Last Sunday’s NY Times’ magazine’s cover story was called “After Autism.”   I once heard that the best way to sell a million copies of a country song was to include the word “Texas” in the title; similarly, an issue of Newsweek that had the word autism on the cover was the second largest selling issue in its history, second only to the issue that had Jesus on the cover.    So undoubtedly if you could think of a good song title with the words Jesus, autism, and Texas in the title you’ll make a mint.

When I first picked up the article and read a random paragraph that reeked with misinformation I was sufficiently angry to put it aside, but when I eventually read the article through I thought the author (Ruth Padawar) got the gist of it right.  Most news about autism is pretty dismal, and it’s important to tell the whole story.  Some kids really do get better.

Much of the misinformation in the article centers on O. Ivar Lovaas, who the author describes as “the pioneer of A.B.A.”  While Lovaas certainly was a pioneer, by no means was he ever the pioneer, an important distinction because his seminal work was based on years of research that preceded him.

The author also states “By the 1990s, after a public outcry, Lovaas and most of his followers abandoned aversives.”   Lovaas stopped using aversives (such as a light slap on the child’s thigh) because the research eventually showed they weren’t necessary.   While aversives were made illegal in certain contexts (such as California schools), most parents use aversive means to control their children’s behavior and the topic is still hotly debated in both the public and research communities.

“While subsequent studies did not reproduce Lovaas’s findings…” Tell that to John McEachen and Tristram Smith.   The fact-checkers at the Times went to sleep on that one.

And this one: …in the 1960s and ‘70s, Lovaas’s team used ABA on boys with “deviant sex-role behaviors,” including a 4-year-old boy whom Lovaas called Kraig, with a “swishy” gait and an aversion to “masculine activities.”  It then went on to describe what “Lovaas” specifically did, and stated that years later when Kraig came out as gay and eventually committed suicide, his family blamed the treatment.

The case of Kraig was a single case study done by a graduate student named George Rekers as his doctoral dissertation, and Lovaas was his advisor (and hence became the second author of the published study.)  Lovaas spent years trying to distance himself from Rekers, although Rekers did claim that the study was Lovaas’ idea.  Rekers, who became a prominent anti-gay activist and “conversion” specialist, also claimed that the male escort he found on the “RentBoy.com” website and with whom he spent 10 days in Europe was hired to carry his luggage.  Regardless, it is important to remember that no matter how egregious most of us would find that study today, those were very different times and Lovaas himself later wanted nothing to do with it.

The author paints it as a mystery as to why some children do better than others, mostly quoting respected researchers who claim that they are clueless about that.   That is unfortunate, because those of us who have been in the field as long as I have can tell you from our own experiences (as well as the preliminary research) that the children who are most likely to “recover” are the ones who receive early behavioral treatment, are verbal, have higher IQs to begin with, and are often girls.   There are certainly many children who improve dramatically who do not fit into those categories, and some who do fit into those categories who don’t improve significantly, but as a generalization, that is what we know.

In fairness to the author, the research on autism is complex, and as such it is difficult to characterize accurately in an article aimed at the public.   Overall, she got it right, and for those of us who have spent much of our lives working with autism, at least until Jesus comes to Texas, it is always good to see and read about those whose improvement leads to their being labeled “recovered.”

Several years ago, when flying in a Cessna 150 over the mountains between Fillmore and the great Central Valley, I lost power.   The little Continental 100 horsepower engine became a 100 mousepower engine.   I began to panic as the beautiful mountains beneath me rose up to greet me.   I tried applying carburetor heat, knowing that doing so might make things worse at first, melting the carb ice that would then suck into the engine as water, but that would eventually turn things around for the better.  But it did nothing.    I tried playing with the mixture control; perhaps I was too lean, but when I adjusted the mixture things just got worse.

I remembered something in the classic 1944 aviation text by Wolfgang Langewiesche called “Stick and Rudder.”  He said early on in the book (thankfully, because I rarely get beyond “early on” in many books) that there is practically no problem one could have when flying that couldn’t be solved by doing one simple thing: putting the nose down.   So I lowered the nose, right toward the mountain, and sure enough, the little engine that could became the little engine that did and it perked right back up.

