Update from the Spectrum 10K Team (4th of September 2021)
I am writing on behalf of the Spectrum 10K research team that I lead, to say that the recent concerns raised by some autistic people about this study have been heard. We are also very appreciative of the positive response from the thousands of autistic people and their families who have already agreed to join the study. This update is primarily a response to some of these concerns, which emphasises the need for continued dialogue between Spectrum 10K and the autistic community so that the goals and intentions of our research are clear.
Consulting the autistic community
We benefitted enormously during the design phase of the study from consultation with an advisory panel of autistic people and their families. We now want to co-design a wider consultation process with autistic people and their families to make sure that the views of the whole autistic community are gathered systematically, properly considered, and represented. Details about the consultation process will be announced on our website over the coming month.
In response to some of the concerns raised about the place of genetics in autism research, we would like to clarify our values as a research team. We see autism itself as an example of neurodiversity in the population. However, many autistic people have serious co-occurring health conditions such as epilepsy and severe gastrointestinal pain that may need treatment. And many have co-occurring disabilities such as dyslexia, speaking few or no words, and learning difficulties that need support.
We have called for and will continue to call for inclusion, acceptance, dignity and respect for autistic people, ensuring that their human rights are guaranteed. We do this at both national and international levels. See for example my keynote speech at the United Nations: https://www.youtube.com/watch?v=Pl8446OulLA
Spectrum 10K reflects these values. To reiterate, Spectrum 10K is not looking for a cure or eradication of autism. Spectrum 10K is anti-eugenics. To be precise, we do not work towards or advocate for termination of pregnancy in relation to a foetus who may later be diagnosed as autistic.
We are aware of and abhor the awful history of eugenics, including how science has been used to justify many atrocities globally.
Following the wider consultation with the autistic community, we will co-design a data-sharing policy with autistic people and their families. As a part of this, we will set up a data sharing committee which will include autistic people and their families, to evaluate every request by researchers across the world asking for access to Spectrum 10K data. Any request that could violate our stated values above would be refused. This is in line with international best practice. We will provide further details of the data sharing policy after the wider consultation.
The aim of Spectrum 10K
We believe Spectrum 10K can lead to significant improvements in the health and wellbeing of autistic people worldwide. This is because some of the genes linked to autism can also cause chronic physical health conditions such as severe gastrointestinal pain, epilepsy, extreme hypermobility leading to limb dislocation, and extreme painful sensory overload.
So, the key aim of Spectrum 10K is to understand the genetics of both autism and co-occurring chronic health conditions. This can help future research identify targeted treatments for and management of these co-occurring conditions in autistic people. Reducing physical pain and emotional distress associated with these conditions can improve wellbeing.
Genetics research is only one component of Spectrum 10K. Spectrum 10K also includes research into non-genetic factors contributing to co-occurring health conditions including poor mental health. For example, we are also asking participants about their social, educational, and occupational circumstances, camouflaging, areas of vulnerability, and quality of life.
At the Autism Research Centre in Cambridge University, we continue to conduct research on areas related to a range of topics, including mental and physical health, education, employment, stigma, poverty and homelessness, suicidality and mortality, and social policy. One recent example is available here: https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2162
Thank you to the many autistic people and their families who have already signed up to be part of this study. And thank you to the many autistic people who have voiced their concerns and provided feedback. We will continue to listen to and engage with the autistic community and we will provide more updates over the coming weeks.