An Autistic Person’s Concerns About Spectrum 10k
Hello, my name is Emily. I’m 20 years old and I’m autistic. So far, the news coverage on Spectrum 10k has been dominated by non-autistic parents of autistic children and professionals, with little voice being given to autistic people themselves. Here is my round-up of what I think we know so far on Spectrum 10k, offering my perspective alongside other autistic people’s to allow our voices to be heard.
What is Spectrum 10k?
Spectrum 10k describes itself as the “largest study of autism in the UK”. It states that its aim is to “investigate factors that contribute to autism and related conditions to better understand wellbeing in autistic people.” It states that it opposes a cure or any form of eugenics.
This was followed by this video explaining it:
Who is Spectrum 10k being run by?
The study is being directed by Simon Baron-Cohen, the director of the Autism Research Centre at the University of Cambridge.
A co-principal investigator is Daniel Geschwind, a Professor of Human Genetics, Neurology and Psychiatry at the University of California, Los Angeles.
The rest of the team involved can be seen here.
What are my concerns?
The Genetic Element
The study begins by asking autistic people for a sample of their DNA, through giving a saliva swab.
My initial reaction to this was complete confusion at why anyone would want a sample of DNA unless you’re looking at the genetic causes for autism. And we know where that can lead. It can lead to pinpointing particular genes which cause autism. It can lead to pre-natal screening, cures and eugenics. We need to be very clear here that most autistic people, including non-speaking autistic people and learning-disabled autistic people do NOT want a cure for autism. You can see research showing the stats here for learning disabled autistic people not wanting a cure here. You can also read more about “curing” “severe” autistic people here.
What I found even more bizarre around the study though, is how looking at the genetic (and environmental…) causes of autism would in any way improve autistic people’s well-being, as their aim states.
Following on from these questions, Spectrum 10k released this video:
They also released this statement. All about understanding how genes cause autism, and how genes link with co-morbidities to autism. Why can’t we treat these co-morbidities separately, without opening a can of worms into causes of autism and possible treatments? The statement has been widely discussed, which you can read about in the quote tweets of the statement.
Autistic people have been very clear about what research would improve their well-being, time and time again. This research is led by autistic people and isn’t funded by organisations who have spent decades trying to cure us. It involves looking at unemployment, social inclusion, access to health-care, appropriate housing, treatments for co-morbidities like epilepsy, peer support, disability support in the community - the list goes on. Collecting our DNA is not how our lives are improved. Think what could be done with this money, that there sure seems to be a lot of judging by how vastly this is being promoted.
“We want to get 10,000 autistic people to take part...they’ll be sent a DNA kit, a saliva kit. They just spit in a tube and send it back to us, so we can look for the genetic causes of autism and the environmental ones.”
The People Involved
If you’re familiar with the autism sphere, you’ll know Simon Baron-Cohen, the Professor leading this study. He is well-known, and little trusted by many autistic people. This is partly because of his history. Two extremely problematic autism theories were penned by him - Theory of Mind, which you can read about here, and the Extreme Male Brain Theory, which you can read about here. These theories have been heavily criticised by both autistic people and researchers, and research arguing against them is extensive. Not only were these theories wrong, but they have caused a lot of harm to autistic people, in accessing diagnoses and support.
Additionally, Simon Baron-Cohen works alongside Autism Speaks in the AIMS-2 group, which aims to “develop effective treatments for aspects of autism for those who want them”. Hence, it is not only SBC’s history which means that naturally, the autistic community are wary.
Alongside SBC, working as the co-leader of this study is Daniel Geschwind. Information discovered today shows that he is associated with an oganisation called “Cure Autism Now”. Once this organisation was launched, Geschwind became very involved in studying genetics of autism. Maricela Alarcon, who worked alongside Geschwind, stated this:
“There’s no doubt in his mind that we’re going to find these genes, figure out what they do and get some sort of treatment out of it. ”
You can read more about Geschwind’s history and the terrifying quotes surrounding his beliefs about autism as a “complex disease” here.
