Exporting The Autism Genome Project To China

Filed Under (Newgenics, Research, The Autism Genome Project) by Estee on 10-11-2012

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The Toronto Star has dedicated a series of stories about autism. It’s cheaper to hire a scientist in China — about $16,700 a year reports the Star’s Tanya Talaga. Autism…the “creeping, silent epidemic,” (yes that language is still being used which should tell us that the reporters aren’t reporting from a critical perspective), and it “needs to be cured like cancer.” Bring on more puzzle-washing – Autism Speaks still runs its campaigns like the very controversial cancer charities (aka: Pink Washing).

There’s no mention of how the autism category keeps changing with the years and changes with society’s fears and imaginings. There’s no interviews with autistic individuals (yet), and noon from the disability rights movement to support autistic people. I’m hoping they will come out to support us.

Like our economy, we focus mapping autism genes now to China — the company BGI has apparently very big machines running twenty-four hours a day, seven days a week to break down DNA. BGI has “mapped the genetic code of the giant panda, a grain of rice, a silkworm, soy, tomatoes, chickens…” Dog gone it, let’s find the hundreds of genes to cure autism and then the economy will be well again.

I mean, isn’t this what it’s about? It’s certainly on our minds with the “fiscal cliff” just ahead. “Most children with autism are rejected by kindergartens and schools…staying home becomes the only option for a large majority of these children…by leaving them on their own, these children lose all chances of developing their potential talents that they originally might have,” reports Tanya from the Star.

Let’s break that down. Yes, access to schools is a big problem. The Supreme Court of Canada just ruled that public schools now have an obligation to accommodate to which The Globe and Mail editors reported would “bleed” from other programs. The Globe editors stated that the Supreme Court “overstepped their authority,” but I wonder if they would have said the same had the ruling be in favour of segregating children with special needs. After all, the Toronto District School Board just cut its special education programs and Educational Assistants as a cost-saving measure. Children with special needs are expendable. It seems children with special needs are a huge economic burden, or so think the Globe editors and a whole bunch of other people.

Next, I’m wondering about those talents, after all. The Star says that autistic children have “potential talents” that they might “originally” have. Is the writer suggesting that autistic people have talents if they were to become normalized or that autistic talents in and of themselves are not being nurtured and educated? Is the journalist accepting that autistic people have any talents or potential? If so, it would go against Globe Editor notions of talent and shall we say, productivity — so central to our epistemological understandings of shall I put it, the industrious person serving the economic well-being of the state.

Finally, and I will be writing more posts in response to The Star’s one-sided, unbalanced reporting so far, is this then the reason to cure autistic people; because it’s hard to get into schools? This for me is the most frightening absurdity of the article. It is the notion that the blame (and we’ve tried to blame mothers, and now it’s the old fathers), on the individual body. The onus is on our bodies to change, not on society to change it’s attitudes and systems to support autistic individuality and yes, potential — body-politics indeed. Further, the fact that we’ve exported this work to China where people are worked to the bone in huge factories, does nothing to soothe me or make me happy about finding the autism genes. It points so strongly to the fact that we have exported to China the creation of the great Newgenics machine, and we do it gaily. Think of China and sex selection and then to the issues that if say, autism is found to be more common in boys than in girls, that would make sex selection likely, okay.

I think that the autistic self-advocacy movement and allies have to do something much greater now . We are doing the hard work for sure, but these large spread gigantic projects without equal critical reflection makes me worried and I hope you are too. I think we have to gather to run a critical reflection campaign devoid of propoganda. We want society to not just see us and help us for who we are, but consider our rights to be who we are and to have assistance. First, we may wish to begin by using The Autism Project as a platform as the creators of the autism “problem,” not autistic people. Autistic people and families require a set of complex supports and understandings also because not every autistic person or family is alike. I would like to ask reporters to do a finer job of doing real, even emancipatory journalism and not spectacular reporting from a neurotypcial birds-eye view in the name of selling more papers.

Upcoming in The Toronto Star’s Autism focus will be topics on “diagnostic odyssey, navigating school, transition to adulthood, mothers on the spectrum, ageing with autism.” We’ll soon see how the stories are covered, and I’m sure there will be stories that we can all relate to. I want you to watch, however, for who and what will be blamed in order to solve the autism “problem.”

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.