Around the world Autistic advocates and our real allies are campaigning together to stop the Spectrum 10K project.
The campaign’s tags known so far: #StopSpectrum10K.
Regardless of the name it’s going by currently, this database of Autistics has a history going back to the predecessors of Autism Speaks – before the great USA autism organization merger of 2006 & 2007 – to the early days and initiatives of Cure Autism Now and the National Alliance for Autism Research (NAAR).
#StopSpectrum10K: Support Autistics In The UK & Sign The Petition
Please sign the petition to show that you support autistic people and prevent this study from being released to the public.
There’s so much history here with these organizations, how some of the founders met up with NIMH’s Tom Insel in 2003 and then followed his suggestions and went on to launch Autism Speaks, SFARI and more.
So very quickly: Autism Speaks launched in 2005 and merged with Cure Autism Now (CAN), National Alliance for Autism Research (NAAR) by 2007. By doing so, Autism Speaks inherited these organizations initiatives and collections including Autism Genetic Resource Exchange (AGRE), Autism Tissue Program (ATP), the Interactive Autism Network (IAN), Autism Treatment Network (ATN) and more.
Cure Autism Now once boasted of having the largest autism database. Autism Speaks has boasted the same.
Now Spectrum 10K is using the same marketing language to promote their genetic initiative. Not a surprise.
The autism genetic database keeps evolving and growing every year without fail. While the marketing around it has changed, and sometimes the name is different, the Autism Genetic Resource Exchange (AGRE) initiative keeps steam-rolling forward with it’s agenda. The gaslighting patterns about the Spectrum 10K project looks very much the same in the UK as it does here in the USA.
There is much concern about this project, and rightfully so, about eugenics, safety of the information, who has accessibility and so on. There’s no answer as to why Autistics should trust these organizations and companies with our genetic information. The responses from these organizations — and their spokespeople — are akin to tempering a tantrum from a toddler or patting the head of a child, not discussing — with legitimate transparency and equality — this initiative and it’s ugly history with their majority stakeholders: Autistic people.
What would legitimate transparency look like?
First step, start answering some questions, like:
How many times has this information been sold? Which organizations/companies/people purchased it and to what ends was it used? Transparency would also include honesty about eugenics potential and the future safety of this information. Reparations on the harm done can begin once that has happened …
For now, let’s just start with:
How many times has this autism gene bank been sold and to which companies and organizations?
How do we know this database won’t be sold or given to a project meant to delete Autistics from being born?
How safe is this database from being hacked, jacked and commodified?
Oh, and before any of these organizations deny cashing in on our genetic databank, note that in 2004 Cure Autism Now had already sold AGRE samples to a biotech company, Intragen, in France. Where else has it been sold or gifted?
In this fight to #StopSpectrum10K are many young adult Autistics who had their DNA submitted as a child by their parent that’s now included in the great autism gene database of Autism Speaks and the Simons collection. Some of these Autistics have had their genetic information shared and weren’t informed.
So that brings up another complication: What’s the recourse for Autistics to have their DNA removed from this project?
How do Autistics find out if their DNA was submitted without their knowledge, and what’s the process in getting it removed?
So many questions that have never been answered with truth and transparency here in the States. Looks like the same song and dance routine happening over in the UK right now.
Know this: The fight against the Neurodivergent movement by parent-founded organizations is a fight over money and who controls it.
In the States, the money these organizations control now, or have influence over, includes government and private sector grants. Historically, Autistics have been locked out in representation in legislation. Just this year, the Interagency Autism Coordinating Committee (IACC) added three Autistic advocates that weren’t affiliated with a parent-founded group for the first time.
These autism budgets involve billions of dollars allocated yearly (IACC, NIH, NIMH) and the autistic civil and human rights movement threatens the status quo on who holds influence and leverage on where that money is allocated. We’re talking billions of dollars a year that are allocated by the representatives of these parent-founded organizations here in the States.
I’ve created an article that includes history on the AGRE database and organizations affiliated to help support the work of Autistric activists and real allies work out there. You can find that information here.
This post, below, will highlight the work of activists and allies worldwide fighting to #StopSpectrum10K and share links news about it. I’ll be adding to this as the campaign goes on.
#StayLoud #StayStrong ❤
Last updated: August 31, 2021
About Spectrum 10K
Spectrum 10K aims to investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.
Spectrum 10K is the largest study of autism in the UK and is a research study involving 10,000 autistic individuals of all ages and abilities, and their relatives living in the UK. It is led by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA). Click here to meet our team.
The waters surrounding autistic genetic studies are best described as murky. The MSSNG project from Autism Speaks and SPARK from the Simons Foundation are prime examples (as both organizations are partners).
Aside from them being viewed as harmful by many autistic people online from trying to find genes rather than providing services for autistic people living today, they are also based primarily in the United States. Recently, The United Kingdom has weighed in on the matter with Spectrum 10K, a brand new project spearheaded by Cambridge University with Simon Baron Cohen serving as lead researcher.
Sonny Bailey started this petition to University of Cambridge and 1 other
The new study ‘Spectrum 10k’ is being described as the largest study of autism in the UK and its aim is “to investigate factors that contribute to autism and related conditions to better understand wellbeing in autistic people.”
It states that it opposes a cure or any form of eugenics. Unfortunately, the organisers behind this study have direct links to organisations that advocate for cures and eugenics. .. read the full petition and sign on Change.org.