The other day I read a review of a play by an Irish playwright, and was reminded of another of his plays and was relieved it was a bright morning of full sunshine and a strong wind pushing away the clouds, or I would have been spooked, as this other play (to me) was thoroughly terrifying in a Kafkaesque kind of way (but keep in mind, I can’t handle seeing horror movie).

I was distracted by other things and then, before I knew it, I was running down the stairs to meet Charlie’s schoolbus, and watching him make his lunch, and helping him practice the cello, and then (even though it must have been the coldest day of the year) we went on our daily walk up and down the main boulevard of the condo development we live in. As it had been snowing on and off since Friday, there were medium-high piles of chunky, soot-streaked ice and a patchwork trail of ice from snow that had melted a bit in the day, and refrozen.

In earlier days, I would have been gripping Charlie’s hand, terrified that he might slip on the ice and fall and—if he came down hard on his hand or knee— hit his head, as if to clarify to himself that some other part of his body was hurting. Charlie’s balance when he was younger was always a shaky thing and he didn’t seem to note when there was slippery black ice, versus pavement. Monday night, Charlie walked on his own, now slowing down to tap the ground a bit to see where it was slick, now stopping to stomp and stamp on chunks of frozen snow.

The boulevard is well lit and cars are constantly going by, so it was alternately fairly bright, and then dark, with some of the snowy piles illuminated. As we walked—-Charlie humming and singing a few verses of “Winter Wonderland” in a loop—I thought of how a younger me walking on a dark December evening by myself would have thought irresistably of that other play by the Irish playwright, and been scared to think of who might be walking at my back, or what might be hiding in the shadows.

Maybe I’ll be walking a lot longer with Charlie, and maybe he’ll indeed be living much longer than many children do with their parents, but no play or story too’s scary when you’ve a stalwart, a steady companion, on dark nights and bright days on the long long road. When I’m walking with Charlie, I’m never alone.

Emmett Doyle and Michael Wesely are students—a senior and a junior, respectively— at Apollo High School in Minnesota and are both acting in a school production of A Christmas Carol. Doyle is playing Scrooge and Wesely is playing Marley, who visit Scrooge in ghostly form. As noted in the December 6th St. Cloud Times, both have Asperger’s Syndrome and have found acting a way to work on their social and communication skills.

Elements of theater such as following a script (which enforces turn-taking in conversation), interpreting body language, developing empathy for their characters and working as a team all help with their everyday lives.

Through acting, they are memorizing social cues, which can in turn become more instinctive to them offstage.

“One of the cool things about theater is it’s easier to talk to people. You don’t feel so isolated,” said Wesely, a freshman. “When you get up on stage, you’re not you. Even though you’re not you, you can express yourself as that character.”

“It’s a lot easier to read these lines and think about what you’re doing.”

Theater, the St. Cloud Times notes, is potentially a “legitimate form of autism therapy.” As the article also notes:

Acting is something [Doyle and Wesely] do almost every day.

“We basically spend our entire time acting like we’re not autistic,” said Doyle.

Acting can be seen as sustained role playing, perhaps……….

A theatre production of the 1988 movie Rain Man opens this week at the Apollo Theatre, today’s 24dash reports. The National Autistic Society has been involved with the production from the script and even rehearsals, and Caroline Hattersley, head of information, advice and advocacy, says:

“For many people, the film of ‘Rain Man’ was where they gained their first knowledge of autism, so we are very excited to be so involved in this production and we’re delighted that they were so keen to represent autism accurately.

“A lot has changed in our knowledge of this serious, lifelong condition in the 20 years since the film was released. We now have much more knowledge about autism and how people can be supported to live more independently.

“One thing we are keen to emphasise is that savant skills like Raymond’s are exceptionally rare. Although there is no doubt the Rain Man film put autism in the public mind for the first time, we hope that this new stage production will give us the opportunity to discuss more about how autism affects people in different ways and what further support is needed”.

The movie Rain Man is regularly cited as the source of the “Rain Man Myth—that every autistic person has extraordinary, savant-like qualities. Is a theater adaption of the film necessary, or helpful?

