I thought pregnant ladies were supposed to get blood tests and sonograms so that they could plan ahead for complications and line up other medical providers if there were some sort of problem. But then I looked into it a bit more and it *seems* that many of these tests are put into place to "inform" parents of problems... with the unspoken understanding that they can terminate their pregnancies before time runs out legally. Problem solved.
So when I've been asked, I have refused to allow my children to be tested more extensively (for example, for fragile X and other problems) in "studies" on autism. The last thing I want on the market shelves is a test that would diagnose autism prenatally. Soon autistics will find themselves in the company of Down Syndrome people if that happens. People will "selectively abort" children if they aren't exactly what they expected.
I think, though, that if I were pregnant that I would want to know if my child were autistic ahead of time. I would just want to be prepared. If there were a test, given my history, I'd take it. But I wouldn't want to help MAKE that test available, knowing other people would use it eugenically. Maybe that makes me a hypocrite; but really, I wouldn't want to see a kid die just because he's autistic.
I wish that we could move away from the "autism strikes 1 in 100 kids and ends 95 percent of marriages" types of statistics some groups like to use for fundraising and more toward "parenting a child with autism is really tough, but you can do it, and I can help!" attitude.
That being said, I won't lie to you. It's tough parenting an autistic child. It's really tough. I can fully sympathize with people who bellyache about this or that service not being available, how hard it is to have ANY KIND OF LIFE whatsoever, the real lack of support from the community around us, even the inability of the child to be on "our wavelength" sometimes. We're parents, but our lives are changed from what we expected. We're frustrated we can't do the things we did before. We haven't done a good enough job by our children because we either don't know how or have just plain run out of energy to keep looking for resources that aren't there.
And we want to advocate for our kids, but often there just plain old aren't resources out there. In our family, we aren't poor enough to qualify for the big money help from the Medicaid people, but we're way too poor to do the $25 copay several times a week, even if services WERE available on our medical plan.
And still yet, sometimes we don't "get" what our children need. We know that the "bratty" behaviour we deal with isn't because of brattiness, but that doesn't mean we can't help our children improve. They're not animals, you know.
But they ARE disabled, and they're going to need some help. Sometimes that help looks doggone weird to you. I know. I never would have thought "put a vest on with lots of super-heavy weights inside (medieval style!) and sing the same ONE line to a song over and over while giving my child a modified noogie" would be a sensible thing to do in public in ANY situation. Um, but it is. I promise-swear that I'm not trying to creep you out by acting weird like this; but this just helps my kid calm and acclimate a bit and I'm tired of him screaming and running. I don't know what's freaking him out right now (because he can't speak or sign yet), but I know this often helps. So... deal with it.
Would I have wanted to know Woodjie was autistic before he was born? Yep. Do I want YOU to know if your child is? Depends on what I think you'll do with the information. Either way, I can't imagine that a physician or nurse withholding KNOWN medical information from a parent is entirely ethical. It doesn't matter what the physician wants. I don't like the way some tests are used as a means to eliminate children with disabilities, but if the tests are taken and the results are in, I just couldn't see hiding what they have to say.