Simon Baron-Cohen’s Spectrum10K autism research study dropped about 3 weeks ago in a wave of publicity and a bombshell of controversy.
If you aren’t sure what the Spectrum10K project is… Well, have you been under a rock?
I’m actually not going to link to it because I don’t want to direct traffic to their website, or be responsible for people signing up to it. However there are some great articles linked further down this one which explain things well.
Basically it’s a study led by Simon Baron-Cohen and it’s been funded to the tune of £3million to map the DNA of 10 thousand Autistic people.
Apparently it’s necessary to discover the genes involved in co-occurring conditions, that have no real evidence of genetic causes specific to Autistic people.
Such as anxiety.
It handily ignores that many co-occurring conditions, like anxiety, are rooted in developmental trauma, stigma and other external societal factors. Also, despite co-occurring conditions being by nature, things that can occur in anyone, Autistic or not, they are only looking at Autistic people. They aren’t working with researchers already working independently in fields looking at those conditions.
To do this they need access to your DNA and full medical records.
Oh and they will pass all this data in the future onto un-named people of their choosing.
At an unspecified time, with unspecified ends…
But it’s ok, because we can trust them to choose un-named people who aren’t going to use DNA irresponsibly to develop things like… Oooh, I don’t know… Screeners.
Screeners that might be used to separate those who are more likely to have NT centred Societally acceptable and valuable skills, from those who don’t.
Back when Spectrum10K launched, I was asked by the North East Autism Society to make a statement flagging my initial (and many) concerns.
The North East Autism Society are one of the organisations I consult for, working with them to improve their services, processes and messaging. They decided to use it as their position statement which was posted on Twitter and Facebook. This is my statement from then:
“I’ll start by saying I have no issue with genetic research in general.
For example there is a great need for genetic research into epilepsy and other co-occurring conditions which can be life limiting for many of us who are autistic. My issue stems from how that genetic research is then used.
Personally, I have absolutely zero faith in the people that are running this research and their goals. This might sound harsh – and I am sure some of the researchers are coming from a place of good intentions, but what happens when this research is published?
Who then picks it up and what motives do they have? It’s a massive ethical issue.
I’m also worried about the people who interact with these types of studies as they tend to be parents of autistic children, who may hand over their DNA without thinking of the future consequences, or newly diagnosed people, or even long diagnosed people, who may be unaware of the context around this research or those behind it.
There is such a history of autistic people being misled and dehumanised by autism research, that is often difficult to find trust – particularly when those leading this research are responsible for the creation and compounding of many of the myths which have caused and continue to cause great harm to the autistic community and by default our families.
Many, many questions need to be answered and assurances cast in stone.
That’s been the cumulative amount of my public work.
Since making that initial statement, I’ve struggled to write anything about Spectrum10K beyond blasting out posts in short bursts on Twitter, until this of course – though I would like to point out this is the second time I’ve written this article, as WordPress decided to destroy my previous attempt that was three days in the making…
I’ve been glaringly obvious in my absence on Facebook too (though for tumbleweeds to appear on my Facebook page is not unusual); even taking my eye off the ball of the groups I co-run, particularly the Autism Late Diagnosis Education and Support group, where there have been lots of questions about Spectrum10K.
This has been partly due to some personal circumstances, but also because of the background work I’ve been involved in about the study.
Keep in Touch with Kieran, The Autistic Advocate
Behind the scenes there has been a flurry of activity. Once the Spectrum10K study was announced, very quickly a group of us – Advocates, Parents, Professionals and Academics, who were already discussing working together on a completely different project; bounced back from the shock and initial trauma (believe me, there was a lot of shock and trauma) rallied and produced a 28 page document outlining our grave concerns with the Spectrum10k project and asking a series of fundamental questions that need answers.
That document is an open letter which can be signed by anyone who agrees with it and will be/has been sent to various bodies connected with the project and the oversight organisations for the research. We’ve also included a plain text version of the document and a simpler to read breakdown.
I really do urge anyone reading this who hasn’t, to sign it if you agree with the concerns raised. We’ve tried to be very clear about our reasons, citing evidential reasons in the form of research, articles and concerns expressed by Autistic people, Professionals and Academics.
