November 30, 2009

"You know you have a child with autism if ... your child takes more pills than your grandmother."

Oh, ha ha ha. Let's tell jokes about the intensive experiments that parents are performing on their autistic children.
The Tribune found children undergoing daylong infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents, at a cost of thousands of dollars. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful.

Last year, the National Institutes of Health halted a controversial government-funded study of chelation before a single child with autism was treated. Researchers at Cornell University and University of California-Santa Cruz, found that rats without lead poisoning showed signs of cognitive damage after being treated with a chelator....

Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement, a physician who wrote a book on recovering children from autism. They say they feel as if their child has jumped off a pier. Science hasn't proved that throwing a life preserver will save the child, but they have a duty to try, right?...

One Yahoo! group has more than 8,000 members. The treatment takes many forms, including creams for the skin, capsules, suppositories and intravenous infusions of powerful medicines usually used on people with severe metal poisoning.
Criminal.

25 comments:

peter hoh said...

I recommend Autism's False Prophets.

I wonder why the article didn't give the name of the person alluded to in this statement: Many parents who try alternative therapies cite an analogy popularized by a luminary of the movement, a physician who wrote a book on recovering children from autism.

garage mahal said...

Science hasn't proved that throwing a life preserver will save the child, but they have a duty to try, right?...

Autism Death Panels?

Carol Minjares said...

I guess chelation was useful for something but it seems like quacks have been trying to apply it to a host of ailments ever since the 1970s.

I found out a cousin was going to undergo it for "poisoning" by her mercury fillings..it seems some people aren't happy unless they're casting out one supposed demon or other.

peter hoh said...

Garage, if you want to see what politicized health care looks like, then hop on the Autism crazy train with Jenny McCarthy and a host of other celebrities at the lead.

Maguro said...

The thing about autistic children - and adults - is that they are who they are. Their brains are somehow wired different from eveybody else's and all the exprimental treatments in the world won't change that. They must be accepted as is. Trying to change them into something else is what causes all that pain.

The chelation thing was debunked decades ago and yet people still insist on trying it anyway. It's all terribly traumatic for the kids - their everyday sensory experience must be difficult enough without all these intrusive crackpot treatments. All pointless and sad, yet the parents who subject their kids to it are very sincere and mean only to help their children.

I feel terrible for all of them.

Paddy O. said...

My mom got polio in 1949, when she was 3. It affected primarily her legs, and she could no longer walk without braces or crutches.

Worse, I think, for her was the experimental treatments she went through during her whole childhood.

Just about every summer she went through surgeries trying to repair the damage--none of which worked. They didn't understand polio then, and the treatments were indeed often barbaric. This went up through her mid-teenage years. She was a guinea pig of sorts, poked, prodded, cut up and stitched together again.

She still has the scars--emotional and physical--of all that unnecessary hospital time.

It's not really about helping the child. It's about appeasing the frenzy of the parents who feel they "have to do everything" in order to respond to something which doesn't have a response yet. The belief in science far extends past what science is actually able to do. Parents enable scientists and doctors, ignoring the well being of the child--an autistic child who is so, so, so hypersensitive to environment.

Parents are trying to atone for their own assumed guilt at whatever they think they did to deserve an autistic child. And they sacrifice their children at the altar of scientism to assuage their own sense of inferiority and powerlessness.

It's the parents who should be treated with all these things, and maybe they'll get enough sense of their own to not inflict such torture on children who don't have the capability to make the choice.

John said...

"Science hasn't proved that throwing a life preserver will save the child, but they have a duty to try, right?...

Autism Death Panels?"

That all depends doesn't it? What are the side effects to all of these quack remedies? If there are significant side effects, then no, they don't have a right.

traditionalguy said...

I agree with Maguro on this topic. Autistic kids are just different, and only a miracle will make them think like their parents think. Adjusting parental expectations seems to be the best strategy. And don't try to beat them at games because they are smarter than us normals.

kathleen said...

I feel for these desperate parents. There is an interesting theory that a profound deficiency in Vitamin D causes autism because everyone uses sunscreen and is inside all the time.

MadisonMan said...

We still get the WSJ delivered, but I stopped reading that article as soon as I noted that the son in question is involved in a bitter custody battle. Why should we believe what the father says?

I'm happy that my kids are not autistic. If they were, I do wonder if I'd be doing something to 'fix' them. At some point, I think you have to deal with the hand you've been/your kid has been dealt, and cope with it. That means teaching your child how to integrate as they are, not as how you hope someday to fix them to be.

Shorter: I agree with traditionalguy who agrees with Maguro.

DADvocate said...

don't try to beat them at games

An autisitc boy I've known all his life graduated from my son's high school last years. He is an excellent musician and played several instruments in the school band.

I wonder how autistic kids feel about suppositories. I hated them as a kid and felt completely demeaned when I was given one my my parents.

edutcher said...

My wife's best friend's grandson is autistic, mildly so, fortunately. It's extremely frustrating even in such a case and I can only imagine what it's like for parents of one severely afflicted. The desire to help these kids lead a normal life must be all-consuming.

Cedarford said...

Paddy O -

Nice piece..

My own take on it is that desperation and futility will drive people in a Free Market of Freedom Lovers right into the arms of those ready to exploit their desperation and futility with normal medicine.

And I do not know of a history of much, if any "alternative medical approach" that worked and went mainstream.

Rick Lockridge said...

