“And a life without Charlie is a life that neither I nor my husband Jim can imagine, nor would we want to.”

Hi,

Follow me in a hypothetical thought experiment. Imagine that your Charlie had been born a “perfect child” as seen by most people. Suppose he were to grow up to be–depending on your preference, an all star New York Yankee shortstop or Nobel Prize winning scientist. Call him Charlie II.

Would you then make the above quoted claim?

Now suppose that as the result of prenatal genetic testing Charlie I had been aborted and 6 month later Charlie II conceived. Think you would still choose the Charlie I that was never born to the Charlie II that was never conceived?

Of course not. Because we only know the things that ARE and not the things that might have been had we made different decisions.

When I said do all testing postnatally, I was referring to testing for Down’s, autism, and other disorders where there is no prenatal treatment (save termination).

I wholeheartedly support prenatal testing and treatment where it is indicated to improve the quality of the soon to be born person’s life.

Mom-NOS: Thank you for the clarification(s)—Mamaroo: thanks for telling us about your recent personal experience.

Club 166: I tend to more generally to be a pragmatist…..

Sarah: Classics is my academic field, and discourse about illness in the ancient world is not medicalized: Hippocrates uses amalogies to the every day world (the crust that develops on bread to describe medical processes and conditions. I’m thinking on your point that “what if we were better able to accomodate different needs and ways of thinking even without a label? “.

Therefore, I worry about prenatal testing in regard to autism because of the ways in which autistic individuals will be identified through bio-medical discourses as “deformed,” “abnormal,” and “impaired.” While the use of these words might seem ubiquitous at best, I think they, in turn, construct our own views on autistics as “deformed,” “abnormal,” and “impaired.” Likewise, medical and media discourses on prenatal testing is often based on the construction of the fetus as “suffering” economic and emotional “burdens” on families. The implications seem that autistic children and adults become “impaired, suffering burdens” on their families.

I think it’s also important to note that the prenatal testing that has been discussed so far in this forum and in other bio-medical discourses involve terminal and life threatening conditions. However, autism is neither life threatening nor terminal. Autism is also not painful and autistics do not “suffer” from the developmental disorder. Constructions of autistic individuals as “suffering” and “burdens” are all the more relevant because it’s important to question who’s “suffering” are the tests attempting to resolve, the autistic individual or the parents?

Finally, I think it’s also important to note that autism is a developmental disability. While autism has connections with other physical conditions (leaky bowl and epilepsy to name two), the condition itself is based on a developmental disability, not a terminal condition with a specific locus where an “abnormality” occurs. Prenatal testing of autism is not like identifying an extra chromosome, there is no central location in the brain to study.

As you know Kristina I had a baby with a neural tube defect(anencephally)that was still born at 26 weeks.
Mary Roses’ condition was picked up on a routine ultrasound at about 15 weeks. With anencephally the baby cannot survive, and normally dies shortly after birth.
I refused an abortion as it goes against my Christian beliefs.

Abortions will certainly increase if autism can be detected in utero.
And I am yet to be convinced of the benefits for such a test.

I have a friend who lives in Sydney who had a gorgeous( down syndrome)baby boy 3 years ago.
She refused pre natal testing, and was constantly badgered by health workers for her refusal to do so. They could not accept the fact that no matter what God gave her, she would love her baby regardless.

She rang me one day in tears as it was really upsetting how people could be so callous and dismissive of her beliefs and feelings.

Of course she thanks God every day for her precious little boy. “The light of our lives” she says. Btw she also has an autistic boy Charlies age who adores his little brother!

Just to finish, Kristina, I am having a Birthday dinner for my sister-in-law tonight.
She is certainly the life of the party.Has a great sense of humour, and is sharp as a tack.

Oh,and she has Downs Syndrome…

HAPPY 43RD BIRTHDAY CASSIE!

Tonight I am having a birthday dinner for my sister-in-law. She will be 43. She has a great sense of humour, and is as sharp as a tack.

We are all looking forward to it.
She is certainly the life of the party