Shh...Mum is Thinking

Friday, July 07, 2006

Protest Against Prenatal Testing

I'm sure over the past few years many of us have worried about the idea prenatal tests for autism, but for me at least, the concept seemed something that could only happen in the remote future...something to be concerned about, but hopefully would never come to fruition.

Well, the days of hoping this would never become fact, it seems, are coming to an end. There are already reports of prenatal tests for autism, and though they seem to be rather inaccurate at the moment, I'm sure it's only a matter of time before they're 'improved'. It looks like we're one step closer to the day when, as is stated with a look of longing by a mother on the "Autism Everyday" video, "I know that science is making great breakthroughs, and my hope is that by the time (her non-autistic child) is ready to have a baby we'll have a cure or we'll understand how to prevent autism."

A couple of years ago, my son and I travelled far from home to visit a medical specialist we don't have access to in our area. We spent a few days at a Ronald McDonald house while there (a really positive move, by the way--if you're ever in a similar situation, I highly recommend trying 'the house'), and while there we became acquainted with a young father and his son. The little boy, 6 at the time, had Downs syndrome, autism, and a heart condition. I was so impressed with this dad as we chatted about our kids. He was so obviously in love with his little boy, so matter of fact about his difficulties, and so very proud of his accomplishments. When I (panicky, overprotective mum that I am) saw his little boy was having a hard time getting down from the tall rocking horse that my own son couldn't dismount alone, I rushed over to give him a hand. The little boy put his hands out at me (Stop! I can do it myself!), pushed himself back over the rear of the horse, and slid down the back supports, wrapping his little feet monkey wise over the wood for grip.

I laughed to his dad--he's so independent! And look how well he communicated his intentions to me so clearly. The father, quietly proud, told me how he and his son often went out to climb rocks on a mountain close to their home; that his little boy loved climbing on things above anything else. And, yes, though mostly non-verbal, his son was learning sign well, and was able to combine that with his words to get most of his needs met easily. I was impressed with the down to earth attitude of this father, his willingness to accept his child’s differences, and look for strengths in areas others might have missed.

We talked for awhile, killing time while the children tore through the playroom toys and awaiting our appointments. What stands out in my mind about that conversation was the process of acceptance he went through in dealing with each of his son's difficulties--Downs syndrome, he said, was obvious at birth with his son, so it was fairly easy to come to terms with that. As he grew and autism became evident, that again, was difficult at first, but you learn about it, adjust and move on. The one thing, he said, with great emphasis, the ONE THING he found really hard to deal with was the heart condition. He said simply "We love him so much, we want to make sure he's with us as long as is humanly possible."

Just before it was time to go to our 'big appointment' with the specialist, I was feeding my son in the kitchen, and at the next table, this father sat and talked with another family. I zoned out most of the conversation, but at one point, I heard one of the women say to this father "There's a prenatal test for Downs syndrome now, did it miss your son's condition?" And the father answered "No, my wife didn't have it done." This caught my attention, and I glanced over in time to see the woman draw back...

"What? That's terrible, why didn't the doctor offer the test? Everyone has them done now! You could sue him for malpractice!"

And I groaned inside. She probably didn't realise how horrible that statement was, or where this was leading...and I felt my heart sinking, thinking how the father must be feeling.

"No, my wife and I discussed it before hand, and knew there was no point in having the test in the first place. If there were a positive result we would have had him anyway...and I'm not a bit sorry! He’s a beautiful kid." he said…amazingly calm and gentle.

Hearing the mother scramble to save face, I looked over to see if he was ok, or needed help…and he gave me the most beautiful, wry smile from across the room.

I wonder how often he'd had to field that particular question. Was this something he'd experienced so many times he had the answer down pat? Did he know how to put someone back in their place gently from experience? I don't know, we only had time for a brief goodbye, and when we came back from our appointment they had gone-- off to start a cross country tour with his wife and son, career on hold, with money saved for their adventure of a life time. I hope it was a beautiful vacation for them, and somehow, I'm sure it was. Some people are so down to earth they seem to just know how to treat life as an adventure, keeping their footing in most all circumstances.

