What would you have done? What would you do today?

What would you have done if a prenatal test for autism had existed when you were expecting, and your child had tested positive for autism?  More importantly, what would you do today, knowing what you now know about autism and being an autism parent, if you were expecting and learned that your child would be autistic?  A comment to my last post from Jen and an article from Susan Senator last year give some insight into the question from an autism mom’s perspective.

From Jen:

I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped my mind around. (needless to say, I was also completely clueless about autism- I think that my two exposures were Rain Man, and an educational aide friend whose wounds I had to fix every night after her “child” with autism bit her all day). I am so glad that I had my children, and as far as I can tell, they are all very happy to be alive. They contribute to the world in so many ways, and we would all be poorer without them.

From Susan:

I found myself worrying about how many otherwise “lucky” children would now never see the light of day. And what might I — an abortion-rights supporter for so long — have done had there been such a screening for autism, before I knew Nat? Now I shudder to think of it. But given that so much of what you hear in the media involves stories of struggle or horrors like the stabbing at Lincoln-Sudbury Regional High School, rather than any of the positive potential of autistic people, autism mainly be forever tied to tragedy. I fear what many people might do with information from an autism screening, if it existed.

The theme that comes through from both Jen and Susan is that any decision in this situation is based on information and the mother (and father-) -to-be’s understanding of what life with autism really means.  Unfortunately, as I’m finding in Prenatal Testing and Disability Rights, the people most often in the position to provide the needed information and education (Ob/Gyn’s and genetic counselors) are quite often the least inclined, and least qualified, to actually provide that information.

0 thoughts on “What would you have done? What would you do today?

  1. You’re absolutely right about ob/gyn’s and genetic counselors. We need to lay the groundwork so that the tragedy of the 90 to 95% abortion rate of Down’s pregnancies is reversed, and never happens with autism.

  2. I agree with you that if prenatal testing becomes a reality for autism, that education is the key to giving people the correct information in order that they can make the right decision.

    The major problem that I see is that I can’t even imagine how that “correct” information could be compiled or generalized. While I think that the scientific information that we do have could be put forward in relatively straightforward terms that would be acceptable to medical personnel, my experience with families making these types of decisions is that they most want to know what their daily life (and that of their child) would really be like. Right now I’m feeling that if you put five different people from “the autism community” in a room together you’d be lucky to get them to agree on what colour the sky is, let alone what life with an autistic person is like and what that child’s future might be 🙁

    One of my suggestions would be that autism advocacy groups start to think very hard about this, and exactly how it could work. To use the higher-order multiple birth scenario as an example (because I’m very familiar with it, and because couples are often faced with a choice of either selective abortion, abortion, or trying to carry a large number of children to term), it’s now pretty common that when a family finds out that they are pregnant with triplets or more their ob/gyn, fertility specialist, or genetic counselor is easily able to put them in touch with 2 or 3 major organizations worldwide who can give them the information that they need to make an informed decision. The triplets plus organizations that I know of have worked very hard to ensure that the medical community is aware of them and the information that they have to provide to expectant parents, and generally (in most parts of the world), information is fairly readily available.

    But that’s taken years of very hard work by some incredibly active people to achieve, as well as a general consensus by those organizations on what is important and useful information for parents to have. I would say that if this is something that “the autism community” is worried about, it’s time to start thinking about it.

  3. I’m vehemently pro life, personally, while being pro choice politically, so I’d use the test to research autism, just like I’d a used a test for downs to research downs. of course, I have 3 kids now, and I couldn’t handle a fourth one – neurotypical or not, so I’d probably try and put a forth up for adoption regardless to avoid an abortion (we were supposed to be done at 2 even before we found out the middle guy was autistic)

  4. I don’t think that I would forgive myself if I made the choice to terminate my pregnancy. We lost our first child to miscarriage and I was so happy just to be pregnant again. I distinctively remember a co-worker asking me if I wanted a boy or a girl and I said “it didn’t matter.” and his response was “as long as it’s healthy right?” and I replied “that doesn’t matter either.” God would not have trusted me with my kids if He didn’t know that I could handle it. Not that it makes it any easier at times, but it certainly gives me confidence in those times I want to throw the towel in.

  5. I would never be able to abort a child of my own, despite being COMPLETELY pro-choice.

    When I was a teenager I did some volunteer work for a family friend who ran a summer program for Down’s syndrome kids, and others with special needs. It made me see that Down’s kids and the adults they become are AWESOME people! I didn’t even bother with an amniocentesis because I knew I was going to bear my child no matter what the outcome.

    Autism was unexpected, and I didn’t know too much about it. Then, four years later, we finally had our son tested, and he has Aspergers– and it turns out I’m on the spectrum myself!!! But I didn’t recognize his behavior as anything but cute and quirky, because I had done the same things at his age. One up side of genetic testing for autism is that it would give parents like me a heads-up so that we could start our education on the condition earlier. But I’m certain we would lose a lot of these bright, wonderful, special, quirky, creative kids to abortion, and that IMO would be an utter tragedy.

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