Has Our Autism Doomsday Arrived?
Filed Under (Activism, Advocacy, Discrimination, Ethics, Research, autism) by Estee on 10-06-2010
We knew there were genetic studies on autism. We knew this was coming. Perhaps a better title for this would be “for every downside, there is an upside.” This is could be very true about the Human Genome Project.
Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”
Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”
Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?
Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.
As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.
In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.
Another discussion that may help our own:
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
Oh!
:(
But they are too early! (http://www.ventura33.com/clock/)
:( :( :( :(
Thanks for the videos. I look forward to watching them.
Last night I spent an hour and a half listening to this lecture on “Eugenics, Race, and Bioethics”, given by Dr. Glenn McGee.
I highly recommend it when you have the time. He touches on issues of genetics, and how we are rushing blindly forward without stopping to consider what we are doing.
Joe
Thank you, Joe. I’m definitely going to look at it.
I think that our family was very lucky that we didn’t have a ‘test’ for autism when I was pregnant- I was already scared enough by triplets, and I’m pretty sure that I wouldn’t have carried a pregnancy to term if I’d known that we’d also be dealing with autism (at that point my only exposure to autism was Rainman, when I still thought that Kim Peek was autistic).
I would have had no information to make an informed decision on, and I am glad every day that I didn’t know beforehand, as I wouldn’t trade my kids for anything.
As parents who don’t think that autism is the end of the world, we need to be talking to the CMA and the Society of Obstetricians and Gynecologists to get real information about autism available to expectant parents, and to be incorporated into their ‘best practices’ guidelines. It can be done. After my triplets were born in 1995 groups like the Triplets, Quads, and Quints Association (now part of Multiple Births Canada), the Triplet Connection, and Mothers of Supertwins in the U.S. were able to get enough information out to obstetricians that couples were able to make informed decisions about reducing pregnancies to an ‘acceptable’ level (when my kids were born, reducing pregnancies from triplets or quads to twins was seen as the most acceptable option).
We can do whatever we like online, and follow our own agendas. But a prenatal test is coming, and if we can, we’d be very smart to already be laying the groundwork so that when an expectant couple walks into their doctor’s office, they don’t only have horror stories on autism to confront them.
@Jen: I totally agree.
This, put together by Dr. Judy Badner at the University of Chicago in the late 1990s, is still relevant:
http://psy-pc120.bsd.uchicago.edu/~jbadner/autgen.htm
I must tell you it is a joy to read your blog & your view of autism. When my son was diagnosed at age 5, I was referred to a geneticist that treated many kids with autism. Private insurance did NOT cover it, so we paid out of pocket for the visit…public insurance DID cover it. The doctor was a great guy, but after a two hour discussion he told us “you know, I’d probably be diagnosed autistic if I was a child today…”. The longer we spoke, the more I could see the similarities w/my son. He sent us to get some labwork done on my son…We never returned or did the labwork. For a minute I thought, “he is right…he WOULD be diagnosed…and what exactly is this labwork going to tell us? He’s a geneticist…will the lab be keeping my son’s DNA? Could that affect him later on?”. So I decided to follow my heart…I read about therapies, crystal children, natural schooling, biomedical issues, etc…and I took what made the most sense for MY son…after all, I’m w/him 24/7, I do know him best. My son has flourished! It’s been 4yrs of hard work, but not 4yrs of “therapies, doctors, there’s something wrong with you, we have to fix you…” and I honestly believe more of US need to speak up against parents constantly talking about how horrendous autism just to get some free govt money, svcs and sympathy…or soon enough there will be women aborting autistic children because of the fear propaganda out there…