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Jul 19 2023
Spectrum 10k and Autism Speaks are linked: here’s the things that link them

Autism Speaks are widely detested within the Autistic community. Since their inception, the horrendous “I am autism” commercial, and their ongoing attempts to eradicate autism and Autistic people; they have demonstrated themselves as an organisation that is not an ally to Autistic people. Spectrum 10k has revieved a similar reception from the Autistic community. It seems requesting the DNA of 10,000 Autistic people for “definitely not eugenics” reasons (but they can’t guarantee others wont use it for eugenics) has quite predictably upset far more than 10,000 Autistic people.

In a new and interesting development, activist and blogger Fierce Autie has made a connection that we all suspected might exist, but never had any tangible proof of. Now, thanks to the work of this activist, we may well have our connection. Link to their post below:

There is a Connection between Spectrum 10K and Autism Speaks
Fierce Autie’s blog post revealing the connection between S10k and Autism Speaks

There are two points to things to look at here, The Wellcome Trust and the Autism Genetic Resource Exchange (AGRE). Both have ties to Autism Speaks.

What is The Wellcome Trust?

In their own words:

“Wellcome improves health for everyone by funding research, leading policy and advocacy campaigns, and building global partnerships.

Collaborative research that involves a diverse range of people from different fields of interest is key to progress in health science – and to achieving our aim of fostering a healthier, happier, world. But many researchers feel they lack the time, finances, and creative environments they need to make breakthroughs.  That’s why we’re committed to funding ambitious global research projects that will transform our understanding of life, health, and wellbeing.”

The Wellcome Trust “what we do” page

For the purposes of Spectrum 10k, what you need to know is that The Wellcome Trust is the primary sponsor of this £3 million research project. Aside from comments on how that £3 million could have been better spent, this trust is deeply connected to S10k.

What is interesting as you will see within Fierce Autie’s blog post is that The Wellcome Trust received part of a $1.6 million grant from Autism Speaks to fund research into diagnosis and screening methods in moderate to low income countries. While we can not definitively say one way or another that money from Autism Speaks ended up in the Spectrum 10k banks account, what we can say is that The Wellcome Trust has direct links to Autism Speaks.

What is AGRE?

Again, in there own words:

“The Autism Genetic Resource Exchange (AGRE) is a gene bank housing data and biomaterials from over 2000 AGRE families, most of whom have two or more children on the autism spectrum.  Although for over a decade AGRE has collected most of these materials in the family home, we have now moved into the role of a Data Coordinating Center (DCC), receiving data and biomaterials primarily from outside researchers.  As a DCC, AGRE will continue to expand its resource by collaborating with researcher institutions who are working directly with families who have children on the autism spectrum.  We will further in our mission to accelerate the pace of autism research by enlarging our resource and continuing to make it available to autism researchers around the world”

Autism Speaks “AGRE for Families” page

The Health Research Authority (HRA) states the following about S10k:

“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks. As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”

HRA “Spectrum 10k update” (May 2022)

AGRE represents an undeniable link to Autism Speaks and is a strong indicator that this project may share goals and views with them (in my opinon).

What does this mean?

These points come together to show us that once again we have been lied to. Fierce Autie’s blog post shows tweets from Spectrum 10k’s twitter account denying any connection to Autism Speaks, while they full well know they are connected. Yet again, the significance of our joint statement is brought to light. What’s more, the fact that we have been ultimately ignored by the HRA shows us that they are closer to Autism Speaks than they are to the Autistic community.

If you needed anymore reasons not to give them your DNA, here it is.

Read more on the Spectrum 10k page of this website.

David Gray-Hammond 0 Comments
Mar 31 2023
The reality of how cure culture interrupts the neurodiversity movement
Scene from X-Men Rogue enters and says "Is it true professor, they can cure us?" Professor X answers "Yes, Rogue. It appears to be true" Storm intersects "No, Professor. They can't cure us. You wanna know why? Because there's nothing to cure, nothing wrong with you. Or any of us, for that matter".
Scene from X-men

The above scene is quite poinient to the topic of this article. Here we have Rogue, a mutant who kills everything she touches, and Storm, who can control the weather.

One might be forgiven for not necessarily seeing the connection between this and Autistic experience, but it is in fact a very good allegory for the battle between the normative violence of cure culture, and the neuroqueering approach of a lot of the Autistic community. Rogue and storm disagree on the benefits of a cure because they both have different profiles of how they embody their Self and experience the world.

In much the same way, Autistic people who support cure culture are ostracised and spoken poorly of. I’m going to let you in on something, I used to be one of then. I longed for someone to make me “normal”. I was tired of being the outsider. I, of course, was lucky enough to discover the Autistic community. I learned how to co-exist with my particular profile of traits and intersections. I was taught how to make the best of being a marginalised person, and came to see the harmfulness of cure culture.

Not everyone has had the access to the community I have had.

There in lies the crux of the matter. The cult of normality, peddlers of normative oppression, face less scrutiny while our energies are spent fighting amongst ourselves. While hearing the harmful views of those who are yet to dismantle their internalised ableism is difficult, we need to give them the space to learn and grow with us. If we are fighting each other, we are not fighting the system.

This isn’t to say that we should excuse or accept harmful words or behaviour, more a commentary on the idea that everyone is at a different stage on their journey of discovery and growth. Much as we were brought in from the harsh cold of society, we need to create a space where those with less knowledge and self-acceptance are willing to listen to us and grow alongside us.

Cure culture has done so much harm. From the children being fed bleach, to the trauma Autistics experience hearing those stories, to the civil wars in our own communities. We need to find a way of showing that we understand.