By pointing the nose down, regaining power, and then lifting the nose until the engine almost quit, and then repeating this roller coaster procedure while looking for a good place to land (there were none), I finally made it over Gorman pass; there I saw the beautiful, flat Central Valley in front of me.   (Ever since then, I have loved the flatness of that valley.   To me, it is one gargantuan runway.)   Once I decreased my altitude over the Central Valley, the little Cessna no longer gasped for air, and all went smoothly for the rest of the trip.  (I chose to go around the mountains on my way home!)

Pointing the nose toward the ground at a time when the ground is the thing you fear the most is a great lesson in life.   If we are willing to learn, it teaches us to use our fears to do what is sometimes counter-intuitive.    The former test pilot and world renowned aerobatic performer Bob Hoover, now in his nineties, has said, “If you’re faced with a forced landing, fly the thing as far into the crash as possible.”

It is, perhaps, another way of saying “it ain’t over til it’s over.”  But it is also good advice because often, doing the thing we think is natural to do is not the best way to handle a situation.

When I suffered from severe migraines as a child, I realized that anything I did past a certain point to avoid or prevent the migraine was not only useless, but tended to worsen the pain.   Pain tells us to pay attention to it.  It says that there is something wrong that needs to be fixed.  Yet if we do what seems natural and fight it, it sometimes doubles down on us.  I had to fly right through it.

I am reminded of one of my favorite book titles (and one of my favorite books!):  “The situation is hopeless, but not serious.”   It doesn’t matter what the crash looks like:  a family conflict, a devastating business loss, a letter from the IRS.  Sometimes our enemies come to our rescue, a hole appears in the clouds, or a tree limb breaks our fall.  The important thing is to keep flying.

When an earthquake appears on the scene here in California, two questions immediately come to the surface (sorry):  how strong is it, and where is the epicenter?  No one asks where the center of the quake is, probably because no one really knows where in the earth the quake actually occurred; they only know where on earth it appears, which for most earthlings is the only thing they really care about.

In the early days of my work with children with autism, I tried hard to stay on top of the biological research, because it is there that I held out hope that we would discover the root causes and therefore find better ways of treatment.   I believed the Holy Grail was in the area of genetics, because the research we did have all seemed to point in that direction.   In fact, the research on the genetic underpinnings of autism exploded to the point where, even with diligent assistance, I couldn’t keep up.   After a few years and several reams of printer paper, I gave up and instead vowed to read others’ research reviews and attend workshops on the subject.

It turns out that the focus on genetics may be a bit like the focus on the center of earthquakes.   It may in fact be where the real action is, but it is not so easy to find.   The decoding of the human genome held all sorts of promises, but has had very little real impact on our ability to understand disease.    That is partly due to the complexity of the problem.  (Google has recently agreed to store the genomes of 10,000 individuals with autism, which should make it easier to investigate what anomalies might serve as clues to solving the mystery.)

But it has turned out that the kind of genetics I learned about in school, which had to do with chromosomes, DNA and heritability, has changed dramatically.   The thought was that we could find the cause of a disease in mutations in one or a few genes, each gene having a significant impact.  Current belief, however, is that most chronic disorders are caused by the interaction of hundreds of low impact genes, and that even single-gene mutation disorders are effected by many heretofore unknown networks of influence.

Epigenetics is the term given to alterations in how genes are expressed, and even whether or not a gene is “turned on and off.”  The word epigenetics itself is broad, having to do with a vast number of ways the same genetic code may end up generating different proteins, which may eventually manifest in an illness.

DNA that does not code for protein has been called “junk DNA” even by those scientists who eventually decoded the human genome.   Now, as it happens, that DNA that resides among the DNA sequences that have been identified in protein-making, has been more elegantly referred to as “non-coding DNA,” and it is this DNA that some believe is responsible for how and whether coding DNA actually gets expressed.

There is budding research to support that such things as prenatal stress, infection during pregnancy, exposure to toxic chemicals, nutritional factors, diet, allergens, and many other environmental factors alter the non-coding DNA, would then impact the expression of genes at various points in development.

