Laughter is the best and possibly the oldest medicine, as recently noted on BrainBlogger:

Laughter is a naturally occurring response to humorous stimuli and is a rather easily implemented and cost-effective clinical tool. Some lay publications even report that laughter is equivalent to aerobic exercise. It is true that laughter can increase blood flow, stimulate circulation, contract muscle groups, and improve respiratory function. But, these effects are short-lived and laughter is followed by a period of muscle relaxation, decreased heart rate, slowed respiration, and decreased blood pressure. This period may last as long as 45 minutes. Some research has shown laughter causes a decrease in the levels of the stress hormones epinephrine, norepinephrine, and cortisol. This may explain the relationship between laughter and increased immune function, which leads to overall health benefits. Scientific data supporting the extent and actual benefit of laughter is lacking, however, and some studies have yielded conflicting results.

Impasse at an IEP meeting—-an elaborate mess of all messes across the kitchen floor, the hall carpet, and nearing the bathroom—-crazy moment in line at the grocery store: Laughter soothes, and salves. (And for a laugh, go to BrainBlogger for two the world’s oldest jokes.)

Yes, I do think that the hypothetical “vaccine-autism” link distracts us from the key issues of education, services, and understanding about autism. Nonetheless, vaccines were the topic of some of last week’s top posts:

• Musings on Camp and Independence
  Should I be sending Charlie to camp?
• The Dangers of DIY Doctoring
  Doctors and patients at odds, and the latter more armed with (mis)information than ever.
• Nintendo At School
  Charlie is learning how to play video games, at school.
• Michael Savage’s Parting Shot
  Ah, Michael, just give it up!
• Public Spaces Mean Extra Precautions
  What if I lose my child in a busy public place?
• Not Able to Play In Your Own Back Yard
  Is this about adhering to building codes or disability rights?
• Once Again, TV Does Not Cause Autism
  The title speaks for itself.
• The Truth Is Out There, But Smallpox?
  Oh dear, Age of Autism did it again.
• Strapped to a Toilet in a Darkened Room
  Why do people think these “methods” are going to “work”?
• The Curious Reports of Vaccines and Autism on CBS
  Doing some detecting to figure out how a certain piece of correspondence appeared somewhere; or, what’s going on at CBS news?
• Homemade Remedies
  About white powders and goo, all brewed up in kitchens, and marketed to parents of autistic children.

Green Our Vaccines-ista Jenny McCarthy has spoken about her boyfriend, comedian and actor Jim Carrey, as the “autism whisperer.” Carrey was lauded for marching and speaking at the Green Our Vaccines rally and putting on a Green Our Vaccines t-shirt. Autism, as Carrey said, “made me a man“—-certainly enough, it seems, recently to suit up in some quite feminine beach attire, courtesy of an aforementioned friend.

(Not that anyone still knows what green vaccines are, not that we need to!)

We didn’t catch the Night of Too Many Stars: An Overlooked Benefit for Autism Education comedy show on Sunday night (no TV around here) but it just occurred to me that we were there, sort of: The concert was held at the Beacon Theatre on the Upper West Side in New York, right where were last Thursday night for the Artistic Spectrum reading and on Saturday’s walk in the city. Not that a 2 hour comedy show is the best thing for a schoolboy to watch on a Sunday night when he’s got school on Monday……. Priorities, priorities!

Yes, I do mean “artistic”: The Artistic Spectrum is the name of an exhibition of artwork of young people aged 10-21 with an autism spectrum disorder. The exhibition will be held at the Jewish Community Center in Manhattan. Other events will include an Opening Reception to meet the artists (April 2); a Family Art Day (April 6); and a Lit Café (April 10, 7-9pm) featuring writers on the autism spectrum. Amy Gravino, Jason Ross, Cliff Schumacher, and Leigh Silver will read; Jacob Artson will read via a live feed from LA. My friend MothersVox and I will also read. And, on April 16, comedian Elijah Wapner will perform and the MTV “True Life” series and Autism: The Musical will be screened, and there will be a Q & A session with director Tricia Regan.

Contact Beth Rosenberg for more details and maybe I’ll see you on the 10th of April!

A certain TV show about a certain lawyer and a certain hypothesis about what causes autism dominated autism discussions this week, for better or for worse—-when I talk about autism, I’m thinking of a very real boy, my son Charlie, and not so much about a fictional TV character. My real boy’s week was more of a struggle than has been usual. And then, this evening as we stood in the checkout line at the grocery store, a teenage clerk in the next aisle said “his tooth’s on the floor!” and sure enough, there was Charlie bending over to pick up a large molar (which he tried to put back into his mouth, on the lower right). Things have been a little more peaceful easy feeling ever since—Charlie’s been saying “pull loose tooth” for the past few weeks and a few days ago I found him holding a pair of scissors—-and then a screwdriver—at his mouth, while saying “help fix.”