So.

There will probably be a time in the not so distant future when we autism parents might very well be called to answer that same question this father did. The question that implies no one in their right mind would have an 'abnormal' child if there were a choice. The question that implies...your child, not 'typical', isn't wanted by society and shouldn't be here. There is a prevention, why didn’t you use it? If your child is born autistic, it must have been a mistake with the test, or the doctor messed up…you couldn’t possibly have chosen this!

This is a question I’m sure many parents of Down’s syndrome children have to live with, and the implications that come along with it. In a time when 80% of foetus’s tested positive for Downs are aborted, when there are increasingly few Downs individuals, and those that make it through that ethical dilemma to birth have to deal with the knowledge that most of their kind are now so devalued they are aborted without thought or concern--how hurtful this question must be.

It seems our scientific knowledge continually progresses too fast for our ethics to keep up. I wish there were more outcry against prenatal testing, not just in terms of testing for autism, but for other differences and disabilities as well. I'm sure most Downs syndrome people and their families would agree.



33 Comments:

At 7:10 AM, July 08, 2006, Blogger abfh said...

The rocking horse alone in the dark with an empty pair of child's shoes is such an incredibly sad image.

I hope we can change people's minds before the world's autistic population ends up the way you described, and I very much agree with you that we need more outcry against eugenic abortion in general.

 
At 8:06 AM, July 08, 2006, Blogger r.b. said...

A family friend had a daughter who was Down Syndrome. At first, her heartache was severe, and it took a while to accept her daughter.

Two years ago, she gave one of her kidneys to her daughter, who was about 35 years old, and mom was 65.

Feelings do change.

 
At 9:26 AM, July 08, 2006, Anonymous Tera said...

Thank you for this post.

My psychiatrist recently asked if I'd ever been tested for fragile X syndrome. I said no, but I'd be willing to. And although I haven't had the test yet, after reading a lot about fragile x I think my psych is onto something.

There is a prenatal test for fragile X, and fragile X researchers keep saying that a cure is "just around the corner." I know I don't want to be cured or fixed (my mom thinks that's weird) and I'm sad that fragile X people (or Down Syndrome people, or autistic people, etc) may one day cease to exist. Or that parents decide that they don't want children like us.

 
At 10:34 AM, July 08, 2006, Anonymous Camille - former art history major said...

Mum is Thinking,

Your essay is beautiful and so appropriate. I need to tell everyone to make sure to click on the image of the rocking horse to see the detail. The small image is beautiful but everyone needs to see the larger one. The painting is profound.

 
At 12:03 PM, July 08, 2006, Anonymous Bonnie Ventura said...

Yes, it is very true that our scientific knowledge has been progressing too fast for our ethics to keep up. This post is a timely and very well written reminder of what's at stake here. So many people and families are suffering because of our society's failure to accept natural human differences.

 
At 8:55 PM, July 08, 2006, Blogger Joseph said...

And you have to admire the composture of the dad. In the same situation I might have blurted out some angry remark, such as "Do you realize you are suggesting my son should've been killed?"

 
At 11:18 PM, July 08, 2006, Anonymous Kathy said...

Pre natal testing for autism(or any disability) is intrinsically evil.When I fell pregnant nearly six years ago I was offered pre natal testing as I was 40 years old.I refused because no matter what I was havin' MY baby. Our gorgeous little boy is now 5 yrs old, and he is autistic.We love him to bits. He has a loving nature and is always smiling. We wouldn't wish him to be any other way.He is who he is.Sure it can be a real hard slog at times and a real challenge, but I thank God evey day for his precious gift to us.

Just imagine if ever baby born in the world was perfect. How vain and selfish we would become. Children with disabilities teach us patience, humility and love. They can bring great Joy to our lives and the lives of others.