While the center of earthquakes holds little interest or relevance to those of us who live on the earth and not in it, geologists still need to study it in order to better understand how earthquakes are going to manifest on the surface, the epicenter.    But in the world of autism, some believe that too much emphasis is placed on studying the genetic core, because doing so has not gotten us much in the way of practical results.   These scientists believe that we may learn more about how chronic illnesses such as autism arise by paying more attention to the relatively new science of epigenetics.

Max Conrad

In the late 1950’s, journalist Percy Knauth had the opportunity of accompanying the legendary ferry pilot Max Conrad on a trip from an airport in Flushing, New York across the Atlantic to Paris in a diminutive Piper Apache.  Here is how Knauth described Conrad’s flying:

This man, when he is in the air, is in the familiar place.  Once off the ground, he seems to relax, to be at home.  He flies with absolutely effortless ease, without any apparent conscious application; he flies the way other men walk; he seems literally to have been born to it… He sits hunched forward, one hand on the wheel, feet gathered beneath him, his eyes constantly searching ahead and to both sides, every sense, his whole body seeming to reach out into that gray and turbulent world through which we dash with the urgency of a great bird seeking shelter from an approaching storm.  Max doesn’t seem to be in the airplane at all; he seems to be out there, sniffing the air, probing it, trying to sense what’s ahead; and what his hands do on the wheel is mere instinctive reaction to what his senses feel outside.  I have never seen anything like this at all, but now I know what manner of man gave birth to that trite phrase: “He was born to fly.”

What does it mean to be born to fly?  For that matter, what does it mean to be born to do anything? When I first moved to Ojai, I had the opportunity of meeting the great Mad Magazine cartoonist Sergio Aragones, who was kind enough to give me a tour of his studio.   I mentioned to him how much I envied his talent, given that I couldn’t draw to save my life and am convinced that I was lacking that particular gene.  He reacted almost violently, telling me that there really wasn’t such a thing as inborn talent, that initially he couldn’t draw either, and that it was all practice.   He said to me, “If you want to draw a nose, you have to draw a nose a thousand times…. 10,000 times, until you get it right.”

What Percy Knauth failed to mention in his beautiful description of Conrad’s flying ability is that Conrad began flying as a teenager, and had flown more than 30,000 hours by the time Mr. Knauth flew with him.   That’s a lot of noses.

When we see young children who can somehow make songs out of random notes on a piano, or draw faces on paper that actually resemble faces, we see it as talent.   But for reasons probably having to do with wanting to preserve our species, we don’t let children strap on airplane wings and jump off the side of a mountain.  Maybe if we did we would discover that there really are some people who were “born to fly.”

After all, is it any more natural for humans, born without wings or discernible rudders, to fly through the air than it is to sit down at a piano, press black and white levers and have a melody emerge?  Maybe Sergio was right, and doing anything so seamlessly that it appears natural is like the old joke about how to get to Carnegie Hall; it is all practice.

The words “aviate, navigate, communicate” are drilled into new pilots’ heads as reminders of what to do, and in what order to do it, when the going gets tough.  Pilots hear these words from the outset of their training because many pilots get killed doing what seems natural to them, and as most of us have learned who have made it through the first few decades of life, doing what comes natural can do us in.

In a crisis, for example, it is not natural to relax.   Instead, most humans panic first as their bodies adjust to what initially appears to be an impossible situation with a deadly outcome.

To “aviate” means simply to “fly the airplane.”   Panic distracts us from the task at hand, puts us into an alarm state, and we freeze, forgetting to do the simplest things.  That is why pilots are taught to recite the mantra “aviate” as the first thing to do in a crisis.   Just fly the freaking airplane, or, as it translates to life on the ground, get out of bed, put one foot in front of the other, and stay in control of yourself in the moment.

The next item on the short list is to navigate.  To “navigate” means that one needs to know where one is, and then create a plan on getting to where one wants to go.   Last of all, “communicate”.   Talk to the people who might be able to help you get out of your sticky situation.

