Are You Registered?

A registry is a listing organizing information. People create registries of all sorts of things, from animal pedigrees to copyrights and domain names. We register for happy things, like our gift preferences with shops when getting married, or anticipating the birth or adoption of a child.

Medically, people register to receive organ donations. Companies may register recipients of prostheses in case there needs to be follow-up care. To prevent or manage epidemics, registries of affected individuals may be kept to monitor disease containment, treatments, and mortality.

People also register pets to help ensure their return. We also register things, generally for licensing and taxation purposes, as some of these can be dangerous items:

Automobiles
Motorcycles / Motorbikes
Aircraft
Boats
Guns
Televisions (dangerous item: yes or no?)

Many landmark events in our lives require moving datasets from one office to another. College students make a number of trips to their uni’s registrar to manage the appropriate transcript transfers. College students with disabilities may choose to register with the uni’s access office if they are to receive accommodations. (Naturally, doing this requires even more paperwork.) Part of getting one’s diploma means that you are now a Papierkrieg veteran (German: “paper war” i.e. bureaucracy).

Once graduated, people in some licensed occupations may be registered to help ensure that agencies can successfully maintain optimum staffing, and people will be able to secure jobs as needed.

To receive various legally sanctioned benefits, people also register major personal events with various local or national government agencies, to acquire the necessary Very Important Pieces of Paper — after all, nothing officially exists without documentation! All but the last two of these are events that people are generally glad to mark in their lives, aside from the bureaucratic hassles associated with such:

Birth (someone else’s)
Marriage / Civil Union
Divorce / Annullment
Travel passport
Work visa
Business partnership
Military service
Death (someone else’s)

Speaking of death, on the darker end of things, groups of humans have been registered for others to monitor who these people were, and where they were. The rationales for these kinds of registration were that the categories of people were a concern to the authorities because of who or what they were. They didn’t have to be proven dangerous, they just might be because they were different. In such cases, registration was not optional; if one didn’t register themselves, they would be registered by any other authoritative body who knew their identity. Even suspected persons had to be investigated to assess if they were a burden to the public safety.

So what makes a category of humans? That’s really not a simple quantitative question. It’s interesting to note that for over half a century, evolutionary biologists have not classified human “races” as being genetically-discernable categories. Certainly there’s not sufficient difference if humans are described by qualities such as national background or religion – these are just social constructs. Qualities such as skin tone or sexual orientation have been used to categorise people, but these labels are not as black or white (sorry) as some would have them.

Or, blue. People’s skin color ranges from various qualities of pink or brown, but you know, someone who’s blue is very different.

Art imitated life in the X-Men comics, where mutants like Nightcrawler were also specially censused under the Mutant Registration Act. Here the dialog about the balance of personal liberties against concerns for “public safety” was played out. Naturally, this plotline by Chris Claremont echoed several historical events of World War II, namely the registration (and subsequent incarceration in concentration camps) of several groups of people, including Japanese-Americans and Japanese-Canadians in their respective countries, plus Jews, Romani, homosexuals and others in Nazi-controlled Europe.

But you know, that’s fiction. And, ancient history. (That’s “ancient” per school-child standards.) This however is current events per school child standards; in the US state of Delaware, where “It’s good being first” according to state motto, all autistics (under the age of 18) are required to be registered.

4109 Autism Surveillance and Registration Program

1.0 Purpose

1.1 Autism is a severe neurodevelopmental disorder whose prevalence appears to be increasing in Delaware and across the United States. An Autism Surveillance and Registration, or an Autism Registry, will enable the Department of Health & Social Services (DHSS), Division of Public Health (DPH) to collect basic descriptive information on the individuals with autism, to track changes in prevalence over time, to inform the planning of service delivery to children with autism and their families, and to facilitate autism research.

To facilitate research we need to know the identity of every single autistic child in the state of Delaware?

1.2 The purpose of the Autism Registry is to provide an accurate and continuing source of data concerning autism to provide information to Public Health officials to help to ultimately decrease the autism morbidity burden associated with the disorder. The Autism Registry will gather data to assist with: prevalence estimation, cluster investigation, risk factor identification, and outcome assessment.

Holy cows, this is not a contagious condition. We might say, “Oh well, these children often need services,” but you know what? I don’t find registries for people with Down’s Syndrome, even though physiological anomalies sometimes accompany DS, and people with DS often have specific educational needs. Nor do I find registries for Deaf people, or people with Tourette’s. Then again, one doesn’t read catastrophic articles about “epidemics” of such.

3.1 The registry shall collect information on any child under the age eighteen (18) who is a resident of the state of Delaware, or whose parent is a resident of Delaware, and who is diagnosed at any time prior to age eighteen (18) as having confirmed autism. For the purposes related to the registry the Department shall have access to any medical record of the child with confirmed autism.

Any medical record?

3.5 The following persons and organizations are required to report occurrences of autism within 30 days of diagnosis to the Division of Public Health.