(Yes, both scissors and screwdriver are quite hidden now.)

• The Unsticking Power of Music
  -year-old David Militello has sung the “Star-Spangled Banner” at NBA games and also before a Martin Luther King, Jr., rally in Atlanta last well. Music—singing, humming—help to “unstick” his mind
• Bad Publicity Is Still Publicity: The AAP and ABC’s Eli Stone
  The American Academy of Pediatrics, in understandable concern about the misinformation that Eli Stone show might spread about a link between autism and vaccines, sends a letter to ABC executives and requests that the show be cancelled.
• Eli Stone: Curiouser and Curiouser, and Zany
  The fantastic, the zany, and the unscientific in Eli Stone.
• Don’t Got Milk?
  The Journal of Autism and Developmental Disorders has published a study about thinner bones in boys with autism spectrum disorders.
• Teaching Strategy #15: Shhhh
  My latest strategy for helping Charlie when he’s in tantrum mode or when I can hear and feel one building up in him: I don’t talk.
• Diagnosis by 18 Months
  Researchers are “confident” that it will become “routine to diagnose autism for children just 18 months old and sometimes even younger” after a five-year study to be conducted by researchers at the University of Michigan, the University of California-Davis and the University of Washington.
• Ethyl Mercury Is Expelled Faster From Babies’ Bodies Than Thought, and Other Autism Truths and Autism Fictions
  With the “Eli Stone controversy” swirling round, the AAP lifts the embargo early on a new study in Pediatrics showing that the ethyl mercury previously used in vaccines as a preservative, is excreted much faster than other forms of mercury in the environment.
• What’s It All About, Eli?
  The idea behind “Eli Stone” is that a highly successful, seemingly selfish lawyer who has—with little apparent regard for ethical concerns—-fought on the side of corporate America, undergoes a sort of conversion experience and decides instead to fight for the “little guy”—the “vaccine-damaged” child of a single mother, in the first episode. Why this conversion occurs is a matter of science, or faith.
• A Pill to Induce Autism?
  A “group of German researchers” has announced that they have “perfected the method for inducing autism.” ??!!!?!?!???
• Handcuffs in Middle School
  11-year-old Gunnar Moody was handcuffed by school police because he would not leave a P.E. class at Bret Harte Middle School in San Jose, California.
• Vaccines in the Media: Emotion Trumping Reason?
  In a new book, Health, Risk and News: The MMR Vaccine and the Media, Dr. Tammy Boyce analyzes the media’s role in perpetuating public suspicion about giving vaccines to children in the UK — her analysis can be readily applied to the controversy over vaccines and autism in the US.

This “Eli Stone” thing just keeps getting curiouser and curiouser, if not just a bit zany.

“Eli Stone”ABC’s new legal drama, set to premier on January 31st, this Thursday and the American Academy of Pediatricians (AAP) has sent ABC a letter asking the network to cancel such a “reckless” show. The January 28th New York Times notes that ABC is defending the show and plans to air it as scheduled. Here are some more details from an article in USA Today:

1. “Eli Stone” is a comedic legal drama: Stone has hallucinations featuring pop crooner George Michael, besides other “whimsical touches” (singing, dancing—-do I hear the pitter patter of the Ally McBeal baby?)
2. Stone is diagnosed with “an inoperable brain aneurysm” by his neurologist brother and that’s why (says USA Today) he decides to fight for the little guy.
3. According to co-creator Greg Berlanti, Eli Stone is “more like an Old Testament prophet who was really a crusader for social justice.” Berlanti further notes that “‘We decided to let Eli be that Don Quixote character, that lawyer everybody wished they had in their corner to take on powers greater than their own.’” (Ok but, last time I read Don Quixote, I kind of got the sense that Cervantes’ fictional knight errant was somewhat deluded about his knightly exploits. But perhaps I digress.)
4. Stone has hallucinations—he “[dodges] a biplane coming at him on the street”—that only he sees and that his Chinese acupuncturist, Dr. Chen, “makes sense of.” (Now, why is the doctor/alternative medicine provider who interprets those mysterious visions Asian—-as if us Asians have some kind of mysterious ability to see the unknown?……..but again I digress).

