Re: Autism Registry

[Guest guest]

----- Original Message -----

>

>

> This proposal would require health care professionals to report diagnoses

> of

> autism in children from birth through twenty-one years of age.

>

Health care professionals would be

> required to inform the parent, legal guardian, custodian or individual

> through age twenty-one of the right to refuse to report identifying

> information.

Why through age 21? I thought the age of legal adulthood is 18? I'm

confused. Why is the age of majority so inconsistent in the US?

D.

[Guest guest]

Because teens over here are stupid as a bag of rocks. They think they are

adult whenever they decide they are. Wherever I have gone online, I have yet

to find teens who don't acknowledge that they have a lot to learn yet, and

are not adult....one thing that really bothers me about being in online

games, game forums...cripes, any thing where there isnt some kind of

controls or some way to know for sure the ages of who you are talking to.

And even then, you don't know if thye are liars about it

Sorry....this is a real sore point for me...

Gail

-- Re: Autism Registry

----- Original Message -----

>

>

> This proposal would require health care professionals to report diagnoses

> of

> autism in children from birth through twenty-one years of age.

>

Health care professionals would be

> required to inform the parent, legal guardian, custodian or individual

> through age twenty-one of the right to refuse to report identifying

> information.

Why through age 21? I thought the age of legal adulthood is 18? I'm

confused. Why is the age of majority so inconsistent in the US?

D.

------------------------------------

[Guest guest]

> Because teens over here are stupid as a bag of rocks. They think

> they are

> adult whenever they decide they are. Wherever I have gone online, I

> have yet

> to find teens who don't acknowledge that they have a lot to learn

> yet, and

> are not adult....

From what I've read, teen-aged humans do not yet have the neuronal

capacity to understand their limitations in those areas.

Jane

[Guest guest]

Well, they tend to act like overgrown kids well into their 20s and even 30s

and beyond, because they get treated like babies and imbeciles. They get

overprotected by parents and most everybody else, and don't have much chance

to make their mistakes and learn from them. They never really seem to grow

up. There are exceptions, of course.

D.

Re: Autism Registry

>

> ----- Original Message -----

>

>>

>>

>> This proposal would require health care professionals to report diagnoses

>> of

>> autism in children from birth through twenty-one years of age.

>>

> Health care professionals would be

>> required to inform the parent, legal guardian, custodian or individual

>> through age twenty-one of the right to refuse to report identifying

>> information.

>

>

> Why through age 21? I thought the age of legal adulthood is 18? I'm

> confused. Why is the age of majority so inconsistent in the US?

>

>

> D.

>

>

> ------------------------------------

>

>

[Guest guest]

In general, it seems the typical male only begins to grow into some adult

sense around 25 or so....which scares the hell out of me, when you think of

how many people marry right out of high school. Or, for that matter, the

leaders of the guild I am in, in the Wonderland game. The boy is 15....and

he and his 'girlfriend' have legal permission to marry this summer!

Gail

-- Re: Autism Registry

Well, they tend to act like overgrown kids well into their 20s and even 30s

and beyond, because they get treated like babies and imbeciles. They get

overprotected by parents and most everybody else, and don't have much chance

to make their mistakes and learn from them. They never really seem to grow

up. There are exceptions, of course.

D.

Re: Autism Registry

>

> ----- Original Message -----

>

>>

>>

>> This proposal would require health care professionals to report diagnoses

>> of

>> autism in children from birth through twenty-one years of age.

>>

> Health care professionals would be

>> required to inform the parent, legal guardian, custodian or individual

>> through age twenty-one of the right to refuse to report identifying

>> information.

>

>

> Why through age 21? I thought the age of legal adulthood is 18? I'm

> confused. Why is the age of majority so inconsistent in the US?

>

>

> D.

>

>

> ------------------------------------

>

>

[Guest guest]

2008/12/10 Delila :

> Well, they tend to act like overgrown kids well into their 20s and even 30s

> and beyond, because they get treated like babies and imbeciles.

