Especially if I failed to make the case for that some discussion of recent autism research is problematic, I hope you will read Harold Pollack on the twins study that came out on Monday and has many people very agitated:

The sheer craftsmanship of this study is noteworthy. The findings are important, too. Contrary to some current misreporting, the findings continue to indicate that genetics play a powerful role in autism. But other things matter, too. Some risk-factors common to fraternal twins—maybe including the simple fact that one is a twin—are important for at least some people diagnosed with these disorders. Analysis of the sort Hallmayer and his colleagues conducted, however, does not address the underlying mechanisms that lead to autism. The weakness and strength of such statistical twin studies lie in their ability to identify genetic patterns within families without directly investigating what is causing these correlations.

Pollack discusses the way the tendency of the press to exaggerate the significance of the report's finding and both discusses and dimisses the hope that is probably behind it:

Some of the fallout appears to reflect a common temptation to believe that if a disorder is caused or aggravated by environmental insults, it might be more readily addressed than one that is purely genetic in nature. This is not necessarily true. Twenty-five years ago, a famous Institute of Medicine report argued that expanded Medicaid entitlements to prenatal care would reduce the incidence of low birth weight and premature births. Medicaid was indeed dramatically expanded, reducing infant mortality and accomplishing other important goals. But the population impacts of these policies on low birth weight and premature delivery were embarrassingly small. Despite decades of maternal and child interventions and obstetric research, these adverse birth outcomes have proven stubbornly resistant to effective intervention.

I could not agree more strongly with him about what realistic priorities for autism research need to be:

The most immediate opportunities for autism treatment and therapy are not in the domain of basic scientific research. Our first priority must be to conduct rigorous clinical trials of available treatments, and to allocate public resources towards evidence-based practices found to be effective. As always in such things, progress is agonizingly slow. The next clinical breakthrough always seems five or ten years away, and may prove disappointing. Amid such frustrations, there’s no wonder that people misread studies or are tempted to exaggerate the immediate import of their findings.

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."

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. 

 

Autistic twin adorably smells his foot

The UK television program Embarrassing Bodies has posted a number of interesting videos to YouTube that deal with autism. They include cute twins, researcher David Lewis, and Simon Baron-Cohen's Autism Spectrum Quotient Test.

Click here to watch.