As shocked as I was that Emma brought up the topic of eugenics, it also seemed completely “expected” in the sense that Emma has frequently written about similar issues regarding parenting and autism. In many of her previous writings on the subject, Emma has sought to ease the fears of parents after their children are diagnosed with autism. With this conversation, it becomes more clear as to why she feels so highly motivated to show parents that an autistic mind is a wonderful mind and the prospect of having an autistic child could just as easily be looked upon as a “blessing” rather than a “curse.”
It is literally a matter of life and death.
I have no doubt whatsoever that tests will be created that can determine (with at least a reasonable amount of certainty) whether an embryo will develop autistic (or autistic-like) neurology. Having just returned from a weeklong conference on neurology and consciousness studies, where I listened to over 100 lectures by the top scientists in the field, I also have no doubt whatsoever that such a test will likely be developed within the next five years. The technological advances in this area are occurring at such an exponentially swift rate that it would be ten times more shocking if the “autism test” were NOT developed.
I have equal certainty that once a test like this is developed (particularly if it is a non-invasive blood test, which is also highly likely) that the results will be horrifyingly similar to what has occurred when fetuses test positive for Down Syndrome (DS) — a 90% abortion rate.
If you’ve ever spent a decent amount of time with a person with Down Syndrome, and you’re a reasonably intelligent, kind and compassionate person, you fully understand what a horrific disaster this is. When the “autism-test” becomes available–and it will–an equal disaster will likely occur, if we don’t effectively get the word out that autism is not to be feared, but should instead be embraced.
Here is a good article I just found on the topic and points the way to a more organized manner to produce and publicize an awareness campaign to counter the eugenics tragedy, in the absence of a more positive attitude toward autism and autistic people.
Very unfortunately, we live in an increasingly perfectionist society, particularly in America. Any American woman knows how difficult life became for her as a little girl, once she became aware of what society deemed: “the ideal woman.” Now little boys have to push the same boulder up the same hill, trying to get a stud-muffin six-pack hot-bod. Just look at the cover of any magazine that features any human being that is not part of a straight-news story.
It’s hard to be optimistic about the outcome regarding eugenics. People, being people, want the “best for their children.” And the “best” that’s being shoved down people’s throats is an impossible ideal. So wanting the “best for their children” often translates into wanting the “best children.” Depending on your cultural affiliation, the “best children” might mean tall, slim, blond hair and blue eyes. Or it might be highly intelligent, hard-working, caring, athletic, wealthy, powerful, dominant, sexy, persuasive, cunning or ruthless.
Perhaps all those traits will become “genetically selectable.” Will parents do it? Absolutely. How many? Lots. Will laws be imposed to stop them? Perhaps. Will those laws be broken? Absolutely. The big questions aren’t: “if” or “should you?” They are: “when” and “how much?” And with Autism Speaks sucking up 80% of the public discourse bandwidth, the generally accepted definition of “best children” continues to be: “children who are not-autistic.”
It’s hard to be optimistic about anything anymore. Like whether your children will ever see a living coral reef. But if you care, you have to try, and we really have to try very hard, and very quickly if there is any chance at all of turning the tide.
Emma’s Hope Book began as a search for “hope” in “helping” Emma to be a less-autistic person. It’s shameful for me to write that, but it’s the truth. Thanks to Ariane’s tireless quest to learn more about autism, she discovered the blogs of autistic people and suddenly our perspective shifted completely. Now Emma’s Hope Book is about hope with a capital H, not in air-quotes. It’s about the Hope of understanding and acceptance and respect and basic human rights. It’s about the Hope of reaching parents with children who are newly diagnosed with the “disease” or “disorder” of autism and suggesting an alternative perspective, so they may embrace and treasure the gift they’ve been given–and prevent the countless trauma-inflicting mistakes we made while we listened to the “Cure Autism Now!’ crew. It’s about the Hope of reaching the parents of autistic children who have already made many of the mistakes we’ve made and show them the power and beauty and wonder and joy of true acceptance–of learning that it is never too late to change–of learning that every day and every moment of every day counts.
Most importantly, Emma’s Hope Book is about the Hope of changing the world one person at a time through the kindness, compassion, joy, creativity, intelligence, insight and wisdom of Emma and all the autistic people like her (and unlike her) who share their thoughts, feelings, fears and hope with anyone who is willing to open their minds and listen:
“Know our understanding of what’s ideal constantly changes. Ideally one understands: to want a child is a desire without promise for sameness.” — Emma Zurcher-Long
Emma's Hope Book 