To date the letter has been signed by over 2000 people, including a number of high profile and well-respected Professionals, Academics and Advocates, Autistic or not.
The main document which you can sign is available here:
Spectrum10K sign-able open letter
The plain text version of that document can be found here:
Spectrum10K open letter plain text version
A summary of the main document can be found here:
Spectrum10K open letter summary.
There is also a template letter that with blanks that can be filled in which can be sent to your local MP:
I would ask as many people who are able to sign and share it, whether you are Autistic or not, if you agree with it. They want ten thousand samples of Autistic DNA, I’d love to see ten thousand signatures questioning why.
There has been so much activity on Social Media that it has almost become impossible to track. But much has been written and discussed about Spectrum10K via the following hashtags: #StopSpecrum10k and #Spectrum10K on all platforms.
If you would like some different perspectives on the study and some different ideas about what it might mean, there are a number of excellent articles available
Thinking person’s guide to Autism
The Autistic Community’s Concerns Regarding Spectrum 10K and Eugenics Are Valid (written by a number of respected Autism researchers)
Very Health
Spectrum 10k: Why Some Autistic People Are Hesitant About the New Autism Study
Neuroclastic
Spectrum 10k: The Fallacy of Genetic Autism Studies
Emergent divergence
Apparently Autism needs preventing?
An open letter to parents of Autistic children regarding Spectrum 10k
Sarah Boon
Why I still don’t trust Spectrum 10K
Autistic professor
Authentically Emily
An Autistic Person’s Concerns About Spectrum 10k
There’s been so much good stuff written on Spectrum10K that I am unsure what I can add to the conversation in talking about it.
I could write about the big announcement was made yesterday (10th September 2021) that the project is being paused…
An apology and an update
I am writing on behalf of the Spectrum 10K research team, including the co-lead researchers, to provide a further update regarding the study. 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.
Pausing whilst we listen
We have decided to pause any further recruitment of new participants into Spectrum 10K. We will also not analyse any data already collected in Spectrum 10K. This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K. This may take several months. Details of the consultation will be announced on our website.
Anyone who wishes to register their interest in Spectrum 10K during the pause will be able to do so here. We will not send out any new saliva kits until the consultation is complete. If you have received a saliva kit you can send us a saliva sample that we will store securely (without any genetic analysis) until the consultation is complete.
The University of Cambridge, the Wellcome Trust, and the Cambridgeshire & Peterborough NHS Foundation Trust (co-sponsor of the study) are all fully supportive of us pausing Spectrum 10K to undertake this listening. They recognise the study’s scientific importance and that there has been no breach in the protocol as approved by the NHS research ethics committees. This pause reflects that we want to listen to and address concerns.
Thank you
Thank you to those autistic people and their families who have shown their support for the study and continue to do so. We hope that together with autistic people and their families we can address the concerns.
Simon Baron-Cohen on behalf of the Spectrum 10K team
I could write about that, but really it doesn’t mean much. It’s a non-apology. They’ve stated they need to relook at consulting with Autistic people, but really that raises more questions than it answers:
Who were they talking to before that allowed it to get to this stage without somebody pointing it that it’s a bad idea?
Why do they think inclusion/participation/co-production is something that can happen nearly two years after the project was funded? (Here’s a hint – inclusion/participatory work/co-production happens before the study is conceptualised and all the way through it, not thrown in halfway through.)
Realistically what can they change – they received funding to collect and examine the DNA of ten thousand Autistic people – are they seriously going to hand the money back?
If they do change things, surely that renders the current consent of those who have signed up null and void?
The timing of the great pause has also raised questions, when only days ago a statement from Simon Baron-Cohen was telling us how wonderful the study is and that we should trust it. But now suddenly they are readdressing it? Coincidentally, two days after the pause (Sunday 12th September, 7pm BST) there is going to be a very well publicised public consultation comprised by the BoycottSpectrum10K team, of which I am part of and who co-produced (You see that word Simon?: “Co-Produced”) the open letter.
