Aspies For Freedom

The National Autism Association (NAA)
today expressed dismay over the CDC's continuing ability to obtain
confidential medical and educational records of children without parental
knowledge or consent for an autism study conducted largely in secret.

Last week, an Arkansas parent confirmed that not only had her daughter's
medical records been accessed without her knowledge, but school records had also been secretly obtained and used without her permission.  News stories last year from Colorado revealed that medical records had been turned over to the CDC in apparent violation of the Health Insurance Portability and Accountability Act (HIPAA), enacted to protect the privacy of patients. Under the Family Educational Rights and Privacy Act (FERPA), such educational records are considered confidential.

A former employee of the Arkansas school district informed the child's
family of the secret gathering of information after the fact, indicating that
school personnel had been expressly forbidden to inform parents of the study,
or that confidential records had been accessed and re-typed.
    "This is an outrageous invasion of privacy," said NAA President Wendy
Fournier, "one that the CDC must now explain. This agency has become notorious
in the autism community for its mishandling of data linking mercury in
vaccines to the development of autism.  For the CDC to now be given carte
blanche access to our children's confidential records is frightening. Why
bother having such laws as HIPAA and FERPA, when government can obviously
obtain whatever information it wants, even that of innocent children?"
    Calling upon Congress to investigate the activities of the CDC regarding
its methods of collecting data for the study, NAA Board Chair Laura Bono
stated, "The CDC has continually set up roadblocks to outside access of the
taxpayer-funded Vaccine Safety Datalink which could hold answers for the
hundreds of thousands of children now diagnosed with autism. It's an alarming
irony that the public is denied access to information it's clearly entitled
to, while this agency continues to monitor personal information which by law
is considered confidential."

From prnewswire.com

Homeschool!

I have to wonder even how the hell autism came under the CDC mandate, maybe I am just ignorant of US things but I thought they delt with deseases, more specifically infectious ones which can be controled thus the name Center for Desease Control how this has anything to do with neurological differences in some individuals I have no idea :roll:

Perhaps there is a more sinister reason for "monitoring" autistic children than what has occured to us.  With prejudices such as the one's in this particular article (given below) as fact, we may be looking at a life filled with other's suspicions and people watching us.  

I suppose those that wish autism eliminated (and the funding it provides) couldn't really work on just the fears of parents with autistic children, they have to go to the general public and make them afraid of autistics.  To fear us enough to eliminate us?  I hope not.

(http://www.courant.com/news/local/hc-new...lines-life)

Petty Quarrels Turn Deadly  Empty Tissue Roller Leads To Murder

By JESSE LEAVENWORTH
Courant Staff Writer
February 24 2006

We've all been there. Sitting on the pot, staring at an empty cardboard roll, the fury rising.

Most of us will let the anger drain and find an emergency alternative, but police in Florida say Franklin Crow went ape recently over the absence of bathroom tissue and smashed his roommate's skull with a sledgehammer handle.

"We've got the BTK killer, and now we've got the TPK killer - the `Toilet Paper Killer,'" said Frank Farley, a psychologist at Temple University in Philadelphia.

As Farley noted, the why in this case may go much deeper than tissue paper, but Crow is far from unique in his seemingly superficial motive for murder. Police around the country say young people are killing each other over mean looks, and one psychiatrist who works with convicted murderers says more hair-trigger homicides are likely because of a misdiagnosed, or undiagnosed, brain disorder.

In the Florida case, Crow, 56, was arrested Monday on a charge of murder in the death of Kenneth Matthews, 58, of Ocklawaha. Newspaper reports say Crow and Matthews were arguing about a lack of toilet paper in the home they shared when Matthews grabbed a rifle. Crow allegedly knocked the gun away and hit Matthews eight times in the head with a sledgehammer handle. Not finished, Crow hit his roommate two more times with a claw hammer, police said.

Closer to home, a Framingham, Mass., man was convicted of killing his wife after an argument about scorched ziti. After Laura Jane Rosenthal, 34, criticized him for burning their dinner, Richard Rosenthal smashed her head with a rock, then cut her torso open and impaled her heart and lungs on a stake in the backyard. Rosenthal lost an insanity plea and was sentenced to life in prison with no chance of parole for the 1995 killing.

And in Connecticut back in the late 1980s, jurors in the trial of Arthur Werley heard testimony that Werley killed Kimberly Labrecque in part because she said he looked like Howdy Doody. A red-haired and pale young man at the time, Werley allegedly snapped when Labrecque, 21, refused his sexual advances and likened him to the popular 1950s TV marionette. He shoved her down cellar stairs in his Torrington home, then bludgeoned her with a rock. Werley was convicted of manslaughter in 1990 and sentenced to 20 years in prison.

Farley, the psychologist, says, "I don't think people should panic and think of this as an epidemic."

However, he said, rage in America has spread far beyond fights between angry motorists, to airplanes, ball fields, ski slopes and the Internet. The anger, Farley said, is fueled in part by an increasingly busy, multitasking society, by family destabilization and by reality TV ringmasters such as Jerry Springer.

