This isn’t about the fetus anymore. This is a referendum on who we are: how selfish and hopeless, or whether we have grown up. This isn’t about the children, about their suffering or struggles. This is about what we have to offer, whether we have the capacity for selflessness. This time, it’s personal.
Within the last year, the discussion has started in earnest: What to do with the development of prenatal indicators of autism? Last January, news that Professor Simon Baron-Cohen of Cambridge University had developed a correlation between the amount of testosterone in amniotic fluid and autism sparked heated debate that continues. It is now well-known that karyotyping of cells in amniotic fluid is used to screen trisomy 21, with the result that 93% of Down Syndrome babies are aborted. Will genetic screening also be used to cull autistic babies? If it comes to pass, it will not be the silent holocaust of the Down babies.
The autism community of activist parents is large, loud, loving, and deeply committed to advancing our children. We are a force to be reckoned with. We are also a sign of societal evolution.
We have succeeded in destigmatizing , to a large degree, our children’s handicap. We have dragged the medical community, sometimes kicking, to an awareness of these children’s potentials and have helped forge new therapeutic paradigms that have yielded astounding fruit. With one of every one hundred-fifty children diagnosed on the spectrum, everyone knows someone with autism.
Like their cousins with Down Syndrome, these children are sweet and kind. They have much to offer. Unlike their cousins with Down Syndrome, these children’s prevalence arose in a more enlightened time, after the age of institutionalization, among parents better educated in the aggregate, sensitized to the fate of aborted Down babies. Even the Down babies benefit from the early intervention programming that has arisen mainly out of the autism community.
Twenty years ago, we simply didn’t know. We have evolved.
There are, however, powerful economic forces arrayed against those with autism. Speech therapy, occupational therapy, physical therapy, play therapy, special education, are all essential services in the successful treatment of children with autism spectrum disorders. Over 95% of these costs are carried by school districts that are being bankrupted in the process. The cost is necessarily shifted to homeowners through property taxes. Parents must fight like lions every year in many school districts to maintain their child’s level of services. All too often, unscrupulous school officials mislead parents, wear others down, in the attempt to reduce services to children because of budgetary constraints.
Then there is the fact that autism advocacy groups are spending millions on genetic research in the effort to find the cause, and hopefully a cure. Genetic disorders with a single gene involved are the best candidates for treatment. Most genetic disorders involve several genetic loci in combination. Early data on autism research point in this direction. Therein lies the potential for abuse. In the absence of a ready medical treatment or cure, there will be increasing pressures brought to bear on mothers to get tested and to abort.
But these children haven’t been sequestered in institutions, hidden out of fear, shame, or the inability to help secondary to a dearth of therapies.
These children have names and faces in our communities, attend school with our children, attend our churches. They are participating members of the family.
Why them? Why now? Why so many?
Has God sent them to save us from ourselves? To redeem us from the holocaust against Down babies? Are these children the prophets sent to assuage us from our bitter selfishness and despair?
I hope so. I’m blessed to live with one.
Gerard, do you think it’s possible, as in the case of Down’s, to isolate just one cause of autism, seeing that autism is so varied in its manifestations?
In dealing with students of mine over the years who have had Asperger’s, I have observed, even among this narrow spot on the continuum, a fair variety of dis/abilities.
My uncle, whom I suspect of having Asperger’s (it would explain his behavior and his sufferings) is dying in England right now. As I look at his picture, it is hard to keep from crying. What if they knew 80 years ago what we know now? Could he have had a much better life?
But the point is, they didn’t know then what we know now. The vexing moral issue for us as parents of these children (and, in my case, also 2 uncles I suspect of having it, and a brother-in-law) is this: What will society do with this knowledge? My poor Irish farmer grandparents did not know how to help my uncle, but they did try, because they loved him, and had the moral instinct that his life was worth living.
In Spanish, the phrase “Tree of Knowledge” is “Árbol de la ciencia.” Baron-Cohen’s work has been very helpful to autism sufferers. But to what uses will this latest discovery of his be put?
AP,
Happy New Year. Joseph responded (after much angst over what to say) to your post and the others on his page.
I doubt a single genetic locus in the case of autism. The manifestations are so varied. Also, we’re dealing with not only biochemistry, but brain anatomy and architecture.
