8 to 11 year olds who studied either piano or a string instrument for a minimum of three years outperformed children with no musical training in auditory discrimination, finger dexterity, verbal ability and non-verbal reasoning. Science Daily reports on a study published in the October 29th PLoS One.

Yes, Charlie has been practicing……….

About autism, that is, this blog having the “a-word” in its title. Frequently discussion here veers off into this topic. The power of association being what it is, the more “the v-word” is mentioned, the more the belief/feeling/notion that there’s a link between said word and autism gets etched into the public’s mind. This association occurs (and is strengthened by source amnesia) no matter how much scientific evidence (and there has been more recently, concurrent with more evidence that autism is genetic) arises that disputes a link.

The good thing about the very large amount of attention attributed to this particular theory of what causes autism is that more people (besides parent advocates of varying beliefs), and in particular more scientists, have turned their attention to the topic. Epidemiology watchdog blogger Epi Wonk recently posted about the Desoto and Hitlan study on blood levels of mercury and autism. (More background from Respectful Insolence.) After going through the data used in the study, EpiWonk conclude (to state it simply):

We can conclude absolutely nothing about the association of ethylmercury in vaccines to autism from these data.

Noting that this was “relatively small data set with weird and unstable distributions of blood mercury”—hair and blood mercury levels of 82 children with autistic spectrum disorder (ASD) and a control group of 55 normal children were analyzed (all from Hong Kong)—EpiWonk states that the study does not show a “significant relationship” between blood mercury and autism. The study also does not show that “there is not a relationship either,” but it is hardly the definitive proof about autistic children as poor mercury excretors etc. that the study is often trumpeted to be.

In light of the NIMH putting a study on chelation therapy on hold—-chelation being a therapy that rests on an unproven theory of autism causation, that it occurs due to mercury poisoning—careful analyses of studies that are said to show a link, and studies and books that are out there in the public sphere, are more than needed. (An understatement if there ever was one.)

Let the Peet-McCarthy mommy cage match rage on. In our corner, we’ve been swimming up a storm—-Charlie’s ready to meet the ocean waves—-and he is starting to learn that when you press one finger on the A string of the cello, it’s B, and when you press one finger on the D string, it’s E. And, with my hand just barely prompting his, he has been playing the right hand part of the first line of Bach’s Minuet in G, from one of my old piano books.

It’s a tune I like to hear.

My son Charlie does not simply like music. It’s simply an essential, and natural, mode that he expresses himself with and just something that he enjoys. He did music therapy when he was 2 1/2 years old and enjoyed hearing someone sing and play the piano to him and try to get him to play maracas and bells. But the effort to teach Charlie to actually play an instrument and read the notes has most shown how music is a medium that Charlie is drawn to.

When he was about 6, Charlie singing “Frére Jacques” was a sign that he was agitated and we started to realize that music was something that Charlie uses to communicate his emotions. Under Istvan Molnar-Szakacs of the UCLA Tennenbaum Center for the Biology of Creativity, researchers are conducting the first-ever study to see if autistic children process musical emotions and social emotions in the same way that “typical” children do. Using neuroimaging — functional magnetic resonance imaging, or fMRI—Molnar-Szakacs will explore how autistic children identify emotions in music and how they identify them from other people’s facial expressions:

“Music has long been known to touch autistic children,” Molnar-Szakacs said. “Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children.”

In addition, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy.

……….

In this study, Molnar-Szakacs will use “emotional music” to examine the brain regions involved in emotion processing.

“Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions.”

15 children on the autism spectrum aged 10-13 will be participating in the study.

Molnar-Szakacs also notes that “‘Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions, from cognition to creativity.’” I’d also say that for Charlie (and for me) music is a “powerful tool” to for communicating and for tapping into abilities of Charlie’s, that would otherwise go—yes—unheard.

The Interagency Autism Coordinating Committee (IACC) coordinates research and efforts pertaining to autism spectrum disorder (ASD) within the Department of Health and Human Services (DHHS). The IACC met this past Monday, May 12 in Washington, D.C. I had attended the November 2007 meeting and learned a great deal and was hoping to attend this May meeting.

Jim had an event planed Monday night—-and then Jim heard that the event was (maybe) not going to happen, so I wrote a statement and submitted it and thought I might go, and then Jim heard that the Monday event might happen. Our Mother’s Day weekend was busy and a bit intense at times and I found myself one moment looking up train tickets on Amtrak and the next realizing that it was Sunday night and I hadn’t planned far enough ahead with my grocery shopping. Jim offered to get up early and drive me at 5.30am to the train station but, all things considered, I suspected the numerous disruptions to Charlie’s Monday might not be the best way to start a week, and especially one already tinged with Birthday Anxiety.

