During my time in the Autistic community, I often heard murmurings of eugenics projects, but in all honesty, I was unaware of the reality of just how many sought to eradicate Autistic people. Perhaps then you can understand just how upsetting Spectrum 10k has been; not just for me, but for tens of thousands of Autistic people, for whom eugenics has been a mythical creature. This project has served as a rude awakening to a world in which we are not welcome. Such a world as the ones found in dystopian fiction.
They say that ignorance is bliss, and truthfully, it was. I yearn for a world where experts are only wrong, and do not harbour genocidal ambitions. Unfortunately, the Autism Research Centre in Cambridge, UK, are engaging on projects that each day take us closer to a world where Autistic people no longer exist.
Myself and the rest of the team at the Boycott Spectrum 10K campaign have literally given our wellbeing to this cause. Many, if not all of us, have been in some state of burnout since this started. We have fought hard to make it clear that we won’t stand idley by while things like this are enacted upon our community. So this latest attempt to draw us into consultation over this project has been a slap in the face.
Some may believe we can achieve more by coming to the table, but I want to tell you why that won’t work. There is no version of the current project that is acceptable. As the project stands, any input from Autistic people would be tokenistic. It would still have the same goals, it would still produce the same data with the same ethical issues. In order for this project to be acceptable, it would no longer be the same project. It would require new goals, new data collection, and new ethics approval. They would likely lose their funding as well as the people who provided it had very specific goals in mind.
For our input to mean anything, this entire project would need to be abandoned, and a new one co-produced with the Autistic community.
Unfortunately, this will not happen. The people involved in this project do not care for what research we actually need. Their values do not align with our community. If we came to the table, they would write down our views, and bin them once we left. Involvement with this project will bring nothing good, but it will empower them. If we come to the table, we legitimise their ambitions. We can not allow that to happen.
In the summer of 2021, it was announced that a new study would be seeking the DNA of 10,000 Autistic people and their families. They wanted to do this to look at co-occurring conditions amongst Autistic people and improve our wellbeing.
Upon further scrutiny, it became clear that there were no guarantees on how data would be used beyond the scope of the project. While project leads were quick to deny any eugenics oriented goals, they were going to sell the data on, and even stated that they “couldn’t guarantee” that buyers wouldn’t use the data for eugenics.
The researchers tried to distance themselves from eugenics claims, especially as one of the project leads had ties to an overtly eugenics oriented organisation.
They hired Autistic celebrities as representatives of the project. This was a blatant attempt to manipulate people. One of those celebrities went on to out themselves as a bigot, and all round awful person. Unsurprisingly, those celebrities are quiet these days.
Given the lack of guarantees on how data would be used, not to mention a number of other ethical issues that myself and the rest of the Boycott Spectrum 10K team observed. We started the #BoycottSpectrum10k campaign.
One of the main things to come out of that campaign was our collective joint statement. The statement featured input from Autistic thought leaders, academics, and activists detailing every issue with the project.
This statement was given to the Health Research Authority.
It turned out, we were not the only ones who had contacted them about this. They took our statement and gave a promise to investigate our concerns.
We waited some more…
While we were waiting, Spectrum 10k was placed on pause, pending wider consultation with the Autistic community.
After what felt like an eternity of waiting, the HRA got back to us, claiming that they felt the promise of consulting the Autistic community vefore continuing with the project was sufficient.
For some time, there was little more than murmurings.
Then, recently, as 2022 was ending, and 2023 was starting; an Autistic academic made a post in a Facebook group asking Autistic people to come forward and be consulted.
Again, the use of an Autistic person was tokenistic, and for no other reason than to disarm our community.
And so, the Boycott team resurfaced.
Finally, approximately a week ago. Leaked screenshots of a communication came to our attention.
It was asking people to take part in a focus group about a project to use amniocentesis to investigate hormone levels and how that related to the development of Autistic babies.
So, as of now, it is undeniable that the Autism Research Centre in Cambridge, UK, has eugenics oriented objectives.