Your Irish grandparents may not have had our knowledge, but they certainly had the most essential gift: Love.
Gerard, correct me if I’m wrong, but don’t studies show that autistic children are more likely to be born to older, more highly educated parents?
Well, if there is indeed a God I think he/she is very wise to have sent them to these parents in particular!!! They would be more lilkely to have the time and resources to provide for the child’s special needs and to push to find the cause(s), cure(s) and treatments as well as educate the public on what special gifts autism brings.
Joseph is a wonderful boy and you are wonderful parents!
Joseph’s reply was very sweet. I’m sorry if it stressed him out, but tell him for me I think it was very well done! 🙂
Thank God for screening of Trisomy 21. However, I wouldn’t rely on anything so nebulous as an appearance of correlation between some chemical level and some simultaneous condition. Autism covers a wide range of conditions, and I’m not even sure I trust the diagnosis either. I have a friend whose son reads five years ahead of his age, and school authorities are trying to tell his parents that this is a sign of autism. It may even be consistent with one possible symptom, but this and every other thing they are jumping on have perfectly happy explanations also. We should be careful about squeezing people into a box and expecting to have an exact definition.
Thank God for screening of Trisomy 21.
Why?
“Thank God” for being able to track down and kill anyone you consider inferior? What a horrible, horrible thing to say.
Especially considering the mothers that I know who loved their babies who were diagnosed with Trisomy 21 and were devastated to lose them. Have some compassion, honestly. That was such a heartless comment.
Siarlys, you are right, we should be careful about squeezing people into a box and expecting to have an exact definition . . . after all, they may be treated like babies with Down syndrome – and eliminated.
If you are going to be contrarian, difficult, and demeaning, well fine . . . but at least be consistent!
I am consistent, but the world is a very complex place, and I am unwilling to impose simple slogans upon it. They don’t work, because life throws simple slogans back in our face.
Bethany, one of the beauties of Roe v. Wade is that it protects your right to carry a pregnancy to term, knowing the child will have Down’s syndrome. I might think that is a very cruel thing to do. Some nanny-state social worker might lecture that it puts an unnecessary burden on society. You don’t have to listen, nor can anyone force a decision upon you. The choice is yours.
I know that you believe fully and unreservedly that the earliest fetal development is a human being as worthy of protection as any 25 year old. I know you believe that second trimester, or even first trimester abortion is killing a child for their illness. I don’t.
I have had a number of reasons to interact with people who have Down’s syndrome. I’m pretty good at coaxing ladies off the bus who have almost no apparent comprehension of the world around them, much to the surprise of group home staff, who are used to having to come get them themselves, because nobody else can handle them, or get a response from them. If they are here, I treat them with respect, and there are some I can treat with love — the ones who run up and give me a big hug and call me their buddy.
I believe that carrying a pregnancy to term, knowing the resulting child will have Down’s syndrome, is very very close to imposing the disease on a child. If the diagnosis is made early enough, one can start over, and bring a healthy baby into the world, instead of a baby who will have great difficulty coping with life. But, the fundamental difference is, I don’t believe what is growing inside the mother is an independent human being from the moment a zygote forms. I am quite capable of saying, no, that zygote is deformed, I don’t want my baby to grow from that zygote, any more than I want to inject my baby with smallpox or rubella or anthrax or tuberculosis.
I also believe our culture is far too infatuated with saying that ALL people with Down’s syndrome are “just like us.” They are not. In my state, group homes get funded for only part of each day, so EVERYONE has to be shoved onto buses and taken to day programs, then bundled onto buses and taken home again. Some of them are horribly disoriented by that well-intentioned process. All they want is to curl up in a corner in the sunlight and sleep. Oh no, say the social worklets, they must commute like the rest of us, so they can be like the rest of us. Please, let’s have some 24/7 facilities where they can do what they do best — have a predictable, reliable routine, and fall asleep in a sunny corner if that’s what they want to do. There is no one size fits all solution for anyone.
Bethany, one of the beauties of Roe v. Wade is that it protects your right to carry a pregnancy to term, knowing the child will have Down’s syndrome.
That right was protected before Roe. Why are you giving Roe the credit for that?
I might think that is a very cruel thing to do. Some nanny-state social worker might lecture that it puts an unnecessary burden on society. You don’t have to listen, nor can anyone force a decision upon you. The choice is yours.