So I closed the Amtrak webpage, made Charlie’s lunch, and graded student papers.

Monday was cold and gray, with pouring rain. I sat at my desk in Jersey City, wrote letters, and was trying to start two annual reports when a student came in (and I told him in a very lowkey way that some of his paper seemed to be similar to material from here); and then another student, who was selected to be the editor-in-chief of the college newspaper, with numerous questions; and then another student, with whom I talked about working with autistic kids. I started writing fall and summer school syllabi. I made it home for the bus and prompted Charlie to do his after-school schedule using the Language Master. He had his usual (large) snack and told me “play cello,” and we did, with Charlie reading the notes and plucking all four strings. It had been a few days without practicing piano, so he did that too and then we went for a quick walk. Charlie stayed by the black car while I ran inside for my bag and off to the grocery store, where he tried to put four packs of sushi in the basket.

“That’s kind of a lot. How about you choose two?”

“Choose,” said Charlie, and put one back.

“Just two,” I said.

“Sushi, I want sushi,” said Charlie.

The three stayed in the basket, which Charlie picked up.

We picked up Jim from the train station and by the time we were home, it was past 8.30pm—-which would have been the time I would have been home had I gone down to Washington, D.C.

And then I wouldn’t have been around to hear Charlie ask to practice, I mean play, cello.

Hope you got the perfect gift for Mother’s Day—-Margaret Lenahan has. Her 16-year-old son, James, was diagnosed with autism around the time that he turned two; today, he is a junior in the Ryken program for special needs students at Xaverian High School in Brooklyn, and a member of the varsity B basketball team for the Xaverian Clippers. From today’s Staten Island Advance:

Get this clear: He’s no sympathy case. He’s a teammate.

“He’s a tough player. He’s really strong. He pushes kids around,” says Tim O’Toole, Joe’s son [Joe O'Toole is another coach] and a Fastbreakers forward. “And when he boxes out, he gets his elbows out there.”

“If you’re going to run a play, whatever you tell him to do, he’ll do it,” said Dylan Burns, Tom’s son [Tom Burns is the guidance counselor who got James to play on the team]. “It’s great having him.”

“The kids,” said coach Burns. “They wanted him on the team. They asked me to give him a uniform.”

“I respect them,” said James. “They wanted me to come. And now I’m returning them the favor.”

“By doing what?” Burns asks him.

“By playing as hard as I could,” James said.

I’ve gotten my gift: Charlie has been learning to play the cello for the past few months. It’s been a very slow process, with the school music teacher and me brainstorming each step of the way. Just teaching Charlie how to hold the cello and how to arrange his body—his knees, legs, shoulders, elbow, arms—-has been an exercise in gross motor planning; I’ve been sitting down with the instrument and seeing how to best sit and angle my ow knees (helps to be the same height as Charlie!).

Charlie’s learned to read and play the A and D strings and is almost there with the G and C strings. He knows how to hold the bow and has only been bowing the C string which is the lowest and the one furthest to the right, and therefore the easiest for him to reach. On the advice of the music teacher to try to get Charlie to use his elbow more, I’ve been kneeling by him and doing what I guess you’d have to call “hand over elbow” to show him (without words) how to bow the other strings. And today, after plucking through a couple of pages of A’s and D’s, I handed the bow to Charlie and he played C-C-C-C-C-C and C-C-C-C-C-C-C-C and more C’s and then I heard it.

G-G-G, quick and short with just a bit of the bow.

G-G-G, bit of the D string, G’s and back to C, C, C, C.

And a lot of applause.

Charlie rearranged the three folded-up fleece blankets at the foot of his bed and called for Jim: “Da-ad! Da-ad!”

“‘Hey pal, I’ll be in to talk to you,” said Jim who was promptly told by Charlie “lie down!”—whereupon, Jim and I had to agree, it might not be a bad idea to get Charlie a full-size double bed for his 11th birthday. He’s slept in a single bed ever since we transitioned Charlie out of his crib (when he was just turning 2 years old) and, needless to say, he’s inches, he’s a few feet taller than he used to be.

When Charlie was 2…….that was when we were living on Ashland Avenue in St. Paul, not far from Ruminator Books (now, sadly, closed). Sometimes Jim and I just look at each other and shrug “where did the time go?”; sometimes it seems like it was only yesterday that I carried Charlie snug in the curve of my left arm, supported by my hip.