"I think, increasingly, we are making the private world public," he said. "There's a loosening of civil inhibitions. ... What you feel may lead to what you do."

The New York Times recently reported on the rise in killings prompted by seemingly petty disputes - over a dress, use of a soap dish, a cellphone - and by young people's perceptions of disrespect. Milwaukee Police Chief Nannette H. Hegerty called it "the rage thing." "We're seeing a very angry population, and they don't go to fists anymore, they go right to guns," Hegerty told the Times.

Some people, however, have biological trigger points that lie dormant, like a hairline crack in a house foundation, until something sets them off, says Dr. Donna Schwartz-Watts, director of forensic services at the University of South Carolina.

Part of her job as a forensic psychiatrist, Schwartz-Watts said, involves working with state prisoners. Four convicted murderers she sees have Asperger's Syndrome, a brain disorder related to autism. Among other problems, those who suffer from Asperger's lack social skills, have trouble empathizing with others and can be ultra-sensitive to sound, light and touch.

One of the cases she worked on, Schwartz-Watts said, involved a 22-year-old man convicted of killing an 8-year-old boy. The two had been trading video games outside when the boy ran over the man's foot with his bicycle, she said. The man went berserk, pulled out a gun and shot the boy.

She found that the man's sudden action was caused by an aspect of Asperger's Syndrome called "tactile defensiveness." Think of the movie "Rain Man," she said, when Tom Cruise's character tries to hug Ray, played by Dustin Hoffman, and Ray folds up and starts screaming.

Schwartz-Watts said she is trying to get a grant to study the prevalence of Asperger's Syndrome among South Carolina inmates. She fears that the disorder is more widespread than is known, and until society gets a better handle on it, "you're going to see a lot more of these crimes."

Fear and ignorance, a deadly combination. They do want to eliminate us via prevention. And as its genetic there's only one way to do that, prevent our births.

Dear me, what a load of old hogwash!

You don't need the brains of an archbishop to know that autistic people are far, far more likely to be the victim of a violent crime than its perpetrator, as a glance through the ever-unfolding stories of cruelty, abuse, and murder in AFF news will show.

" Police around the country say young people are killing each other over mean looks,....Crow, 56, was arrested Monday on a charge of murder in the death of Kenneth Matthews, 58, of Ocklawaha"

How do people get away with such low-quality writing?  This isn't an article, it's an idea salad, and stereotypes are the lettuce and tomatoes.  

I don't know if you can publish anything more random; unless your specifically going for stream-of-coinsciousness, and
I don't think they were

I sent this email to the courant;

I sent this email to the CDC;

I'm in the process of writing to a few government officials ATM, many that know (from previous letters/emails) I'm a real persistant Bugger   :lol:    :mad:

ironically, the cdc said about the chelation death that it was a drug mixup that killed the kid.  i think they are backing the curebies to make sure it is okay for us to be treated like second class citizens.  this is a massive attack on privacy and if not stopped soon, autistics could lose all rights to be consdiered human.  i just hope i can live in a world where everyone has equal rights to be treated like human beings instead of diseased people that need cures.

I have got to wonder if the issue with the CDC is in some way connected to the mercury hysteria controversy. Is the CDC an enemy of the parents who think their autistic kids have mercury poisoning?

I'm not at all suprised about the severely unethical breaches of children's and families' privacy by the CDC in the US, as in Australia some autism researchers wrote and had published a medical journal article in which they appear to admit that some children were added to a registry of autistics without consent from them or their parents/guardians.
http://www.mja.com.au/public/issues/181_...104-2.html

In the part of Australia where I live it is the usual practice to store records from school students' health and developmental checks done by a nurse along with their academic records at the school. The idea of confidentiality of health records does not apply to children in Australia, and no one but me objects to this! Bureacrats in Western countries regard children as the property of the state on loan to parents.

Amy,
Thanks for posting the CDC article.  The invasion of our privacy here in the states is a real concern, for Aspies and non-Aspies alike.  Believe it or not a similar thing happened to my family.  Regent University, which was founded by the Rev. Pat Robertson (heard of him?), was able to obtain health records from our city's public schools as part of a "study" they were doing. We found out about the study because we recieved a mailing from the university that asked "survey" questions, which made me suspicious. I contacted Regent about it, and they said they were provided certain information by the schools, but that the names of students were witheld. They said the school mailed the surveys for them.  I told them they wouldn't be collecting any further information from me.

The school said they're allowed to do this, as long as names are witheld.  I haven't checked on it any further, but it's worrisome. Sooner or later your employer, insurer, and who knows who else, will know where your birthmarks are.

Monastic,

Nice work on your letter to the courant.  I'm going to send one myself.  This forensic psychiatrist, Schwartz-Watts, says she sees four convicted murderers who have Aspergers, but did she choose these four herself?  She is afterall, trying to get a grant to "study the prevalence of Asperger's Syndrome among South Carolina inmates", so her interest in convicted criminals with Asperger's is already established.  That's four inmates out of how many?  Who diagnosed them? This is crappy journalism.

If anyone else would like to write, here's the courant's email for comments:  readerep@courant.com