Indeed much has been building towards this live panel discussion, which will/has been (depending on when you are reading this) hosted by Aucademy and streamed live to a number of different platforms such as Aucademy, Therapist Neurodiversity Collective, @BoycottSpectrum10K and Youtube.
Update as of 17th September, 2021
The panel happened and was a resounding success. It went on for a long time, nearly 3 hours – but as you can imagine there was an awful lot to go through.
I would like to point out that since that panel discussion two things have happened.
Literally the next morning, Simon Baron-Cohen appeared on Radio 4 Breakfast to talk about the study.
20 emotional Autistic people had worked themselves to near exhaustion to put together the open letter, run a social media campaign and present a live three hour dissection of the study and those involved in it; and Simon Baron-Cohen, invalidates that in one foul swoop popped onto national radio to defend himself and the study and performatively claimed that they will listen to Autistic people (and their parents) in a planned consultation.
I’m not even going to go into the twenty ways that’s wrong, 2 years after the Project was put together.
Maybe in the next open letter we write, we should consider addressing it to the Autism Researcher’s parents too…
The second thing that happened was that Simon was interviewed for this article:
Disability News Service
I’d like to give you a direct quote from the article and then implore you to read on:
The campaign has also raised concerns about the lack of co-production in designing the research and with some of the lead researchers involved in the project.
They say that Professor Sir Simon Baron-Cohen, ARC’s director, has previously been closely associated with “debunked” theories that have led to “inaccurate and damaging stereotypes” about autistic people, such as their lack of empathy and the claim that most autistic people are male.
He strongly disputes these claims about his work.
I’m just going to leave that last line to simmer and percolate for a while.
After all that, I’ve reached the main part of what I put all this together for.
I need a hook to get into my writing and I’ve struggled with what that hook is.
I’m exhausted and I’m angry and my monotropic focus has literally been scanning for an ‘in’ strong enough to pull me in, but also differentiate what I write from the good work others have already done.
And there it struck me.
Something that has been niggling at me for a while, more so since Spectrum10K was dropped in our laps, but for longer, something that’s been percolating in my mind for a long, long while.
I’ve written about Simon Baron-Cohen before. Not only because he diagnosed me a very, very long time ago, but also because of the influence he has had over the autism narrative in the the last 40 years.
But recently, specifically since the release of his last book, everywhere I look and everywhere I’ve watched and listened, I keep seeing people say that Simon Baron-Cohen has changed his narrative over the years, but continues to fail to address his previous harmful narratives.
Which honestly confuses me. I know many people don’t see the narratives around us and it can be difficult not to fall for performative acts, but it’s really apparent to me.
I mean, that people are saying this implies that, while still flawed, he is doing better by us (Autistic people) now.
For reference, if you don’t know, Sir Professor Simon Baron-Cohen is one of the leading names in the field of autism and has been for decades. He also happens to be co-lead on the Spectrum10K project.
I’ve followed Simon Baron-Cohen’s work for the last 20 years.
I’ve read his books and articles, I’ve watched his interviews and followed his projects.
I’m signed up to Autism Research Cambridge (ARC) so I can follow what research is coming out of his head and that of his peers.
I read all his papers, even those he’s just named on as co-author and has played no or little part in (Some of them I’m sure he’s never even read).
I’m not stalking him!
I do this for all the ‘major players’ in the autism industry, whether I agree with their concepts and theories and work, or not.
It’s integral for me, to understanding and being able to comment on the narratives around us as Autistic people. It’s integral to identifying the connections in what’s going wrong and being able to go in with the wire cutters to snip them.
I’m of the fundamental belief that understanding the history of autism is the beginning to understanding yourself as an Autistic person; and for supporters and allies of Autistic to understand why we think about Autistic people the way we traditionally do: through a lense of deficit, disorder and brokeness.
It’s how you equip yourself with the tools and knowledge to pick apart the societal impact on us as Autistic people and begin to reframe situations, both present and historical to work on removing the internalised stigma, shame and self-blame and start developing a positive sense of self.
The narrative Simon Baron-Cohen pushes now is the same narrative he’s always pushed.
Exactly the same thing.
His narrative hasn’t changed at all, it’s his language that has changed.