With all due respect for those who fight for the underdog, I have to say that, after reading more about “Eli Stone,” I find it a bit harder to know what to think about the show. Some, like journalist David Kirby in the Huffington Post are accusing the AAP of “censorship” for that organization’s request that ABC cancel the show; Kirby also chides the AAP for “crushing artistic freedom” and “[stifling] the facts.” But the fact is that “Eli Stone” seems to have more than its share of the fantastic—a mother who claims that her son became autistic through a vaccine wins $5.2 million in a lawsuit—c’mon, who’s fooling who!—and the comic. As for other TV shows whose characters have had some fantastical hallucinations, how about Tony Soprano talking to a fish on ice?

Actor Jim Carrey is, per his girlfriend, autism mother Jenny McCarthy, the “autism whisperer.” I take that to mean that Carrey has, in some not-necessarily-with-words-way, been able to have some kind of connection (in McCarthy’s view) to her 5-year-old autistic son, Evan (”‘Jim came into our life with an open heart and open arms. He’s learned a lot about autism. He listens. The power of listening. It can move mountains.’”)

Not being in a position to comment one way or another on that, I can say that mention of Carrey, star of Dumb and Dumber and Ace Ventura: Pet Detective, reminds me of how much I prefer the perspective of comedy—of laughter, and the good feeling of laughing together—to that of tragedy. I do agree with the ancient Greek tragedian Aeschylus who said (in the Agamemnon), pathe mathon—”learning by suffering”—but there is so much light and love and hope in our days with Charlie that, however many moments of kaka (that is, “bad things,” from the ancient Greek) arise, the chance of being with Charlie outweighs all.

The kala (ancient Greek for “beautiful, noble”) of life with Charlie warrant at least whispering, and even shouting and singing, about.

Sisters Gina Gallagher and Patricia Konjoian have written a book, Shut Up About … Your Perfect Kid! in which they (as the May 7th Sacramento Bee notes) “celebrate all imperfect children.” Gallagher’s son has bipolar disorder and Konjoian’s has Asperger’s syndrome.

“There are so many self-help books out there, and they paint such a dark picture,” Gallagher says about imperfect children. “We wanted to offer hope to parents. It doesn’t have to be the worst-case scenario. Take comfort — you’re not alone.”

Here’s some samples of their humor:

“We really don’t mean to be so hard on parents who brag endlessly about their perfect children (OK, we do),” they write. “It’s just hard to listen to how good their kid is on the baseball field when yours would rather catch real flies …”

……….

Gallagher and Konjoian have come up with their own versions of those bumper stickers. For instance, “My bipolar kid loves me and hates me,” and “I’m spending my kid’s inheritance on co-pays.”

(Make that my retirement money………) You can read more about Shut Up About … Your Perfect Kid! at the authors’ website (where you can find a got issues? bumper sticker).

Just one thing I’d like to note: My son Charlie is autistic, disabled, and a lot of other labels……and perfect.

Now I’ll shut up.

“Autism is a tragedy.” “It is a tragedy to find out that your child has autism.” “It is a tragedy that so many children today are being diagnosed with autism.” How often have you heard statements such as these? (Try here and here.) Or a reference to life with autism as “hell,” as recently mentioned on Scobleizer?

Yes, it is not always, or at all, easy to raise an autistic child. Yes, being the parent of an autistic child—of a child who is minimally verbal, far behind his grade level in his academic skills (Charlie still confuses the letters “B” and “D”), has self-injurious behaviors (under control, but the potential for these lurks). Yes, my expectations for success, achievement, etc., etc. , in my son’s life are far different from what they were before he was born. Yes, there are moments when the suffering that goes on around here could break your heart—-but it is not my suffering, nor my husband’s, that is so wrenching. It is Charlie’s suffering that causes the most ache.

I much thank Robert at Scobleizer for sparking an interesting discussion about autism, causes, cures, treatments, the spectrum. Robert notes that he wrote his post, My Parental Heroes, after speaking to Sridhar Vembu, CEO of Zoho; his company also runs Jambav, which contains free online games and teaching tools. The one part of the Scobleizer post that has been in my mind is this:

Anyway, early on in this conversation Sridhar turned to me and said something like “now you understand why I’m not worried about Google or Microsoft when I go home at night” and added that when you face something like this in your personal life that life at work seems pretty easy, even when facing challenges that the rest of us would think are pretty scary.

It is true, taking care of Charlie makes any worry about work, world politics, even global warming, of secondary concern. Our autistic children call on us to be with them, be for them, by their presence, and taking care of them eclipses what many think “larger” concerns.