This is what we need to understand; all of us have our own unique experience of being Autistic. Much as Rogue and Storm has vastly different experiences of being mutants, not every Autistic person has a profile of traits and intersections that is congruent with our own. Some of us have been so traumatised that we can not come to terms with our Self. We need to help people come to love who they are, even if that person has more negative experiences than we do.

We need to consider how we create a world that truly accommodates diversity, and not just the pretty, idealistic version of diversity that sells t-shirts and pays lip service during company diversity campaigns.

David Gray-Hammond 1 Comments
Mar 15 2023
Autistic culture and the conservation of neurodiversity

I’ve worn many professional hats over the years. Perhaps it may be surprising to some when they learn that I didn’t spring forth from the womb clad in rainbow flags and infinity symbols. My undergraduate degree was actually completely unrelated to autism (in the literal sense); I studied forensic and archaeological science.

As part of my training in both forensic and archaeological practices, I had to learn how to conduct environmental impact assessments. Right now, you’re probably wondering, “Why the hell is David telling us this?” You will be unsurprised to learn that I’m going to relate this to Autistic culture.

You can’t consider an environment and its health without first considering the biodiversity that exists within that environment. Neurodiversity can, from an ecological perspective, be considered a form of biodiversity.

The world can be considered an environment consisting of a multitude of cultures and sub-cultures. In this context, we can consider a sub-culture to be a group within an existing culture that shares similarities with that larger overall culture but contains variations, or perhaps deviations, from the perceived normative standards. I would then like to position Autistic culture in an ecological class of sub-culture.

We share many similarities with the wider cultures within the environment. Thanks to the intersectionality of our community, we exist within multiple larger cultures. We do, however, have specific language and a sociality of our own. So, within the broad context of various human cultures autism exists as its own diverse nook.

Why is this important?

The ecology of an environment is a complex machination. Each seemingly insignificant aspect creates the balance required for each living part of that environment to co-exist with each other. Removal of even the smallest part of an environment can create a cascading effect that leads to the failure of a given ecosystem. With respect to cultures and sub-cultures, they are a necessary part of human ecology.

As a species that evolved to be interdependent, neurological diversity allows for the development of the means of not just co-existence with our fellow humans but also the survival of our species. This, then, is why Autistic people find themselves so concerned with cure culture and eugenics. The ramifications of the erasure of Autistic sub-culture are far-reaching, beyond the scope of our mere elimination from the gene pool. It is possible that our erasure could threaten the ecological balance of the human environment.

Neurodiversity has a farther reach than merely our right to exist as neurodivergent people. It considers our need to exist. Autistic people are not just an aberration. We are not a deviation from objective normality. We are a necessary part of human cognition. Human existence, like the existence of any species, is predicated on its diversity. Reduction of biodiversity can and will ultimately lead to our failure to thrive.

So, with the consideration that we are necessary for the existence of the human race. Perhaps it is time to stop making us “indistinguishable from our peers.” It’s not just Autistic people who are being harmed by attempts to reduce us, it’s humanity itself.

David Gray-Hammond 2 Comments
Mar 11 2023
Spectrum 10k and further misleading information is circling

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.

David Gray-Hammond 0 Comments
Jan 25 2023
Spectrum 10k will never be acceptable: Here is why

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.

David Gray-Hammond 0 Comments
Jan 25 2023
A brief history of Spectrum 10k

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.

Great right?

Wrong.

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.

And waited.

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.

David Gray-Hammond 0 Comments
Jan 22 2023
Spectrum 10k researchers have given up on hiding their eugenics agenda

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.

David Gray-Hammond 3 Comments
Jan 2 2023
10,000 to midnight: Spectrum 10k and the struggle to exist

Spectrum 10k has been part of a world for over a year at this point, and it’s existence has taught us a great deal about our place in wider society; something we may forget if we do not step outside of Autistic circles all that often.

The Bulletin of the Atomic Scientists runs a blog which houses something known as the dooms day clock. This metaphorical clock counts down to midnight, with midnight being the point in time when society comes to an end. It has been edging closer and closer to that point over the last few year. At the time of writing, the clock is set at 100 seconds to midnight.

The Autistic community, similarly, is facing it’s own collapse, and yet we are not as worried as we should be. For me, Spectrum 10k represents the beginning of the end. This is a study that could be a turning point in both the push to remove Autistic people from the human gene pool, or it could be the moment when people realise that we have a right to exist, and we will fight for that.

Currently, all that stands between us and the turning of the tide is 10,000 samples of DNA. Those 10,000 samples have the power to undermine our existence in a way that we are not yet fully comprehending. I doubt if even the scientists conducting the study are aware of the ramifications of their work; if they were, they might well pick a narrative and stick to it.

Autistic people have struggled to exist in perpetuity. Not because we are Autistic, but because the society we live in is supported by a structure built from oppresive normativity, colonialism, and bigotry. We have to tear down these structures, not just at the surface where projects such as S10k exist, but also at the root, where the coneptualisation of our personhood is misshapen and grotesque. Autistic people are not some sideshow exhibit, we do not exist to shock and astound you. There is beauty in our existence.

So, again we take up our arms, and prepare to fight the rising waters of normativity manifest in eugenics. Again we fight for our right to exist. Again we fight to have a peaceful and fulfilled life.

Those malefactors for whom the eradication of difference is a priority, will come to regret the side of history that they have chosen. We have drawn our line in the sand, we have declared our right to this space. Now we must defend it.

David Gray-Hammond 0 Comments
Dec 29 2022
Spectrum 10k is still not acceptable, here are three reasons why

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.

David Gray-Hammond 0 Comments
Dec 28 2022
Spectrum 10k is back, and now they want to exploit you

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.

We will not let you divide and conquer.

David Gray-Hammond 2 Comments
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