These all seem like obvious things to do; it is just that doing them in the wrong order is the thing that can kill you.   For example, when pilots get in trouble the first thing they often want to do is call for help.  In their panic, they try to remember and dial in the right radio frequency to call while in the meantime control of the airplane eludes them.  Or, if they become lost or disoriented, they try to find out where they are by reading a map or sticking their heads into their computers and end up crashing into a mountain.   For earth-bound vehicle drivers, it is like trying to find your wallet or reaching for your cell phone and forgetting to look at the road ahead of you.

Most of us are taught to do things in the opposite order of the aviation dictum.   We are taught first to set goals (navigate), ask questions and learn (communicate), and then to proceed toward our objectives (aviate).   That method works fine in general, but not when faced with a true emergency where your life depends on staying in control.

In a sense, to aviate first means to live in the moment, and not to allow distractions to get the best of us.   That has been difficult for me, because I tend to be so future-oriented that I lose spontaneity and even miss opportunities that are “hidden” right in front of me.   In the last two or three years, trying instead to aviate before navigating has yielded interesting results.  I have allowed myself to get excited about things I otherwise would not have given myself the time to get excited about. I would then let the excitement work its way through me, and see if it would last.  Some things lasted and some things didn’t, and this was the learning experience.  It was this state of “enhanced receptivity” that allowed me to get to know myself a bit better.

It’s a bit like the haiku I remember from the old days: My storehouse having burned down, nothing obscures my view of the bright moon.

For me, the storehouse represents the busyness of life, the cluttering of our perception with goals, mission statements, objectives, thoughts, graphs, material objects.   All of this “navigation” can certainly prevent us from aviating—staying in the moment, “flying the airplane,” and seeing the bright moon above.

I have lived in four different states, and ate long sandwiches on sourdough bread in at least three of them.  In Massachusetts they called them torpedoes, in California they called them submarines, and when I lived in Kentucky I don’t think I could afford them.  In New York they called them heroes, and so it was that about two years ago when a New Yorker named Steven St. Bernard rushed to the scene of a 7-year old autistic girl falling from a third story window and caught her, he responded to the friends and neighbors who called him a hero by saying, “No.  A hero is a sandwich.  I just saw a kid, that’s it.”

Keyla McCree was dancing on the air conditioning unit of her apartment, when  the accordion-shaped fan that fits between the air conditioner and the window frame opened and she fell through.  When Steven St. Bernard, a bus driver, saw the girl, he reportedly said to himself, “Please let me catch her, please let me catch her.”  He did catch her, and although she brushed against the bushes and slightly touched the ground, she did not receive a scratch.  Mr. St. Bernard, however, tore a tendon in his left shoulder.

Such acts are often called courageous, a concept with which I have struggled much of my life.   That is because, while I spent the decade of my twenties getting through graduate school, internships, and planting the seeds of a family, I was also struggling to overcome my pathological shyness.  In challenging my deepest fears of interacting with people, it became clear that the only antidote to shyness was courage, which many have defined as the combining of fear with action directed toward whatever it is that is feared.   I pushed myself to do as many of the things as I could to face the demons directly– introduce myself to a stranger, or go to a party and actually converse with someone.   This behavioral approach worked, and it keeps on working to this day.

It is interesting to me how “heroes” such as Steven St. Bernard talk about their acts as if they were effortless, as if they felt no fear.  I submit, however, that action that takes place without fear is likely to be stupid and not courageous.  Fearless people are bold, and as they say in the flying world, there are old pilots and bold pilots, but no old bold pilots.

Perhaps I am wrong though.  People who do courageous things may experience their acts as effortless because they are practiced at acting in the face of their fears.   I do believe that courage becomes easier the more one takes calculated risks.

While I don’t know this for a fact, it is my guess that the word “hero” to describe a long sandwich is derived from a gringo’s attempt to pronounce the Greek “gyro” sandwich.  I do know that the OED informs us that the word “hero” arose in the 14^th century from the Greek “heros”, meaning “defender” or “protector.”  In that sense, I can think of no better word to describe Mr. St. Bernard’s actions that day in New York.   I have no idea if Mr. St. Bernard achieved his humility the hard way, by facing his fears repeatedly such that his actions felt fearless, but I do suspect that is how he transmogrified his view of his behavior from the status of heroism to that of a sandwich.

