Prenatal Genetic Testing: Preventing Disability? Accepting Human Diversity?
……….[A]s prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
So states an article, Prenatal Test Puts Down Syndrome in Hard Focus, in the May 9th New York Times. About 90 percent of women who learn that they will have a Down syndrome child have chosen abortion. The population of those with Down syndrome is “dwindling” (it is now about 350,000); about 5,500 children are born with Down syndrome in the US.
The New York Times article notes that some parent advocates are working to present a positive view of life with a Down syndrome child:
Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.
They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.
Go here to see a video of 1 1/2 Sophie and a preschool-aged Troy (whose mother notes that, of her three children, he is the easiest in some ways).
As I wrote back in March, “the notion of a prenatal genetic test for autism brings with it the possibility of expecting parents finding out that their child-to-be has autism, and of the parents choosing not to have the child—-of eugenic abortion.” In the video, Sophie’s parents note that it was their visit with a family who has Down syndrome that helped them decide to have her. Their experience underscores the important of putting out positive views of what life with a disabled child can be.
A second video is about older children with Down syndrome and features a parent advocate in Michigan who gives presentations to obstetricians and genetic counselors at local hospitals about what life with a Down syndrome child is. She notes that many doctors last see kids with Down syndrome when they are babies and hence are not as aware of the persons they grow up to be.
The experiences of this mother and the other parents featured in the New York Times article and videos say a lot to me as the mother of a disabled child. Before my son was born, I knew almost nothing about autism and what I knew of it was that “it” was some terrible, devastating, disorder that was best not spoken of. When my son was diagnosed, life for an autistic child, adolescent, and adult was conveyed in gloomy and negative terms, with limited prospects—- Charlie might be able to have “vocational training” and live in a “group home,” words which were given ugly associations. Life with Charlie is not easy and is different from what we might have expected, and every moment of it is worth it. The tough moments are tough but I prefer never to imagine life without Charlie—that is not a possibilty. Like the parent advocates of children with Down syndrome, I feel called to put forth affirming representations of autism and of being the parent of an autistic child, and this work comes easily and naturally.
I now see vocational training and group homes as new experiences that Charlie will have some day and sooner, as he gets older. A disabled child growing up is often described in terms of fear and worry; our life with Charlie has plenty of question marks. I have only to think about my boy, to hear about the experiences of another autistic person, and I know that the world would be a poorer place without them.
It has recently been suggested that, while life with an autistic child is not a death sentence but, nevertheless, a “life sentence“. I do not think that referring to life raising an autistic child as any kind of “sentence” is to the benefit of autistic persons. Life with an autistic child is an unexpected gift and it is up to us to make the most of it.
“As we begin to filter out what we perceive as genetic imperfection, are we prepared for the consequences?” New York Times reporter Amy Harmon asks at the end of the video on older persons with Down syndrome.
I have considered this question before here: If you had known your child would be autistic before he or she was born, would you still have had your child? Consider this too: If there were a prenatal genetic test that could absolutely determined that you would have an autistic child, what would you have liked to have known about autism?
20 opinions for Prenatal Genetic Testing: Preventing Disability? Accepting Human Diversity?
mcewen
May 9, 2007 at 11:01 am
‘it is up to us to make the most of it.’ - and you do. [so well]
Best wishes
melody
May 9, 2007 at 11:48 am
“Life with an autistic child is an unexpected gift and it is up to us to make the most of it.”
This says it all. My AS sons are by adoption. Although autism was not in their dx at the time of infant adoption, they had other problems. I cannot imagine my life, the world without them. They do and will teach so much to people blessed to encounter them in life.
I shutter at the thought of how fickle humans can be with human life.
Julie
May 9, 2007 at 11:55 am
I can not imagine my life without my daughter or any of my children for that matter. I fear that it is a step towards saying that a child now has a closed head injury so I do not want them anymore. We love our children for who they are and how they are imperfections and all. Lets face it they love us even with our imperfections.
Kristina Chew, PhD
May 9, 2007 at 12:18 pm
I can do it thanks to knowing a lot of others think the same!
