What the Spectrum 10K Consultation Taught Us

As the Spectrum 10K study closes, study lead Professor Sir Simon Baron-Cohen
reflects on the findings of a rigorous and extensive two-year consultation process
with the autism community, and what this means for autism research.

What was the Spectrum 10K study and why was it set up?
“Stepping back for a moment, our research at the Autism Research Centre at the University of Cambridge aims to better understand autism, and the physical and mental health challenges that autistic people face.

With this in mind, we launched Spectrum 10K in 2021 – now over 3 years ago – to build a new resource to support research into autism and health. This would have involved collecting both genetic and environmental data.”

What happened after the Spectrum 10K study launched?
“When the study launched, some people in the autism community told us about concerns they had about the research, particularly around the use of genetics. So, we paused the study to enable a comprehensive independent consultation to take place.

After the consultation had finished, our team spent time understanding the findings and deliberating on the best way forward. What weighed heavily on our minds was that in the 3 years that have elapsed since the study originally launched, autism research has advanced considerably and what became clear is that today there is less of a need for a new genetic resource. That’s because we can now conduct research into autism and health in other ways, as there are now bigger genetic and health databases.

Whilst our team felt it would be possible to re-launch Spectrum 10K taking into account the key recommendations that came out of the consultation, we also felt it would be wrong to forge ahead with Spectrum 10K when we can now use these newer resources to better understand autism and health.

For this reason, we have decided to close Spectrum 10K as a project. We will continue to undertake research into autism and health, from both the genetic and environmental perspectives, and this will benefit from the findings of the consultation.”

Why do you want to conduct further research on autism and health?
“We already know, from our past research and that of others, that autistic people have worse health outcomes and, sadly, on average they have lower life expectancy. The current estimate is that autistic people die on average 18 years younger than non-autistic people. At the moment we still don’t know much about the factors that cause these health inequalities.

Most of the things we know about health, and how to treat mental and physical health conditions, is the result of research studies predominantly of non-autistic people. This means we know less about why autistic people are more likely to experience poorer health. For this reason, we need more research to understand why autistic people on average have worse health outcomes than non-autistic people. This inequality is unacceptable and as researchers we need to provide the evidence base to improve health for future generations.”

Tell us about the consultation
“We paused Spectrum 10K to get a better understanding of why some autistic people had concerns about the project and therefore decided to hold an independent consultation. We set out to hear a wide range of views, including hearing from autistic people who were opposed to Spectrum 10K and those who supported it.

The first step for us was to get input from autistic people and their families and carers from the outset, to design the consultation itself. We also wanted to create a safe space for autistic people and their families and carers to talk, so we employed an independent and experienced company to run the consultation. The consultation was co-led by an autistic researcher and co-designed with autistic people. It was important that this was a thoughtful and thorough consultation, that was both broad, in reaching many groups within the autism community, and deep, in drilling into the detail. The process took over two years of listening to autistic people, their parents and carers, to understand the range of views about both this study and about autism research more broadly.”

What did the consultation find?
“It showed there is a very wide range of views within the autism community about the Spectrum 10K project. Far from the autism community speaking with a single voice, what we found were very diverse views. And that’s exactly what one would expect of any community.

We were pleased to discover that some autistic people were strongly supportive of autism research and wanted the project to go ahead. But there were also autistic people who really did not want the study to go ahead.

We heard from some autistic people who feared we had another motive for conducting the project which they believed wasn’t about improving the lives of autistic people. For me and for my team, it was important to listen to this group of autistic people and their concerns to explore why some autistic people held these beliefs. We heard that some autistic people believed we had a hidden agenda, despite the fact this was not our intention and even though we have been very clear about this.

This was sad to hear, because at the Autism Research Centre, our research aims to improve the lives of autistic people – and very certainly we never want to do any harm.

I would never participate in research that could ‘treat autism’, as autism is core to who someone is as a person. Any attempt to do this would be highly unethical and against my values and those of the Autism Research Centre in Cambridge.

I have long been a vocal advocate of the important role that autistic people play, and have always played, to enrich society. This is something I have written about most recently in my book, The Pattern Seekers, where I discuss how autistic people have driven human invention, something that has been important in the arts as well as in science. I make the case that we need to do much more to support autistic people to thrive.

I also recognise that many autistic people experience disabilities and ill health. Everyone is equally important in our society, regardless of their abilities, and I feel strongly that we need to do more to support all autistic people – including those with learning disability and significant communications difficulties – to live their fullest and happiest lives.

The consultation demonstrated there was a considerable mismatch between our intentions and views about autism, and what some autistic people thought our intentions and views were. At the heart of this is a misunderstanding, and this has led my team and I to reflect on what we can do differently to help rebuild trust.

We believe that to build trust the key is to be transparent about everything, including everything we heard in the consultation, which is why we have taken the decision to publish the consultation report in full on our website. The findings will continue to inform our research, and we hope that it will inform wider autism research. We will continue to engage with the autism community and be open and clear about our research and what we are hoping to achieve.”