I also have a wonderful sister- in- law Cassie, who has downs syndrome. She has brought a lot of joy and love to many peoples lives. In particular to her own mother who recently lost her husband (and Cassie' father)Cassie has a great sense of humour and is always making us smile. I cannot imagine a world without such wonderful people.
You know sometimes I do wonder who are the people with the real disabilities? Because it sure as hell isn't Cassie or my son, or others who are like them!

 
At 10:59 AM, July 09, 2006, Anonymous Nickie said...

This essay is beautiful! I did a paper about this topic and wish I had been able to articulate this as well as you did! Thank you for writing, and sharing this story.

 
At 7:07 PM, July 09, 2006, Blogger Mum is Thinking said...

Do you ever write a blog and afterward think--I didn't write what was most important! I missed the heart of what I wanted to say! So I'm going to have another go here, hope I get closer to what I wanted to say.

I hope when we talk (on our blogs and in other places) about the value of our lives, and the value of our children's lives, regardless of our/their abilities or disabilties, it will help head off the rush to prenatal testing, the rush to cure, and also the dehumanising of autistics we've seen recently from places like the Autism Speaks video and in the press in relation to the recent murders (and attempted murders) of disabled children.

I hope talking about the little things--the things that humanise us, the stories we tell of what is endearing, childishly funny and loveable about our kids, and the ways in which our lives as adults have meaning, even if that meaning doesn't fit mainstream ideas--will help, as will taking a stand to speak out against things that are wrong.

The thing that has me most distressed about prenatal testing in particular is that most people, at the time they at the time they are most likely to have these tests, are not aware enough of the issues to make an informed decision when the results come back. I'm amazed that the young father I wrote about--he must have been in his early to mid-twenties at the time his wife was expecting--had the presence of mind to have discussed this issue so intelligently with his wife beforehand. I doubt I could have made such an informed decision at that young age.

Joseph, as much as I dislike making any sort of excuse for the question that parent asked, I'm sure the fact she and her family were staying at the Ronald McDonald house to be close to their sick child had something to do with this father's ability to keep his temper. It's amazing the amount of stress some of those parents were dealing with. That's still no excuse for her asking that question, but perhaps an explanation for his presence of mind :-)

Anyway. He WAS an amazing dad, there's no doubt about that.

 
At 8:50 PM, July 09, 2006, Anonymous Anonymous said...

Great story. Years ago after having
lost a baby to trisomy I was
counseled to have an amnio the
second time. But the only point to
having one is if if would change
anything about what you would do.
I turned down the amnio, but had
an ultrasound, just to make my
mind rest easier about the second.
There are no guarantees in life.
My sister also had a Down's child who is now the pride and joy of her adoptive parents.

 
At 9:55 AM, July 10, 2006, Anonymous Leanne said...

What a beautiful post! I am so impressed with that dad's response. I should hope I could answer as calmly and clearly as he did were I ever to be put in that situation.

My 4 yr old autistic son is the light of my life. I do not think a prenatal test should have been offered to me in order for me to decide he shouldn't exist.

Another unintelligent question is "I guess you won't be having any more children just in case it's genetic?". I hate getting that question. No, we aren't having any more children but if we were I would seriously hope they would be as lovely as the sons I have now...one typical the other autistic. I would honestly take either one.

 
At 6:54 PM, July 10, 2006, Anonymous Anonymous said...

From a parent's perspective I have to comment. My firstborn had Turner's syndrome and a congenital heart defect. She only lived 4 months and all of those were in the PICU.

I had prenatal testing done on my son (who has autism) and my youngest daughter because I wanted to be prepared for what might come. Not all people who do prenatal testing are planning on abortion.

 
At 6:55 PM, July 10, 2006, Blogger Taffy said...

I'm in awe of your writing and your blog. I totally agree with you on so many points. Our oldest son is autistic. Currently, the only interventions we're seeking is an end to our son's digestive problems and a cure for his hypersensitivity to sound. I hope you keep blogging, I know I'll keep reading.