I truly don’t think that any of this has ever been about Theory of Mind, or Extreme Male Brains, or even Systemising and pattern spotting.
They feel to me like tools, stepping stones, that speak of a darker narrative and a continuing course that sits in the shadows looming, but not visible.
Simon Baron-Cohen’s current theories around Systemising fail to incorporate anything but a narrow slice of who Autistic people are and what drives us. They are rooted in Theory of Mind and the Extreme Male Brain, there is a natural progression from there to here, despite those theories long having been debunked and replaced by modern understandings of Neurology and modern research; research which doesn’t look at Autistic people as though they exist in a vacuum of disorder, but as social beings who are impacted by a social world that excludes us based on differences in our communication, thought and behaviours.
Those theories and most of Simon Baron-Cohen’s work has been heavily critiqued academically, focused on a tendency for him to be very selective evidentially, to work with very, very small groups and to use poor often flawed tasks, processes and methodology.
His theories are propped up and underpinned by Uta Frith’s contemptuous and incredibly flawed understanding of how Autistic people work, think and feel, again based on deficit and disorder. Where the lack of attribution of human traits and emotion to moving shapes is defined as a lack of empathy. Work which has deep roots, going all the way back to the writing of Hans Asperger.
Indeed in one of Simon’s published articles:
Theory of Mind and Autism: Review
He goes out of his way to point out that in his view, Autistic’s lack ‘The quintessential abilities that make us human’ (As defined by Whiten 1993), referring to Autistic people lacking Theory of Mind and recognising the emotional states of others.
In his conclusion, Baron-Cohen writes:
Mindreading deficits in autism spectrum conditions appear to be early occurring (from at least the end of the first year of life, if one includes joint attention deficits) and universal (if one tests for these either at the right point in development, or in the case of high-functioning, older subjects by using sensitive, age-appropriate tests)….
…Finally, much of the basic research in this field may have clinical applications in the areas of either intervention or early diagnosis…
Wherein which lies the rub.
A while back I co-wrote an article with Dr Sophie Vivian entitled ‘Regarding the use of dehumanising rhetoric’. The article was framed around Dr Vivian’s experiences of dehumanising rhetoric aimed towards Autistic people on her Neuroscience course at Kings College London.
Her peers and lecturers debated the definition of humanity and decided that empathy in full is one of the deciding factors of what makes us human.
By their definition, because of the work of Simon Baron-Cohen and the narratives that swim out from his theories, to their mind this meant that Autistic people do not fall under the classification of human, that at best we are incomplete human beings.
This is not a new narrative. Indeed Ivar Lovaas, the creator of Applied Behavioural Analysis and co-spawner of a multitude of behavioural therapies and conversion therapies (Aimed at both Autistics and Queer people) is famed for his statement that Autistic people are not fully human beings, that we need moulded and filled up with humanity:
“You see, you start pretty much from scratch when you work with an Autistic child.
You have a person in the physical sense – they have hair, a nose, a mouth; but they are not people in the psychological sense.
One way to look at the job of helping Autistic kids is to see it as a matter of constructing a person. You have the raw materials; you just have to build the person.”
Ole Ivar Lovaas
When you look at the organisations Simon Baron-Cohen advises and partners with, you actually start to see that this rhetoric continues:
EU Aims-2
A massive European-based research project funded by Autism Speaks and the Simon’s Foundation who fund research. Such research includes various studies including giving the drug Arbaclofen to Autistic children to make them more sociable, ignoring the studies evidencing that Autistic people are very sociable, just not in the way that society deems acceptable and that pressure to engage socially in a non-Autistic way actually causes trauma, marginalisation and self-stigma, which leads to Autistic MAsking, which has been directly linked as a risk factor in the high suicide rates of Autistic people.
They also fund variations of research using animals to find the root causes of autism, who have an aligned goal of finding causes, treatments and interventions. Mostly this incorporates mice burying marbles. I shit you not.
Spectrum10K
The project which has sparked this article which has vague goals of ‘solving problems’ for Autistic people by digging into our DNA (Oh and also passing it on to un-named future organisations and projects), victim blaming us when there’s plenty of evidence to show that most of our problems are caused by external factors, such as people, social norms and autism researchers.