On Saturday night, we took Charlie to see a student variety show at the college where I teach. I’ve taken Charlie to these shows before. We sit in the back—the auditorium’s not very large so every seat is good—and it’s a very relaxed and homey atmosphere. A lot of my students were in the production and they had given me an idea of some of the program: A couple of songs from Disney movies and Broadway musicals, and some improv acts.

The show was almost an hour and a half, with an intermission, and Charlie sat through it all. We got there just as it was starting. A couple of students were clustered at the back and then the opening lines of “The Circle of Life” from The Lion King rang out. The students (or rather, animals) trooped in, with us behind, and “….to the path unwinding” being sung, with piano accompaniment.

Charlie first sat quietly and was rapt when one student sang a solo and a couple of guys did a song (complete with swords) from The Pirates of Penzance then put his hands over his ears and started stomping and verbalizing. (The microphone volume was too loud at one point and —I almost felt I could feel something vibrating— and I started to put my hands over my ears.) I put a finger to my lips and encouraged Charlie when he was quiet, and rubbed his back, and repeated those steps when the stomping and verbalizing started up.

That was into about 20 minutes of the show after which Charlie sat quietly (with hands on and off his ears) not only through the songs, but also during some of the comedy improv scenes. These are only a few minutes long but with a lot of fast talking and topical humor that’s hard for Charlie to follow. He watched the first few scenes intently as Stitch (as in Leelo and Stitch—-it was a very Disney show) was featured in one short and Iago (as in Aladdin not, as I thought, Hamlet).

At intermission, a couple of students came over to say hi; I’ve known more than a few of them since they were freshmen, and now they’re seniors in their last year of college. I used to bring Charlie to class some days in my first year when he was sick. We reminisced that Charlie’d been just up to my shoulder then, and now here was a tall boy with gangly legs splayed out, his head propped up on his elbows. I mentioned to one student—a Classics minor—about a trip to Greece in the spring; her face brightened, and then she sighed when she found out that it would be at a time when she has to be working.

“I’ve never been there,” I said. I explained that I’d been to Italy and Rome when I was in graduate school. Jim and I got married just after I got my doctorate and then Charlie was born and then—–since then, travel itself has been pretty much a luxury.

“I’ll get there someday,” my student sighed.

“You will,” I said.

Charlie’s favorite moments were when the whole cast stood in a line on the stage and sang and danced in unison, or wove in and out among each other. After the cast had taken their bows and the curtain had closed, one student stuck his head out and called out “super duper!” “Super duper!” Charlie repeated. I agreed; “super duper!” Charlie said again, and smiled.

Oh yes.

One of the final numbers in the second half was “The Bare Necessities” from Jungle Book—-a song I remember singing not only with Charlie while tugging him around the room to dance, but also with my sister. (With the record spinning on our kiddy record player, she’d be Baloo the bear; I was Bagheera the panther). So many worries and strife in life; so much time spent looking around for something I thought I wanted, and it can’t be found With the basics of a very lovely boy and really lovely husband, of love and home and work, and a good school for my boy, I think I’ve got what I need, right here and now.

Late Sunday afternoon Charlie was hanging around the front door when I looked at him and saw that three of his left hand fingers were bloody, and then noticed a similar Hawaiian Punch-like stain on his left cheek and a little white wadded-up-paper-looking-thing in his right thumb and finger….

“You lost a tooth!” I said.

“Tooth!” said Charlie and grinned and, when I asked, handed me the tooth (from the upper left part of his mouth, where he has two more new ones already coming in). I thought: No wonder he kept chewing on the front of his t-shirt on Saturday afternoon, and picked up bits of food with his fingers and put them carefully into his mouth, and kept thrusting his head forward like a stork and closing his eyes in a kind of repetitive way. Had the lower part of his face been tingling in pain?

Not being able to feel pain–physical and emotional—is one of those myths of autism that’s had too long a life. Charlie’s language is very limited and he does not use words like “My mouth hurts” to tell us that. He does try to communicate, through his behavior, and every day I spend with Charlie teaches me a little more of how to understand what he’s telling me, and about how to best speak to him.