And, BTW, I'm joining your protest re: prenatal testing. :o)

 
At 8:06 PM, July 10, 2006, Anonymous Kathy said...

Anonymous point taken. I can understand you wanting to know amd to be prepared.Unfortunately the purpose of pre natal testing is usually to identify disabilities with a view to subsequent abortion.

BTW Mum, enjoy your writings very much.( Have just finished reading the rest of your posts)

 
At 6:28 AM, July 11, 2006, Blogger Mum is Thinking said...

Kathy, well said. This protest is specifically regarding prenatal testing that targets certain groups for the purpose of eugenics. And thank you for writing about your son and sister in law :-)

Anonymous, I'm sorry to hear your story, and for the grief of your loss. I'm glad you brought up the fact there are medical reasons for prenatal testing that are NOT for the purpose of eugenics--that is an important point and needs to be made.

Taffy I'm glad to hear from another homeschooling mum, yea! Sharon here on the Autism Hub is homeschooling as well, you might enjoy her writing too? I'm enjoying YOUR blogs...I like needlework (well, embroidery, I lose count in knitting and crochet, and gave it up after a couple of lumpy bumpy attempts lol. ) I'm adding your blog to my favorites list, and will keep up with you too :-)

 
At 3:58 PM, July 11, 2006, Anonymous mim said...

Genetic testing isn't mandatory. Those who decide not to have it or decide to have it and not to abort a fetus with, say, Down Syndrome can make that choice now. Why the decisions of those who believe that they don't want to have a child with Down shouldn't be respected as well, whatever their reasons are?

And why is it a good thing to effectively force people who don't want a disabled child to have one? Yes, they might learn to accept it, or maybe they won't; but if a huge amount of misery can be avoided (and it stands to reason that a lot of people who don't want a disabled child would be miserable if they have one) why is it so wrong to help people avoid it.

 
At 5:34 PM, July 11, 2006, Anonymous Kathy said...

Because Mim..... It is MURDER!
And to be quite frank, I don't think that killing a baby should be optional just because it has a disability!

 
At 8:28 PM, July 11, 2006, Blogger Mum is Thinking said...

Mim, that argument could also be made for selective abortion of female foetus’s that has been increasingly common in India. If females are considered less desirable children, if the raising of them creates increased hardships on the family, if females are considered to have less potential in adulthood and the majority of young mothers or fathers would rather have a male child than a female child for whatever reasons (males are less expensive to raise, less trouble for the family, are considered higher status children), is it therefore morally right to selectively abort girls? I think the answer would be ‘yes’ according to your logic.

In particular, testing for an autistic child is further complicated by the current amount of negative (and largely inaccurate) propaganda against autism. I would hazard to guess there is actually MUCH less negative propaganda out there against Down’s individuals, and still we see 80% of Down’s pregnancies discovered by testing are terminated. What would the percentage be for autistic children, considering the climate that gives us the “Autism Everyday” video and excuses the murder of innocent autistic children by their parents? We live in a climate when autism groups such as CAN, NAAR, Autism Speaks, etc. constantly-- and with great media exposure--play on people’s sympathies by exaggerating the negative aspects of autism with the sole aim of gaining funds for their own special interests. How could the average person, with no other exposure to autism and autistics think anything but autism=devastating tragedy.

How could the average woman, uninitiated to these issues, make an informed choice when she is at one of the most vulnerable points in her life? And there lies the heart of the issue, at least in my mind. Using the science before the ethics have been addressed is a recipe for disaster that we will have to answer for in the future.

 
At 8:49 PM, July 11, 2006, Anonymous Kathy said...

Mum is Thinking

Well said. Couldn't agree more!

 
At 9:35 AM, July 13, 2006, Blogger That Girl said...

