April and Autism

     Did you know that April is National Autism Awareness month? If you’re the parent or relative of a child “on the spectrum,” the answer is probably a resounding yes. Ditto for educators, doctors, therapists and researchers who are directly involved with autism. However, if you’re  among the (still) majority of “normal”  people with neurotypical children, then chances are good you aren’t “aware” that April is a special month for autism.  Even if you read my post on “Autism Unawareness” last April, I’m not sure you’d remember.

     The sad truth is that the only way most people really focus on autism—or any other challenge—is when it becomes THEIR own problem. I’m just as guilty of myriad forms of medical ignorance as the next person. If my son Max hadn’t been born with a congenital heart problem, I wouldn’t know anything about atrial septal defects (ASDs) or mitral valve regurgitation, nor would I have had any interest in understanding and researching those issues. Since there are far fewer babies born with heart problems (9 in 2000), compared with the epidemic in autism (now 1 in 68), there is no month devoted to awareness of atrial septal defects. More importantly, ASDs—unlike autistic spectrum disorders (also, coincidentally, called ASDs!?)—are easily diagnosed and corrected with surgery. By contrast, autistic spectrum disorders are difficult to diagnose, and currently there is still no cure.
      When a 14 year old autistic boy, Avonte Oquendo, went missing from his school in Queens, the media went into a frenzy. Night and day, the news showed a tape of Avonte running down a hallway, out of school and into the bitter cold without a coat.  His pictures were plastered everywhere, and his tearful mother pleaded for the return of her son who couldn’t speak.  EVERYONE empathized with the loss of a vulnerable child, and New York’s finest—along with the public—scoured every inch of the city until, sadly, Avonte’s remains were found.  Then there was a sense of outrage.  How could any school—let alone one responsible for autistic kids—allow a student to run out of a classroom unsupervised?  Where was the security guard?  Maybe outrage is what we need to find the cause and cure for autism. Not just in April, but all year long.

     Many autistic children wander, and Avonte’s parents had warned the school that he was a flight risk.  Why wasn’t there an alarm system? More importantly, why don’t these kids wear some sort of tracking device?  If we have the technology to locate lost iphones and reunite missing pets with their owners, then why can’t Silicon Valley develop a wrist band to protect society’s most vulnerable children? At the very least, Avonte’s school needs a complete security overhaul.

     Speaking of security, you’d think that after 9/11 it wouldn’t be possible for a few thrill seekers to reach the top of 1 World Trade Center and parachute down to the street in the middle of night!  Apparently, the interlopers simply stepped through a hole in the fence nobody had bothered to repair— until more recently, when a 16 year old managed to get into the building and up to the roof the very same way.  It’s frightening but true.

     Even more frightening (in my opinion) is the global warming issue.  We’re not talking about 1 in 68 children or a few terrible security lapses.  We’re talking about earthquakes and mudslides in California, tsunamis in Indonesia and Chile, not to mention super storm Sandy in New York City not so long ago.  A recent article in The New York Times reported that the worldwide food supply has been severely impacted by climate change, and humanity is not reacting nearly fast enough to control greenhouse gases, and stop destroying our planet.
     What do security lapses and global warming have to do with Autism Awareness month?  Nothing and everything.  In order to cure autism, protect our kids, and save the planet, more people—more entire countries—must become aware and ACTIVE in looking for solutions.

     Although there has been a lot of autism research, there’s still no consensus on the underlying causes.  Some studies say the risk of autism increases with older fathers. Others say environmental pollutants play a role.  The latest report in Sunday’s New York Times (3/30) suggests that maternal stress during pregnancy also increases the risk  of autism, as do elective caesarean sections.  Not surprisingly, the author suggests reducing the risk by not scheduling a c-section. Duh.
     As for genetic studies, it has been demonstrated that 60 - 90% of identical twins will both be autistic, whereas fraternal twins (who share 50% of the same DNA) have about half the risk.  With such a broad range of statistical results, it's clear that genetics are only one piece of the puzzle. Also noted is the fact that prematurity occurs more often in multiple births, and thus greatly increases the odds of developmental disabilities, including autism, in all twins.  And if you’re one of those diagnosticians who believes that ADHD can be considered the mildest version of autism, then my twins, (Max with ADHD and Sarah with an ASD) are your textbook case—unless of course, you happen to meet them.  Despite the fact that Max and Sarah emerged from the same womb sharing 50% of the same DNA, they are so different from each other in personality and cognitive ability that one twin could have been born on Saturn and the other on Mars.

     Let’s just say I am not impressed with the latest research results.  When Max and Sarah were born in 1990, the risk for having an autistic child was 1 in 150. Last year, the number of babies born with autism was 1 in 80.  This year it’s 1 in 68.  Or maybe it's 1 in 50, depending on where you live or what graph you consult.  What will it be next year? 

     T.S. Eliot was right: April is the cruelest month.





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