I hope that this gives you some idea of where we have been and where we are now. Honestly, many of us on the BS10k team have sacrificed a great deal of our wellbeing trying to put a stop to this.
The truth is, we probably won’t stop it, but we can make it so that others will think twice before trying anything similar.
CW: Termination of pregnancies, amniocentesis, pre-natal testing, eugenics
Edit: This is just a focus group at this point, but it is terrifying none-the-less.
Spectrum 10k is being run by a team from the Autism Research Centre (ARC) attached to the University of Cambridge. The scandalous research project has been a source of contention for a couple of years now, with researchers showing their flagrant disregard for the wishes and wellbeing of Autistic people in overt ways. Despite their claims that this project has no ties to eugenics, a leaked communication from ARC has now confirmed their intentions.
Find images below
The above images detail a project that will use amniocentesis to investigate hormone levels during pregnancy and how that relates to the development of autism in infants. This is troubling for a number of reasons.
You have probably heard of amniocentesis if you have had a child. It’s a test that involves taking a sample of amniotic fluid from the womb. Typically, this is used to test for Down Syndrome. If a pregnancy is found to test positive, the mother is offered the opportunity to terminate the pregnancy. Regardless of the complex reasons why someone might choose this, it is still eugenics.
Amniocentesis represents a huge ethical issue in medicine. Not only does it put the viability of a pregnancy at risk, it also provides parents with the opportunity to abort disabled children. It raises questions about quality of life, and right to life. Many people have this test, it is an everyday occurrence. Unfortunately, most people are not active in disability communities and can not conceive of why such practices are harmful and upsetting to our community.
In fact, doctors and midwives can be very pushy about amniocentesis. I have heard stories of mothers being tricked into consenting to the test. It highlights an issue where disabled people are viewed as less-than human and as a drain on resources and parental wellbeing. We ate told it is a kindness to prevent the birth of disabled people because we have been conditioned into believing that disability is a tragedy.
So why is it significant that the ARC is running this study?
It has one logical conclusion. The development of a pre-natal test for autism, that will allow for the termination of Autistic pregnancies. When you consider this alongside the Spectrum 10k project, it really shows just how desperate this research centre are to end the existence of Autistic people.
This sort of research comes from the twisted “ethics” of people who are so unaware of their own privilege that they are unable to conceive of Autistic people’s humanity. These people do not care for Autistic people. They only care about eradicating us. Neuronormativity in society has reached a terminal point, where we are willing to end the lives of people who are unlikely to conform to cultural norms.
If you threaten the status quo, they threaten your right to life.
Simon Baron-Cohen and his team are eugenicists. There isn’t any question about it. The research that has come from them over the years has been harmful (to say the least), but now the future of the Autistic community is in jeopardy. All Autistic people have a right to life, no matter how inconvenient it is for others.
I ask any of you who are approached to join this project to refuse. Tell them why they are harmful. Tell them why we will not stand for this flagrant disregard for the sanctity of Autistic lives.
We owe it to the Autistic people yet to come to make this kind of research unviable. It needs to have career ending ramifications for anyone who tries to end us.
It is perhaps fitting that Spectrum 10k has reappeared during the dark months of the year. Much like the cryptids of antiquity, it inspires fear in our community, and obscures itself from the sight of all who attempt to quantify it’s nature.
There are no “versions” of the truth. Truth is a singular point, constructed from a collective of subjective experiences. So when the collective experience of the Autistic community tells you that S10k is the wolf among the lambs, we beg you to take heed.
There are three points I want you to consider before handing your DNA over to these malefactors:
1. There is no acceptable version of this study in it’s current form.
Regardless of how they dress it up, no matter how much they polish this particular turd, this is still the starting point of a eugenics program. They want to find the genetic root of autism, and by doing so, open the door to pre-natal testing. If you don’t realise what this means, please Google the amniocentesis test for down-syndrome, and how it has decimated the right of this minority to exist.