I am glad I had the choice. If I were forced by society to bear a child, whether that child had disabilities or not, I would quite naturally resent society and, unforntuatly, the resultant child.
I would also like to point out that many disabled children cannot find foster families or adoptive families.
Changing people's minds by force or by refusing to let them make their own choices is oppressive.
Agait for better education before you agait for forcing others to act in a way that you personally find moral.
It is also kind of disingenous to act as if you find abortion of diabled children a "genocide" if you find ALL abortion wrong. If you think abortion is wrong then what does it matter what the reason is and who gets to decide?

 
At 3:05 PM, July 13, 2006, Anonymous Kathy said...

So That Girl, if your child was involved in an accident and became disabled, what would you do? Following your logic one should not be forced to care for that child, otherwise one may resent society. Perhaps the child should be euthanised to put YOU out of your misery eh?

Your attitude displaying such lack of compassion and empathy saddens me greatly.And unfortunately is indicative of the selfish me, me society we have become.

 
At 11:09 PM, July 13, 2006, Blogger Mum is Thinking said...

ThatGirl, better education is exactly what I AM advocating for (though I’m not sure I ‘agait’ for it, since the only definition for ‘agait’ I can dig up = ‘act’ in French, and I’m sorry, but Homey don’t play the Français game. Perhaps there are shades of meaning in ‘agait’ of which I’m not aware; if you’d like to share a definition, then perhaps I can address that accusation more accurately). I am also advocating for more understanding and tolerance towards differences in our increasingly bland and homogenous society, and a rethink of our prejudices against those who vary from the mean.

I believe that the issues of ‘a woman’s right to choose’ and ‘eugenics’ that weed out specific differences in the human population are separate and different. I didn’t write here to address the issue of a woman’s right to control over her own reproductive processes; I’m writing about whether it’s right to effectively single out a group of people for extermination. Today it might be Down’s syndrome, tomorrow, autism. I’m sure there are plenty of people who wouldn’t shed a tear for the loss of either of those conditions, especially given the current prejudices against both those groups…but at what point will you not be able to stomach this anymore? Shall we select against Alzheimer’s? Epilepsy? How about diabetes? Cancer? Skin colour? Sex? Low intelligence? Ugliness? Linguistic ability? (Yes, I’m still miffed I don’t understand ‘agait’).

I am not saying--and HAVE NOT said--we should force people to one thing or the other, but I HAVE said we have opened Pandora’s Box, and we need to talk about it before things get even more out of hand than they are already.

 
At 9:57 AM, July 14, 2006, Blogger That Girl said...

Sorry Mum, French is my first language and when I get upset sometimes I speak/write it without even knowing Im doing it. It just means to act (with words) for a cause. I didnt intend to cause linguistic difficulty.
And yes, Kathy, I DO mean that if my child was in an accident I should be able to say "Sorry, I cant handle this and dont want to" and turn their kids over to the state.
I think this is a 100% better alternative than say, killing the children, or shutting them in a closet or abusing them because they are not who we want them to be.
It is patently obvious if you have spent any time working with abused children that some people should just not be parents and that accidents of biology should not force children to live in a house where they are not wanted.
Instead of providing a no-fault option for people who would rather do right by their children by giving them up we instead shame people into remaining pregnant, remaining parents. Shame works out really badly for the children involved.
The #1 cause of addiction is child abuse.
Just because you are able to handle a disabled child and find joy in that does not mean that everyone else can or will. The differences that you claim to love so much guarentee this.
Do I personally find the idea of choosing children who have all the traits I want repugnant? Yes. Does it give me the right to decide for others? No.
Do we need to keep talking about issues like this without throwing around loaded words like genocide and try to find common areas of agreement without shaming/blaming? Yes. Yes.
My son is severely disabled and I am capable of loving him for who is and what he is capable of while also wishing that he could be made (physically) whole.
Certainly, were he to need a heart transplant I wouldnt demand they cut the new heart in half because I dont want to change him.
We have this discussion in my support group frequently. The chances of living with my sons's problem to 2 years old are 50%. I would not wish on my worst enemy the death of their child at 2, certainly I wouldnt want to force them to go through that. And it has apparently never occured to them that if the 75% of the couples who choose to abort didnt the odds might be even lower against survival.
As I said, if you are anti-abortion for any reason that is one thing, but the gap between aborting for genetic defect and eugenics is wide.

