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 
So happy to have you home. Thank you for your thoughtful post. “Know our understanding of what’s ideal constantly changes. Ideally one understands: to want a child is a desire without promise for sameness.” How brilliant are Emma’s words? Wow. Just wow.
Everything she says blows me away!
This guest poster of yours, Ariane…he’s a great writer. People should buy all his books forever, clearly.
Exactly!!
You may be onto something Ib.
Heart breaking thought… I’ve had an opportunity to meet a wide range of people with developmental and/or intellectual disabilities, and to form important friendships, and I just. Not just people like me are in danger from the thinking you describe, but people like so many of the wonderful people I’ve met and made friendships with. Not all via selective birth, but the impact is the same. All the sad.
Sad indeed. I was very impressed with that article about DS kids showing the world how awesome they are. A very good tactic I think. It shouldn’t be necessary but it is.
Well said Richard… and Emma too ♥
Thank you for this!
❤
Love this post Richard! The thought of eradicating these amazing beings, it deeply saddens me. The beauty in them, to not exist here, the consequences, ugh. Thank you and Emma both for bringing this to light.
I’m hoping more people read Emma’s words and watch videos of her writing. Maybe they’ll start to “get it.”
I hope so too.
A most worthy and intelligent post, Richard. Here’s to Hope with a capital “H” and acceptance, and to understanding that a person’s worth cannot be measured against a magazine cover photo. Love to you. xx
Back at ya Alex ❤
All I can say is I’m glad that at the time I was pregnant, the test didn’t exist. I almost certainly would’ve terminated the pregnancy. As you know, Risa actually has Rett’s, which is the most physically disabling form of autism. She has suffered a great deal in her life.
But I am convinced that, not unlike Emma, she has much to teach the world. We are still trying to figure out better ways for her to communicate. We don’t have a lot of money, or a ton of support, but we do everything we can in our power to make sure our beloved baby girl gets all the help she is entitled too.
I might not be in the exact same place as you guys yet, but it was most certainly Ariane who put me on the path. For that I will always be grateful!
I love this, and have two things to add:
1. At the end of the day, I find that shining light on how biased and socially constructed the supposed “ideal child” is manages to be the best and most responsible way of arguing against modern eugenicists. So I love that you brought that up. And that you clarified that the issue isn’t just that autistic people, or people with Down’s, are individually worth “keeping around,” but that no person or committee or research team possesses the “objective authority” needed to decide what kinds of people should and should not exist. Ever. Whatsoever. The danger of these “genetic cleansing” rhetorics is totally real, and carries such an absurd degree of weight (especially for people in scientific/intellectual circles).
2. (Pardon me as the science-studies and epigenetics nerd version of me takes over for a brief moment) I feel like, very confident in saying the following: the idea that there will be genetic tests capable of identifying non-monogenic disorders prenatally anytime soon is totally uninformed. By the way, when I say uninformed, I’m referring to whatever scientists you’ve heard say this, not to you guys, because like…researching developmental biology/genetics isn’t your job, it’s theirs. Seriously, though. I say this as someone who reads a huge, huge amount of research on the subject, not just as some random person who likes to look more informed than other people.
This isn’t to say that it’s wrong to be suspicious and worried that scientists will claim to have created these kinds of tests (because of course they will, and of course we should be up in arms against that kind of stuff). I just want to make clear that, at the end of the day, “science” isn’t in any way on the side of people who want to selectively abort disabled fetuses. I have lots of fun articles on this stuff that I’m always willing to share, in case anyone wants to be able to throw down in arguments against jerks who want to use science to oppress people.
I think one of the most difficult parts of discussing autism/developmental things is that, as awkward as it is for some people to admit this, there are “environmental” factors that influence development. That doesn’t mean that autistic-ness (in all it’s varied and complex facets) can’t be passed down through families, and it doesn’t mean that the “refrigerator mother” arguments from the psychoanalytic era will come back, or that everything is the result of environmental toxins or (god help us) the friggin’ vaccines. But it does mean that autistic-ness is not a singular, pre-ordained destiny–which makes sense, considering that autistic people are in no way a singular group with singular shared experiences.
(Science-nerd-Emma out! 🙂 )
Hi Emma, thanks for your comment. As another science nerd, I appreciate your viewpoint on “the test”, though I’m sticking to my guns with my conclusion/prediction. I have read numerous articles about recent discoveries (within the last year) where scientists have identified genetic markers that are “likely associated with autism.” And for the parents who would consider aborting their child if they learned there was a “high likelihood of autism” those vague conclusions would be enough to convince them to abort. Within five years time, I have no doubt whatsoever that more such markers will be discovered and at least one or two of them will be regarded as having “a very high percentage of likelihood in indicating that the child will be autistic.” What will the number representing a “high percentage” be? 90%? 80%? 51%? Unknown and probably irrelevant. No matter what the percentage is and no matter what the test parameters, people, being people, will interpret that data/conclusions in a manner that supports/justifies the decisions they want to make. If they are seeking perfectionism and can’t comprehend that autistic children are perfectly wonderful, they will make tragic decisions. See you back here in 5 years for confirmation/refutal!
