Aspies For Freedom

Creepy

Yikes! I would not want to be on any such list.

And congrats on the first post, voiceoffreedom. I like the quote you use.

In this day and age, what some would call "paranoid" is pretty much the  only way of protecting yourself from the possibility of information exploitation.  I've been going through great pains lately to try and hunt down every place on the web where my username is linked with my real name or other important information and get rid of it.  This is new for me because it was only over the past year that I began to worry about this.  However, I think it's completely justified- even if such information exploitation is not common, we still ought to protect ourselves from it.  Guarantees of privacy are not enough.  Hire some professional hackers and you can still get that information.  In some cases you may not even need hackers.
I'm worried about this registry because of what it could do.  Yes, it definitely has the potential to do a lot of good, but in a world that is actually becoming increasingly more hostile to autistics, where scientists are growing closer to actual treatments and prenatal tests, don't you think there's the slightest possibility that such a registry could eventually be used to track down autistics and either pressure them or force them to take treatments, take away their children, restrict their rights, etc?  A while ago I would have dismissed that possibility, but a combination of the changes and restrictions of rights we've seen lately in the US and the baby-snatching in the UK has convinced me that, however unlikely, the misuse of such a registry is indeed possible.  I wouldn't want my name in there.

Suppose your parents put you in that registry when you're a kid, and then you grow up and want your name off it.  Would the people in charge of it be required to remove your information on demand.  If they refuse, would you have any chance of suing them and winning?  Even if you successfully deleted your entry, there's no guarantee that there's not another copy of it in the corner of some researcher's office.

I don't like the idea of registries.  I'm sure the information could be bought for the right price despite any guarantee of privacy.  It could also be subpoenaed by a corrupt government and then used inappropriately.  The complete medical record could be used for blackmail.  All kinds of things can go wrong.

Hitler once used registries.  Look what happened.

But Health and Human Services has the name.  So it is only their word and a legal system that is against us which we would be relying on to not release it without permission.  I bet you anything that the government would have no trouble getting their hands on a name if they really want it, with or without permission.

http://www.aspiesforfreedom.com/showthread.php?tid=9650  In that thread we discussed a specific case of baby-snatching by government Social Services, there's another thread on here somewhere where we discussed how this phenomenon was becoming common but I can't find it.

As for your stance on treatments:  Of course most of what's out there now is complete quackery and has no effect.  But if you think that researchers have stopped looking for possible treatments- real ones, not quack treatments- you are mistaken.  I think the last one I read about involved utilizing brain plasticity to retrain the autistic brain into normal functioning patterns.  There are also new behavioral treatments in development.  Virtually all of the money Autism Speaks and other charities funnel into research goes towards finding causes and treatments.  It is the biggest area of autism research right now.  Considering the rate at which scientists are making advances specifically in the area of genetic research, the first commonly available prenatal tests will be here within ten years, probably a lot sooner.  Expensive and intensive screening processes using artificial insemination are already available to families identified as "at risk" of autism.  In a culture which is obsessed with various therapies for any oddity or imperfection, it is very likely that pressure to treat yourself or your children for autism or to abort an autistic fetus will climb to the point where it may be considered criminal negligence to do otherwise.

Thank you, that was kind of my point.
Unfortunately that means this thread is now dead by virtue of Godwin's Law (although, according to wikipedia, the Law isn't intended to be used in instances discussing policies similar to those of the Nazis, such as eugenics...).

Ah, yes, you reminded me of the other point I forgot to mention- we can honestly say we know at least some of this sort of thing will happen, because it already does to people who disclose their diagnosis ALL THE TIME.  Asperger's/Autism can be and has been an excuse used to justify all sorts of offensive discrimination against people, up to and including the diagnosis being used against people in court.  Personally, I have not yet decided whether or not I want a diagnosis.  I know people who have chosen not to be diagnosed because they fear how it could be used against them; I also know people who have chosen to be diagnosed and feel that it helps them more than it hinders them.  I'm of two minds about it.

Sadly I didn't get a choice in my diagnosis.

*sigh.*

All I know is that if I were in Utah now, I'd be making plans to leave the state before the registry takes effect. If anything, more people on the spectrum are going to end up either uninsured, or on Medicaid. Blue Cross/Blue Shield recently got a lot of negative attention because they tried to get doctors to violate privacy rules to deny policies for those with preexisting conditions. With a registry, they have an excuse to discriminate against those on the spectrum without pressuring doctors.

People on the spectrum are also discriminated against in employment, but employers often make up some BS reason in order to avoid getting in trouble for violating the ADA.

my country has a bill of rights that is supposed to protect people from discrimination on basis of race, religion, creed, and disability.  

I think that any registry for autism should have a mechanism for people to unregister for any reason, protect their privacy and it should only include people who want to be on it or their parents consent if they are children or unable to give consent.  

Many of the problems that Americans have with health care, insurance etc is ridiculous.  They claim to live in a democracy. Is it that the majority of citizens want to have such a pathetic health care system?  I don't believe it.

I live in Utah, thanks for posting this so I could find out about it.  What I'm most curious about is where they will gather the info from.  I mean I'm not jumping up to register myself with anyone.  My doctors know but they haven't had to organize any type of treatment for me...  I work in customer service and right now they think I'm good at it.  If information was released even if there wasn't overt discrimination all the sudden my quality monitors would be focusing on me in a completely different way with a presumption that I would be bad at my job and as a result find new things to complain about me.  I trust very few people at work with knowledge of my diagnosis and even those I've told I haven't told them much about it.  Who knows they might already know from that call I took where a father of an asperger's syndrome child who wanted to know what kind of phone would be good for his son... think I got him set up with a HTC 8125...

Given that there are other health registries already in place I'm not assuming the worst but it is something to be aware of.

If you don't like conservative state politics just move to the state capitol.  My wife tells me the mayor before this one wanted to legalize marijuana

I found it, to register you have to self register... so unless there is another way for your doctor to register you without your permission (which the website doesn't mention) its going to be a purely voluntary thing involving the person and possibly their parents.  No mention on the website of being able to unregister or not.

True, there is no telling where it might go, though I think it is significant that it isn't actually directly run by the state government, rather government funding for a Utah State University research project.

I agree it is only the checks and balances provided by media, civil society, and random grass roots organizations that  can keep these kinds of programs from being abused.