In a previous post, I mentioned the ABCDE checklist for handling emergencies.   My cousin commented that perhaps it is true that we learned everything we needed to know in kindergarten.    I didn’t really understand her comment at the time, because I really don’t think I learned anything in kindergarten, which is not to say the teacher didn’t try.   I think I was too scared of being around all those other kids to take anything in.

My cousin, who is a master of all trades (including medicine), noted that the ABCDE mnemonic is used in advanced trauma life support as well as flying.   I’m sure it is used all over the place, but let’s see if we can torture the aviation metaphor a bit and stretch it to good old life in general:

What does it mean to trim to the best Airspeed?  It usually means to slow down to the speed at which the airplane glides the farthest.    In a crisis, time does appear to slow down.   But, given a critical situation, it is important not to rush to judgment.  That is how we are most likely to screw up.   When all else fails, slow down.

Best field.   Where is the best place to land?  Perhaps that is another way of saying decide what you would like the outcome to be.   Crises cloud our judgment.  Panic ensues and we can only see what is in front of us.   As you slow down, take the time to decide what you would like the outcome of the crisis to look like.

Checklist.  In aviation, this means to begin the problem-solving process.  Run through the options.   What went wrong?  Can you diagnose the cause of the problem?   Back up and look at where the problem began and think it through.  What could have led to the malfunction?   What could the possible solutions be?

Declare an emergency.   Talk to people who might be in a position to help.  Talk to lawyers.  Talk to people who have been there before.  Find a good therapist.  It was Freud who is said to have invented the “talking cure,” but Catholics have had their confessionals long before that.   I am a huge fan of advisors, who nowadays call themselves consultants, psychotherapists, ministers or coaches.   Get advice, and use that advice with discernment.

Emergency checklist.   This is where you go to the manual and do the things the manufacturer tells you to do before crashing.   Perhaps you need to crack open the door so that it doesn’t get stuck, throw a coat between you and the windscreen, tighten your seat belts, and shut off the fuel flow.  You are doing whatever must be done to increase your odds of surviving the crash.   The point here is that the fat lady has yet to sing, that it ain’t never over until it’s over.  If you are going to crash, you need to fly all the way into the crash; never stop flying until you and your passengers are safely out of the airplane.

None of us are immune to the slings and arrows of outrageous fortune, but we might be able to cushion the blow, or even escape through a door that opens way past the point of no return. Humans are incredibly resilient, or at least we can be, if we remember to keep flying.

trichuris suis ova

Readers of my last blog might recall the story of the time the great satirist and math lecturer Tom Lehrer sat in my college living room in Santa Cruz, invited to our party by a housemate, and explained how it was statistically “impossible” to get wet while walking in the rain.  That is the problem with logic and statistics; it is possible to be exquisitely rational yet simply be wrong.   Mark Twain attributes the quote to Disraeli, but researchers say it originally belonged to a journalist named Leonard Courtney: There are three kinds of lies:  lies, damned lies, and statistics. 

Statistics are often used to justify the “miracle cures” that those of us who have been in the autism treatment world for a while have seen flourish, to our dismay and to the dismay of parents whose children have been harmed by them.   From the promises of colored lenses, hyperbaric oxygen chambers, clay baths, dolphin therapy, multivitamin and mineral treatments to secretin infusions, the list goes on and on.  A colleague of mine made a list 10 years ago that included over 150 of these “quack treatments,” and since then there undoubtedly have been 150 more.

It is through these jaundiced and critical eyes that I continue to read reputable journals and follow conference abstracts, and on occasion hesitatingly report some of the more interesting stuff.  Recent studies presented at the very legitimate American College of Neuropsychopharmacology annual meeting and performed at the equally legitimate Albert Einstein College of Medicine in New York revealed that children with autism had improved social behavior when bathed every day in a hot tub at 102 degrees F compared to water at 98 degrees F.   And the same researcher found that high functioning adults with autism who were treated for 12 weeks by ingesting whip worm eggs (trichuris suis ova) had less repetitive and ritualistic behaviors than when they ingested a placebo.   The whip worm eggs, in case you were worried, are safe in humans because they don’t multiply in the host, are “cleared” spontaneously and aren’t transmittable by contact.