Over the weekend, I saw some friends I had last seen eight-plus years ago. Some have kids of their own; others are my age, and not yet married or parents (yet). Everyone asked about Charlie and—how can you explain all those years, the sage of moving from place to place and Charlie learning to talk and swim and ride his bike and the whole epic of finding the right school for Charlie—in snatches of conversation over dinner in a noisy Greek restaurant with lovely food or walking down 8th Avenue towards Time Square and running for a taxi? I often resorted to something basic: “Charlie’s taller than me, his feet are bigger, and he’s got fingers as long as his palms—-just right for playing the cello. Yes, he’s in special ed; he talks some—he tries really hard.”

Just how hard was in full evidence over the past few days. Jim had to spend most of his time in New York attending to a meeting of 20-plus professors from all over the country; they are all contributors to a book on Catholic Studies that Jim is editing. I found myself playing hostess at dinners where—-instead of nudging Charlie to tell the waiter “burger and fries, please”—I was handed the wine list and asked all of guests to move their chairs in together so that two more people could squeeze in. Friday night Jim and I stayed over in a hotel: “He went to sleep ok but Saturday morning……” was my parents’ report when I came home on Saturday around noon to “check in.”

We all went back into New York and Charlie happily walked up and down 7th Avenue to see some friends.”Cousin Bobby! Hal! Cousin Bobby! Hal! Dad!”, Charlie kept saying on the ride in. Charlie said his hello’s and went off for dinner with my parents and was conked out on the couch when—it was past midnight—we got back. “He kept looking out the window, and then he fell asleep,” said my dad.

Charlie dozed off in the back seat beside me as we drove Cousin Bobby to JFK Airport and then I, then Jim, slid into sleep on the couch (it’s blue, beat-up and the slipcovers washed to faded softness, and accordingly conducive to moments of narcolepsy). We woke up just as Davidson College lost to Kansas and Jim took out the bikes.

At first, Charlie kept putting his toes down and walking his bike, and making it clear he was not happy. He was riding his still new red bike: It’s a mountain bike with a sturdy frame–no kid stuff. I ran down the street after Jim and Charlie when Charlie was tiptoe-bike-riding and Jim and I gently urged “pedal!”.

When I turned back towards home, Charlie’s unhappy voice could still be heard. With a “why not” feeling, I pulled out his old yellow bike and—not sure the old dictum of “once you learn to ride a bike, you never forget” would hold—pulled myself up. I went around the block, suddenly more aware of where there was a pothole, where a slight incline, and the coolness of early spring. I remembered when I last rode a bike everywhere, some fifteen years ago in Connecticut. I thought of the red bike I had that was stolen, and how a friend found a grass green Schwinn for sale in front of a thrift store and raced to tell me. I thought of how many mile I once biked.

Charlie grinned and skipped on the sidewalk when he saw me riding his old bike. Jim reported that they had made it to the center of the town and then Charlie just got going—”I think he’s aware of the power of the bike, and what he can do on it,” said Jim. Just as we’re trying always to understand the power inside Charlie that’s poised to come up and show us places we’ve never seen—have yet to see.

It might be better to ask what wasn’t discussed about autism in the past two weeks—-below are posts about genetics, the special diet, Hannah Poling, vaccines, music, education, Ashley X, diagnosis, special education, mitochondrial disease. And a racehorse. And a very very personal matter.

Thanks for reading and please keep letting me know what you think!

