What do you think about the autism registry?

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This question is for autistics and aspies only. What do you think about the autism registry?

Welcome to the Autism Registry website. The Autism Registry was created in 2007 when the legislature unanimously passed a bill and then Governor Corzine signed the legislation. The law requires all New Jersey licensed health care providers to report any child diagnosed with autism to the Autism Registry. A child has to be:

• A resident of New Jersey
• Under the age of 22 and
• Have one of these diagnoses:

1. Autistic Disorder;
2. Asperger's Syndrome,
3. Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS),
4. Rett's Disorder, or
5. Childhood Disintegrative Disorder (CDD).

The primary purpose of the Autism Registry is to link families to special child health case management services, which are county based coordinated service providers that have many years of experience and knowledge of local, county, and statewide resources available to families of children with special health care needs.

In 2009, the Autism Registry went electronic so that birthing hospitals, child evaluation centers, and autism centers could register a child through a confidential and private web-based network. Stand-alone pediatric offices and other office-based providers such as psychologists, psychiatrists, etc. do not currently have access to the electronic system, but can register by completing the paper version of the registration forms (the SCH-0 and the SCH-1 forms) and mailing them to the New Jersey Department of Health, Division of Family Health Services, Special Child Health & Early Intervention Services, PO Box 364, Trenton, NJ 08625-0364.

In addition to linking families to services, another goal of the Autism Registry is to obtain counts of children with autism in New Jersey and to describe the population in terms of demographics, diagnosis type and other characteristics so that we can plan for future services and policies. A number of issue briefs have been developed related to autism in New Jersey and the Autism Registry. These briefs can be found under the "Information & Resources" tab to your left. We have also included links to other research and data on autism that is available on the web.

I think it has its benefits.

I don't think the general public should have access to it--only health-care providers, psychologists, psychiatrists, etc. I, especially, don't think that employers should have access to it, like it has access to background checks.

Hey Egghead, I've missed you!

I hope all is well with you.

Have you been to one of those street movies on (I believe) Queen St in downtown Ottawa?

Ottawa's a great town!

Back from holidays in Nashville - kind of a neat place if you've never been.

I work right downtown Ottawa, one street down from Queen St. - always lots to take in. If you're ever in town, let me know and I'll play tour guide.

All the best

This is the first I've heard of it, and my first impulse was to be kind of creeped, because the idea sounds too much like a sex offender registry. But if they keep it suitably confidential, it shouldn't be any problem.

I am a bit annoyed by the usual "screw autistic adults" attitude though. I can understand if they aren't able to provide services for us, but aren't they at least interested in demographics or collecting information for the possibility of future services?

During the 1930's there was a Jewish Registry. I need say no more.

The Registry is for "linking families of autistics to services" ? What "services" might those be ? Routing children and families to local crematoriums and/or gas chambers ?

Amazing how govt is so lazy they'll create a registry and let civilians incriminate themselves at the govt's leisure. Saves on tax dollars, that's for sure.

I just don't believe this. You guys think this is a good idea ?

(Goes back to watching dark Twilight Zone episodes)

What is this crap. Why do I need to be in some registry, and why do I need someone's stupid services??

On first impulse, I give this a definitive no.

It's chilling. I am very shocked at the wholesale cancellation of privacy rights and involuntary forced participation in the land of the free.. The state has made decisions which will affect the adult lives of the children who are powerless to protest about the wholesale theft of information for purposes which will not have been fully disclosed; their rights have been disregarded as if they are lesser citizens, lesser human beings, less entitled to privacy and ownership of their own information. How can the adults later opt out if they object? They can't..

This is horrific, ominous, chilling... coercion should always make us question the stated reasons for anything - there are two sets of reasons for political change: good reasons (the ones given to the public in the p.r. spin) and real reasons (the ones the public are never meant to discover until it is too late to protest).

OMG. Makes me feel ill just reading about it. The land of the free???

I had a hunch that Autism $peaks would have been the promoters of this registry, and sure enough they were. From their perspective it will be a major victory for the registry to be compulsory and identifying. If all they wanted was health information, then names need not be used at all; codes are used in that kind of survey to keep identities confidential and unrelated to the information collected.

But it appears that the architects of this law want the names. And also the addresses, no doubt, and all the personal information relating to the child, which also invades the parents' privacy.

Not that Autism Speaks would object to that: the bill and the registry seem designed to give AS unauthorised access to information that they will use to lobby and recruit families directly, to enlist them in the fight against the "leprous scourge" of autism.. as Suzanne Wright put it at the Vatican; and I would further guess that AS has its own register, which may come in handy later on for use by its "own" politicians, financed bought and paid for by AS.

https://www.autismspeaks.org/news/news- ... -raw%5D-65

Nothing occurs in isolation with AS; there is always a hidden agenda unifying all its initiatives (guess what that hidden agenda is, lepers... )

I don't like it, it has too much of a "yellow star" feel to it. In the third X-Men movie, the US came up with a "mutant registry" that all mutants had to be on. It was later used to discriminate against, persecute, and kill mutants for no reason beyond their genetics. Our medical histories should be kept private between ourselves and our individual doctors; the government has no business collecting diagnoses like that.

I'm more interested as to why they are leaving out Atypical autism, which also counts to the spectrum.

I'm with B19 -- this is messed up. Strikes me as sinister, because it's too reminiscent of other "registers" created and used for genuinely sinister purposes. Don't be so sure there's purely good intentions behind stuff like this.