Hey, hang on ... you're writing off a lot of the population there.

It's true we tend to notice only the bad ones. I know some nice kids,

but they are not the ones hanging on street corners harassing passers

by.

Kids make mistakes, and society pressures them to grow up too fast, so

noi surprise they are trying to be adults, and failing, long before

they actually mature.

I know some kids are awful, but not all of them.

Ruth

[Guest guest]

D - in the US, the age of majority tends to be determined by federal law for

some things (voting, military service, etc.), and by states for others (drinking

age, marriageable without parental consent age, etc.). Therefore, the wide range

of when adult rights and responsibilities kick in.

 

The federal special education law IDEA grants 16 year olds partial control,

and 18 year old students total control over their education except if their

state has ruled them so severe/profoundly disabled that their rights are

waivered back to their parents/caregivers. The parents and students must be

informed of this at every annual IEP, starting by no later than the student's

14th birthday.

 

Until a person's 22nd birthday, grade K-12 education is at public expense.

 

S.

 

" I won't do all the neurotypicals want, but you have to go halfway... You can't

degeekify the geeks, but you

can be a polite geek. " -- Temple Grandin

 

" Cherish forever what makes you unique, because you're really a yawn if it

goes. " -- Bette Midler

[Guest guest]

----- Original Message -----

>

>

> Hey, hang on ... you're writing off a lot of the population there.

I said there were exceptions. But children today do tend to get

over-parented and overprotected. 15-year-olds get treated like

ten-year-olds. Parents are always hovering around them, micro-managing them.

Kids become emotionally stunted through this.

> Kids make mistakes, and society pressures them to grow up too fast,

On one hand they grow up too fast, but on the other they're treated like

children by the law and parents/teachers way too long. They call it extended

adolescence.

D.

[Guest guest]

Hi all here,

A very convoluted question indeed... I mean, here in the US, the " age

of majority " is 18-when one can serve in the military and serve their

country. They can purchase/drink alcoholic beverages (depending on the

state you reside in) and yes, one has the right to vote at 18.

However, there's always SOME caveat. Physical/mental/neuroogical health

play big time here with employment, education and such that is

considered everyday activities for " normals. " Hell, I think there

oughtn't be an age limit especially in the era of boomerang adults and

with the economy the way it is! I mean, really now! We all deal with

various crises in life and " maturity " comes with how you deal with these

monkey wrenches/curve balls life may deal you. I have met some good

people who are my nephew's and niece's ages who have a straight head on

their shoulders. They go to worship, work in their community outside of

school while planning on furthering their education. Some are even

caregivers for their parents/families. Some OTOH, give up the ship too

soon-drugs, crime, gangs or running with the wrong crowd to look " cool. "

So, props to those doing the right thing in life!

Wanda

http://community.webtv.net/tikigalharkins/LETSTALKASPERGERS

[Guest guest]

I've read the same thing. It seems the frontal lobes, the part of the brain

responsible for wisdom, foresight, and abstract thinking, does not fully mature

till around the mid-20's. This part of the brain is much more developed in

primates than in other mammals, and much more developed in humans than in other

primates. It's just part of the price we pay for being human, to take a very

long time to mature. It's an odd trick that Nature plays on us, that we are

fully grown physically and sexually long before our cognitive capacities are

fully mature.

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[Guest guest]

> From what I've read, teen-aged humans do not yet have the neuronal

> capacity to understand their limitations in those areas.

>

That's bunk. In other cultures that put the age of adulthood younger,

such as 13 or so, teens don't act so stupid, so it's not biological. I

think it's that teens in our society feel like adults but are treated

like children, so they try to prove that they're adults by doing stupid

things.

Personally, I have the opposite issue - I'm an adult but I feel like a

child.

