This bill is no more worrisome than any of the other registries that have been established. While it is true that employers might discover the information contained therein if it were to be made public, they would not be able to discriminate based upon that information. Aspergers is currently covered under the Americans With Disabilities Act and therefore if someone was either not hired or fired based on the fact that they had Aspergers, the employer could face a lawsuit. While it may take time to carry through a lawsuit, I consider the Americans With Disabilities Act a sufficient protection against employers.
There also seems to be some confusion about what exactly the registry is intended to be used for. It is not intended to track individuals, but instead provide accurate numbers on how many people have conditions that fall under the scope of Aspergers. This information would allow better protections for these individuals and would also allow researchers to discover how prevalent Aspergers is in the state. There are also bills being considered that would provide health care, should it be needed, to a wide variety of people that fall under the disabled category and this registry would allow for a greater efficiency in these programs' management.
Aspergers is currently covered under the Americans With Disabilities Act and therefore if someone was either not hired or fired based on the fact that they had Aspergers, the employer could face a lawsuit. While it may take time to carry through a lawsuit, I consider the Americans With Disabilities Act a sufficient protection against employers.
I'm not meaning to sound rude or anything, but I've seen discrimination happen even despite the ADA. Its as simple as an employer's labeling of their reason for not hiring as something other than AS.
I certainly hope though that this would never become a problem. I hope that they would never keep a database of names that could be matched with the data. That in and of itself would be my largest concern.
For the current bill proposed, there are no names in the system, just numbers. To obtain a name, the person in the registry must give consent. So the process for obtaining names begins when someone sends in a request to Health and Human Services. Then Health and Human Services asks the person if they want to allow their name to be released. If they say yes, the name is released, if no, the name is not released.
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.
There is indeed a possibility for abuse, but there is that possibility with every database that contains information about people. There are other databases that contain a person's medical history that they don't even consider. One such database is the database of an insurance company. They have more information about a person than any other other group excluding the government. The same possibility for abuse exists within their database, but most do not concern themselves over it.
And to the point of using it to track down people and force treatment upon them, I doubt it. Researchers are no closer to a treatment for Autism, Aspergers, etc. than they were fifty years ago. Few people even continue to research a "cure" or treatment because they realize that there is simply nothing to be done once a person's brain has developed. Autism, Aspergers, etc. are not simple brain chemistry, but rather organizations of neurons, so drugs just are not effective. The "wiring" of the brain is already in place and there is nothing that anyone can do to change it. The "treatments" currently in existence are not supported by research, but rather by anecdotal evidence, or what I like to call bullshit. The most prominent of these "treatments" is Chelation Therapy, which so far has only been shown to be an effective way of destroying a person's kidneys and liver. Treatment and or cures just are not realistic.
As for children being taken away or rights restricted, I know very little on that subject. If you have an article that discusses this, would you please link to it? I would enjoy learning more.
I was told that there was nothing more that could be done for my child aside from "residential treatment." This was a flat blatant lie given to me by a so called professional who did not desire to do the extra legwork required to learn about AS and help my child. Needless to say, I now homeschool and things are coming along very nicely.
Yes, but with IDEA, you can call the state ed dept or the disability law department and they will follow through. If its serious enough, they will send you an advocate (at which time the school personell start wetting themselves). I just had to do that with my son's team. They were trying to push me around. I don't know what parents who are not savvy do, however.
A section 504 of the ADA is as good a the team that supports it . If they don't want to do anything (which is typical b/c schools do not get reimbersed through ADA - they do through IDEA).
That coupled with the fact that they were going to try to push me into placing him in a residential facility was enough. Thus, I decided to do what I thought was the savvy thing and take him out and educate him myself.
Some of the best thinkers of of any centry were homeschooled!! And how wonderful for you, too. NO ONE should EVER put a CHILD in a residential facility. They are NOT SAFE!!!
By the way, if the school recommends it, then they have to pay for it. They NEED to be sued!!
Random Joe in the 1930s: "you're paranoid if you think Hitler wants to kill all the Jews."
Hitler got the idea of eugenics from the USA. We had programs already under way. Maybe 5 years ago a book, Breeding Better Vermonters" was published.
Vermont has a well oiled program that focused much of its efforts on Abenaki (the indiginous people of the area)
Abenaki had to blend quickly and effectly to survive. maybe last year the Abenaki were recognised as an official tribe. It took so long due to their lost identity.
We are ssafe right now, but people dont realize how close our adverse history is. My mother was seven when women were finally able to vote. Black votes were stolen until the 60s. b**h (we've been asked to * parts of inappropriate words) has done all he could to take away Random Joe's rights
I don't think it is paranoid to say that we need to avaoid complacency and keep good watch.
I forgot to mention, I think your image there is awesome. Does that say Co-exist?
Thank you
Yeah, it does and the chicken one says "horror movie"
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...).
I hadn't heard of Godwin, so I looked it up. Forgive me if I am telling you what you already knew, but I thought it interesting (from wikipedia):
Godwin's law (also known as Godwin's Rule of Nazi Analogies)[1] is an adage formulated by Mike Godwin in 1990. The law states:[2][3]
"As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches one."
Godwin's law is often cited in online discussions as a caution against the use of inflammatory rhetoric or exaggerated comparisons, and is often conflated with fallacious arguments of the reductio ad Hitlerum form.
The rule does not make any statement whether any particular reference or comparison to Hitler or the Nazis might be appropriate, but only asserts that one arising is increasingly probable. It is precisely because such a comparison or reference may sometimes be appropriate, Godwin has argued[4] that overuse of Nazi and Hitler comparisons should be avoided, because it robs the valid comparisons of their impact. Although in one of its early forms Godwin's law referred specifically to Usenet newsgroup discussions,[5] the law is now applied to any threaded online discussion: electronic mailing lists, message boards, chat rooms, and more recently blog comment threads and wiki talk pages.
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.
Is AFF organized to address some of these issues? Its great to have a place to comizerate, but could this ever become a forum for action?
my country has a bill of rights that is supposed to protect people from discrimination on basis of race, religion, creed, and disability.
So does the US, but the unspoken right at the very top of the list is the right for big business to crush whomever gets in the way of their money machine.
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.
I think we need to take action. Someone from UT should contact the cival liberties union on this one. How can I help?
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.
aint that the truth! From what country do you hail, M?
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.
Just require something like X years experience or something else that statistically screens out AS/HFA/LFA. How do you word social skills when it is meant "we don't like AS/HFA/LFA?"
GuessWho, I can be quite dense 
. Would you mind explaining this idea a bit more?
Here's another reason (as if one were needed) not to move to Utah. :p
For all Utahans here, I would like to add that I was JOKING. Sorry if I offended.
I am still trying to figure out what information is protected. From what I have read, they seem to be giving the information mainly to public education systems and health care providers. I have found nothing about releasing anything to employers.
I will dig deeper, but it seems you guys are making it seem like a bigger deal than what it really is.
In the world as it is right now - that may be true. However, think of all the parents who are signing up their minor children, thinking its for the good. What might things be like in 20 years? I don't know - do you? Watch dogs and wistle blowers keep the keep things balanced.
I will dig deeper, but it seems you guys are making it seem like a bigger deal than what it really is.
I suppose everyone has seen the "Autistic boy removed from home" headlines. The "STATE" did not approve of holistic interventions of parents.
The state has him intitutionalized and drugged now...
do you think the social workers have notches on their belts? One more autistic off the streets!