 
At 9:58 AM, July 14, 2006, Blogger That Girl said...

Sorry Mum, French is my first language and when I get upset sometimes I speak/write it without even knowing Im doing it. It just means to act (with words) for a cause. I didnt intend to cause linguistic difficulty.
And yes, Kathy, I DO mean that if my child was in an accident I should be able to say "Sorry, I cant handle this and dont want to" and turn their kids over to the state.
I think this is a 100% better alternative than say, killing the children, or shutting them in a closet or abusing them because they are not who we want them to be.
It is patently obvious if you have spent any time working with abused children that some people should just not be parents and that accidents of biology should not force children to live in a house where they are not wanted.
Instead of providing a no-fault option for people who would rather do right by their children by giving them up we instead shame people into remaining pregnant, remaining parents. Shame works out really badly for the children involved.
The #1 cause of addiction is child abuse.
Just because you are able to handle a disabled child and find joy in that does not mean that everyone else can or will. The differences that you claim to love so much guarentee this.
Do I personally find the idea of choosing children who have all the traits I want repugnant? Yes. Does it give me the right to decide for others? No.
Do we need to keep talking about issues like this without throwing around loaded words like genocide and try to find common areas of agreement without shaming/blaming? Yes. Yes.
My son is severely disabled and I am capable of loving him for who is and what he is capable of while also wishing that he could be made (physically) whole.
Certainly, were he to need a heart transplant I wouldnt demand they cut the new heart in half because I dont want to change him.
We have this discussion in my support group frequently. The chances of living with my sons's problem to 2 years old are 50%. I would not wish on my worst enemy the death of their child at 2, certainly I wouldnt want to force them to go through that. And it has apparently never occured to them that if the 75% of the couples who choose to abort didnt the odds might be even lower against survival.
As I said, if you are anti-abortion for any reason that is one thing, but the gap between aborting for genetic defect and eugenics is wide.

 
At 9:59 AM, July 14, 2006, Blogger That Girl said...

Sorry Mum, French is my first language and when I get upset sometimes I speak/write it without even knowing Im doing it. It just means to act (with words) for a cause. I didnt intend to cause linguistic difficulty.
And yes, Kathy, I DO mean that if my child was in an accident I should be able to say "Sorry, I cant handle this and dont want to" and turn their kids over to the state.
I think this is a 100% better alternative than say, killing the children, or shutting them in a closet or abusing them because they are not who we want them to be.
It is patently obvious if you have spent any time working with abused children that some people should just not be parents and that accidents of biology should not force children to live in a house where they are not wanted.
Instead of providing a no-fault option for people who would rather do right by their children by giving them up we instead shame people into remaining pregnant, remaining parents. Shame works out really badly for the children involved.
The #1 cause of addiction is child abuse.
Just because you are able to handle a disabled child and find joy in that does not mean that everyone else can or will. The differences that you claim to love so much guarentee this.
Do I personally find the idea of choosing children who have all the traits I want repugnant? Yes. Does it give me the right to decide for others? No.
Do we need to keep talking about issues like this without throwing around loaded words like genocide and try to find common areas of agreement without shaming/blaming? Yes. Yes.
My son is severely disabled and I am capable of loving him for who is and what he is capable of while also wishing that he could be made (physically) whole.
Certainly, were he to need a heart transplant I wouldnt demand they cut the new heart in half because I dont want to change him.
We have this discussion in my support group frequently. The chances of living with my sons's problem to 2 years old are 50%. I would not wish on my worst enemy the death of their child at 2, certainly I wouldnt want to force them to go through that. And it has apparently never occured to them that if the 75% of the couples who choose to abort didnt the odds might be even lower against survival.
As I said, if you are anti-abortion for any reason that is one thing, but the gap between aborting for genetic defect and eugenics is wide.