Ettina

[Guest guest]

> This proposal would require health care professionals to report

> diagnoses of autism in children from birth through twenty-one years

> of age. N.J.S.A. 26:2-187 requires the Department of Health and

> Senior Services to implement the reporting of autism and to

> establish an autism registry. Autism is a developmental disorder of

> brain function that is typically manifested by impaired social

> interaction, problems with verbal and nonverbal communication and

> imagination, and unusual or severely limited activities and

> interests.

>

> Under the proposal, health care professionals would not report the

> personal identifying information of a child diagnosed with autism

> if the child's parent, legal guardian or custodian objects to the

> reporting of this information, or if the individual through age

> twenty-one who is diagnosed with autism objects to the reporting.

> Health care professionals would be required to inform the parent,

> legal guardian, custodian or individual through age twenty-one of

> the right to refuse to report identifying information.

Prejudiced, stereotypical description. We don't have impaired

imagination, and narrow interests aren't 'limited'.

It would make for more accurate estimates of prevalence, but there's

still the problem of what autism actually is used to refer to. That's

the biggest issue with estimating prevalence - defining autism.

I don't know if I like it being a mandatory reporeting thing. I

wouldn't want myself put on such a registry, even if they didn't

include identifying information. I want some control over who gets to

know about my features.

My biggest question, however, would be what the information will be

used for. Will they keep researching genes and such and not the stuff

that will actually benefit autistics?

>

> Under the proposal, the information on individuals with these

> conditions that is reported to these registries would remain

> confidential. The data contained in these registries would be used

> for public health research, needs assessments, and public health

> investigations.

>

What kind of research and investigations, and what does 'needs

assessments' mean?

Ettina

[Guest guest]

2008/12/11 abnormaldiversity :

> That's bunk

It's scientifically proven bunk :-)

In other cultures that put the age of adulthood younger,

> such as 13 or so, teens don't act so stupid, so it's not biological.

Yes, but they also have more space and less conflicting pressures on

their teens, not to mention they daren't let arranged marriages and so

forth fail, however badly they are working out.

I

> think it's that teens in our society feel like adults but are treated

> like children, so they try to prove that they're adults by doing stupid

> things.

I think they are confused because in some ways they are expected to be

adults and in other ways they are restricted like children. And

puberty makes everything worse.

> Personally, I have the opposite issue - I'm an adult but I feel like a

> child.

Yes, I get that. I was very afraid of reaching 18yo and being seen as

a competent adult when I knew I wouldn't be. In some ways I'm still

not, and I find it difficult to take some " grown up " things seriously.

Ruth

[Guest guest]

2008/12/11 abnormaldiversity :

> Prejudiced, stereotypical description. We don't have impaired

> imagination, and narrow interests aren't 'limited'.

It's kind of badly phrased and I see what you're saying ,but many on

the spectrum have difficulty imagining what others are thinking or

feeling, which is what it usually means. Some of us learn, to a

greater or lesser extent, but often it remains an issue for life.

Narrow interests are not limited if we can make ourselves stop and do

necessary things too. If we can't they can be quite disabling. Of

course some clever NTs use them to reward us for doing what they want

us to do, which can be good or bad depending on what they are trying

to teach and how they go about it.

It's easy to get offended however we are described from the outside,

according to medical models - they are only focussed on areas of

impairment and how we differ from " the norm " . Maybe that will change

one day.

Ruth

[Guest guest]

----- Original Message -----

>> From what I've read, teen-aged humans do not yet have the neuronal

>> capacity to understand their limitations in those areas.

>>

> That's bunk. In other cultures that put the age of adulthood younger,

> such as 13 or so, teens don't act so stupid, so it's not biological.

**I agree. Even in Western culture, not all that long ago, a lot more was

expected of children and teens, and most of them rose to the occasion. Now,

they're coddles and babied way too long, that's why they act like children.

I

> think it's that teens in our society feel like adults but are treated

> like children, so they try to prove that they're adults by doing stupid

> things.

> Personally, I have the opposite issue - I'm an adult but I feel like a

> child.