• A Horse Named Autism Awareness
  Autism Awareness won $90,000 for his El Camino victory and paid off at $126, beating 62-1 odds. Hurt and no longer running for the roses, owner Johnny Taboada “insists his horse is meant to do something really special.”
• Metaphors, Mitochondria, and the MMR
  More and more on the case of Hannah Poling.
• In College, On the Spectrum
  Increasing numbers of autistic students—-in part because of better educational services earlier in their lives, “federally mandated mainstreaming into regular classrooms,” and parental advocacy —are going to college.
• A Question About Theories of What Causes Autism
  Even though there is more and more evidence in support of a genetic theory of autism, why does so much public opinion seems so hesitant to accept this, and so interested in environmental theories of autism?
• Another Hidden Hoard?: Vaccine Court, Better Diagnosis, and Another Concession
  Just as more educators are now classifying children as having autism for the purposes of special education and services, will there be more claims that a child who was compensated by the vaccine court and who did not then have an autism diagnosis, now be said (retroactively) to have “symptoms of autism” from a vaccine?
• Vaccine Fixation But Where’s the Education
  The concerns about a vaccine-autism link have quite diverted the attention of the public, and of the autism community itself, from concerns about education, therapies, and services that autistic children and autistic adults need today and now, from an individualized, appropriate school program to employment to housing opportunities.
• Special Diet, Charlie Style
  More or less or sometimes gluten-free and casein-free; make sure there’s sushi, rice, and eel.
• The Ashley Treatment, Revisited
  Ashley X is a Seattle area girl whose parents, fearing how to take care of her as she grew older and bigger, had doctors (including endocrinologist Dr. Daniel Gunther, who died last fall) perform the “Ashley Treatment,” in which her uterus and breast buds were removed and estrogen given to her.
• A Lot of Knowledge Can Be a Harmful Thing
  It’s “highly educated parents” who are more likely not to have their children vaccinated with the MMR shot, the Daily Mail reports.
• Autism Myths: Let the Debunking Begin
  Do you think that there are prevailing myths related to autism? What are they?
• “Try Not To Cure Too Much Of It”
  14-year-old Isaac Law: “‘When they manage to cure autism, try not to cure too much of it……because autism might help create more amazing, imaginative minds like mine.’”
• New Study Casts Doubt on Leaky Gut Theory of Autism
  A new study in the Archives of Disease in Childhood suggests that autistic children do not appear to have proteins leaking into their intestinal systems and causing damage.
• Thinking in Music
  We’ve thought that perhaps Charlie has been able to learn to read music much more quickly and readily than words because reading music can offer immediate feedback in the form of the sounds and songs that Charlie play. (And go here to read about the cast and director of Autism: The Musical.
• What’s In a Classification (vs. a Diagnosis)
  How does a certain diagnosis—autism, PDD-NOS, Asperger’s—affect the services and programs that a child receives?
• Disruptions in Contactin 4 and Autism
  Disruptions in the gene contactin 4—which helps the brain make connections—can stop the gene from working properly, and prevent from the brain from making networks, according to researchers in the Journal of Medical Genetics.
• It’s Not the Vaccines
  From the March 24th Newsweek: “Chew believes that vaccines had nothing to do with her son’s condition and she worries that all the vaccine attention detracts from the more-urgent needs of people with autism, who require intensive behavioral interventions and social services—the kind of help her son has received.”
• A Personal Matter
  I answer a reader’s question: “Dr. Chew, if you found yourself pregnant tomorrow, would you take any additional precautions to try to mitigate the risk of your unborn child developing autism?”

It’s the perennial problem: Is it better for autistic students to be educated at public or private schools, in the district or out? From Union City (CA) to Noblesville (IN) to Atlantic City (NJ), school districts are confronting issues like these: Should they hire their own in-house autism consultants? Or seek the services of highly regarded professional from outside agencies? Should a district create its own in-district program, where autistic students are educated in the same schools as their same-aged students, and where there are ready opportunities for inclusion, and where autistic students attend school in the community they live in, and are seen? Where they are simply part of the community (as they should be)?

Too often, these kinds of decisions come down to costs, and not only the price of tuition which can be some $70,000 and more: A student who goes out of district needs transportation, and a school bus with a drive and a bus matron can cost something like $20,000.

I used to think it would be best for Charlie to be in a private school, of which New Jersey has many. The private schools seemed to have everything figured out, at least until a child turns 21. But my own district seems to be making a lot of efforts and plans to create programs for autistic students of all ages and of a range of needs, including pro-vocational training for students who (like my son) will need such. Charlie is going into middle school next year and, while he will continue to work on his reading, math, and other academic skills, teaching him self-care and job training skills will gradually be integrated into his program. Instructors of high school students also have training as job coaches, and will go out in the community with students at various local employers.

And since we are in a public school setting, we keep on seeking other ways for Charlie to be included in areas in which he excels, such as music (those cello lessons—yes, now we are practicing two instruments, piano and cello almost every day) and sports (a goal for the summer is to have Charlie run one lap around the track at the high school). These kinds of opportunities—with kids his age—-would not be possible for him if he were in a private school; for him to participate, more planning and paperwork would probably be necessary.

It’s not easy to get all of this set up in a public school district which has to provide so many other programs and curricula and more for so many other students. But the gains are there, and they’re not just about dollars saved.

Charlie has his second cello lesson today and, now that I have a sense of what’s involved, I’ve begun to put together a music book for him. The school music teacher loaned me the book the students use. A single page is crammed with lines of music, complete with bass clef and rests, and words and numbers in different fonts: A bewildering array for Charlie. I enlarged two lines of music to the size that Charlie is used to from the piano book his teacher made for him. With a binder, dividers, a hole punch, a glue stick, tape, velcro, and pennies, I put together Charlie’s cello book.