Nonetheless: It is the case, I seek to represent life raising an autistic child, and autism, with more light than dark because, truly, our life with Charlie is filled with much more light, with a beauty that might seem strange at first and then metamorphizes into something seeringly fine like Bach’s First Prelude in C Major or the Beatles singing In My Life.

Lately I have been more than ever aware of the huge quantities of anxiety that seem to run through my boy. There is anxiety at happy times—my parents coming from California to visit—-and anxiety at sad times—when they went back home on Thursday. There is anxiety when the usual order of things is disrupted—Charlie usually has a Saturday morning ABA session but his therapist was not able to come, and the smile he woke up with faded fast into big-eyed looks at me, requests for “socks on! Michael barber!”, and frequent sallies into the garage to look at the car. (Jim and I decided to cancel our original plans of hanging around the house and we all drove off so that Charlie could get a haircut—he is now sporting a very nice buzz.) When Charlie is anxious, expressions like “tied up in a knot” make complete sense: He often wrings his long-fingered hands and, from the look of supreme discomfort on his face (still with so many traces of that baby I once crooked in the curve of my left arm), I can almost smell how unpleasant he is feeling, as if a stomach pain to end all others was coursing through his intestines.

I have traced this kind of anxious, nervous ache back to the start of some of Charlie’s most difficult behavior moments or squalls in the past. When he was 6 going on 7 going on 8, these got more intense, more frequent, worse. As Charlie in this time was growing into the long-legged guy (if I may, mensch) that I saw swaggering behind me while sipping the rest of his dad’s soda in an industrial part of Harrison, New Jersey (think prime Sopranos territory), worries about his “getting big” have frequently been raised. When the difficult behavior of an autistic child is mentioned, I have noted that that child’s weight is also often mentioned as if to say, it is going to get much worse, he is so big and strong now and he does not understand……. I am not going to get into details about Charlie’s physique, but I will say that I am not more than five feet tall and Charlie is almost as tall as me—we can switch shirts and shoes (not that I want him wearing my flats). But when I see him on the verge of becoming very, very anxious, I have learned not to show visible signs of worry, or to communicate them in any non-verbal way: Charlie picks up on these like a lightning rod.

Instead—as Jim and I did this morning—we go about our business and we even smile. “Cholly, I know you’re worrying and that is fine,” I said. “The schedule is out of order and I would be bothered too!” When we communicate (verbally; non-verbally) to Charlie that all is all right, he starts to move himself out of his worry. (It also helped that I discovered a container of watermelon that my mother had left in the refrigerator.) As I wrote, we smile and shrug and get on with the day: After the barber was a long bike ride over hill and down dale, Charlie leaning over the handlebars and pumping his legs, then a rush to make a 3.10pm train to Newark and a lot of walking, over the McCarter Highway in Newark to Harrison and the PATH train and onto Jersey City and Peacock Palooza, a “battle of the bands” at the college where I teach. Charlie first wanted a hamburger from the grill, relish, a roll, more relish. “Pickles!” he told me and I pointed out that he’d eaten enough for the moment: “Let’s listen to the music.”

And he did, and began to race-pace back and forth while students danced and moved, and we left late to race-walk down Kennedy Boulevard to catch the PATH and then our train back home. And laughing.

“‘We need to find a structure where Autism is the obstacle and the subject are the people,’” Trisha Regan, director of the film Autism: The Musical is quoted as saying on communicates via music, via song and melody—and, as I have been learning, it is something about his being autistic that is part and parcel of his musical communication and even ability, rather as if—perhaps because language eludes him—-music is something that Charlie is particularly able in and responds readily to.

It is thanks to Charlie that I have learned how much music says. To quote the words of the poet John Keats in his Ode On a Grecian Urn:

Heard melodies are sweet, but those unheard
Are sweeter; therefore, ye soft pipes, play on;
Not to the sensual ear, but, more endeared,
Pipe to the spirit dities of no tone.

I do not know what unheard melodies are brewing in Charlie, what pipes he listens to, and bends his ears to. I do know that there is a kind of poetry to any, every day with Charlie, and that, when I stopped worrying about “curing” and “recovering” Charlie from autism and tuned my ear to hear his melodies (sung; unsung) themselves, he started to do better. The SIBs began to fade. Talking came, more and more, and peaceful easy feelingness. The comedy of life with autism became what it was all about.

“[H]appy melodist, unweari-ed, / Forever piping songs forever new,” writes Keats: Here’s to the songs sung and yet unsung by my young musician, melodist, and mensch. Life with autism is teaching me to hear those sweeter, unheard melodies. Maybe the start is kind of rocky but let me tell you, once he gets going, this boy of mine can really rock.