Aspies For Freedom

I keep tryint to say this, they CAN NOT so much as THINK about developing a test until the genetics of ASDs are understood, which is going to take A LONG TIME.

I have said the exact same thing you just said (except for that testosterone bit) several times already.  Yes, it could happen any day now, but s it likely?  Not if you ask me.

The testosterone thing is interesting, but please specify, is the guy referring to testosterone levels during fetal development, or just in general?  Because the higher testosterone levels might (for all I know, from what you have posted, i will have to look it up later) only appear later in life, or possibly when it is too late for a legal abortion anyway (in the US at least, dont know about other places).  Besides, that isn not a genetic test anyway, high testosterone levels could be polygenic and/or heterogenetic (governed by multiple genes and havign more than one possible cause), meaning that it is not necessarily something you can do a genetic test for, which you would need in order to identify carriers, one of the likely steps in any program to remove ASDs from the geen pool.

DOWNS IS TOTALLY DIFFERENT!!!  Its an aneuploidy, AKA a trisomy, it's a disease caused by a chromosomal abnormality, and can be easily ID'ed by a simple karyotype (visual examination of the chromosomes).  early diagnosis of something as complex as AS is FAR more difficult.

Again, fragile X is aslo very different, its a repeat syndrome caused by a repeating string on the X chormosome, it is much easier to detect than something like an ASD, which is gentically complex.  All of the diseases for which they have tests, those are NOT geentically complex.  a disorder that is genetically complex is just that; COMPLEX!

Hurrah for March of Dimes! I've always liked them.

i'll tell my friends not to support them.

i think someone said that they have an alterior motive, that they promote abortions of "defective" children.

hmm..i'm starting to think about not being in the lab and prehaps being in bioethics instead.  alot of this research all my peers expect me to be in, and i'm really afraid of it.

By god I pray that you are right.

Y'know, I was seriously considering an official dx for my son (12yo), but now I am afraid to do that.  I'm not concerned for myself... I am too old for anyone to force-abort my children or to sterilize me.  I won't have my kids taken away.  Half of them are already grown.  And besides, I don't have an official dx for myself.

At this point, we haven't needed a dx, because we are homeschooling and don't need accomodations or services from the local school district, since he is not in a traditional classroom.

But I was thinking it might be beneficial to seek a dx for my son before he finishes high school and goes to college.  Perhaps special allowances for taking tests in a private, quiet setting, rather than a crowded classroom, etc.  Now I am rethinking that thought.  I don't want someone years from now to say he is unfit to marry or to be a father.  Or if he and his future wife ever get into marital troubles, for someone to use his AS as an excuse to deny his parental rights.

Listen to me go on... and he's only 12!  I worry about things, though.  

Cindy,
I think you have every right to be worried.  I was awake for a good part of last night with the same thoughts, as my daughter is fifteen and a high-functioning aspie.  These are scary times for us.  The only ray of hope I can see now is that those of us who are high-functioning can manage to "fly under the radar" long enough to become productive members of society.  And that hopefully the prenatal test will remain unaffordably expensive for the majority of parents...
Alison

what about some of us that was dx'ed many years ago?  i don't want my past to bite me in the butt and follow me around.

i would like to destroy my diagoisis right now if i could, so i can't be victimized....but i can pass through the world without being noticed nowadays.

That's a clever idea.  I didn't know that.

Ugh.  My 15yo daughter has ADD and some LD, among other things.  

You're making my head spin.  :shock:  Seems like nearly everyone missed the lessons of Nazi Germany.  Being Jewish is now protected (and rightly so), but you're still open to insult and discrimination if you are physically or neurologically different, or if you choose to be in the minority - such as choosing one's religious faith or the refusal to accept a cure.

Those who cannot remember the past, are condemned to repeat it.  
-George Santayana, The Life of Reason (1905)

I know what you mean.  My mother destroyed most of my early school records to get rid of any comments about autistic behavior.

I have heard of teenagers and young adults visiting psychologists to be officially "undiagnosed."  The original diagnosis probably stays on file somewhere, but at least you could point to a more recent opinion in arguing that it was wrong.

Of course, after genetic testing becomes commonly used, that won't be an option.

I think if people just refused to have prenatal genetic testing done for those disorders where there is no cure or treatment, soon the labs would be offering post natal testing if there was a demand for it.  We might not be able to stop the testing but we could try to save lives and prevent abortions.  Some people will have abortions regardless, it is just too inconvenient for them to have even a healthy baby.  I am talking about making prenatal genetic testing rare and too expensive for most people to be an option.  

All the tests have some margin of error.  I would really like to see those statistics published.  

I can't really sit back and say "Oh, it's okay for someone to have an abortion if the test shows it's going to be Kanner's".  If the tests results are positive for there is x percent chance that this baby will have Kanner's then I am still going to say no to abortion.  It could be 99.9% and I would still say no.  

On the "being prepared for a Down's child" theme, someone mentioned that Down's children often have heart defects and digestive problems.  Can not some of those problems be detected by ultrasound?  Every newborn is assessed for any health problem.  So who needs to be prepared the parents or the doctors.  It seems like the doctors just want to prevent some births from happening so they do not have malpractice suits.  Is this true?

Most prenatal tests are optional.  The doctors will recommend certain ones.  Some women just refuse amniocentisis.  Ultrasound can tell alot of problems.  Some women refuse to have abortions after getting test results that show "abnormal".  Usually the doctor is surprised that they do not want an abortion.  It should be an informed choice for all tests and explain the risks of the test and the accuracy rates.  

I am just afraid that people would be forced to have prenatal tests or forced to have an abortion.  I am worried especially for some countries where people have to rely on health insurance allowing some treatments.  Maybe the health insurance would refuse to pay for any treatment of an autism child, and that could not just be ABA - that could just be regular treatments for comorbids.  Like someone who said that babies with Down's syndrome were refused heart surgeries and just left to die.