Roe vs Wade didn’t give me that right! Roe vs Wade unconstitutionally took away rights of the unborn.
It gave no one any protection or rights. It gave women the license to kill.
I know that you believe fully and unreservedly that the earliest fetal development is a human being as worthy of protection as any 25 year old. I know you believe that second trimester, or even first trimester abortion is killing a child for their illness. I don’t.
And sadly, this is a belief that you have that is founded upon nothing but your feelings.
I have had a number of reasons to interact with people who have Down’s syndrome. I’m pretty good at coaxing ladies off the bus who have almost no apparent comprehension of the world around them, much to the surprise of group home staff, who are used to having to come get them themselves, because nobody else can handle them, or get a response from them. If they are here, I treat them with respect, and there are some I can treat with love — the ones who run up and give me a big hug and call me their buddy.
They are fortunately unaware of your willingness to kill them off for their disability. They are unaware that you have thoughts that they are less than human, and that not only are you not their buddy, you are their worst enemy, and do not even blink at the idea of them being killed because they are a burden in your eyes.
I believe that carrying a pregnancy to term, knowing the resulting child will have Down’s syndrome, is very very close to imposing the disease on a child.
No, the “disease” is already there, Siarlys. No one is “imposing” the disease on the child if they allow the child to continue living. However, if they have an abortion, that is when they are “imposing” something on the child – a death sentence.
Tell me, what if you had a child who was perfectly healthy, but contracted a disease that left him mentally retarded for the rest of his life. If you did not kill him, would you be “imposing” that retardation on him?
Would you just decide he wasn’t worth living anymore because he wasn’t just like you? How shallow is this world you live in, where everyone must be “perfect” or “like you” in order to be worthy of life?
If the diagnosis is made early enough, one can start over, and bring a healthy baby into the world, instead of a baby who will have great difficulty coping with life.
They will never be able to bring THAT baby back into the world. That baby will always be dead, because they killed it.
But, the fundamental difference is, I don’t believe what is growing inside the mother is an independent human being from the moment a zygote forms. I am quite capable of saying, no, that zygote is deformed, I don’t want my baby to grow from that zygote, any more than I want to inject my baby with smallpox or rubella or anthrax or tuberculosis.
There is a huge difference between GIVING your child an illness, and ACCEPTING your child with whatever disability, illness, etc that he/she has. HUGE.
Do you think that Gerard imposed autism on Joseph? Do you think that Joseph should not exist today?
I also believe our culture is far too infatuated with saying that ALL people with Down’s syndrome are “just like us.”
Why should they HAVE to be “just like us”??
My goodness, Siarlys, ALL humans are UNIQUE and DIFFERENT, but are also EQUAL, in that we are all human beings!
I don’t think that a baby with Down’s syndrome is “just like me”. but guess what? My own children are not “just like me”. My husband is not “just like me”. You are not “just like me”. What is “normal”? What is “perfect”? You tell me. Blond haired, blue eyed, with an IQ of 150 or higher? Marathon runners? Muscular and strong? Tell me, S, what is perfection?
I accept ALL people for their differences. If you were to get into a car accident today and were disfigured for life, I would not think of you as a lower form of humanity. I would treat you as the human being you are. You would, however, look at me in such a way if it were to happen to me. You would look down at me and wish that I could be removed from the earth so that I wouldn’t have to be a burden to you!
Oh no, say the social worklets, they must commute like the rest of us, so they can be like the rest of us.
Please, let’s have some 24/7 facilities where they can do what they do best — have a predictable, reliable routine, and fall asleep in a sunny corner if that’s what they want to do. There is no one size fits all solution for anyone.
That is YOUR logic at work, Siarlys. Those who are pro-life recognize that people are different and will not always be exactly the same. They allow people to live their lives in the way that they were designed to live, and they accept them with their differences. Those who think they have to conform these people to become “just like us” are the people like you, who believe that anything different than you is not good enough.
You state that it’s costing school districts money to maintain autistic children… well, surely that’s just an arguement to abort autistic foeutuses? A utilitarian perspective might say it’s better that children get textbooks rather than one child have the same level of resources required poured on him in a vain attempt to try to inspire homogenity.