2. They are exploiting Autistic people to conduct the newly required “consultations”.
The people conducting these consultations want Autistic people to rehash our concerns for them, concerns that were so important to them that they didn’t take the time to listen the first time. Not only do they want us to repeat ourselves, I very much doubt this traumatic experience will come with any recompense. They also want us to do this without shouting them down. Perhaps, if they don’t want to be shouted down by Autistics, they should stop running projects that could lead to our eradication.
3. They are using token Autistics to manipulate us into engaging.
The fact that they are employing Autistic people to lead consultations is not an accident. It is a direct attempt to tug on our heart strings, and present an air of acceptability to the project. It is my belief that they hope we will believe that they’ve changed, and that it’s different this time, and that we will be more willing to engage with them.
The truth is that they are still using the same misdirection and subterfuge that they always have. Just because the nice man offers you candy, doesn’t mean you should get into the windowless van.
We as a community need to boycott not just this project, but all projects by those involved in the future. If we can show people that their careers are in jeopardy, they will be less likely to make this attempt in the future.
You may feel my words are hyperbolic in nature, but the Autistic community is my chosen family, and when someone threatens my family, I will use my words as weapons. Autistic people have a right to exist, and this flagrant example of ableism and disdain for our existence will become a significant part of our history.
It’s up to you to decide which side of that history you want to be on.
As you may remember from last year, Spectrum 10k was the project that “definitely wouldn’t be used for eugenics” but had involvement from people with links to (you guessed it) eugenics.
I won’t bore you with the details of this project’s history, it has been detailed on this website Here, Here and Here.
No, what I want to bring attention to is the betrayal we are experiencing at the hands of Autistic people, now involved in the project, who wouldn’t know their own tokenism even if they were walked up to it and introduced.
These Autistic people, paid to run consultations, with an aim to progress this experiment in the silent eradication of an entire cultural minority, want us to speak and tell them why we disagree.
As linked above, we have detailed our concerns, myself and others on the BS10k team poured literal tears into defending the Autistic community. We detailed our concerns, we lost weeks of sleep. It took such a toll on us that we are still engaging in peer support over this more than a year on.
So, when we are asked to detail this (yet again) understand that they are asking us to relive that trauma. Trauma that they are at fault for by being involved with this project. Not only do they ask us to go through this for no recompense, they are also asking as to subject ourselves to tone policing.
They believe that not only should we repeat the concerns they didn’t care enough to take note of, we should also do so without getting angry.
If you want to know why there is such suffering amongst the Autistic population, I point you to the likes of S10k and its partners. A group of aggressors who think nothing of exploiting us to meet their own wish to eradicate us.
We will not stand for it.
Our identities are built from our environment. S10k can no longer be allowed to be a part of our environment. We need to make this project untenable. We must not stop until the careers of all involved are brought to an end.
When I tell you to boycott S10k, I also ask you to boycott all future work by the people involved. Because we have to show them just how much we disagree with their actions.
You came for my community, and as a community, we will bite back. We are not the passive agents you hoped for.
Edit to add disclaimer: Despite Simon Baron-Cohen telling us that there will be a police presence, A member of the protest team has since spoken to Cambridge Police and confirmed that no police presence is booked for the protest, although they may now send one or two officers to make sure everything is alright. In our opinion, Baron-Cohen told this lie in a direct attempt to try and stop the protest from happening. Please do still read the article as we believe this lie makes the content even more important.
This article was co-written by members of the Boycott Spectrum 10k team; David Gray-Hammond, Tanya Adkin and Bobbi Elman
Trigger warning: This article contains discussion of violence by law enforcement professionals, and discussion of systemic trauma caused by the criminal justice system.
Anyone who has followed the Boycott Spectrum 10k campaign will be aware that we are holding a peaceful protest outside the Autism Research Centre on the 29th October 2021, in Cambridge. This is the workplace of Simon Baron-Cohen, and the main research centre where the Spectrum 10k study will be housed. For more information on why we are protesting, please see our collective joint statement here, and another article discussing the study here.