The theory behind all of this has to do with inflammation.   There are those who believe that one possible cause of autism is a “hyperactive immune system.”  In the case of the hot baths, raising body temperatures mimics the effects of fever, which might trigger the release of anti-inflammatory signals in the body.   In the case of the worm eggs, they have been shown in the past to improve immune inflammatory illnesses by “shifting the ratio of T regulator/T helper cells and their respective cytokines,” thereby altering immune-mediated responses and diminishing inflammation.

I don’t doubt that eating worms is likely to alter one’s immune response.   I would certainly add them to my diet of frog’s legs, chocolate covered ants, salivary glands (chorizo), and sushi if I knew that it would help me in ways I desperately need to be helped.  And who could dispute the beneficial effects of taking a hot bath, or, as we do in California, a dip in the hot tub, after a long day at the office.  Does wonders for my repetitive behaviors, because it puts me right to sleep.

But explaining repetitive and ritualistic behaviors as caused by inflammation seems a bit like blaming mother:  it may not be far-fetched, but it certainly is simplistic.

There were too few patients in these studies to make the results clinically meaningful, so I imagine that it would be unlikely that you will hear much more about them. The thing is, if you or your child is suffering, anything, no matter how bizarre it sounds, will be tempting, and that is how so many of us get taken advantage of.  Our desperation will lead us to believe all sorts of things, especially the logical ones.

While the FDA and other organizations are out there to help us, we live in a caveat emptor world.  It is up to each of us, and that is how it should be.  That’s why you will not likely see me eating worms anytime soon.  Just saying.   Statistically, the probability of me getting wet while walking in the rain might be small, but I do know that the probability of me getting wet if I take a hot bath is 100%.  And if it gives me a little fever and triggers an anti-inflammatory response to boot, I think I will add it to my agenda.

Sa-wa-dee

It happened again. It happened once five times in a single day. I don’t like counting the frequency, but I can’t help it. As I was walking out of the Japanese restaurant in Ventura the young woman behind the cash register smiled at me and said it. “Have a good one!”

I know she and the increasing throngs of humanity using the phrase are well-intended, and even trying to be courteous, but it is difficult for me to refrain from replying sarcastically. Beside the first thought, which is to inquire exactly what it is that they wish me to have good, I am often tempted to respond with saying things such as, “Gee, thanks. I actually had a great one yesterday, but today doesn’t look too promising.”

Other options that have crossed my mind include “Well, sometimes having a bad one is better than not having one at all,” or, depending on who is murmuring the words: “Thanks! I’ve been having a good one so far, but you could make it even a better one!” Just in case you are reading this and you don’t know me well, you will know that you will never hear me say any of those things out loud, just thoughts that I confess have crossed my mind. In truth, my typical response is either “Thanks!” or “You too!” I always feel guilty saying the latter, because I am not sure what it is that I am wishing on the other person. She might end up having a good car accident.

I am not totally sinister; I do understand that the phrase has become popular probably because there are few good alternatives. “Goodbye” is so awfully formal; “see you later” is likely a lie, “have a good day” is stilted, “take care” is a bit too intimate. One that I hear from time to time that I used to dislike but have warmed up to is “have a blessed day.” You know that the person behind those words is probably a religious fanatic, but it’s a difficult phrase to wrap one’s tongue around, so I appreciate the effort. And frankly, as someone who believes in the power of blessing, I actually derive meaning from the sentiment. It’s certainly a whole lot more meaningful than having a good one, although you won’t hear me saying either of those phrases.

Now that I have given this more thought than it deserves, I do think that the next time someone utters the injunction to “have a good day” in my direction, I am going to smile and look them right in the eyes, and say, “I am going to try to do just that.” (I will not add, despite my devilish intention, “maybe I’ll have two!”)