Before Charlie was diagnosed with autism, and before he was born, I was a translator though not in the most “useful” way. I translate ancient languages, “dead” languages—-Latin and ancient Greek (this is my book)—-languages that are silent and whose meanings are forgotten. I don’t know enough Cantonese to have a conversation with my grandmother, Ngin-Ngin, though plenty’s been said between us—-call it the language of food and brown noodles. Languages aren’t always spoken and given voice to; the hours I once spent poring through dictionaries, commentaries, books about Roman agriculture and Greek names for birds and considering the nuances of sic, which is Latin for “thus” and rather a lot—this taught me that a word doesn’t always mean what you think it might.

Trying to understand Charlie’s communication—-the different language of a boy who learned sign language first—reminds me of how slippery and imprecise a tool language can be. Should “dysfunction” or “disorder” or “disease” be used in regard to this condition? Is autism a “disability,” “disorder,” “disease,” “illness,” “difference,” “identity,” or something else? What word you use reveals more than a little of your views about autism.

And it’s the same with words like “vaccine adverse event,” “bias,” “plausible,” and “significant”—-these are all terms that you might find in discussions about vaccines, autism, and science. But, as Martin Myers, MD, a pediatrician and executive director of the nonprofit National Network for Immunization Information, the meanings of these words in a scientific setting often differs from the general public’s understanding. Dr. Myers, along with Diego Pineda, is the author of the recently-published Do Vaccines Cause That?!: A Guide For Evaluating Vaccine Safety Concerns. Here’s what they say about technical jargon:

The late Carl Sagan said during a 1995 speech, “We have designed our civilization based on science and technology and at the same time arranged things so that almost no one understands anything at all about science and technology. This is a clear prescription for disaster.”

Even when information is available [as it is so much now on the internet], scientists often have trouble communicating their findings to the public. Not only do they communicate with technical terms, but often their words may mean something completely different from the same words when used in everyday conversations. [p. 44]

Page 45 contains a table with a list of words and “what it means for vaccine scientists” and “what it means for the public.” To cite the above-noted words:

vaccine adverse event IS “something that occurred at about the same time as vaccination, which may or may not be caused by the vaccine” NOT simply “something caused by the vaccine (vaccine reaction or side effect)”

bias IS “systematic error that could lead to the wrong conclusion. For example, selection bias means the manner by which subjects were selected could have influenced the results” NOT simply “not having an open mind.”

plausible IS “theoretically possible” NOT simply “appearing worthy of belief, factual”

safe IS “remote or insignificant risk” NOT simply “no risk or zero risk”

significant IS “this may not be a chance difference” NOT simply “important”

In a July 7th interview with AMNews, Dr. Myers says this about why he and Diego Pineda the book:

is meant as a tool to help parents understand what they are hearing and how to evaluate it. We do not advocate. Each section of the book was reviewed by technical experts and parents. We had a panel of parents read the book and tell us whether we were clear or not.

One of my favorite anecdotes concerns a parent who acknowledged that the book was informative but also said it was boring and not the kind of thing a parent is going to read. So we went back and started over.

Do Vaccines Cause That?! provides lucid and cogent explanations of what vaccines are and what they do, and about why so much public misinformation and mistrust has arisen over them. The book is commonsensical in tone and is clearly addressed to parents concerned about doing the best thing for their children. It’s written in “reader-friendly” language and it doesn’t talk down to parents. The authors acknowledge parental worries and do a great public service by compiling so much information about vaccines into one book. If you don’t agree with the authors, it’s even more important that you read it, because Do Vaccines Cause That?! provides thoughtful answers and explanations about vaccines and what they cause and don’t (asthma, multiple sclerosis, encephalopathy, AIDS, and more are addressed), and sets forth its arguments calmly, and compellingly.

After all, just enough well-chosen words can say a lot—-almost as much as the gnawed-on collar of an 11-year-old’s black Puma shirt.

My college students are performing Cabaret and tonight Charlie and I went to see it. For the past month, Charlie has been doing something he has never done before, putting his hands over his ears when the radio is on in the car and when he hears human voices that are too loud or high-pitched. So I was not sure if bringing Charlie to a musical was the best idea.

