I’m going to start with an admission. The text-based images in this article came to me via a DM. I am yet to find their original source, and as such, I can not confirm whether the people behind Spectrum 10k wrote this. I do, however, feel that as these statements are out there, it’s necessary to address the misleading information contained within.
Below are the screenshots that I have received. I will address this point by point to the best of my ability.
1. “Spectrum 10k are not looking for a prenatal test for autism”
This technically true if you take their publicised aims at face value. I do, however, feel it’s necessary to draw your attention to a study they are conducting into using amniocentesis and hormone levels in utero. They go on to talk in the screenshot about how a prenatal test could not work using genetics alone; perhaps Baron-Cohen would then like to address his involvement in a prenatal study that assesses more than genetics as a tool for prenatal screening.
I have written more about the aforementioned study in this article.
2. “We do not support cures or treatments for autism itself“
This is clever wording. It leaves it open to justify historical, current, or future involvement in cures and interventions for aspects of Autistic experience that technically fall outside of the remit of “autism itself”. This, of course, is conjecture to a certain extent. I do believe that we have to consider this wording in the wider context of the unethical responses to valid concerns by Autistic people.
Unfortunately, there is more to consider. We know that at least one of the leading researchers on the Spectrum 10k team has direct links to eugenics and curist rhetoric. We know that team members have had involvement with organisations that have overtly stated their intent to eliminate Autistic people from the human gene pool.
They claim that the study will not be used to create prenatal testing for autism but fail to address the concerns that these further studies and associations outside of the study raise. To be clear, we have had no reasonable explanation of how Spectrum 10k and the amniocentesis study will not work in tandem to increase the likelihood of a prenatal test. We have also had no meaningful response to our concerns around team members’ involvement with eugenics organisations.
Until such time that the Autism Research Centre can offer an actual alternative position, without subterfuge and misleading statements, I will still be encouraging you to boycott their research and speak out against them.
For more information on Spectrum 10k you can read our original statement here and a vast array of writing about it on this page.
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.
Text reads “Autistic people are vulnerable to being misunderstood and to ending up in the criminal justice system, accused of crimes when they have had no criminal intent. It is vital that they have well-informed advocates and legal advice and that the police and the courts are well trained to make reasonable adjustments for an Autistic defendant. Autistic people deserve proper support, especially when they make mistakes, given their disability. Professor Simon Baron-Cohen, Trinity College, Cambridge, President of Internatiibal Society for Autism Research”
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.
Sincerely,
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.
tanyaadkin.co.uk
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.
autismadvocate.co.uk
Bibliography
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.
Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.
This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.
S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.
Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.
What happens next?
You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.
Here’s what our kids need.
They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.
Simply put, autism + environment = outcome.
The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.
Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.
Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.
“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”
This means, that this research, could possibly be used to prevent the birth of Autistic babies.
Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.
There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.
10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.
So this means, they are either being very arrogant, or they are lying.
How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?
The answer, very clearly, is it won’t.
So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.
Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.
Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.
It gets worse.
When speaking at a UCLA symposium in 2018;
“If we know the mechanism, then we can prevent it. Cure the autism”
They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.
Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.
And that is why we suggest #BoycottSpectrum10k.
This letter was a collective effort from the team at #BoycottSpectrum10k
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.”
Simon Baron-Cohen
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.
Sincerely,
The Autistic Community.
This article was a collective effort by the team at Boycott Spectrum 10k and the Autistic community at large.
Please join us Twitter tonight at 7pm BST by following the link below.
Since autism first entered the zeitgeist, and probably before, research into it has focused largely on what causes it. The reason for this is clear to pretty much the entire autistic community.
Rather than embrace the existence of a neurominority, and validating our right to exist, science largely wants to eradicate us.
Now with the looming spectre of Spectrum 10k (S10k), never has it been more obvious that our wellbeing and our needs as Autistics do not matter to the Autism Research “Industrial Complex”.
Looking at our genetics is what attracts the big money, and (as in the case of S10k) they won’t guarantee what will be done with that data.
The general population worships the genetic research being done, believing only that they are helping us. While we, the neurominority, beg them to help us improve our quality of life, our wellbeing.
While we beg for scraps of validation and recognition of our needs, groups like the ARC in Cambridge ignore us.
Certainly, their is a premise for a dystopian fiction novel in this scenario, that would require little more than an accurate glance into the future. One need not embellish the truth to tell this tale in a truly terrifying fashion.
Perhaps, then, you can understand why the Autistic community is suffering so greatly right now. I am watching my fellow autistic advocates burnout and shutdown in the wake of yet more research that cares not about the lives of our neurokin.
I will not stand idle while this community is decimated. This community saved my life, I am certain it saved countless others. Now is the time to unite, and shift the scientific paradigm to one that listens to the minorities it claims to act for.
I will not be erased, and I will not allow my fellow Autistics to be erased either.
I believe a future without Autistic people is a bleak one. A world without diversity is a world without a soul.
Diversity is at the heart of any healthy society, civilisations that fear diversity are known to crumble. S10k goes beyond the very valid concerns of the Autistic community, it is a symptom of a world that fears it’s own diversity.
We must root out the ableism endemic to our communities, and the world at large.
You must be logged in to post a comment.