Since it has now been confirmed by Simon Baron-Cohen that they have opted for a police presence on the day of the protest, we felt it necessary to have a discussion about why this is problematic, and the recent stories of police brutality against Autistic people. This is not to say that people will be at risk at the protest, this is a peaceful protest, and the whole event will be livestreamed, but police brutality is a very real issue that we feel someone like Simon Baron-Cohen should be, and probably is, aware of.
In fact, he said it himself.
We all know the stories from America. Police brutality is well documented in the States.
Unfortunately, due to the extreme nature of the violence and discrimination against minority groups in the US, and the voyeuristic nature of the UK media, what is happening on our own soil often goes unreported. One might understand this, when you consider that police in the US are literally killing innocent minorities. However, police brutality still exists in the UK, and Autistic and otherwise disabled people have often been on the receiving end.
“At least we’re not being shot”
This is a response often heard from people speaking from a place of privilege. It is also a response from those of us who have been so gaslit and bullied that we are willing to accept a certain level of mistreatment as normal, and be grateful for it. For example, Autistic children in mainstream schools are always “coping”. It’s considered acceptable to be treading water, despite the fact that one day we will run out of stamina and begin to drown.
In fact, our children are often victims of police brutality, in the very schools that claim to keep them safe.
Said police officer threatened to kick the boy, and dragged him along the ground, before turning to another child and saying “you’re next”. This didn’t happen in the US, this happened in Merseyside, UK. And the courts? After convicting the police officer of assault, merely fined him.
“The IOPC said PC Kemp attempted to handcuff the teenager, but when this was unsuccessful, he used CS spray less than a metre from her face. “Within seconds he started using his baton and then struck her several times,” it said.”
The stories above are just three very recent examples of police brutality against DISABLED CHILDREN. These are the ones that are privleged enough to have formal recognition of their neurodivergence. These are the ones who were lucky enough not to be institutionalised. What about the people labelled as “naughty”, “aggressive”, “feral”, “defiant”. What about those mislabelled mentally ill? If we are left unrecognised (read more here) and with these labels for long enough, we can develop mental health conditions. It’s inevitable, you can read more about this here.
What about those at the intersection of multiple marginalisation?
It’s well known that Autistic people are more likely to be gender non-conforming, there is a significant overlap between the Autistic community and the LGBTQIA+ community. It’s also known that very few of us fit the white, male, cis, heterosexual, middle class stereotype that the DSM-V criteria are based on, and what has been perceived as accepted for decades. In fact there are three of us writing this article right now and we can’t think of one Autistic person between us that fits this stereotype. Contrary to popular belief we have very wide reach and pretty busy Autistic social lives.
There are multiply disabled Autistics, non-speaking Autistics, Autistic people practicing a wide range of religions, or no religion at all. Like every human, we are everywhere, just like everyone else, we just have a different neurology to those with the dominant neurotype.
When we consider the different intersections in the Autistic community, there is one very significant intersection that we need to talk about with regard to police brutality. We need to consider how this impacts Autistic people of colour. It is widely publicised, the insidious prejudice ingrained into the world institutions and society itself.
Existing on this intersection places Autistic people of colour firmly near the top of the list when it comes to risk of police brutality.
“The police need to know that a Black person stopped by them for whatever reason, already has it in their head that they may not make it out from this stop alive. So nervousness, lack of eye contact, not reading body language and facial expression and all the other signs of what could be a condition like autism, could simply be a neurotypical person’s terror that they may never see their family again. Now imagine that same scenario in the head of someone who already has communication difficulties? Devastating.”
Of course, police brutality doesn’t always look like physical violence. Sometimes it is the systemic violence that unfairly incarcerates Black Autistic individuals. This was made obvious by the case of Osime Brown, A Black Autistic teenager, unfairly convicted and jailed, for a crime he didn’t commit, under the discriminatory joint enterprise law. Not only was he imprisoned, he was scheduled for deportation. It took a great deal of campaigning and protesting to have Osime freed and his deportation cancelled.