 
At 9:18 PM, July 14, 2006, Anonymous cyril said...

oooh, ohhh. I think I've got it. It seems to me that all these children that vary from the norm of "Society" are really just a symptom. How bout curing the cause?

How bout gene therapy for the masses that targets "would be" bad, selfish parents.

The result of the therapy would be:

If they try to indulge their sexual urges, thier privates would explode.

I am trully a genius...:)

 
At 12:26 AM, July 15, 2006, Blogger Mum is Thinking said...

I think ‘advocate’ was a workable substitute for ‘agait’ in that case. You’ll have to excuse my public school upbringing, where deep fried burritos and square dancing were on offer, but sadly French was not. Such is life.

TGirl, this is the second comment you've left where you’ve read something into my writing that's simply not there. I’d appreciate it if you wouldn't do that. Where have I said we should force people into choices? I haven’t. I wouldn’t. Where have I said we should shame people into bearing a child they don’t want? I haven’t, and wouldn’t. If you’re looking for a fight on the pro/anti abortion issue you’ve come to the wrong place; that’s a different kettle of fish.

I would not fight for ‘forcing choices’ on people, and here is one example of why I think it would be pointless: forcing choices hasn’t worked to stem the tide of abortion of female foetuses in India—the practice has been illegal since 1994, and still continues on the upswing. In fact, it is feared it will become much more widespread as access to screening becomes more available in rural areas. There has not been a single conviction for the practice and that’s unlikely to change anytime soon.

I’m sure the case would be the same for screening for neurological differences. Once the box is opened on the technology and people have a strong enough urge to use it, it will be practically impossible to stop them. Where the will is strong enough and all that…

What I want, what I’ve said all along: We need to educate people to the realities of raising children with differences so they can make INFORMED decisions. That means presenting balanced information, exactly what we most lack at the moment we sit dangling our feet over the edge of the great abyss of autism prenatal screening. The people with their fingers on the button that will send us over the edge, the people who are funding the rush to research for genetic testing that will allow the screening for autism and are apparently uncaring of the consequences of that screening, are the VERY same people who are presenting histrionic, vile and dehumanising propaganda against autistic people: NAAR, Autism Speaks and CAN.

You can call it that what you want. I call it EUGENICS.

We can hope for the ‘gentle revolution’ that is spoken of in this article:
http://www.nytimes.com/2005/11/20/weekinreview/20harmon.html?ex=1290142800&en=2a3608539be4d1d5&ei=5088&partner=rssnyt&emc=rss
But without people willing to take a stand and speak out, it will probably be too little too late.

Thatgirl, I’m sorry you and your son are dealing with medical problems, and I sincerely hope for the very best outcome for him. I hope you’ll feel free to comment here again. I don’t have the time to continue this conversation at the moment, life intrudes…or is it the blog that’s intruding on life?

You, on the other hand, Cyril--have a potty mouth and shall stand in the corner. And please zip up, dear, your IQ is showing.

 
At 4:10 AM, July 15, 2006, Anonymous Kathy said...

That girl, I too am very sorry for you and your son. Obviously you must be under a lot of pressure and stress . And I am sure you love your son dearly. I wish for you good things. Never give up hope.

 
At 8:24 AM, July 15, 2006, Blogger That Girl said...

Dear Mum,

Only the beginning of my last comment was directed at you. The part after Kathy... was directed at her comments.
I wasnt being snotty about French, I didnt learn it in school, it was my first language. The weird thing is, if you asked me to say something, I probably couldnt say it in French but somewhere in my brain that first language must hide and lie in wait.
I have to say I mostly got hot under the collar because I fight for the opposite - so many more children with my son's defect would live if it was caught pre-natally. But it's not mandated, so it's not caught. And more kids die or experience mutiple organ failure because of it. Reading comments like "prenatal testing is intrinsically evil" made my head explode.
We are actually in agreement about much of it - there should definatly be more education about autism.

