Joe Lo, a London-based freelance journalist has written an article looking at some of the concerns the autistic community has about the disturbing Autism Innovative Medicine Studies-2-Trials (AIMS-2) European research project. The article, titled Why a European autism research program has sparked fears of eugenics, was commissioned by The Establishment, an American ‘multimedia site run & funded by women’. Here's an excerpt:
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Panda Mery is a university researcher in London and a former journalist, lecturer, and software engineer. He’s also autistic, and when he found out that a huge U.S.-based charity called Autism Speaks was involved in the AIMS-2 project, he grew highly suspicious of what “solutions” this research was seeking out.
“[Autism Speaks] are basically a hate speech organization,” he told me in an interview. “They treat autism like a cancer[*]. You want to get rid of the cancer. You want to get rid of the autism. But autism is part of your identity. It’s like, how can you get rid of the Britishness of someone? How can you get rid of the Jewishness of someone? How can you get rid of the autism of someone?”
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With alarm bells ringing, Mery requested a copy of the AIMS-2 grant agreement under EU transparency rules. On receiving the 664-page document, the alarm bells’ decibels became deafening — one section in particular troubled him:
Currently, there are no effective medical treatments for the core symptoms of Autism Spectrum Disorder. Our overall goal is to address these shortcomings by adopting a precision-medicine approach to better target treatments to patients through the use of validated stratification biomarkers and by testing novel or repurposed drugs.
For Mery, targeting the symptoms of autism sounds a lot like ‘curing autism’ — but autism is not a disease, it does not need curing. Cos Michael also objects to this language of “core symptoms.” What are they? Are they good things? Bad things? Who decides? Because they keep changing. Through history, the ‘core symptoms’ of autism have changed. It’s about what other [non-autistic] people call them. And ‘targeting them’? Why? Because we want to take them out? It’s so full of…well, hate, frankly.”
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Read the full article.
*I mentioned to Joe Lo the Tree House Town Hall 2008 talk by Bob Wright, the ex-Chairman and founder of Autism Speaks, in which he explained ‘I see autism through the lens of cancer’. (The video is a bit shaky, but it’s wonderful to see Jon Snow encouraging all present to flap.) That talk followed Something About Us, an excellent film about the rights and voice of autistic people by Dinah Murray and Jes Benstock.
Bootnote
For more details about AIMS-2 check out these blog posts: