Since the second it was announced back in 2021 now, Spectrum 10K has been a controversial study to say the least, with many autistic people worried about the wider ramification if it went ahead. Many of us spoke out, started boycott campaigns and even protested over the study.
When reading the initial launch of the study, I had great concerns that their results could enable eugenics and ultimately give the key to erasing autistic people. They used language which projected an image of ‘good intentions’, but when you factor in the history of autism research and the backgrounds of the people involved, it told a very different story. For further details I’d recommend reading my previous post The Dangers of Spectrum 10K as there is no point in repeating what I’ve already written!
However, good news came yesterday on the 30th January 2025 when the study was closed. I was delighted by this news and shared my initial jubilation on social media. However, when you read the statement they put out, it isn’t all good news. I will post the whole statement below and highlight the parts that have me still concerned.
“Statement from the Spectrum 10K research team, 30th January 2025
Today we are publishing the Spectrum 10K consultation report and announcing the next steps for the project.
We know this announcement has been highly anticipated by many autistic people, and their families and carers, including those who took part in the consultation. We would like to thank everyone involved for their valuable contributions and patience.
The consultation was large scale and carried out by an independent company, with significant experience of public involvement. It was co-led by an autistic researcher and co-designed with autistic people to make sure we engaged a wide range of autistic people. We heard from over 500 autistic people and parents/carers of autistic children.
The research team have spent the time since the consultation ended exploring the practicalities of a redesign of the study to respond to the feedback that autistic people provided in the consultation. This involved conversations with the NHS Ethics Committee at the Health Research Authority, as well as our collaborators and our funder, Wellcome. This year we also experienced difficulties due to IT issues in the University, which slowed our progress.
During the time that Spectrum 10K has been paused, since September 2021, and since we first wrote the grant application 5 years ago, the science related to autism has advanced considerably. Whereas our intention had been to create a database with 10,000 DNA samples related to autism health research, there are now other very large health and genetic databases in the UK and internationally that have become available as a resource for autism health research. This means that we no longer need to collect new DNA samples as we can use existing health and genetic databases to better understand the health challenges faced by autistic people. We have therefore decided to close the Spectrum 10K project and find other ways to carry out research to better understand the physical and mental health of autistic people.
We will be proposing new research studies in response to the findings from the consultation, which found that many autistic people support research into co-occurring mental and physical health conditions. These studies will be further shaped by engagement with autistic people and possible topics include:
The impact on late diagnosis of ADHD and autism on physical and mental health
The health challenges faced by autistic women
Whether autistic people experience greater prevalence and severity of neuroimmune conditions, and – if so – why
These studies will use existing genetic and health registers and will not require new data collection. They all aim to build a stronger evidence base so that in the future this evidence will lead to better ways to promote good health and prevent and treat ill health in autistic people.
We are also committed to embedding the learnings from the rich and detailed feedback from the consultation into all of our autism research at the Autism Research Centre.
We would like to thank all the people that have contributed to and supported the Spectrum 10K study, including our autistic advisors, consultation participants, the University of Cambridge, the NHS Ethics Committee at the Health Research Authority, our sponsor, funder and collaborators.
For those people would like to be involved in other research studies to improve the physical and mental health of autistic people, more information can be found at: www.autismresearchcentre.net”
https://www.autismresearchcentre.com/projects/spectrum-10k
They are still planning to carry out genetic research, but are just borrowing data from another database that didn’t exist when this study was planned and launched. It does not address the concerns that if certain genetic information about autism was discovered, they would be able to safeguard against eugenics leading to autistic people being erased. Also I have questions about when it comes to the consent of people’s genetics in the new databases the Autism research centre at Cambridge are referring too. Would they also consent to being involved in future research by this team? Did they know when signing up for the original studies, that it could lead to their data being used in other studies? Still so many questions!
There’s no doubt that co-occurring conditions and neurodivergences impact on our health and quality of life, but how will genetic research address this and the inequalities we experience because of this? This still remains unclear.
Personally I will never get involved in genetic studies related to autism or studies involving the Spectrum 10K team because I don’t trust their intentions due to their track history.
Also studies found autistic people do want research addressing mental health and well-being, and genetic research was near the bottom of priorities among autistic people in the UK (Cage et al., 2024; Pellicano et al., 2014), which is where Spectrum 10K was based. So the real question is how many autistic people were asking for studies such as Spectrum 10K? When evidence suggests many of us have higher priorities for autism research.
To conclude, I am glad Spectrum 10K has been stopped and it is a victory, but this doesn’t mean this is the end in fighting against bad autism research.
If you enjoyed this post and like to support my writing, I would be forever grateful if you could buy me a coffee (or tea in my case).
You can also support the blog by purchasing my book ‘Young Autistic and ADHD: Moving into adulthood when you’re multiply neurodivergent’.
Previous Blog Posts On Spectrum 10K
The Dangers of Spectrum 10K – 24th August 2021
Why I Still Don’t Trust Spectrum 10K – 5th September 2021
Spectrum 10k paused. Good? Bad? Let’s break it down – 14the September 2021
References
Cage, E., Crompton, C. J., Dantas, S., Strachan, K., Birch, R., Robinson, M., Morgan-Appel, S., MacKenzie-Nash, C., Gallagher, A., & Botha, M. (2024). What are the autism research priorities of autistic adults in Scotland? Autism, 28(9), 2179-2190. https://doi.org/10.1177/13623613231222656
Pellicano E, Dinsmore A, Charman T. (2024) What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. Oct;18(7):756-70. doi:10.1177/1362361314529627.
Spectrum 10K (2025) ‘Statement from the Spectrum 10K research team, 30th January 2025’ Available at: https://www.autismresearchcentre.com/projects/spectrum-10k/ (Accessed 31th January 2025).