One of their non-celebrity ambassadors spouts a lovely line in very obvious and flagrant racism and Transphobia though, which has been flagged with Spectrum10K, Cambridge University, Simon Baron-Cohen and the Wellcome Trust (funders of the project). All of them seem very quick to say they are listening but fail to be doing much doing besides what they want to. Which is strange, because the intersectionality of autism with the LGTBQIA+ community and the need to recognise and support people racialised as Black, Brown or People of Colour who are vastly under-represented in the autism narrative is well identified as paramount.
Autism Europe
An organisation that pulls together all the parent-led organisations and corporate entities across Europe that do a great job of speaking for themselves, but fail to speak for the people they claim to be speaking for and representing. They claim to want to “advance the rights for Autistic people and improve ‘their’ quality of life.” – The ‘their’ says everything.
National Autistic Society
The major UK charity and one which has a solid track record of poor and abusive practice (See Mendip House and Anderson School for two recent examples), who dominate and gatekeep the Uk autism narrative and who cheerfully centre on brand non-Autistic voices in the quest for corporate self-promotion. Funnily enough Simon Baron-Cohen is one of their vice-chairs and two of the Spectrum10K Ambassadors are also NAS Ambassadors. NAS also hire ABA (see below) practitioners and employ ABA and PBS within their schools and support services.
Simon Baron-Cohen is vice-President of the National Autistic Society, an organising which, between 2010 and 2019 took around £1billion in income and paid it’s leadership team six figure salaries each year along with a collective £1million in company benefits. Not bad for an organisation which claims they are “Transforming lives and changing attitudes”. I look forward to that starting at some point.
Interestingly two of the celebrity ambassadors for the Spectrum10k project are also celebrity ambassadors for the National Autistic Society, one of whom, Chris Packham, casually declared that anyone asking questions or opposing the project was a conspiracy theorist and anti-science. Clearly those scientists asking questions are anti-science…
Ambitious about Autism
Ambitious are an organisation built upon and framed around ABA (Applied Behavioural Analysis). Not that you’d know that by exploring their website, it seems like they are aware of the controversy and mass-opposition to it.
These are all organisations embedded in a search for, or are involved in the application of treatments for Autistic people generally and Autistic children specifically, with the aim of improving social interactions and the lessening of naturalist Autistic behaviours through the use of medical or behavioural interventions; Or (/and) they are completely engaged in narratives which reinforce negative narratives and perpetuate the need for that organisation’s existence.
Of course none of this is necessarily obvious from just looking at their literature. Like with anything I always ask that people do their research rather just taking my word for it.
All of them do though, have dire, or at best manipulative and tokenistic relationships and engagement with Autistic people and all deign to speak for (over) and on behalf of Autistic people; which is really a massively problematic theme in the autism narrative and very much reflected in the Spectrum10K project.
Simon Baron-Cohen rides the wind of performatism. His words are superficial and only drive towards the furthering of his ideologies and theories.
If his narrative has changed in any way significantly then why would he still promote his books that continue to perpetuate long debunked and damaging theories such as:
Autism: The Facts!
Which even by 1993 standards didn’t include any facts at all. It’s content would be laughable if it weren’t so stigmatising and damaging.
The essential difference
Which explores the differences in male and female brains to prove his extreme male brain theory. Even though it is well documented that there is zero clinical evidence of gendered brains in humans…
The Science of Evil: On Empathy and the Origins of Cruelty
Which from the back cover states: A groundbreaking and challenging examination of the social, cognitive, neurological, and biological roots of psychopathy, cruelty, and evil. Borderline personality disorder, autism, narcissism, psychosis: All of these syndromes have one thing in common–lack of empathy.
Oh, that’s debunked now isn’t it. I mean researchers can’t even agree on a definition of empathy and most belive that it is not a *thing* if it does exist, but a multitude of parts… But hey ho, we’re evil and cruel.
Zero degrees of empathy
Not to top the previous one published in the same year, Simon Baron-Cohen, expert in autism and developmental psychopathology, has always wanted to isolate and understand the factors that cause people to treat others as if they were mere objects. In this book he proposes a radical shift, turning the focus away from evil and on to the central factor, empathy.