I totally take your point concerning the role that general paranoia would play in these kinds of decisions, but I just wanted to clarify my point concerning GWA (Genome-Wide Association) studies and “likelihood” in behavioral genetics:
The “likely associations” described by studies that find potential “genetic markers” for different diagnoses are not causal associations, but purely statistical observations. So the “likely association” of a genetic marker with autism means that in the sample of autistic people tested, the incidence rate of that marker was greater than the rate in NT people tested to a statistically significant degree. The markers in question are almost always present in measurable percentages of the non-autistic population as well; the researchers are simply observing that the percentage of autistic people with the marker is unusually prevalent in comparison. And the overall number of autistic people (in research studies, and in general) is much, much smaller than the overall number of NT people (in research studies, and in general). Even if autistic people show a high rate of a given genetic marker, when it comes to the prevalence of that marker in the entire, autistic+NT population, the number of NT people with the marker will still be exponentially greater than the number of autistic people with the marker.
Along with most of the DSM diagnoses geneticists have been studying, autism is unequivocally believed to be highly polygenic/multifactorial (i.e. produced by interactions among a large number of minimally statistically powerful single genes). The number of different genes interacting to produce the complex autistic phenotypes is thought to be in the upper hundreds, potentially even above a thousand. And the overwhelming majority of those hundreds of possible contributing polymorphisms also appear in greater than 1% of the NT population (the 1% prevalence rate is actually how geneticists distinguish “polymorphisms” from much rarer “mutations”). Monogenic-type diagnoses like Down’s Syndrome are rare exceptions to the rule that genetic marker testing lacks the statistical sensitivity and specificity to distinguish people with a given diagnosis from people without that diagnosis.
To be clear, I’m not disagreeing with your point concerning the danger of eugenics and pre-natal testing–while virtually all developmental/psychiatric diagnoses with relatively high prevalence rates are known to be extremely polygenic, there are also a number of diagnoses which are either monogenic or nearly monogenic, and which are ever more rapidly being included in prenatal genetic tests. This affects autistic people, insofar as many autistic people are also people with other developmental disorders like Rett’s, or Angelman Syndrome, which are unequivocally affected by increased rates of prenatal testing and selective abortion. I just can’t help but want to show that the mainstream scientific/social authorities on developmental disabilities actively work to construct DDs as single, homogenous deviations that aren’t part of “normal” human diversity.
I much appreciate your engaging with my science nerdiness; I hope you’ll forgive a second absurdly long comment-response. I can’t help it, I swear. 🙂
And I totally appreciate your highly informed viewpoint Emma. I just feel compelled to point out that the true accuracy of an autism test is irrelevant to most of the people who would choose to get one during the course of their pregnancy, in the same manner that a false-positive test for DS would end up with the same statistical results as true-positive tests. And of course, I still maintain that within five years, “autism” will be much more specifically defined in terms of identifiable biological and genetic components (even if it ends up being defined as 20 or 30 separate conditions that are mislabeled collectively or separately as “autism”) and the eugenic threat will still be accordingly amplified UNLESS people have a sea-change in their perspective on perfectionist idealism and the related condition of self-centered assholism.
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As the father of three wonderful and beautiful now adult children I can only say that in my eyes and their mothers eyes: “They are perfect just the way they are.” When my last two were born the Dr.s insisted on an Amniocentesis because of my wife’s age and the concern of chromosomal damage to the eggs or maybe my sperm. My wife and I had a few long conversations about what we would do if the test revealed possible birth defects. We are both Catholics and thought about what we felt we could handle. We made the mutual decision that we would not abort under any circumstances. Not because we reject abortion but because we knew that we would love and adore what ever child that would be born. My daughter had Pituitary Dwarfism, and my son is ASD with reading disabilities. We could not be more proud of them or love them more. Our daughter was treated with HGH and is healthy and is 5’2″ in height. We had to make a decision about treatment for our daughter at the age of three so there was no chance to ask her what she wanted. I have wished she could have input into her treatment. She wrote a paper in her senior year about the condition and explained it. My son is ASD and learning disabled (reading). He is the best son I could have hoped for and we advocated for him for the best school for him. The Rebecca School and Dr. Gil Tippy. We never had to make the decision because the amnio was negative. But we are very happy and proud of them. What is perfect? It is so subjective.
That whole “perfect” thing is highly overrated. Thanks for sharing your thoughts dave.
Let me just create a quote in response to this article: “You don’t know what it’s like to raise a(n) Autistic child/child with Downs Syndrome until you’re doing it, and it’s only then that you are able to realise there is more opportunity for joy than suffering in it.”
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