3.5.1 Any physician, surgeon, dentist, podiatrist, or other health care practitioner who diagnoses a child with autism under age 18 who is not known to be previously reported. Other health care practitioners will include but not be limited to: psychiatrists, clinical and school psychologists, speech and language pathologists, licensed clinical social workers, and nurses including school nurses;

3.5.2 The designated representative of any clinical laboratory conducting assessment, evaluation or research that performs any test which identifies a child or children under age 18 with confirmed autism not known to be previously reported; and

3.5.3 The designated representative of any hospital that diagnoses a child or children under age 18 with confirmed autism.

(Well, that’s pretty much reportage by anyone. Because of course, dentists are highly qualified to make such a diagnosis – not.)

Okay, maybe that’s just tickling my paranoia bone too much. Funny thing is, one doesn’t hear much about this. The event came and went quietly onto the books. Most people were silent; hey, who cares about mass registration? Well, ‘cept maybe Martin Niemöeller.

6 Comments

  1. Justthisguy said,

    17 May 2007 at 8:18

    I believe that there was a famous European physicist (sorry, I don’t remember his name) who worked on the Manhattan Project and refused to be fingerprinted. I think he wanted to be able to hide out, in case the Nazis won.

    As a half-Aspie gun enthusiast, I’m well aware that registration inevitably leads to confiscation; it happened in the UK, in NYC, and in Kali-fornia.

    I was very annoyed when the State of Florida started using digital photos on drivers’ licenses. They tried them out on the prisoners in the penitentiary, first.

    I’m old enough to remember people getting all exercised about the South African government using photo ID cards to enforce apartheid, and getting angry at Polaroid for helping them out. At least the Polaroid system back then only made one image, on the card itself; no centrally-recorded copy of it.

    What is it about some people, that they want to mind other folks business and control them

  2. Joeymom said,

    16 May 2007 at 3:40

    Well, I’m not moving to Delaware.

    In Virginia, the school system keeps track of this kind of thing through Special Ed. Kids in special ed have to be categorized; “autism” was added as a category in the 1990s. I don’t know if that’s a state thing or a federal thing. The fun part is that the categories change what is needed to qualify for services. By having Joey categorized as autistic, instead of developmental delay, he will basically always have an IEP and be protected under IDEA for education services. Without it, once his academics come back as OK, he’s be stuck in a 504 plan, which has no funding and less legal weight for enforcement (here, a 504 is kind of like, “here’s some nice suggestions for deaing with this child in your classroom, if you care. Good luck.”)

  3. abfh said,

    15 May 2007 at 13:58

    This is why the autistics in my family (there are several) have been very careful to avoid having their diagnostic information, or that of their kids, on file anywhere. No school records, no medical insurance databases, no autism surveillance registries. Yes, it gets expensive paying for services in cash, private school tuition or homeschooling materials, etc., but at least we don’t have to worry about the midnight knock on the door and being sent off to concentration camps with yellow puzzle pieces sewn to our clothing.

    And we keep passports and cash handy, just in case it might become necessary…

  4. Sally said,

    15 May 2007 at 13:20

    Two thinks occur to me

    1 – Geographically the USA is bigger than the UK and when I read that the various states can make their own laws, independent of the rest of the United States, I am thankful that in the UK new laws are consulted on (in theory) and decided within a national framework, even though budgets are individual to counties, which leads to a ‘post code lottery’ for essential care. So in the USA there is a smaller pool of people (those likely to be affected) to keep a watch on these things. And a smaller pool of people – in this case just you !? – to raise awareness. I have been reading The Quaker Agitator for a year now, so I am beginning to understand how the USA differs from here in this respect.

    2 – What happens in the US when people move from one state (geographical not medical !) to another – do they have to read up on whether the new state will allow them to continue to live in the way they had lived in the previous state ? Does this restrict or influence peoples’ decisions on which state they live in, if they have a choice ?

    Ok, 3 things:

    3 – Like anything that requires people to be registered – taxes, medical appointment waiting lists here – people will find a way around being so registered, which will skew/change the results on the register – with good and bad outcomes. I could imagine people now not wanting to be diagonosed with a condition that results in this sort of registration, even though some registration is essential to get the health care etc.

    What a nightmare.

    I have a friend with Tourettes (who holds a position of trust and responsibility which is fulfilled with dedication), and a gentle soul of a nephew with Asperger’s; I would feel very uncomfortable if they had to be registered in the way you describe.

  5. Penny said,

    15 May 2007 at 13:16

    Actually….when a child with a recognized chromosomal or genetic difference is born, it’s a box to tick on their birth registration–it’s part of the birth registration, at least in some states. (So is low birth weight, so are many common anatomical differences, like hypospadias; IIRC, there were a LOT of boxes to tick on the North Carolina birth registration form.)

  6. Justthisguy said,

    15 May 2007 at 8:23

    Do you approve of all those things, which aren’t autistic people, being registered, Ma’am? I can think of several on that list which should not be registered.

    Hell, I think most things on those lists should not be registered, except voluntarily.

    I really don’t think the State needs to know if or when you were born, or that you have a motor vehicle, or what you look like, or what your fingerprints look like, or if you keep a pistol or a kitty-cat. (I’ll admit that a republic can REQUIRE a citizen to own a rifle, boots, rucksack etc and show up for militia drill or he doesn’t get to vote.

    The State’s attempting to require one to register his neural configuration with said State is just right crazy, and grounds for the Militia to assemble and resist that sillyness


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