Our 7-year-old son is autistic, and early on I struggled long and hard with the urge to do something--anything--to change him. I bought every book on autism that looked credible. But then I started reading the blogs written by autistic children who grew up to be autistic adults. I highly recommend you read some of these if you have an autistic child in your life. These (often) hyperarticulate writers may not be able to look you in the eye and have a traditional conversation, but they can write rings around you and me. When I read these blogs now, I imagine a future version of my son is telling me "it's all right, I like my unique collection of gifts and obstacles. I'll gladly accept the hindrances my condition imposes in exchange for the profound gifts. You don't need to put me in an oxygen tank or try to leach the metals out of me. Just let me be who I am and don't try to "fix" me, because I don't think I'm broken."

Now, I don't take this as a license to do nothing. We still do speech therapy, computer-based learning games (he does very well whenever a computer is involved) and we work hard on his spoken-language deficiency. But we not yet giving him any drugs (although we think a drug like Prozac may help him control his stimming at some point, which might be helpful to him socially when he gets a bit older).
Our son is a delightful child who is the happiest individual it has ever been my pleasure to be around. We are truly lucky to have a healthy, athletic boy who laughs and smiles continuously and who consents to be hugged and held and even seems to enjoy it. So many parents of autistic children face a much more difficult situation and our hearts break for those moms and dads....

It is very, very hard to be patient. Especially as a dad--you want to fix everything yesterday. But my child doesn't need to be fixed. That is the conclusion I finally reached, and it was a long, lonely slog to the top of a very high mountain to get there.

But reaching this conclusion also brings some peace. You start to understand that time and support and nonjudgmental love will help mold this young person into someone who can be happy and productive in the world. I like my son's chances.

Meanwhile, we are not going to destroy his happy childhood by burying him in all kinds of therapies, (but we will continue to look hard at anything that can help without doing harm).

Every parent must listen to his or her own inner voice about these things, but this is what mine is telling me.

peter hoh said...

Cedarford, it lacks the woo-woo factor associated with modern alternative medicine, but I think that Sister Kenny's approach to treating polio is certainly an example of a treatment coming from outside of the standard medical establishment and gaining acceptance.

peter hoh said...

Rick, that sounds like the right approach. Good for you, and good for your son.

traditionalguy said...

Rick...Good to have you here. Maybe we will see you eating at Murphys one day. The Professor here has superior talents in teaching and photography.

blake said...

Well, I'm going to have to disagree with a lot of what's been said, having eschewed the chemical cocktail for a "debunked" treatment that worked.

But I don't wanna sound like a one-note MC here.

former law student said...

Chelation therapy is a perfect example of question-begging. These particular doctors attempt to cure autism by trying to remove the mercury one assumes -- because the blood test is completely inaccurate -- is present in the body because one assumes that mercury in a vaccine preservative causes autism, whether such vaccines were used or not.

But chelation therapy is not idiotic in and of itself. Chelation helps, for example, kids who have a high percentage of lead in their bloodstream from, say, eating paint chips.

ehrbar said...

Science hasn't proved that throwing a life preserver will save the child, but they have a duty to try, right?

Of course, the key error in thought is right here. In fact, what science hasn't proved is that the thing you're throwing is a life preserver. It could be, for all anyone knows, a sandbag, an old television, a boot, a can of baked beans, or even an anchor.

Throwing random things at a kid in the water in the hope that one of them is a life preserver is a good way to cause the kid injuries, not a good way to save him from drowning.

lyssalovelyredhead said...

Patty O. said: It's not really about helping the child. It's about appeasing the frenzy of the parents who feel they "have to do everything" in order to respond to something which doesn't have a response yet.

I often get the impression that kids who are afflicted with some problem or the other from a pre-memory age are mostly unconcerned with it, as it is all that they know. It's only people's reactions to it that cause them grief.
********************************

Rick, your statement about your future son speaking to you gave me chills. I hope that other parents can try your tactic and get some relief.

John Lynch said...

There are things people can do, like this.

But it's a genetic disorder. It does not seem to be caused by environmental factors. People have a bias toward doing something rather than nothing, even if it's useless or harmful.

Sam said...

As a parent of autistic kids it frustrates me to no end that so many parents seem to put their critical thinking skills up on a high shelf after they get a diagnosis of autism spectrum disorder for their kid(s). With every Tom, Dick , and Harry out to sell you a "cure" or "treatment" people need to do a hell of a lot better than trying any and every thing that they find on the internet.

Having said that I appreciate the understanding for autistic individuals demonstrated in the comments so far. Thanks Anne for sharing this story and for the comment that treating children in this way is criminal. No matter how sincerely one wants these kinds of treatments to help they are still awful things to do to children and young adults.

Kimmah said...

Another mom of a child with Asperger's. He was born after the great thimerisol scare, neither of us ever ate any heavy metal fish, he had no adverse reaction to his vaccinations, he was exclusively breastfed for 9 months, didn't eat any lead paint, wasn't exposed to any weird radioactive stuff--he just happens to have Asperger's. It drives me batty to see parents like Jenny McCarthy on television touting 'cures' for children with autism. It's nutty windbags like her that lead parents to the whacko DAN doctors and chelation, decompression chamber and the boatloads of toxic drugs being taken off label. It's scary as hell that some of these people are allowed near a child, much less a keyboard or a television camera.

Laura said...

Another autism mom chiming in. My parenting journey was similar to that of commenter Rick. It was the words of autistic individuals themselves that opened my eyes. I love my son unconditionally, and I wouldn't change a thing about him. Normal is overrated.

Also: Jenny McCarthy is an idiot.