Within minutes of the spectrum 10K announcements, it’s has been an emotional rollercoaster for many of us, with many twists and turns in the last few weeks. Like many other autistic, I’m exhausted. Also, a lot has been going on in my everyday life too. I’ve increased my work hours in one role and gained a promotion in another (I have two part-time roles alongside my freelance/advocacy work) and having to get a new car (long story, but if you follow me on Twitter, you’ll have some idea of the car issues I’ve been having recently). So I’ve been close to burnout these last few weeks with the dramas of Spectrum 10K on top of everything else. I intended to write this over the weekend after spectrum 10k announced they were pausing their research on Friday evening, but I needed a rest, it’s a new week, and I have some energy. So let’s break this down.
The pause
On Friday evening, spectrum 10k released a statement saying the following.
https://spectrum10k.org/statement-10th-september/
Some campaigning against spectrum 10K declared victory on Twitter, while others viewed the move as performative and felt that nothing would change and Spectrum 10k will just push the study back for several months. Personally, I was happy to see that the study is being paused, but it’s far from the end of this. I see it as opponents of Spectrum 10K winning the first battle, certainly not the war. They still have full intentions for this study to go ahead, and I will keep fighting it until it stops. There are too many issues that I’ve highlighted in my previous post that I believe it’s beyond reform and making adjustments. Mainly the lead researchers career history aligning with eugenics being used against autistic people, the misuse of genetic data of the organisations involved, the implications of the study’s results enabling genetic testing for autism and how genetic data could be used in future studies, along with several consent issues too.
Spectrum 10K acknowledged
“From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.”
https://spectrum10k.org/statement-10th-september/
As I’ve mentioned before, I have to ask why wider consultation wasn’t sought to start with? as I feel this study would look extremely different indeed. In the last few years, many guides have been published in journals on how researchers can create authentic co-production with autistic people. I have to ask why the research team did not consider this information available until now?
As Dr Monique Botha said during the Boycott Spectrum 10K live stream, the time for co-production has long passed for it to be authentic. Co-production starts at the beginning of the study during the research design, not after recruitment has started.
I would also recommend watching the entire live stream by Boycott Spectrum 10K as it covers the fundamental issues of the research in far more depth than I can in several blog posts.
They also apologised for any stress they caused. That’s all well and good, but it needs to be abandoned entirely for my stress around spectrum 10k to be resolved. I’m sure that some of my fellow autistics feel the same way too.
But we will still collect samples.
Although the study is on pause, they say in their latest statement.
https://spectrum10k.org/statement-10th-september/
So it’s not a full pause as they are still collecting samples and signing people up. They are just not sending out saliva kits for now, and pinky promise they will not do genetic analysis yet. I feel pause is perhaps too strong of a word to describe what is happening, as some parts of the research are still continuing during the consultation process.
Also, Simon was on Radio 4 on Monday morning promoting the study after being questioned about the pause and autistic people’s concerns. If it was a genuine pause, then surely he should only be stating publicly that there is a pause while the consultation process is ongoing? And not talking about what he feels are the benefits (which conflicts with many autistic people’s views). Click here to listen to the video from 2.40-2.45.
The Health Research Authority
The health research authority granted Spectrum 10k ethical approval have come out to say.
“We have received both complaints about the HRA’s approval of the Spectrum 10K study and concerns about the research itself and we are now working to understand all aspects which are within the remit of the organisation. We commit to a transparent investigation and will publish our findings on our website, following the same process as other complaints and concerns.
Last week the Spectrum 10K team announced that they had voluntarily paused the study so that they could consider concerns raised with them. This does not change our process for handling the concerns raised with us, but recognises that participants’ rights and wellbeing should always be at the heart of a research study. We commit to working closely with the study team in the coming weeks.”
https://www.hra.nhs.uk/about-us/news-updates/spectrum-10k-how-hra-manages-your-feedback/
I’ll be interested to see the outcomes of this investigation, but I hope that they don’t try and cover their own backs to save face with their conclusions. I’d like to know if they are indepedant and netural parities over seeing this investigation?
The lack of transparency continues.
Over the last few days, I’ve also been made aware of a few more interesting pieces of information by Autistic Science Person, so thank you, Ira.
The funding granted to Simon Baron-Cohen for Spectrum 10K was titled “Common Variant Genetics of Autism and Autistic Traits (GWAS) Consortium”. Although it’s just a title, there is no mention of autistic well-being, co-existing conditions, or environmental factors like the fancy Spectrum 10k websites states. This needs clarification by both the Wellcome Trust, who awarded this grant and the Spectrum 10K research team, as there is an inconsistent message about the true aims of this research project.
Spectrum 10K and some of their key researchers (Simon Baron-Cohen and Daniel Geschwind) are authors of a pre-printed study investigating “Genetic correlates of phenotypic heterogeneity in autism”, As I have no experience in studying genetics, I do not fully understand the paper. Still, thankfully Dr Sue Fletcher-Watson has written a lay summary which is helpful!
They have already started to investigate the genetic elements of autism and state they are motivated to “Deeper phenotypic characterisation will be critical to determining how the complex underlying genetics shapes cognition, behaviour, and co- occurring conditions in autism.” They want our DNA to understand our behaviour. Why? Why is this the better option than engaging with autistic people? Why is there a need to look at our biology to determine this? And are they interested in the genetics of autism or co-existing conditions? I don’t see how one study can focus on both, and we’ve been getting mixed messages from the Spectrum 10K team about what they are actually investigating.
It’s all just a mess.
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Sarah Boon 