Lupron

Why It's Not Great That Autism Science Makes Great News


Charles Nelson Reilly tells the story of how his Aunt Lily lost her hair.

 

I think I probably come off sometimes as opposed to science, and nothing could be further from the truth.  What I'm opposed to is pretending that something is science when it's really just a theory.  I'm against widespread use of treatments before they are thoroughly tested.  I think it's very dangerous when we pretend something to be good science just because we want so badly for it to be.

If you don't understand why, please watch the clip above from Charles Nelson Reilly's autobiographical stage show.  Yeah, the guy from Lidsville.  What happened to his Aunt Lily because a doctor was excited about a promising new treatment breaks my heart.

Which brings me to SSRIs.  Not for kids, helpful in small doses for many adults with autism, and apparently not a good idea for pregnant women.  Does anyone doubt antidepressants have been overprescribed before anyone could understand their long term consequences? 

A new study indicates that taking SSRIs during pregnancy may increase the risk of a woman giving birth to a child with autism.  And, yes, they did try to make sure that what they were measuring was not the likelihood of someone with depression to have an autistic child:

The authors also looked at which mothers had a history of depression or another mental-health problem: that included about 12% of mothers whose children had an autism spectrum disorder, and 9% of mothers whose children did not. But when researchers adjusted for mental-health history, the association between SSRI use and autism persisted.

"Almost everybody getting an antidepressant has some mental health disorder, and our study adds to the body of knowledge that shows that a family history of mental health problems may be associated with autism," says Croen. "But our study indicates that it isn't necessarily the mental health disorder, it was the treatment. When we controlled for the treatment, we didn't see any association or any increased risk of autism associated with maternal depression or anxiety."

Also in the news lately is a study with twins that everyone is very excited about because it supposedly shows that environmental factors play a much larger role than was previously believed in autism:
 

What they found, using mathematical formulas, was that the genes twins share can increase the risk of getting autism by about 38%, but the environment twins share in the womb and immediately after birth may increase the risk even more – an estimated 58%.  Hallmayer says these are only estimates, but he believes the environment may play a larger role than previously thought.

I don't know why people are all excited about this, but they are.  I thought we knew that autism was caused by a mix of genetic and environmental factors, and that mostly what we knew so far was that we didn't understand it very well.  When scientists don't really have a handle on something, it's not remotely surprising to have outlying studies with unexpected results.  And that's what this is.  It might be something that should seriously change the way we thing about autism, if the results are replicated, and if they make sense when the authors describe the risk factors they are seeing.  It's kind of interesting, but it shouldn't change anybody's opinion.  Yet.  It should encourage further research.

But it's being covered as something HUGE:

Dr. Joseph Coyle, the editor in chief of the psychiatry journal, called the two studies “game changers.”

And that's encouraging risky behavior:

Vaccines weren't examined in this study, but if other environmental factors can contribute to autism cases, then why not vaccines? According to this study, something we're doing is causing it; it's likely not just genetics at play here. So could vaccines be contributing too?

I have vaccinated my children in the past, but have never felt fully at ease doing so. I do it because I'm scared of the alternatives and have made the best educated guess I can about the right thing to do. But it's just a guess, and when it comes to my children's health, it kills me that I have to make a guess with such enormous possible consequences.

 

People are desperate for that mythical cure, so autism research is big news.  Pretending something is bigger news than it is generates clicks and sells magazines.  But it warps the general public's understanding of the issue. 

Lin Wessels is upset that  Mark Geier  is no longer able to chemically castrate her son:

Wessels, who lives in Rock Rapids, Iowa, took Sam to see Geier in his Indianapolis office two years ago. She said there were months of genetic and hormone tests, and then the diagnosis. She began injecting Sam with Lupron daily.

She said the diagnosis made sense to her. Sam was not only having trouble communicating and difficulty learning, but he was tall for his age, had hair on his legs and began constantly masturbating by the time he was 5.

She said there was no "wow" moment where Sam snapped out of his autism, a spectrum of disorders where sufferers lack an ability to communicate and interact properly. But in the course of the next year, Sam's reading improved from 35 words a minute to 85 and he focused in class. He stopped masturbating as much.

Wessels thought Sam was naturally advancing and planned to taper the Lupron at some point — at 9, he had reached the generally accepted age limit for a precocious puberty label.

The day came abruptly four months ago when a nationwide shortage cut off Sam's supply. Wessels said she saw Sam return to his old habits, from flapping his hands, to pacing, to forgetting how to get to his classes.

"I felt like I got a glimpse of the child my son was meant to be, not the one autism gave me," said Wessels, fighting back tears. "It's so sad to watch your child fade away again."

She's now hoping the Lupron supply increases and Geier or another doctor will give her a new prescription.

That's how desperate parents are for effective medical treatments for autism.  But they do not yet exist, and pretending they do does nothing but put kids in danger. 

 

Mark Geier Explains the Dangers of Simon Baron-Cohen's Pseudo-Science


A few days ago, I explained that, although Simon Baron-Cohen has access to excellent data, he often uses it to merely make stuff up and pretend it's science.  And that some of the stuff he makes up is harmful:

Where Baron-Cohen's work gets dangerous is his belief that autism is caused by an excess of testosterone.  I really think this comes from his initial linking of autistic people with the hyper-aggressive Nazis, and not from anywhere else.  And it's a profoundly dumb and dangerous idea.

The Baltimore Sun inexplicably gives Mark Geier the opportunity to plead his case today, and he makes clear exactly how dangerous this theory of high testosterone is:

Over the years, our work has helped to uncover that a significant number of children with autism have remarkably high levels of male hormones in their blood. We have found that many of these children with high male hormone levels display behaviors that are among the most challenging to deal with in autism, such as unprovoked and extreme violence, to themselves and the people around them, and an inability to sit still for beyond a few seconds. These behaviors make it all-but-impossible to engage children in the more well-known forms of behavioral therapy.

So Mark Geier decided it would be a good idea to treat autistic kids with the chemical castration drug Lupron.  I've already written about the role that chemical castration played in the suicide of Alan Turing-- it's unimaginable to me that anyone would find it an appropriate treatment for autistic people.  But Geier not only used it-- he got insurance companies to pay for it:

Some critics have charged that there's little oversight for our use of this therapy, and that we are profiteering off of desperate parents. But they neglect to mention that physicians employed by insurance companies are signing off on what we're doing.

Pharmaceutical companies charge thousands of dollars per month for Lupron treatment — money that, for virtually all of our patients, is covered through medical insurance. Not surprisingly, the insurance companies demand that their own doctors review extensive blood tests and other analyses before signing off on reimbursements for Lupron. And the insurance companies require regular updates to those blood tests to assess whether continued injections are medically justified.

Geier's hilarious argument: it must be ethical-- insurance companies have signed off on it!

You may wonder why I blame Baron-Cohen if Geier's own research found high levels of testosterone in kids with autism.  You find what you look for.  Most kids don't have their levels of testosterone tested, ever, and they can fluctuate wildly. This makes it impossible to know how unusual the results used by Geier to justify treating kids with autism actually are. 

Would he actually have gotten doctors and insurance companies to sign off on it without Baron-Cohen's work?  I don't know.  I know that Simon Baron-Cohen should feel partially responsible that kids with autism have been treated by chemical castration.  His theory-- autism is caused by high testosterone-- makes it seem like a good idea. His authority gave Geier's dangerous snake oil credibility.

 
 
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