9 Jul 2006

Autism Prenatal Protest

Who has the right to decide who should or should not inhabit the world?

When I was pregnant for the 1st time, I was asked during a routine ultrasound scan, if I wanted a nuchal fold measurement carried out. I was told it was a screening test which could be used together with maternal age to give a prediction of the likelihood of Down's Syndrome. I said yes, as it wasn't invasive and I thought it would be interesting to know the outcome. I was told that it was highly unlikely that my baby would have Down's Syndrome. I had already decided that I really wanted that baby no matter what, but I wonder how I would have felt if I'd been told the opposite?

When I was pregnant with Duncan and then Thomas, I had changed my views on a few things about the whole medical management of pregnancy, and though I still opted to have 2 ultrasound scans each time, I refused all other diagnostic or screening tests. Once again, I wanted the child I was carrying and I didn't need the pressure of these tests.

Prenatal testing puts pressure on parents, mothers in particular, to reject a specific child. This is a whole different issue from that facing women who are pregnant and do not want any child at that time. Woman are getting the message that they would be irresponsible to chose to give birth to a child they know to be disabled. These children are seen as 'drains on society' leading 'empty and pain-filled lives'. They are said to 'cost the state too much to care for them'. This is eugenics. It is anti-feminist.

Parents who have learned through prenatal testing that their child is disabled, often don't know enough about the rich and rewarding lives of people with the same disability as their fetus. They don't know the joy that child can bring. No-one knows what will become of any child, how they will turn out. I will admit that for now, raising my autistic son is more difficult at times than raising my non-autistic children. People may see me running around after him or dealing with him when he is frustrated and shouting or lashing out, and they might think, I would prefer not to have to deal with that. I want everyone to know that the joy hugely outweighs the sorrow. I would not want my boy to be anything other than who he is. The idea that he could be among the last generation of people who think in his own quirky way, just like the dwindling numbers of people with Down's Syndrome who make it, is scary and very saddening.

It is not fair for a fetus to have to pass a test just to be born. Our society gains from diversity in all its forms. Disabled people cannot feel accepted and supported while it's possible to stop children from being born just because they're like them. Society can change and offer more help to families living with disability. A change of attitude would be a good first step.

More information on the test is available here.


Anonymous said...

Thank you. It frightens me to think about what I might have done if I had found out, while pregnant, that my child was going to be autistic. Back then, I would have read scary and slanted things about autism and possibly decided to terminate the pregnancy. I am so glad that no such test existed. I am so deeply grateful for all the ways that my child enriches not just my life, but so many others as well.

Anonymous said...

“Parents who have learned through prenatal testing that their child is disabled, often don't know enough about the rich and rewarding lives of people with the same disability as their fetus. They don't know the joy that child can bring. No-one knows what will become of any child, how they will turn out.”

Sharon, you’ve made such a fundamental point about the problem with prenatal testing, I’m so glad you said this. Those of us with autism and other disabilities or differences, or who are parents of autistic children might try to help spread the positives by talking about how wonderful and rewarding our lives and our children’s lives are, but most people won’t have access to this information before having a prenatal test or even when trying to decide what course of action to take after a positive result.

I’m worried about the many people (and this would have included myself during pregnancy—ignorant of the facts as I was) who look at the prenatal test as something that is ho-hum, matter of course, and only have a chance to react to a positive test result with alarm.

The fact that these things are tested for in the first place automatically implies these conditions are something disastrous and dire. I’m afraid most people who hear test results have come back positive will automatically terminate a pregnancy in panic; the fact that so many Downs syndrome babies are aborted is testament to that.

I do hope that talking about our children and our lives as we do on our blogs will help make a difference, but it’s scary to think those who most need to hear probably won’t until it’s too late.

Anonymous said...

Eugenic abortion is indeed anti-feminist. Very few women, if they took the time to reflect on the ethical issues, would want to take part in a scheme to exterminate all people with neurological differences. But in the context of prenatal testing, women (while at their most emotionally vulnerable) are frightened and coerced into making hasty decisions that are based almost entirely on stereotypes and propaganda. This is deliberate exploitation of women by eugenicists and the medical establishment.

Anonymous said...