“Black people statistically struggle to gain access to assessments let alone diagnosis. Instead of getting the academic and social support he needed then, Osime, like many of us, was wrongly seen by his teachers as troublesome, stubborn and stand offish. Covering his ears due to sensory overwhelm was seen as rudeness. Meltdowns due to sheer frustration at not being able to communicate his needs was seen as bad behaviour…
…As a society we need to unlearn our biases, and develop better ways to support Black and neurodivergent people.”
Finally, let us consider the research surrounding Autistic people and their experiences with the police.
Research tells us that natural Autistic expressions of self increase the likelihood of a person encountering the criminal justice system at some point in their life (Tint et al; 2017).
Research also tells us that Simon Baron-Cohen has been espousing harmful views regarding Autistic people and criminality since at least the 1980’s, claiming that Autism is a risk factor for violent crime and terrorism (Baron-Cohen, S; 1988). perhaps now it is easy to see why he feels it necessary to intimidate us with systemic aggression. This is a man who has believed that our existence is dangerous for decades.
Simon Baron-Cohen knows exactly what he is doing by inviting the police to a peaceful protest, led by Autistic people (whom he professes to serve the interests of?) trying to defend their right to exist. He is hellbent on perpetuating the myth that we are violent, dysfunctional criminals. This is dehumanising. Autistic people are most likely to be victims (for a wider discussion of this, see Aucademy’s video here), not perpetrators.
Not only is this evidence of Baron-Cohens disdain for Autistic people, but also a prime example of his privilege. He’s so far removed from the daily lived experience of his “research subjects” that he genuinely thinks this is an appropriate response, does he read any research beyond his own self-serving and incredibly biased theories, that Autistic people disprove by merely existing?
This is all-the-more reason to attend this protest, we need to show in voice and number that we will not stand for the discrimination and prejudice that so called “autism researchers” continue to pour upon us, infecting every aspect of our daily lives.
Simon, just because you keep repeating something doesn’t make it true.
Boycott Spectrum 10k Team
For more information on the protest, please see the event listing on Facebook here.
Tanya Adkin (she/her)
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives
I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way
My work includes specialist consultation and direct work with Autistic CYP and their families that others describe as “complex” and “difficult to engage”, ranging from those experiencing psychosis, addiction to high risk Children Vulnerable to Exploitation, County lines and Sexual exploitation.
I work as a specialist alongside social workers ranging from assessing capacity, neurodivergent parenting, disabled children and child protection.
Bobbi Elman (she/her)
Bobbi is an Autistic mother of two Neurodivergent young adults. Bobbi and her children all have hypermobile EDS with many of the conditions that accompany it, like PoTS. High anxiety (exposure anxiety). Bobbi is a University of Birmingham graduate with a degree in SEN children Autism and has worked specifically with Autistic children/young people for over 19 years and believe in low arousal, child/person-centred approach. Bobbi has over eight years of experience working as a high-level specialised Autism one-to-one TA and experience working on a LA Autism Advisory team, which included key work.
Bobbi does not support ABA/PBS. (Applied Behaviour Analysis and Positive Behaviour Support).Bobbi continues to deliver training to staff and school, and will happily deliver training toanyone who works with or has contact with an Autistic child or adult on the Autistic experience. Bobbi is available for consultancy, advocacy, and training.
Aucademy (2021) Autistic, gender, & sexuality diversity – growing list of resources. aucademy.co.uk
Aucademy (2021) Autistics respond to media reporting of violence & victimisation by neurodivergent people Aug 2021. Aucademy, youtube.com
Baron-Cohen, S. (1988). An assessment of violence in a young man with Asperger’s Syndrome. Journal of Child Psychology and Psychiatry and Allied Disciplines, 29(3), 351–360.
