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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, August 16, 2007


Wanted: Perfection

You can find this article about "getting rid" of Down Syndrome people as quickly as possible. I decided to post this as Adam is playing today with his friend down the street, who is "Downs." The other friend has another neurological issue. They are really wonderful kids, all of them just returned from different camps and find themselves in need of play on this hot summer day.

I find it disturbing that we have this trend, no less in "The Economist," where I suppose, the financial factor is critical to assessing human value -- the 'who costs more' issue. If you're special needs, you're in for trouble:

Pre-natal testing

Wanted: perfection

Jul 5th 2007 | PHOENIX
From The Economist print edition

Doctors try not to be sued over Down's syndrome babies

BUSINESS is brisk at Phoenix Perinatal Associates, a practice for high-risk pregnancies in Arizona. “We are solidly booked for months,” the receptionist sighs. Part of the rush comes from new guidelines published on January 2nd by the American College of Obstetricians and Gynaecologists (ACOG). These urge that all pregnant women, regardless of age, should be screened for babies with Down Syndrome.

Only women over 35 have a high risk of producing a Down Syndrome child. They have been screened through blood tests and ultrasound scans, then with amniocentesis or chorionic villus sampling (CVS), in which cells are taken from the developing embryo. Younger mums have been screened too, but in their second trimesters and only with blood tests. The new recommendation is that all women be screened at the 20th week, using the same tests; and many women are being pushed to have them earlier.

Many like the idea. The tests will be more accurate (amniocentesis has a 99% accuracy rate), and will give women more time to decide what to do. It makes sense to test under-35s: 80% of Down's syndrome babies are born to younger women, because their fertility rates are higher. But others find the changes unsettling, and with reason. Both amniocentesis and CVS tests carry a slight risk of miscarriage. And roughly 80% of women testing positive for Down's have abortions.

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynaecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. “If more tests reduce our risks, then so be it.”

To advocates of the 350,000 Americans with Down's syndrome, all this sounds disturbing. Jon Colman, the chief operating officer at the National Down's syndrome Society (NDSS), notes that although many of them are born susceptible to heart problems, hearing loss and respiratory problems as well as mental retardation, most contribute to their families and communities and all are entitled to lead productive, independent lives. Down's children, many parents say, are delightful to bring up. And most do not die in their 20s, as Americans tend to assume, but can hope to live into their mid-50s.

Back in February, the NDSS challenged ACOG and others to make common cause with Down's syndrome organisations to give parents better information. They also urged doctors not to push expectant parents into prenatal testing, or towards abortion. But monitoring a more restrained approach might be tough. Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

Asked what his goal was, one genetic counsellor in Phoenix replies: “To catch as many Down's babies” as he can. But with such eagerness, much could go wrong. Academic research suggests that around one in 100 40-year-olds produce Down's syndrome babies, but many Arizona clinics cite a figure as high as one in four. “There must be a regulated message,” says one 40-year-old new mum in Chandler. “And even then I would question it.”

I would love for every genetic counsellor to reassess "perfection" by reading my short story "The Perfect Child" in the book, Between Interruptions. Perfection and imperfection, are in the eyes of the beholder. I never had an amniocentesis, even though I was of the age to get one when I was carrying Adam. I chose not to. I chose to take whatever I got. I believe in the right to choose. I also believe in the dire need for education in terms of what joys, mixed in with those challenges we hear about much more often, can come with having special needs children. I can't imagine, as Krista Flint of The Canadian Down Syndrome Society has reported many times "a world without a Down syndrome person [or autistic person, or cerebral palsy person or whatever] in it."

I would love for our Autism Society of Ontario and Autism Society of Canada Executive Directors say the same thing for autistic people. As confidently. As boldly.


Blogger r.b. said...

How very true, the world seems to want to be rid of atypical children.

Before Ben was adopted, we said we did not want a behaviorally disordered child, because we didn't think we could "handle it". Some might consider Ben that now...but life brings with it wisdom.

We do have to get the word out there of how much we love our "special children" unconditionally, and how there is not enough money in the world to change our minds.

You started, girl, with "The Joy of Autism". Congratulations on the book. We, here, could write a book about the JOYS of having a special needs child and get it out there so everybody doesn't think it's one big pity party.

2:37 PM  
Blogger Joseph said...

Nearly all autism societies and associations could learn a lot from their Down Syndrome counterparts. The language they use is like night and day.

6:35 PM  
Anonymous farmwifetwo said...

I never had the testing either. I had no intentions of having an amnio b/c I didn't want the risk of losing the child. The blood test wasn't correct unless you knew exactly what day it was in your term.

Also, if it was just genetics, why don't I have 2 children the same. I am still certain high bp and pre-natal care (different for both)... made the dx's different and no amount of screening would have changed that.


8:39 AM  
Blogger VeiledGlory said...

Every time I see this type of article I feel so sad that parents would want to act that way. My parents were told I had downs from an amnio test. They decided to keep me based on religious/moral beliefs. Turns out I didn't have downs but I am now just being assessed for AS as an adult. Glad to be here on earth and slightly less than "perfect."