**I don't 'feel' my age either, except my aches and pains. I have interests

that most women my age don't share. Oh well. I also have the problem of

people often treating me as if I were a child, something that irks me. Maybe

it's a unconscious vibes I give off.

D.

[Guest guest]

>

> 2008/12/11 abnormaldiversity :

>

> > That's bunk

>

> It's scientifically proven bunk :-)

>

Is it? I know there's proof teenage brains work differently. But is

there any proof that these differences, rather than culture, are the

cause of the reckless behavior teens often show?

Ettina

[Guest guest]

The idea of any kind of registry for autistics gives me the shivers. I do

not want to be on any kind of official database as autistic....creeps me out

Or hasnt anyone here seen " X Men 3 " , and what they did to those who they

deemed to be 'different'......they wanted to either make them like everyone

else, or kill them.

Gail

-- Autism Registry

Hello,

Below is the public announcement on the New Jersey Autism Registry and the

Public Comment Period. ASAN has been asked to submit our thoughts on this to

the New Jersey Department of Human Services, where we do have some

pre-existing relationships that will make for meaningful consideration of

our point of view. This is a real opportunity to communicate what we want

and develop a document that we can utilize as a model for other

jurisdictions that adopt similar registries. What do you think should be

included in our public comment? Feel free to copy this inquiry to other

listservs and forums, requesting that people on communities this has been

forwarded to respond directly to me at aneeman@...

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

Department of Health and Senior Services Proposes New Rules and Amendments

at N.J.A.C. 8:20, which establishes the Birth Defects Registry

The Division of Family Health Services in the Public Health Services Branch

of the Department of Health and Senior Services proposes new rules and

amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry.

The proposal would establish an autism registry and a severe neonatal

jaundice registry.

This proposal would require health care professionals to report diagnoses of

autism in children from birth through twenty-one years of age. N.J.S.A.

26:2-187 requires the Department of Health and Senior Services to implement

the reporting of autism and to establish an autism registry. Autism is a

developmental disorder of brain function that is typically manifested by

impaired social interaction, problems with verbal and nonverbal

communication and imagination, and unusual or severely limited activities

and interests.

Under the proposal, health care professionals would not report the personal

identifying information of a child diagnosed with autism if the child's

parent, legal guardian or custodian objects to the reporting of this

information, or if the individual through age twenty-one who is diagnosed

with autism objects to the reporting. Health care professionals would be

required to inform the parent, legal guardian, custodian or individual

through age twenty-one of the right to refuse to report identifying

information.

The proposal would require clinical laboratories to report newborns with

severe neonatal jaundice, a condition that is caused by a buildup of

bilirubin, an orange-yellow pigment found in bile. Toxic levels of

bilirubin can cause severe neurological damage called kernicterus. N.J.S.A.

26:8-40.21 requires the Department to establish a severe neonatal jaundice

registry.

The proposal would also make the reporting requirements for congenital

conditions more consistent with the Centers for Disease Control and

Prevention (CDC) Guidelines, and extend the reporting requirements for

congenital conditions from birth through five years of age.

Under the proposal, the information on individuals with these conditions

that is reported to these registries would remain confidential. The data

contained in these registries would be used for public health research,

needs assessments, and public health investigations.

The notice of proposal appears in the November 17, 2008 issue of the New

Jersey Register.

The public has until January 16, 2009 to comment on the proposals. Persons

wishing to comment on the proposals must submit their comments in writing to

Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New

Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ

08625. Written comments on the proposals must be postmarked on or before

January 16, 2009, which is the close of the 60-day public comment period for

the proposals.

--

[Guest guest]

My first thoughts are:

Why is this needed? Just for research? If so, I'm not sure there is enough

information out there, as people on the spectrum are often misdiagnosed with

other things and people are labeled as autistic spectrum when they aren't.

Seems like a very flawed list.

Also, doctors report things ad we don't know it. I doubt they are all going

to ask and explain. If they want to report cases without personal information,

they can do that anyway, and they do. Why must they report personal

information?

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