Boycott Spectrum 10k Team (2021) Collective joint statement from Autistic people on Spectrum 10k. Emergent Divergence, emergentdivergence.com
Dalmayne, E. (2020) Fighting police abuse and racism. workersliberty.org
Dalmayne, E. (2020) Deporting An Autistic Black Man Exposes This Government’s Hypocrisy On Racism. Huffington Post, huffingtonpost.co.uk
Fallon, C. (2021) Call for police to get mandatory neurodiversity training after officer assaulted young autistic boy in school. Channel 4
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: Failures in identification. Emergent Divergence, emergentdivergence.com
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergent Divergence, emergentdivergence.com
Powell, J. (2021) Mum slams school as autistic son, 12, handcuffed by police on first day of term. The Mirror
The Guardian (2021) Met police officer dismissed for hitting vulnerable girl ‘more than 30 times’ with baton
Tint, A., Palucka, A. M., Bradley, E., Weiss, J. A., & Lunsky, Y. (2017). Correlates of police involvement among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2639-2647.
Autistic people are not okay, S10k has served as a stark reminder that we are treated as a burden upon not just the people that we love, but society as a whole.
Autistic people are subject to woefully inaccurate and outdated stereotypes that do a great deal of harm to us as a community. For a long time the Autistic community has pushed back against the idea of a linear spectrum, with the “severely disabled” at one end, and bright young mathematicians at the other end. Despite this we still have the likes of Simon Baron-Cohen espousing the need to preserve the young men who have mathematical skill, should a cure or pre-natal test be developed. This says a lot about his views on Autistic people as a whole. It’s eugenics, funded by a capitalist society that decides the value of our lives based on our financial productivity. Eighty years since Hans Asperger “saved” the useful Autistics, while dispensing the lives of those he deemed unworthy, we are still fighting for the right of all Autistics to exist, regardless of special skills or capitalist worth. In 2021 are we witnessing Simon Baron-Cohen morphing into the Hans Asperger of the 21st century?
The truth is, Autistic people are more than a medically diagnosed group. We are an identity-based minority, with a rich culture. A culture that we are excited to share with the world, even in the face of the worlds abject hatred of all that diverges from the neuromajority.
We are everywhere, we are your doctors, your lawyers, your shopkeepers, your shelf-stackers. We entertain you as artists, actors, directors. We are your friends, family, neighbours. Even if we aren’t yet identified (largely thanks to those inaccurate stereotypes skewing the diagnostic process).
We are human.
We have thoughts, feelings, emotions.
We have deepempathy and compassion. It can be overwhelming. S10k is overwhelming, which is how it felt last week when Spectrum 10k was announced, by non-autistic researchers, led by two non-autistic men who have strong links to organisations abhorred by the Autistic community, and supported and promoted by white men, cure culture, and an all round attitude of being pro-eugenics.
S10k has been peddled by people who are not autistic, don’t understand autistic culture, and don’t even understand the nature of this research. Indeed, nobody understands the nature of this research because of the secretive nature of those in control. The truth has been obfuscated in an attempt to gaslight Autistics into giving their DNA to those with ill intent, or for future use by those who mean us harm.
“There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”
Are we really at the point, in 2021, where we have to beg for our right to exist?
Because if that is the case, we are collectively pleading with you to boycott this study.
How can we ignore the fact that Baron-Cohen and Gerschwind have previous ties to Autism Speaks and Aims2Trials. Both of these groups are known to either look for a cure, or fund those who are.
Why are we pleading? The effects of this betrayal by society have taken a huge toll on our collective mental health. In the week since this has launched, the damage that has been done has been immense, imagine what further damage this study could do if left to fulfil it’s aims.
The study claims to be looking into the causes of poor wellbeing in Autistics. They already know what causes it, and it’s not in our DNA. It is, however, quite possible that the thought of our parents having the choice to abort us does cause the poor wellbeing they claim to be so invested in preventing.
Imagine what the Autistic community could do with that money; We could train the whole of the U.K on improving mental wellbeing for Autistics, training on supporting us in a disabling environment.
Are you Autistic? What would you do?
Will you stand by while our DNA is misused by those who seek to destroy us?
Please, do not give your DNA to these people. Do not allow them to destroy the rich culture that we have spent decades cultivating and nurturing.
The Autistic Community.
This article was a collective effort by the team at Boycott Spectrum 10k and the Autistic community at large.
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