Spectrum 10K

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

Further information