Why did it take so long to announce the next steps, after the consultation finished?
“We needed time to absorb what we had heard from the autism community. Although there were a diverse range of views, we could see there were ways that we could amend the Spectrum 10K project to address the concerns that some autistic people had. So, we began exploring a redesign of the study. For example, we looked at how we could make it optional to provide a DNA sample, how to strengthen the control over who can access the data and put the decision of data access into the hands of autistic people, and to open the study to autistic people without a formal diagnosis. This process involved conversations with the NHS Ethics Committee at the Health Research Authority, and with our collaborators and our funder.

The whole process of running an independent consultation, considering the findings and exploring the feasibility of different ways to adapt the study took over 3 years. We were planning to relaunch the study in 2024 but we realised that over this time it had become apparent there was less scientific need for the Spectrum 10K project because, as I said earlier, today there are other larger genetic and health databases
and registers through which to study autism and health.”

How did you ensure a range of people engaged with the consultation process?
“The consultation was designed to be balanced and to ensure everyone could be heard. To do this in the most impartial way, we brought in an independent and experienced third party to facilitate the consultation. They are called Hopkins van Mill, and they are an agency with a strong track record in running consultations in biomedical ethics, particularly where there are strong differences in opinion or misunderstandings. In addition, the consultation was co-led by an autistic researcher, and she helped the independent agency work with other autistic people to design the consultation from the beginning.

We took this approach so we could hear from the widest range of autistic people – diverse in terms of age, gender, ethnicity, co-occurring conditions and disabilities – as well as parents and carers of autistic children and young people. This process also allowed us to hear from autistic people and parents of autistic people who have very different opinions, including from people who were very supportive, and would rather the study had continued, to those who wanted more information before making up their minds, to those who really didn’t want the study to go ahead. All these perspectives were vital for us to hear. Having an independent agency as a co-lead, and an autistic co-lead, enabled us to create an environment where autistic people who were initially mistrustful of our intentions could engage to share their views in a very open way.

I am very pleased and proud that we succeeded in creating a forum where many autistic people and their families and carers could meet the research team and share their views. For many people, having the chance to meet the team, to get to know them as people and to hear their views, beliefs, values and intentions first-hand, and having the chance to ask any question they like, knowing it was a safe place for open dialogue, reduced the mistrust. It allowed dialogue based on reality, not imagined fears.

In addition, and importantly, the consultation was designed to hear the views of autistic people with a range of communication preferences. As well as written surveys, focus groups and webinars were held, where people could contribute with their cameras on or off, or through spoken or written communication. The consultation also included ‘easy-read’ versions of documents, since some autistic people have learning disabilities or language disabilities or are minimally verbal. We wanted to hear from as many groups as possible within the autism community. Overall, we heard from over 500 autistic people and their parents and carers.

We would like to thank everyone who took part in the consultation for taking the time to share their thoughts and opinions with us.

We are very grateful to our funder, Wellcome, as well as the NHS Ethics Committee at the Health Research Authority, Cambridge University and our sponsor, for supporting us so generously with their time and their funding to hold this unique consultation, from which everyone can learn.

What would you have done differently the first time Spectrum 10K launched, with hindsight?
“One of the most important things we learnt is that our initial consultation about this study was not large enough. In 2021 we consulted an advisory group of a dozen autistic people and their family members about the study design. At the time this number was standard community engagement practice. What we now know is that we needed to speak to a much larger group of autistic people to really understand the wide range of views. This is particularly important for large studies like Spectrum 10K that involve sensitive data such as genetic samples.

When you consult widely enough, you hear the full range of views – the critical voices as well as those who are supportive. The critical voices can give very valuable insight into the potential concerns surrounding a study and how you can improve study design. We appreciate everyone who took part in the consultation, and I want to thank them personally for taking the time to share their views.”

What do you hope the consultation will mean for other autism studies?
“I hope our experiences will help define a new culture of how to engage with communities around autism research, and I hope that the field of autism research will benefit more widely from the principle of co-design at every stage.

“The consultation has led us, at the Autism Research Centre in Cambridge University, to commit to proportionate and feasible community engagement across all of our research projects. For a big new study involving genetics, for example, you might need to engage with many people to hear the full range of views including those who are critical that could be important to shape the study. We are committed to the principle that autistic people should shape projects meaningfully from an early point, and that they should have the opportunity to stay involved right through the project. As I said earlier, the consultation for Spectrum 10K was co-designed by autistic people and co-led by an autistic researcher. I think this is a very important principle for what we aspire to achieve in terms of engagement with autistic people going forward. I hope that this project leads to a new culture around the way we do autism research, with co-design at its heart.”

Now you have decided to close Spectrum 10K, what would you say to people who would have liked to take part in it?
“In the consultation we heard from many autistic people and their families and carers who wanted this project to go ahead. We know that it may be disappointing for some autistic people that this project will not be continuing. We want to reassure those who would like to take part in autism and health research that there are still many opportunities to do so, both at the Autism Research Centre in Cambridge University, and elsewhere.”

What would you say to other autism researchers who want to do high quality engagement with autistic people?
“I would say start engaging with autistic people from an early stage. It’s important to work with autistic people to design any engagement process so you can engage with the widest range of voices. It’s also worth making sure that the grant supporting the research has the budget needed to do this. My main take-home message is that engaging with autistic people will shape research for the better and, where possible, can help frame the research in a way that best responds to the needs of autistic people.”