1:21 PM  
Blogger Suzanne said...

veiled glory, I'm confused. Are you sure it was not the AFP test? That is not a reliable indicator. The amniotic fluid is used to create a karyotype. A karyotype is an organized profile of a person's chromosomes. In a karyotype, chromosomes are arranged and numbered by size, from largest to smallest. This arrangement helps scientists quickly identify chromosomal alterations that may result in a genetic disorder.This test was also performed on my Ezra to rule out FragileX. There is sometimes "mosaic" trisomy21 where it does not effect all the cells, and normal intellectual development is possible.
Someone more scientific help me understand, please. Can a karyotype be wrong?
and Estee, did you deny my other comment because of the link? or did i not send it because i can't deal with word verification. sigh.

3:28 PM  
Blogger Estee Klar-Wolfond said...

Try the comment again. I did not delete any comments, so it must have been the word verification. If you go too fast, you delete your own comment (it's happened to me).

3:33 PM  
Anonymous mimi maman de 2 said...

While pregnant with my second child, knowing my first born was more than likely autistic, we found out the baby had "spots" on his brain wich might indicate Downs syndrome. Me and my hubby discuted our options if they ask for further testing and came to the conclusion that no matter what we would keep the baby (no other "deadly" anomalies where seen everything else was "normal"). Happily, everything was ok. I think it is a (I'm looking for the right words in english...) having different types of brains, of people, of disabilities is and will always be a plus for sociaty. If people don't learn to accept differences communauties will fragment even more.

I am for testing for "deadly" genetical (not sure of the correct word) diseases. Defects that mean that the child has no chance at any quality of life. But otherwise, it is not better than racial profiling, in my opinion...

9:21 PM  
Blogger Suzanne said...

my other comment was mainly that we did get amnio after other signs pointed to Downs. In hindsight, it wasn't worth the risk. We would've known soon enough. Of course, I'm aghast at the selective termination stats.
I don't remember what else I said, except this bit of shameless self promotion, of the joys of my life.
What? They're not perfect? I'll just paste the URL, rather than try to write in the link

8:42 AM  
Blogger Joseph said...

Also, if it was just genetics, why don't I have 2 children the same.

Because genetics doesn't work like that. I hear that when couples have more than one child, they are rarely the same.

10:57 AM  
Anonymous Anonymous said...

Thank you for the very thought-provoking post, as usual.

I don't mean to nitpick, but the proper term is "Down syndrome," not Down's or Downs Syndrome.


11:43 AM  
Anonymous farmwifetwo said...

I know genes don't work that way.. but you can't read genetics under a microscope and prove that "this or that" will or won't happen.

Look at my boys and the diffences. Look at and her daughter with Charge (think that's correct) syndrome. Not perfect but a miracle compared to what they were told would happen.

What's the point in having kids if you aren't willing to "roll the dice". Even if you adopt you cannot guarantee that child won't come down with cancer.... etc.

Next do we refuse children with certain genetic predepositions to cancer etc. Like the child down the road from me, who's Aunt's and Mother all died in their early 40's from breast cancer.

IMO, it's a very slippery slope...


8:35 PM  
Blogger Estee Klar-Wolfond said...

Hi Karen,

Believe me -- I am in need of editors as I write! Thank you and I've hopefully made the changes where applicable.

1:01 PM  
Blogger Ian Parker said...

Hi Estee,

You wrote: "I find it disturbing that we have this trend, no less in "The Economist," where I suppose, the financial factor is critical to assessing human value -- the 'who costs more' issue. If you're special needs, you're in for trouble:"

I don't think The Economist is advocating "getting rid" of Down Syndrome people or anyone else, but is instead reporting the story in a balanced (perhaps even cautionary?) manner. If anything, they indicate that "others find the changes unsettling, and with reason", with one of the reasons being the abortion response to positive results. They also discuss the position of the NDSS, challenged a couple of incorrect but probably widely held assumptions about Down Syndrome, included some positive information, indicated that some women feel they are being 'badgered' to take the test, and ended the story on a cautionary note. At no time did they indicate any judgment on human value (financial or otherwise) or raise the issue of potential costs of a Down Syndrome child.

I find The Economist to be pretty reasonable in its writing about subjects such as diversity, Down Syndrome and autism, despite an occasional slip-up in their choice of words (as distinct from content or message) on the latter. I've been a subscriber for decades, and can't recall seeing The Economist ever assess or judge human value in financial terms or based on 'who costs more'. Based on their editorials I would instead suggest that they are one of the more 'enlightened' publications out there, despite the name.

FWIW, 'we' were flagged by the AFP, but also rejected an amniocentesis, deciding that we would be also be happy with a Down Syndrome child - something I wrote about here a while ago as part of some thoughts on genetic testing.

6:08 PM  
Blogger Estee Klar-Wolfond said...

Hi Ian,

Nice to see another Ontarian on the blogs. Read Patricia E. Bauer's comments on the media's "choice of words." I do think that the media has to go under some scutiny in this area. Without our pointing it out as to their choice of words, and articles, there might never be a balance.

Keep in touch!

9:37 AM  
Blogger Estee Klar-Wolfond said...

Actually, Ian, I believe we have's just been quite a while!

9:43 AM  

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