So still with the debunked stuff and still with the dehumanising and stigmatising rhetoric.
Simon Baron-Cohen is still making money off of perpetuating theories which have directly harmed the community he *claims* to serve. He has not retracted any of his books or research, despite the content being thoroughly discredited. H e continues to make a profit from dehumanising Autistic people. His latest book ‘The pattern spotters’ is a performative nod to Neurodiversity (Which he clearly does not understand or really believe) and which, as I mentioned earlier, continues with the narratives started by Asperger and built upon by Frith (and frankly contributed to by many who came in between and afterwards)
All of which and whom have contributed to those left behind.
Despite how this might all sound, I have nothing personally against Simon Baron-Cohen.
I don’t know him personally.
He diagnosed me two decades ago, I spent a day with him and I found him pleasant, congenial, easy to talk to and funny even. I’ve spent the remainder of that time, particularly the last six or seven years, floating around his circles in the physical world and online, sometimes directly crossing paths.
But I’ve spent the last twenty years with the sour taste of iron in mouth in my mouth; and bile rises at the back of my throat at every thought of him and his work and every interaction with him, direct and indirect, that I have. Particularly at the thought of his previous and continuing negative impact.
The fact that he is both Knighted and lauded – testimony to a world which prefers the words of celebrity ‘experts’ who have done nothing to warrant that title beyond pandering to big organisations and writing sensationalist books and popularist research which appeals to the media. His work is superficial and flawed in a superficial and flawed world.
I constantly hold two versions of him in my head that I find difficult to correlate.
One is extremely personable, soft spoken and likable and the other is shadowed and drenched in blood.
There are so many people who are no longer with us. Those left behind, who were left unidentified and unsupported. Left to struggle and rot in a sea of confusion and poor mental health, engaged in internalised stigma and self-blame for what they deemed their failings. That still continues to this day and will continue into the furture.
All because his theories, embedded in the public consciousness, taught in universities and colleges, embedded within the mindsets of the services that are supposed to help and support us all, excluded them; leading to suicides, incarceration, hospitalisation, extremely poor mental and physical health. Things that are STILL happening.
Men, women, Non-binary and Trans people, people racialised as Black and Brown and of Colour, most specifically those assigned female at birth and those who do not present as typically Autistic – as per the knowledge base of those combining the DSM diagnostic manual with Baron-Cohen’s ideology.
People misdiagnosed, people denied diagnosis, people denied support, people for whom being Autistic never came onto their radar, or was never on the radar of those services they accessed and continues not to be; simply because Simon Baron-Cohen told them directly, or indirectly that to be Autistic meant to exist in a certain way, with specific deficits in Humanity; and that, that certain way is reliant on behavioural observations, poor experiments carried out poorly and on limited numbers and the lack of application of intersectional social understanding or context; and weak theories with weak evidence bases.
Simon Baron-Cohen is, if you are a parent reading this, one of the fundamental reasons why your Daughter has gone unrecognised for so long, why Children’s mental health services generally aren’t equipped to either identify or help Autistic children; why schools and social services are lacking the knowledge and resources to do what they are supposed to and need to when it comes to identifying and supporting Autistic children, recognised as Autistic or not.
One man has wielded that power, supported by countless others who fawn and hang on his word as THE EXPERT.
People are dead because of THE EXPERT.
Spectrum10k is just another in a long line of Simon Baron-Cohen things where the importance for him (and us) lies in recognising that he is not doing this to help others, he is doing this to help others in the way that he has decided they (Autistic people) need helping; and thus in doing so reinforces his own thinking, arrogance and sense of altruism.
Sir Professor Simon Baron-Cohen, is, in the greatest of ironies pertaining to his title, arrogantly white-knighting and rescuing people.
And the rub is: who is he rescuing and how…
If we go back to that dehumanising rhetoric for a moment and recall that Autistic people are seen as partially human. Well, in the narratives of old around Autism there have always been those Autistic people deemed more partially human than others.