 
At 5:52 AM, July 16, 2006, Blogger Mum is Thinking said...

ThatGirl, I understand about the head exploding thing, it happens to me occasionally too.

Sorry I misunderstood where the conversation was directed; I have a long standing difficulty with that sort of thing. In Kathy's defense, I don't think she meant this sort of testing when she made that statement (though please feel free to correct me, Kathy, I shouldn't speak for you). And no, I didn't think you were being snotty, I really DO wish I spoke French or another language.

I also understand your need to inform people about testing, and knowing ahead. I'm glad you were able to do that for your little boy, and hope with all my heart he will be ok.

Cyril, you can come out of the corner now. I'm sorry I got so uppity with you, I like humour, but have been cursed with a very visual imagination. The exploding privates thing was too vivid an image for me :-O Just please don't do that to me again, okay?

 
At 7:31 AM, July 16, 2006, Anonymous Kathy said...

You are correct Mum. As I said before the pre natal testing is primarily used to detect abnormalities with a view to terminating the pregnancy if any defect is apparent.
I too am very worried about this (supposed) testing for autistics. It actually frightens me.

As you are know there are more babies born who are autistic than those that are born with downes syndrome. The reasons for this are obvious.Most downs babies are aborted because of pre natal testing.
If pre natal screening can detect autism I fear that many will just decide to terminate their pregnancies.Hence ther will be very few autistic children

I will give you an example of the skewed thinking in the world today.

Two years ago a very good friend then in her mid forties discovered that she was pregnant,though it was unplanned and she already had two children she and hubby were happy with the news. They had recently moved to Sydney as hubby had got a promotion .

Under the care of doctors and health professionals at a major public hospital she thought everything would be fine....However because of her age she was encouraged to undergo pre natal testing.When my friend declined this only seemed to intensify the "badgering" Finally in tears one day when a social worker had tried to coax her into having the test, she proclaimed, "What ever God sends me, it is meant to be. I will love my baby whatever happens. " The social worker was shocked. She had impressed upon my friend that the chances of her having a downes baby were significant... And because my friend already had an autistic boy , well , it would be very hard to cope with... See, this social worker(along with many other health professionals) could not imagine that someone could possibly want to have a child with a disability.
If my friend was made of less sterner stuff she may have been swayed into making a decision that she would later regret. Where was the tolerance and balance there.?
My friend is a loving and good hearted person She grew up with a brother who had cerebal palsy, hence her tolerance and understanding. I certainly believe in educating people.. In particular many health professionals who are very clinical and lack compassion and understanding. Who think that imperfections = terminations.

Unfortunately Eugenics is alive and well!!!!!

FOOTNOTE. My dear friend gave birth to a healthy baby.. He is the light of their life. And his autistic brother adores him.

Oh, and by the way.... He has downes syndrome........

 
At 6:09 AM, July 17, 2006, Blogger Mum is Thinking said...

Kathy, thanks for sharing that story with us :-) Your friend sounds like a great mum.

 
At 7:18 AM, July 25, 2006, Blogger Ruth said...

Just came back from vacation and found your essay-beautiful.

When we were expecting our second child, we had a nasty encounter with a hospital doctor who was badgering us to have amnio. We refused, as we would not have chosen abortion for Down's. That child was eventually diagnosed PDD-NOS. My doctor suggested amnio for our 3rd, not for eugenics, but to better prepare for early intervention. That child is our neurotypical fashion-diva rock star.

My husband and I discussed under what circumstances we could consider termination. I could only terminate if testing showed a disorder that would cause the child great pain and suffering.

The journal Lancet had an article in March, estimating that there are 40 million missing females in the world, thanks to sex selective abortion. China and India are reacting to the problem of too many men with no potential wives. Our technology is ahead of our ability as a society to make ethical choices.

 

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