Joe
May 9, 2007 at 12:28 pm
For some of us the question is easy. I wish that there had been more information available when I was a child, and that I’d been given more tools to be able to succeed more when I was younger. On the same note I’m quite happy that there was no test, no one pressuring my mom to abort me. I’m happy, healthy and successful, yet I’d have shown as autistic on that test, and they would have given my mom a different idea of what I might become, an idea that is no where near what I have become.
I can say that if there had been a test for my son and they had told us about it, odds are I would have looked at them and said, “You just described me. What’s so bad about that?”
HeroicLife
May 9, 2007 at 11:57 pm
Choosing to have a retarded child is a moral atrocity. There’s no way to get around the fact that Down syndrome causes suffering in everyone involved. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children’s suffering to everyone else. They should be named for what they are - evil.
Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want your children to suffer their entire life? Only the religious dogma behind the hypocritical “culture of life” is capable of sinking people to this level.
HeroicLife
May 10, 2007 at 12:28 am
Choosing to have a child with severe mental and physical problems is a moral atrocity. There’s no way to get around the fact that Down syndrome causes suffering in everyone involved, especially the child. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children’s suffering to everyone else. They should be named for what they are - evil.
Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want children to suffer their entire life? Only the religious dogma behind the hypocritical “culture of life” is capable of sinking people to this level.
Julie
May 10, 2007 at 7:41 am
There’s no way to get around the fact that Down syndrome causes suffering in everyone involved, especially the child. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children’s suffering to everyone else.
This is soo not true. I grew up with a cousin who has downs syndrom and we never felt like we were suffering and burdened and thankfully for him neither did his parents. He is one of the most loving and compassionate people that I have ever met and could not imagine life without him. The same can be said about my daughter. The autism is so much a part of who she is I could not imagine her any other way. Fortunately for me and my familiy we do not feel burdened by each other nor are we suffering because we know each other. I also do not feel that I am a monster because I love people for their diversity and appreciate their differences.
Kathy
May 10, 2007 at 10:31 am
Listen HeroicLife, my sister-in-law has downs syndrome, and she is one of the most happiest fun loving people in the world.
Far from being a burden, she has been a shining light in our family.
Since my father-in-law died Cassie has been a rock for her mother, and the rest of the family.
Apart from being loving and thoughtful, she has a wicked sense of humour to boot.
And of course I would accept any child with love, from God.
Whether a child lives, or dies..
Well… I am afraid, the decision is not mine to make.
You well know my stance on this Kristina.
I could have chosen to abort(murder) my unborn child who was suffering from a neural tube defect.
But God Gives and God takes.. The choice was not mine to make.
Acceptance= Peace..
Kathy
May 10, 2007 at 10:43 am
Now that I have calmed down a little , I wish to congratulate you Kristina , on a very timely and thought provoking post.
” Life with an autistic child is an unexpected gift and it is up to us to make the most of it.”
Pearls of wisdom indeed!
Joe
May 10, 2007 at 2:06 pm
HeroicLife,
How do you know that a fetus is not a child? Can you prove that? Do you have science to show that the brain is not active, or that the heart is not pumping? What about when the eyes open?
And how is it anything other than fearmongering to lay all the blame for something on one religion? (One that I don’t practice by the way.)
I am happy, and I’ve not been a burden on anyone, nor is my mother a monster for having me. And honestly I don’t think she’d have changed her mind if someone had told her there was a chance I’d be autistic before I was born. But people like you would have pressured her to not give birth to me, just because I “might” be lots of trouble.
Remember, pro-choice is about choice. If you are pro-choice then you have to accept it when someone chooses to have a child, even if they are choosing to have a child that will face different challenges than those that you consider normal or acceptable. Because ultimately it is their choice, not yours.
Just because you suffer when having to deal with those of us who are different from you does not mean that everyone else suffers because of us.
Ballastexistenz
May 10, 2007 at 9:33 pm
Heroiclife, the moral atrocity is views like yours that make it very clear you would rather that neither I nor just about anyone I’m close to should exist, that our existence itself is a moral atrocity to be prevented at all costs. That is called eugenics, what you are doing is called hate speech, and it is certainly far more vile than the fact of the existence of certain kinds of human beings who clearly make you way too uncomfortable (poor you).