There has been a consistent specific ableism (amongst all the other ableism) in the autism narrative around attributing value to those deemed as potentially valuable to society and discarding the rest.
What we are fighting, as Autistic people, in Spectrum10k are the same narratives we’ve been fighting for decades:
Functioning labels, the literal application of worth to certain externally designated subgroups based upon the ability to form spoken words and the arbitrary, rascist and ableist application of IQ.
The Aspergers diagnosis, a functioning level within itself, framed around the same notions of spoken word and intelligence as functioning labels, designed to create the illusion of societal functioning and relative worth.
The notion of the spectrum itself, which, when used as it commonly is, as a linear scale, reinforces those ideas.
All grounded in a complete lack of understanding of the intersectionality of human existence, the factors that form identity, disability, race, gender and probably most importantly co-occurring conditions.
Yes, eugenics…
I said it…
That scary and divisive word that is embedded at the heart of the autism narrative and is utterly centred in this drive to identify those who deemed productive, those who are deemed functional and valuable contributors to ableist society; and those who are deemed not to be any of those things.
Human driven survival of the fittest, where the fittest are described as those who can contribute financially and those who aren’t the fittest are those who are deemed to be a burden financially; where those deemed not fittest are thrown on the garbage pile, or ways are found to make sure they don’t appear at all.
Eugenics as perfectly represented by Robert Chapman regarding Simon Baron-Cohen here:
Simon Baron-Cohen, Neurodiversity-lite, and the History of Eugenic Thought
There’s the rub. The real rub.
There’s the heart of what I suspect is Baron-Cohen’s thinking and why he surrounds himself with organisations and people that think the same as him. Why he thinks it’s acceptable to team up with Daniel Geschwin of UCLA, a mouse researcher who as recently as 2021 stated that Autism is a disease and we must find ways to treat it.
According to the narratives of Geschwin and Baron-Cohen, there are Autistic people worth saving and there are those who are detrimental to society and just don’t have value. There are, according to them, Autistic people who are too far removed from being ‘fully human’ to ever come close to emulating a full human.
Geschwind is one of the original heads of an organisation called ‘Cure Autism Now’, which later merged with Autism Speaks itself an organisation that was formed to prove the links between vaccinations and Autism and to find a cure for Autism.
Every step of the way dehumanisation and Eugenics has been the over-arching theme. It’s there in everything Simon Baron-Cohen says and writes. It’s laid bare in his research, his interviews, his books.
The ability to discriminate between who is valuable and who is not, based on a circumstantial link between certain genes and certain ‘Autistic traits’. Why else would you need to know this, if not for the intention of one day selectively editing those deemed not valuable out of the world.
Eugenics is, I firmly believe, Simon Baron-Cohen’s real narrative.
It’s never changed.
But what about those designated ‘low functioning’, those who do not speak?
I refer you to my initial statement. There are many co-occurring conditions that need investigation and support, if that investigation is done in the right way; but the fact remains that currently those designating what quality of life for all Autistic people looks like, is based upon a completely ableist notion of what quality of life looks like.
There is much research evidencing that the Autistic way of being is a fundamentally fine way of being, it’s throwing non-Autistic centred normative standards into the mix that causes many of the problems.
Rather than centering Autistic people as permanently at fault, the evidence is pointing to the fact the systemic change needs to happen. But of course that’s hard and involves deconstructing privilege.
That rigid society that is embedded with repetitive behaviour finds it easier to stigmatise and victim blame than to change.
The £3million that has been thrown into this study could have been used in so many better ways that would have had improved outcomes in quality of life for so many people.
I’d like to bring you back to the article I linked earlier and Simon Baron-Cohen’s quote:
Disability News Service
The campaign has also raised concerns about the lack of co-production in designing the research and with some of the lead researchers involved in the project.
They say that Professor Sir Simon Baron-Cohen, ARC’s director, has previously been closely associated with “debunked” theories that have led to “inaccurate and damaging stereotypes” about autistic people, such as their lack of empathy and the claim that most autistic people are male.
He strongly disputes these claims about his work.
He strongly disputes these claims about his work.
He strongly disputes these claims about his work.
He strongly disputes these claims about his work.
Should I repeat it a forth time for those at the back?
