Whose Planet Is It Anyway?

Wednesday, April 11, 2007

Big Brother Is Watching

In the United States, using the advanced technology of the 21st century, vigilant government agencies seek to protect citizens by conducting surveillance on potentially dangerous groups.

Are they targeting terrorists?

Gun-toting street gangs?

Pedophiles and other sex offenders?

Well, actually, when a surveillance law is passed in today's America, it's quite likely to target the autistic minority population. Under the ambit of "disease control" agencies, mandatory state registries are collecting data on autistics.

Here's an excerpt from Delaware's autism surveillance law (16 Delaware Code Annotated, section 221).

The intent of the General Assembly is to establish and maintain an autism surveillance system and registry for the State.

Responsibility for establishing and maintaining the system and registry is delegated to the Department of Health and Social Services, along with the authority to exercise certain powers to implement the system and registry. To ensure an accurate and continuing source of data concerning autism, the General Assembly by this subchapter requires certain health care practitioners and all hospitals and clinical laboratories to make available to the Department of Health and Social Services information contained in the medical records of patients who have a suspected or confirmed autism diagnosis.

Note the use of the word "suspected." When that word is used, it means that even if you don't have an official diagnosis, you're still not safe. If your family physician, your counselor, or any other informant decides that you look autistic—you could be a surveillance target. Delaware even requires dentists to report autistic patients (the state is collecting data only on children at present, but that could change at any time).

Parents, beware: if you take your child for a diagnostic evaluation so that you can get school services, and the psychologist notices that the child inherited some of his or her autistic traits from you (as is often the case), your name could end up in a government database too.

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  • Actually, it is even weirder than that. They have a weird definition of "autism".

    (1) "Autism" means any structural or biochemical abnormality, regardless of cause, diagnosed at any time before or after birth, that requires medical or surgical intervention or that interferes with normal growth or development.

    So a congenital heart defect is "autism" if it "interferes with normal growth or development"?

    What about the loss of a limb through accident? Isn't that a "structural abnormality" regardless of cause?

    By Blogger daedalus2u, at 11:42 AM  

  • I wondered about that too, Daedalus2u. They probably meant to leave some flexibility for changes in how the psychologists define autism, but they went too far in the direction of flexibility and ended up with a completely meaningless definition.

    By Blogger abfh, at 12:37 PM  

  • Sadly, the vast majority of definition work on autism is done by medical and clinical personnel, and this is what happens...

    If it were left to educational and developmental psychologists (whose training emphasises much more the role of society in the work we do), I think the scene would be vastly different.

    It isn't a mental illness, and nor is autism a disease: clinical/medical perspectives have lead us to that sort of legislation...

    Maybe (and JBJ-bleeding-r will be happy about this), us auties should just f*cking kill ourselves have bloody done with it.

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 3:30 PM  

  • Since the advent of the Patriot Act, and perhaps for some time before, I have been ashamed to call myself an American. I might as well go ahead and say it now, along with whatever else occurs, since I will soon have my own CIA file regardless.

    By Blogger Bev, at 7:07 PM  

  • David, If you killed yourself, I'd feel terrible. I don't think I could deal with that guilt of, perhaps having pushed you over the edge. Why don't you cure yourself instead?

    By Blogger John Best, at 8:51 PM  

  • Would this law be somehow connected to the high amount of service children with autism receive, and the associated costs? I hae had several people recommend I move to Delaware or New Jersey and get Joey into public schools there for special education because they are supposed to provide excellent services- and adequate amounts of it.

    I'm not too keen to register him with anyone unless I know what that information is for. Do kids with CP have to be registered? MR? ED? LD? Why? Once registered information is recorded, there is little control over how the government will use tha information. :(

    By Blogger Joeymom, at 11:25 PM  

  • A few years ago, when I was still a minor and in high school, my parents took me to a private psychologist to see if I was on the spectrum. She confirmed that I was, but my parents decided not to have it recorded with any official instituions at that time. I've always thought they were just a bit embarrassed and maybe paranoid, but stuff like this makes me realize they might have actually been prudent. Ugh.

    By Blogger Unknown, at 12:54 AM  

  • David: You might want to read a recent entry on Amanda's blog about autistic people and suicide, in which she makes the point that living, not dying, is the ultimate f*** you to autie-haters.

    Bev and Sarah: This is why I don't blog under my real name, and my parents also were very careful to make sure the word "autism" wasn't mentioned in any official records. As the old saying goes, you may be paranoid, but it doesn't mean they're not out to get you.

    Joeymom: As Kristina Chew pointed out recently, the cost of autism services actually is much less than most people think. She referenced a report from the Hoover Institute that gives the actual statistics:

    Media reports often emphasize the growth in students with autism but their numbers remain very small, less than 0.3 percent of enrollment. The total cost of special education services for autism does not exceed 0.45 percent of all spending.

    I believe you're right that "autism surveillance" laws are related to the public perception that autism services are extremely costly and are about to bankrupt the schools, the disability services programs, etc., but it's really just a lot of apocalyptic nonsense.

    By Blogger abfh, at 9:55 AM  

  • I once dated someone in college who was diagnosed with autism when she was very young. While she was in graduate school, she applied for a summer position with one of the government labs (the one outside of Albuquerque, NM). Since they do nuclear weapons development there, she needed to get a security clearence.

    Needless to say, she was turned down for the clearence. When the FBI was doing her background check, they found out about her autism, I believe from her school records.

    She still got the job, but she was restricted to the unclassified part of the facility. Her field is bioinformatics, so her work did not need any sort of clearence. Even so, it still rankled.

    Has anyone here applied for a clearance? I would imagine that places like the National Security Agency are full of aspies, who were able to get cleared.


    By Anonymous Anonymous, at 11:28 AM  

  • Considering we pay over $400 per week for Joey's therapies- and remember, school is free- I would call the costs for supporting an autistic child "significant." Joey right now doesn't require an aide, we don't have him in a full ABA program (that would be $57,000 per year, which is more than I make), and he's on no medications- so I know this could be a LOT more expensive.

    Just as a contrast, sending my other child to private preschool costs about $100 per MONTH.

    Of course, the cost doesn't reflect the value; having Joey be able to function and communicate will not only save money in the long run, but the value for him and for us is beyond something as common as money. My point is that I can see where the government might want to keep track of where their money is going. After all, they are very much more into costs than value. :P

    By Blogger Joeymom, at 10:42 AM  

  • "David, If you killed yourself, I'd feel terrible. I don't think I could deal with that guilt of, perhaps having pushed you over the edge. Why don't you cure yourself instead?"

    You cure yourself of ignorance, John.

    And while you're at it, go and apologise to Amanda for the complete and utter bastard you've been to her.

    You have no sense of guilt at all. You push all the time. You never stop.

    By Blogger David N. Andrews M. Ed., C. P. S. E., at 7:18 PM  

  • I really hate big brother!

    Here in the UK you can;t go anywhere without being captured on camera.

    By Blogger Philip., at 5:17 AM  

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