We sat down in the back row and Charlie said hello to the athletics director (at my prompting) and then “no” to shaking hands with the chair of the history department. There were musicians on stage and when they started playing, up went Charlie’s hands; the same happened when there was dialogue and for most of the singing (especially when two female students sang in high girlish voices) and when the drums played. Only at the mellower voice of the student playing the lead role of Sally Bowles, did Charlie put down his hands, and then up they went again when the talking began.

At first I thought we should leave but Charlie did not ask to go. When a group of people sat in front of us, he craned his neck to follow the actors, and his eyes intently followed an ensemble of dancing figures moving around the stage. And in the scene when Sally Bowles entered the room of the young American writer Clifford Bradshaw and said, “Can I get you a drink?”, Charlie beside me said “Yes, green drink.”

“Audience” is from the Latin word for “hear, listen,” audire. Even with his hands over his ears, Charlie was definitely doing his part as a member of the audience, totally tuning in.

I really think of this piece as a love story between a husband and wife, between a mother and a son and between a father and a son.”

Says playwright Stacey Dinner-Levin of her play, Autistic License, which will be performed April 25 and 26 at the Illusion Theater in Minneapolis. More from Dinner-Levin (who has an autistic child) about her inspiration for writing Autistic License:

“This play is based upon our experience of raising a child with autism - the things that happened in our family that were tragic, surreal and funny. This is the kind of stuff you can’t make up! Nobody sees what goes on in families with a child living with a disability. To me theater was the perfect vehicle to tell this story and to give voice to all families living with disability. I really wanted to open the doors, take down the walls of our house and say, ‘Come in, take a good look, and see this for what it is: the struggle of my life, along with the beauty and the joy.’”

The play offers a glimpse of what it is like to raise a child “in a world that has far too many opinions on what is ‘normal.’” Michael Paul Levin, the playwright’s husband, plays the role of the autistic son.

Dinner-Levin’s comment about the play as about a couple of “love stories”—between father and son, mother and son, and between husband and wife: This rings home most of all with me. Even on the toughest, darkest gray days it’s love and sticking together that sustain.

There’s been plenty of press for Autism: The Musical, which has been shown at a number of film festivals and will be shown on HBO tomorrow night, Tuesday, March 25th at 8 p.m. ET/PT. Here’s an interview with educator, performer, and acting coach Elaine Hall, the mother of Neal, one of the children in the show, and the founder of The Miracle Project, a program she created to get autistic kids involved in theater. The six-month process of those five children meeting, developing, and performing “Who Am I: A Time Traveler’s Tale” is recorded in Autism: The Musical, which is directed by Tricia Regan.

Reviews of the film from Toronto can be found here, and also from the Seattle Times Newspaper (”the documentary fully engages the viewer and observes the kids’ accomplishments without a saccharine moment”) and the New York Times. You can read more about the families here on HBO and also see five clips of the movie here.

I first heard about Autism: The Musical just about a year ago. As I’ve frequently noted, music a big part of my son Charlie’s life, from the time he was a baby and Jim whistled and sang specially adapted songs (”We love you Charlie, oh yes we do”; “O Cholly Boy”—-yes, “Danny Boy”; Charlie is half-Irish). I set him on my lap while I played lullabies and Bach on the piano and there’s a photo somewhere of baby Charlie on Jim’s lap tapping a congo drum. What would car rides be without CDs playing (no more Barney ones, thankfully) or now FM radio? How many therapists and teachers have happily reported to me “Charlie loved it when we sang together!” And (ok, cue in the violins), I get that mom-heart-in-throat-thing when Charlie plays the songs in his piano book, and when he reached for the bow and rosin before we practiced the cello, and when I can feel him move his own finger from the D to the A string as he reads from his book. Music is one of the main ways that Charlie and Jim and I communicate.

Sometimes it does feel that the music playing as the background to our lives has been something like “I am a poor wayfaring stranger”—Jim and I were counting last night that Charlie has lived in eight different places so far and he’s not yet eleven. He’s been in nine schools and I’m not going to start counting how many teachers, therapists, and aides he’s had. Sometimes when something simple and lovely happens—-when Charlie started to play piano with both hands simultaneously after working on this for months—-strains of the Beatles’ “In My Life” fill my ears. And I still often hear Paul Westerberg’s weary-world voice singing “Sadly Beautiful.”

