Thursday, April 20, 2006

Autism--Worst Welfare Disaster in History

A group of South Carolina lawmakers are trying to pass a bill that would require private insurers to cover services for all autism patients regardless of age. Industry lobbyist, Larry Marchant says that if passed, the bill would cause the health insurance premiums that individuals or families pay to increase 25%, and would average out to an extra $200 a month for those enrolled in family plans, according to on March 26, 2006.

In addition, the financial burden that a disorder like autism takes on families is absolutely devastating. Upon becoming autistic after receiving vaccines at 16 months, Laura Bono says her son, "Jackson's medical and therapy needs began taking every bit of money we had saved or ever would have saved."

"The total we have paid for Jackson's medical, nutritional and private therapy expenses so far," Laura says, "is roughly $685,000 since August 1990."

That amount averages out to well over $50,000 a year.

There is no escaping the fact that the epidemic is having a profound impact on society; not only on autistic children and their families, but on our public health care programs and school systems as well. And, until vaccine-makers are held accountable, taxpayers will continue to carry the full burden.

I wish I had $50,000 a year to give to Ben for his "therapy". I think it would have something to do with living on a tropical island.

Oh, wait...That would be MY therapy!

These are the parents I "shocked" when I sent them to "". I'm not kidding. I am from the city in America where this is going on. And I belong(ed) to a group that is instrumental in seeing it come to fruition, the $100,000 a year therapy PER CHILD that they want to see legislated to be covered by insurance. Mr. Lovaas is wetting his pants over this, I'm sure.

Hell, they could have saved $50,000 a year if they would have read the blog. (Once autistic, always autistic. Get used to it...)

One thing about Ben's therapy...If it interfered with our ability to pay, he didn't get it. And when we moved to South Carolina, if it interfered with the family budget say, with funds earmarked for going to the beach...He didn't get it. If it meant skipping McDonald's...He didn't get it.

There is such a thing as desperation. And I think the people who try to "help" are not necessarily of questionable ethics, everybody has to make a living doing something . Some people need to feel like a Savior, in a sad sort of way.
And if they can get people to believe in their "religion" of gluten/casein free diets, mega-vitamins, dolphin therapy, chelation, ABA : who is to say it's wrong?

My Dad was a bartender. Some people feel he had questionable ethics, but he had to feed 10 kids and send those who wanted it to college. And it wasn't like he "forced" anyone to drink...He was just there to take advantage of a human propensity to share convivial wit while under the influence of alcohol. He put up with a lot o'crap, too. He never tried to be more than he was...

But when we use our desperation to enact a tremendous cost to others...

Well, this post may or may not make sense to any of you. But I am not going to delete it this time so I don't hurt the tender feelings of parent's who are putting their kids through hell to try to make them the children of their dreams. I feel for you because I wasted a few years, and a few bucks trying to do it.

Most of what I did, I did myself for free. And lately, I don't do a damn thing. And guess what? The guilt is gone!!!

I want to quote the last paragraph of the expanded edition of Thinking in Pictures: My Life With Autism by Temple Grandin.

She tells it directly as I see it.

I would like to conclude this list of sources with a warning. There is no magic cure for autism and parents must be cautious to avoid being misled by extravagant claims by people who are promoting their brand of therapy. Treatments that are effective should work with reasonable amounts of effort treatment program that works for one child may be useless for another. Treatments and educational programs that are effective can be implemented without spending huge sums of money. Dedicated parents and good teachers have made their own effective programs after reading different books. They did not have to have expensive training. A parent should follow his or her own good instincts. Try different programs or methods and keep the things that work and eliminate the things that do not work. Combining several different approaches is often effective.
(emphasis mine)

Having autism doesn't seem to preclude one from having common sense.


Kassiane said...

Wait till someone tells those parents that how much they spend in a YEAR on snake oil treatments is more than the whole US sees fit to give to all the adult autistics, just like their children will become, for their entire LIVES.

Watch them squirm. Or else insist that THEIR children have a different kind of autism than the current adult autistics or some such nonsense.

r.b. said...

After spending over one-half million dollars, I'd think the parents would begin to be suspect of the "therapies" know?

It is sad,too, that as adults, the money given to "help" those with autism is filtered down stingily through top heavy bureacratic money channels, and they are still trying to make them "normal".

God, I'm so happy nobody ever tried to make me "normal". I think it would have been more than I could stand!

ebohlman said...

After spending over one-half million dollars, I'd think the parents would begin to be suspect of the "therapies" know?

