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:
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.