I guess you could say that it often feels that someone around here is ever on the verge of breaking out into song……..just like in a musical.

According to Access Hollywood, an autistic boy plays the autistic child in ABC’s comedic legal drama “Eli Stone,” scheduled to premier tonight. This is an interesting development, to have an autistic child playing an autistic child: People have often questioned and criticized the accuracy and authenticity of actors and actresses playing autistic characters, as Dustin Hoffman in Rain Man and Sigourney Weaver in Snow Cake.

It is, though, all the more unfortunate that a vaccine—via a fictional substance called “mercuritol“—is said to be why William, in the child in “Eli Stone,” has autism. Will a future episode make mention of,or even show the child undergoing chelation—-in which medications are given to a child to remove heavy metals from the blood and so to “detoxify” the body—or other “alternative, biomedical treatments“? Will the autistic child on this TV show be allowed to remain autistic?

Julie Deardorff who writes Julie’s Health Club for the Chicago Tribune suggests (after seeing the pilot of “Eli Stone”) that the show is not about autism:

….., the autism in the story line is almost incidental given all the other loopy things that are packed into the pilot. The show is not about whether vaccines cause autism. It’s about the redemptive powers of faith. What the episode’s conclusion really asks is: Which is the greater force in life: science or faith

Deardorff writes that the “autism-vaccine debate” is about what people, and specifically parents of autistic children, believe, the scientific evidence that there is no link between vaccines and autism, or their own faith that one day their child was “normal” and the next, post-vaccination, autistic. “It won’t matter how many studies show there is no link between vaccines and autism,” writes Deardorff. “We all believe our own truths.” We do indeed: Last June, during the Cedillo trial in which the parents of 12-year-old Michelle Cedillo claimed that she became autistic after receiving a vaccine, essays by journalist Arthur Allen and anthropologist Roy Richard Grinker both discussed why there is no dispelling an autism-vaccine link. Writes Grinker:

Two distinct communities have emerged, and though they both employ the language of science, their ideas are simply incommensurable. The two groups co-exist, like creationism and evolutionary biology, but they operate on such different premises that a true dialogue is nearly impossible.

The idea behind “Eli Stone,” as revealed in media reports, 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, as Deardroff writes: When Stone starts to hear George Michael singing, is this the result of a brain aneurysm or because Stone is some sort of 21st-century prophet?

Some will continue to believe that a vaccine or something in a vaccine caused their child to become autistic, even as yet another study disproves a link between autism and mercury and/or vaccines—-perhaps it all depends on what script you’ve decided to follow, and who’s playing what part.

Houston Texas players Jason Simmons and Ahman Green helped make it possible for single mother Regina Foster, whose son Reggie is autistic, to make a $50,000 down payment on a house in a Houston suburb, today’s Sports Illustrated reports. A mother in the Chicago area, Kristin M. Scott, writes a letter reflecting on all those who have loved her teenage son Daniel, who recently moved to a residential school in Wisconsin for developmentally disabled children and teens. The Great Falls Tribune notes that 5-year-old Elijah is excelling “beautifully”; his father Eric Johnson called him “autastic.” Students at the ACES Village School in North Haven, CT, sing in a chorus, as the Hartford Courant describes. Also in Connecticut, getting a diagnosis of Asperger Syndrome has made all the difference in 17-year-old Taylor Rosado’s life. In Montclair, New Jersey, students with Asperger Syndrome participate in a 12-week theater program.

As the Daily Advertiser in Shreveport, LA, notes, 2007 was a year in which autism “[grabbed] headlines like never before with the revelation of the diagnosis in actress Jenny McCarthy’s son,” and for a few other reasons (like those just cited). The Daily Advertiser also notes the extent to which a parent can go to teach a child:

As a mother of an autistic child, Tina Jolley knows all too well that autistic children certainly can learn, but most need to be taught in a different way.

“The old fashion way is just not going to work,” said Jolley, who once stood on her head to get her son to listen to a story. “He aced that test.”

If I could stand on my head and tell Charlie a story, that would be headlines around here.