Kristina Chew, PhD
May 10, 2007 at 10:38 pm
It is true that some things—talking—-are harder for my son Charlie. It is also true that we have learned how to communicate with him in ways that are the easiest and best for him. I also think it would be presumptuous of me to simply state that my son is “suffering” — he has had to learn different ways of managing the world and much has to be learned by him than many simply pick up without direct teaching. He has completely changed and enriched my life and being—I would suffer terribly without him.
Em
May 11, 2007 at 12:57 am
I’m not even going to comment on the whole idea of eugenics right now because there’s no way that I could phrase what I’d say in a nice manner.
Moving on… with a paraphrase of a quote, all you have to do is decide what to do with what’s given to you (quote adapted from Lord of the Rings). Yeah, dealing with autism or with an autistic person is difficult, but it makes things all the greater if you actually persevere and do well in the end.
Kristina, we need more parents like you in the world. We need more parents who have children with disabilities and handle the situation with a fair amount of grace, good humor and, most of all, maturity.
-Em
Kassiane
May 11, 2007 at 1:04 am
No one has adequetely explained to me what’s wrong with people with Down Syndrome…much less what makes having an extra chromosome a capital offense. I have, however, never met a single parent who regretted chosing their child with DS, and have heard about adults protesting prenatal screenings. And good for them. If they don’t feel they’re better off dead then…well…I stand with them. Just like many DS adults have stood beside me on issues surrounding autism.
There is no such thing as a wrong child. And in my opinion if you want a kid, you want the child you make, lumps and all. If you only want a “perfect” kid than frankly you aren’t mature enough to be a parent. The last time people tried deciding who was and was not worthy of life the deciders got declared war criminals.
Autism Vox » Bullying, Ashley X, Eugenics, and One Celebrity Reference
May 11, 2007 at 1:52 pm
[…] comments on embryo eugenics in regard to Britain ordering a clinic to weed out embryos with a squint (see Telegraph.co.ul) and also in regard to families of children with Down syndrome advocating against abortion; […]
Autism Vox » Responses to NYTimes article on Down syndrome
May 12, 2007 at 9:02 pm
[…] on persons with Down syndrome and their parents, and the questions faced by parents today due to prenatal genetic testing. If you are like me and know, as one commenter wrote, that our autistic—-our […]
Seven Jay
May 14, 2007 at 12:59 pm
With all of the rhetoric over abortion rights, it’s interesting that there is little national debate over the ethics of genetic screening. Maybe it’s because people have already voted with their feet. Republican politicians may whip up a frenzy for their right-wing Christian constituency, but I’d be surprised if their 2008 nominee makes a statement along the lines of: “We must stop this genetic screening and murder of babies. Parents should be prepared to take care of their children no matter what. If I am elected president, I will do everything in my power to imprison those who would kill their children just because they may have cystic fibrosis, Down’s Syndrome, severe autism, or any other condition”.
I guarantee that would not play with the majority of voters.
Julie
May 14, 2007 at 1:37 pm
It feels like a slippery slope into disposing of any child that is not what we expect. What if someone wanted a boy and got a girl would it be considered okay to abort the pregnancy. I could not have imagined what it would be like to have a daughter with autism. How much I would not mind the extra work and care that she demands and the emence love and respect I have for her. There are times I wish that things were easier for her, but I am so proud of all that she has accomplished and look forward to helping her overcome more. She has taught me so much about the strength of the human spirit and my life would not be as fullfilled without her in it. I know my Aunt and Uncle would say the same about my cousin with Downs syndrome. We are not monsters for wanting and loving our children the way that they are, we are just parents trying to do the best that we can for them.
Autism Vox » Infants and Autism and Education
May 18, 2007 at 11:13 am
[…] glad to know about Charlie’s being autistic as early as might have been possible—via a prenatal genetic test (and such may well be likely some day)—so that I could learn about what to expect as the […]
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