"Common sense" says they would but the branch of social psychology known as cognitive dissonance theory says they wouldn't. It's the classic pattern of "throwing good money after bad." When you've invested a great deal of money or time or emotion in some proposition, you have an extremely powerful incentive to believe that it must have been worth it and to rationalize away any evidence that it wasn't. Intelligence is no protection against this; the more intelligent you are, the more elaborate and tricky your rationalizations will be. Nobody wants to believe they were duped.

Cognitive dissonance theory got its start when psychologist Leon Festinger studied a religious group that believed the world would end on a certain day. What happened when that day came and the world was still there? "Common sense" says that the members of the group should have become less committed to the group's belief system, but Festinger found that the exact opposite happened; they became more committed. This sort of thing happens all the time; see "the insurgency is in its last throes." The notion of "healing crisis" or "Herxheimer reactions" in quack medicine is a classic illustration of the kind of rationalization that cognitive dissonance generates. Quackery is based on the "Tinkerbell effect"; "patients" have to believe in it, regardless of the evidence (some would call that "faith" but I'd call it "dogma"; true faith is hope in the face of uncertainty, not certainty in the face of contrary evidence).

r.b. said...

Very good post...especially the last sentence, that rings so true!

"Fool me once, shame on you; fool me twice;...we won't get fooled again..."

(Don't know what made me think of that, ha!)

I wonder how much more incongruency there is in "social psychology". There has to be a lot more than cognitive dissonance to explain away the incivility of civilizations.

Anonymous said...

Hi. My name is Alison and I'm autistic. I have been officially diagnosed with Asperger's Syndrome, have hyperlexia (superb reading/writing skills) and an extremely high IQ. I wasn't diagnosed until I was in my forties, and have always paid my own way in society. I hold down a good job as an educator and am married to a neuro-typical man. We have one daughter. I have some trouble with the concept that all autistics need our hands held and are such a huge drain on society. I've always paid my taxes, have never been on any sort of welfare, and have never had so much as a parking ticket or traffic offence, even though I've been driving for nearly thirty years. I just thought I'd leave a comment to show that there are a lot of autistic people in society who are not total losers as seems to be the public perception.

r.b. said...

I know there are probably millions of people out there like you, and undiagnosed. I have more aspergerian traits than normal, if a test I took is to be believed. I hope to be a teacher, also. So I am relieved to see your post. (I am nearly 50 and never held down a full time job...But my husband has always supported me.)

But when I wrote this note, I was thinking of a neighbors child. He is 15 years old, and just beginning to have language. Too many parents think..."that's not going to be MY child (ie, no language), I'm going to CURE him"...and they can't seem to accept anything but that, so they spend thousands of dollars on useless or even cruel therapy. Thus, that child's spirit is NEVER going to soar until the day they accept them AS THEY ARE.

Anonymous said...

Autism is not caused by vaccines. That theory was disproved and tossed out by the wayside years ago, and Dr. Wakefield, the charlatan of a physician who helped promote and spread the above theory, also lost his license to practice medicine as a consequence of his disgusting, dangerous anti-vaccine campaign.

Maybe autism can't be cured, but it can be overcome.

Anonymous said...

"Once an autistic, always an autistic" isn't necessarily and always true. It depends on how severe a person's autism is, especially from infancy on. Maybe the disorder isn't curable, but the brains biology can and often enough will modify and modulate itself as a person gets older.

usethebrains godgiveyou said...

Anonymous, autism is just a label for a set of visible behaviors applied by people who see behavior as an outward sign of inward unworthiness. The person doesn't change because they have a label applied. We are who we are, who we were born to be.

Strangely, the only ones ever "cured" are those who never had that much of a difference from the "perfect human" (according to psychology), or those who have had severe medical problems taken care of. I have a you-tube video about a young child considered severely autistic who was treated for his true problem, a form of epilepsy. He began talking within days.

Is autism curable? Is epilepsy curable? As soon as we get away from worrying whether children considered autistic have a defective "theory of mind", which is only a construct in some "autism experts" beehive minds (they all think alike, whether they are wrong or right)....and figure out that they have real, structural, biological problems that may or may not be remedied by the medical field, we will just keep spinning in circles, treating our children as an animal trainer would (ABA). Forgive me, I've probably managed to offend broad swaths of people.

I don't know where you are coming from, but I do think it is interesting that science has been so devoid of any success that they are finally beginning to listen to parents, and to autistics. From this, real understanding will come.

usethebrains godgiveyou said...

Anonymous, you may believe autism in not caused by vaccines. I don't think we know that...I really don't. I worry about my son, and I can see a few possibilities, none of which change anything. I just keep my eyes open. I've got grandchildren coming...

As marvelous and modern as we see ourselves today, it's an illusion. We are human, we are @#$% ups from the word go. Historically is the only way to truly look for answers. We don't have that luxury.

I keep my eyes open.

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