Distinguishing between ‘worthy’ and ‘less worthy’ autistic people
There is a long-standing history dating back to the 1920’s, when autistic people were differentiated based on their worth. Those that were deemed helpful to society were labelled with Asperger’s, and those that were “low functioning” were diagnosed with Autism and many sent to die in Nazi camps. Temple Grandin was another who wanted “severe” autistic’s eradicated, but “mild” autistic’s saved and put to use.
Autism is now understood as a spectrum, low and high functioning labels are deemed harmful (because it has been seen as depriving ‘high functioning’ autistic’s of support, assuming ‘low functioning’ autistic’s lack autonomy, and ignoring the fact that each autistic person’s functioning levels vary day to day or hour by hour).
But, as Simon Baron-Cohen explained on BBC Breakfast yesterday morning, Spectrum 10k aims to “understand why do some autistic people have no language and others have good language, why do some have learning difficulties and others don't, why do some have good mental health and other's don't.” The study video distinguishes between those with “talents” and those with “learning difficulties”, implying that learning disabled autistic people do not have talents.
“Some of those differences actually translate into gifts or talents. So it’s a complex condition and this new study is trying to understand why do some autistic people have no language and others have good language, why do some have learning difficulties and others don’t, why do some have good mental health and other’s don’t. ”
All of this sounds eerily familiar. It sounds very much like the study wants to understand the genes behind autism with talents and autism with learning difficulties. It sounds to me like they want a genetic marker showing the differences. And all of this just as Asperger’s Syndrome can no longer be diagnosed after next year (though is not in the current DSM-5 anyway).
How will this improve autistic people’s well-being? How will this move us towards a world where ALL autistic people are accepted and valued, irrespective of their communication differences and ability to fit in with a neuro-typical society? How do we stop this ending up with the current situation we have with Down’s Syndrome, where so many of them are aborted as babies? How can we guarantee this won’t happen with autism?
Ignoring autistic people
Several autistic people have spoken up since the study was announced, disclosing that they were asked to promote this study. Several of them asked further questions and raised concerns, and did not have these followed up on. You can see an example of this here.
Furthermore, the media coverage of this has completely ignored autistic people, focusing on professionals and parents of autistic children. Why are we not granted a seat at the table? Nothing about us without us.
Implications for Future Research
When a participant signs up, it states “I agree that my anonymised data and DNA can be used in future studies, shared with academic collaborators and included on external research databases for future use”.
This is bad. This means that by participating in the study, you consent for your DNA to be used in any future study which you have no information on. Because even if this study is trustworthy and unharmful, 10,000 autistic people’s DNA will be on record for future studies. You have no idea if this will be used to develop pre-natal screening and cures. Spectrum 10k has said that our DNA will only be given to researchers who propose their study to a board, who will then either grant them access to it or deny them. We don’t know who will be on this board, and whose decision this will be. But fundamentally, by looking at genetic and environmental causes of autism, you are opening up research into cures. By having 10,000 autistic people’s DNA on record, there is always the possibility it will get into the wrong hands.
What Can We Do?
Unfortunately, we are very aware that there is little we can do to stop this. So, what can we do?
We can shout about it as loudly as we can. The #StopSpectrum10k is being used widely on twitter. You can add to it, retweet and boost content and read through it for more of an understanding.
You can email the research group by getting in contact here. You can voice your concerns and ask questions.
Autistic Science Person has created a list of what the main researchers on the project should do if they want to do right by autistic people. You can read it here. We can continue to call for this.
We can amplify autistic people’s voices on this. Those with platforms, especially those in news and media, can give platforms to autistic people, and not continually to professionals and parents of autistic children as has happened so far.
We can stand together. Look at the #ActuallyAutistic twitter hashtag to join in with the community if you’re autistic. If you’re not, you can use the #AskingAutistic’s hashtag to find out more.
Thank you for listening.
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