Do I need to?
Spectrum10k:
The way it has been designed…
The lack of anything more than performative inclusion and blatent tokenism…
The lack of co-production…
The incredibly vague goals and aims
The lack of synchronicity with the well-researched and publicised needs and wants of the autistic community…
The ambassadors who have claimed those with questions are anti-science…
The ambassadors who spout racism and transphobia…
The confusing and potentially unlawful and unethical data collection processes…
The project leadership with a history of dehumanising and awful statements, theories, work and practice; who if you snapped in half like a stick of rock would have the word eugenics imprinted within their core…
The claims that DNA will only be shared by projects that share it’s ethics, when it’s own ethics are scraped from the bowl of a toilet…
The performative cries of “We know best, we’re here to help, we’re listening, trust us”…
It’s all indicative of something that very clearly (to me at least) cannot be trusted and specifically cannot be trusted to not engage in a search to exclude and prevent those who they deem as not having value.
To not work towards preventing the existence of those who can’t contribute in the way society insist they must to.
I beg anyone reading this who is considering taking part in Spectrum10k, or an organisation or service that is considering promoting it:
Think critically.
I’m not going to tell you not to do it, I just beg that you think critically.
I beg that you consider that there are narratives here that you can’t see; that you aren’t privy to. That there are agendas that are hidden deep.
Partly because many of these things are well hidden and partly because you’ve been deliberately excluded from them by decades of conditioning and indoctrination over what autism is.
The autism narrative, what many of us call the negative narrative, is wrapped up in a century of misconception, confusion, bias and people clinging to power through their theories.
Decade upon decade of flawed research holds the autism narrative up like a creaking mass of a haphazard structure, supported by rotten foundations, stood in a foundation of sand.
Spectrum10k is just another floor to that structure.
If you’ve made it this far and haven’t already, please go back to the open letter I mentioned earlier.
Please do read it, please do share it if you agree with it and please do consider signing it.
This is not just a UK issue; this is part of a wider narrative that influences every Autistic person and family members of Autistic people around the world.
This impacts us all.
Spectrum10K needs to stop.
And no, Simon, this doesn’t mean no genetic research.
This means no more genetic research with you and your ilk involved. I’d like genetic research done responsibly and with clear and genuine aims. It means organisations that are clear and honest with their involvement and why. It means researchers that understand and incorporate intersectional understandings of Autistic people, who are willing to cross-collaborate with other fields of science and engage with academics from those fields.
And most importantly, two things:
It must align with the wants, needs and wishes of the community it seeks to serve – the Autistic community, not parents, not Professionals and certainly not society.
Future research must be done in true co-production with Autistic people who are aware of and understand the narratives around us, the intersection of identities, of disability, of race, who understand the impact people like you, Simon, have had on us and with people who can see how much harm you have wrought. It must be led by those people and it must be cherished.
And it must all be done openly.
So basically the complete antithesis of this research you are leading on Spectrum10K which clearly links your project with Autistica, Autism Speaks and EU AIMS-2, which clearly identifies you accessing the SPARK database (when SPARK claimed they weren’t working with Spectrum10K) and through which you state you are seeking to find the genes associated with aspects of Autism you deem unacceptable, such as flapping and spinning:
Genetic correlates of phenotypic heterogeneity in autism
If that research is too word dense then please see Autistic Science Person‘s breakdown of it:
If we are supposed to trust our DNA with your ethics, please can you point to organisations and bodies less morally bankrupt than Autism Speaks, Autistica and EU AIMS-2? – Because it really doesn’t get much worse.
Autism research needs to change dramatically.
Academia needs to be held to account.
Responsibility of impact needs to be recognised.
The power dynamics need to change.
This is the line being drawn here.
4 replies to "Spectrum10K, Autism, Autistic people and the controversy of SBC"
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[…] The Autism Research Centre (ARC), based at University of Cambridge, is running Spectrum 10K – a eugenics project which claims they want to “help the well-being” of Autistic people and our families. The Boycott Spectrum 10K team has spoken about the many issues of this project in various places: Aucademy , Emergent Divergence , The Autistic Advocate. […]