Cyber stomping and clapping from me. I agree 100%. It scares me that we live in such a perfection orientated society and if times had been different a few years ago I would have had pressure on me not to have 6 out of 7 of my children. Autism is not a condition with a set outcome or prediction of how a person will be as an adult. It is not terminal and not even guaranteed to be passed on genetically either. Autistic people have many skills and talents maybe more nuero- logically typical people don't have. I would not be without my children. They do not live painful lives and are not a drain on society. I just hope that women continue to have the choice and are not force into abortion over this.

Sharon McDaid said...

Thanks all of you for your comments.
And sorry for the horrible spelling mistake I had in the post! It's been fixed.

Anonymous, I would have been more frightened of a prenatal diagnosis of autism than of Down's because, in my ignorance, I had a much more negative view of autism then.

Mum is thinking, learning your child has a diagnosis like autism when he/she is an infant or older child is very different from finding out when you are pregnant. Your child does not change because of a diagnosis. You will have been raising and loving getting to know your child and while the diagnosis can be difficult to deal with at 1st, you eventually realise that it's still the same child you've been loving all along. You can take the time you need to think and learn and accept. For pregnant women getting a diagnosis, there must be a tremendous amount of pressure on them to deal with this and make a decision based on very biased (medical model) views of disability, as quickly as possible.

Abfh, I see you agree that this is a feminist issue. It is about empowerment to make knowledgeable and unpressurised decisions. This is not how things are done now.

4g&3b, I know what you mean. I think I would have been under pressure to have an abortion, if I'd known Duncan would be autistic when I was pregnant.
You're right about the skills and talents of autistic people too.
Yet even people who may appear to have little 'to offer' society have as much right to exist as anyone else.

Anonymous said...

Hear, hear - loud clapping and waving from Kent! The point that resonates so much with me is just how much stress is placed upon the mother. I refused all tests other than scans, and I couldn't believe the pressure I had from the medical profession. They treated me as if I was at best naive, and at worst a raving religious idiot - particularly annoying as it wasn't really a "religious" decision! Sadly, as "mumisthinking" said, "it’s scary to think those who most need to hear probably won’t until it’s too late"

Anonymous said...

Yet even people who may appear to have little 'to offer' society have as much right to exist as anyone else.

Oh yes I totally agree. My post made it sound like I was only validating those who have skills but no not at all..... Everyone has a right to be here. Ages ago I was on a list where a member said someone she knew had rescued a severally autistic child from the bottom of a pond and regretted it thinking the child would have been better off dead.. I was so stunned I unsubbed.

Anonymous said...

I respect the opinions represented here, but I think many of you are having too little faith in the interpretation of the results. Many of you suggested that you probably would have terminated the pregnancy. I would like to think mothers interested enough to be tested would be intelligent and responsible enough to do research on the topic, including spending time with people affected by autism--Not just those who HAVE autism, but those who care for them, love them, are frustrated, happy, etc.

Intead of rallying against a test, rally against ignorance.

Sharon McDaid said...

That is a good point anon. However, I think lots of people just have the test as a routine procedure, without really thinking about what the results might mean. I know I did, when I was offered the test in my 1st pregnancy. There is also the time consideration when you are pregnant, if you are considering whether or not to have an abortion, you need to make the decision as fast as possible. The outcome of the prenatal test for Downs doesn't give much hope for what would happen if (when) an autism test is available. I think that the mothers would be out under a lot of pressure to terminate the pregnancy. We already know that the language used to describe autism is highly negative. I really think that such tests are anti- feminist.

You are right to say we need to rally against ignorance. Perhaps if we could make the case that 'neurodiversity', and difference in general are good, then such test would be merely diagnostic and allow parents to plan for their 'different' baby. But given how far we have to go in improving the lives of adults and children with autism, given just how horrible the language used to describe autism in the media is, even to the point where murder is portrayed as a 'mercy killing', I don't expect that to happen before the test is available.

Anonymous said...

I am totally disagree the view of the person who created this web site. To bring in the special need child to this world is not fair to that poor baby and his/her family and everyone.
Use your brain to think!!!!!!!!!!

Sharon McDaid said...

You're so funny! "Use your brain to think!!!!!!!!" LOL!

You come across as someone who has really considered all the issues. [/sarcasm]

I have an autistic child. I'm glad he exists.