are concerns and promised to provide more information on their website in the future.
We strongly encourage autistic people and parents considering taking part to look into this study carefully, and consider the potential benefits and harms, before deciding whether or not to participate.
Research is vital but…
We want more research into autism, focused on how best to support autistic children and adults with the biggest challenges they face. For many years, autism was mis-characterised as a disease or illness, and something to be cured. It is not. Despite much better understanding today, and the efforts of autistic people themselves, this attitude has not disappeared entirely. Society and researchers still have a long way to go to fully earn the trust of all autistic people.
Researchers must make sure autistic people are meaningfully involved at every stage of the research process, respond to their feedback and make sure that all involved know exactly how their input will be used.
What to do if you have questions or are concerned about Spectrum10K