Shari asked what I mean by ” . . . a carefully structured ABA approach for piano” and I’ll try to describe some of this here along with talking about how I’m thinking about how to adapt a similar method to teach Charlie cello. (And keeping in mind, that the ABA method of teaching piano is not mine at all, but that of Charle’s piano teacher, Jeff Young.)

There are certainly more educational treatment programs for autistic children out there now than when Charlie was just diagnosed. He started a home ABA program when he was just over two years old and, with the exception of the Miller Method (there is a school using this here in New Jersey; it’s not the right thing for Charlie), most teaching methods (DTT, Floortime/DRI, VB, RDI, various special education teaching methods) have been tried with Charlie in the many classrooms and schools that he’s been in, by numerous teachers, therapists, and aides. Charlie has seemed most at ease and learned the most in a classroom that uses ABA (which is a method that can be readily transferred to a school setting at various age levels; I have some experience with VB in the classroom and less with the other methods). He seems to prefer having schedules (especially visual ones; Charlie’s is now in a binder that he works through with some reminders) and he still needs to have his lessons “broken down” into small parts (in discrete trial teaching, DTT).

When we started piano lessons, Jeff had made up a music book, a schedule book (with pictures, as Charlie can’t read well enough yet), a token board, and two laminated cards on which were small laminated and velcro-backed letters with the names of the keys, starting with middle C and going up an octave for the right hand, and down an octave for the left hand. Jeff put velcro on the piano keys and had Charlie “match” the letters to the keys, with Jeff showing him how to do this the first time. Over the course of a year and a half, letters have slowly been removed so that only middle C, the G above it, and the C below middle C remain.

The first songs that Charlie played used no more than five notes. Jeff always had Charlie “read the notes” first, often with Charlie pointing to each note and reading the letter name (which was printed on the note). Then Charlie played, with Jeff (and me, when we practiced at home), standing beside or behind Charlie and with our hand gently directly Charlie to play the right notes (this was “errorless teaching“).

Thus, Charlie first learned to read the notes and play the notes as a kind of matching exercise. As I noted above, it’s easiest for Charlie to just have a few things to look at on a page: The songs that Charlie first played had the five-line music staff and a few very large notes, with their letter names printed in the middle. There was only one line of music per page. Jeff only gradually added the treble clef and then two lines of music per page (and then three—wow, I thought), and an occasional rest and the time signature. Charlie learned to play with his left hand and the bass clef separately. Switching back and forth from one hand to the other was not easy and required more of the gentle hand-over-hand directing/prompting; Charlie got it, gradually. Harder was playing with both hands together; Charlie has been doing this now after about three months of working on the song “Merrily.” He has also learned to identify and play sharps. We practice for about a half-hour a day and I’m present for the whole practice, to prompt Charlie as he learns new songs and to guide his eyes by pointing to the notes.

(I’ve learned a lot about why reading is difficult for Charlie from these piano practices and seen how hard it is for him to coordinate his right and left hands simultaneously—this is another post!)

I’ve spent a lot of the past week thinking about how to teach Charlie cello. Foremost in my thoughts is that the first thing to learn is simply how to hold the instrument over his left shoulder, with the strings facing away from him (Charlie kept turning the instrument towards himself last Tuesday at his first lesson) and where to place his left hand and fingers. Learning to hold the bow with his right hand is an entirely separate skill to practice without the cello, and having Charlie bowing the strings a lesson even further off in the future.

The music book I put together somewhat resembles Charlie’s piano book (familiarity has its uses). I hope to take some photos of Charlie tomorrow holding the cello and bow, playing pizzicato, etc. (using my rather blurry cell phone camera—-I wrecked my digital camera last summer when it got too much sand and salt water in it as I stood in the waves to take pictures of Charlie swimming; second camera I’ve lost that way). I made up some pages with all A’s and all D’s, and then one lines of A’s and one lines of D’s, and then more D’s and then A’s and A’s and D’s. The intent is to have Charlie learned which is the A string (the highest one) and which the D and to be able to switch back and forth. But my main goal for tomorrow is for Charlie to learn to hold the cello itself correctly and to start to hold the bow in his right hand—practice makes perfect. I’ve rented the cello for four months and bought a music book, so they’ll soon be more to practice (now, if my parents can locate my old music stand from their storage room……).

And, I’ll be transporting the cello in the back of our black car, which is a station wagon: Charlie and the cello won’t be riding the yellow school bus together.

Not, at least, just yet.