Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.

Gluten-free diets are now being used to address conditions ranging from autism to ADHD. As noted in this week’s Newsweek, those with allergies and pregnant women are also saying they feel better on what’s come to be known in autism circles as “the special diet” or “the diet.” (Go here, here, and here to read some of our experiences with “the diet”; Charlie now eats wheat, though not dairy.) Is gluten-free the new hope, or is it more dietary hype, with Americans spending $2 billion a year on gluten-free products?

8-gold-medal swimmer Michael Phelps has ADHD: Did he succeed not so much in spite of having ADHD, but, in part, because he does?

Tara Parker-Pope on the New York Times Well blog posed this question. Allow me to rephrase it in terms of autism and (to refer to an oft-mentioned figure), animal scientist Temple Grandin.

Did Grandin succeed not so much in spite of being autistic, but because she is?

And as some will not doubt rush in to point out that Grandin is very “hfa,” I’ll note that some things that can make things very trying for more son—his intensive need for order and his particular, deep-running sensory needs—can be of benefit. I always know where to look for his items and he’s becoming a champion grocery-put-awayer. I don’t think he’d himself be such a swimmer if he didn’t like being–need to be–in the water so.

One of the main concerns that people raise in regard to giving medication to autistic children, and to children more generally, is that there’s a lack of information about the long-term effects of the medication on a child. According to a new study by researchers from the National Institutes of Health (NIH) and Duke University Medical Center, two medications commonly prescribed for treating ADHD—methylphenidate and amphetamine—do not cause chromosomal damage in children. (My son briefly—very briefly—took Ritalin; while taking it, he became so focused that he became extremely anxious, lost his appetite and looked—this is the best word—skittish; we discontinued the medication after less than a week.)

From Science Daily:

The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic [chromosomal] measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.

The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.

The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes)

The study, researchers noted, is not to be taken as the final word on the long-term safety of using stimulant medications for treating ADHD in children. It is published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP).

More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger, the November 18th New York Times reports. A panel of federal drug experts stated that medications like Risperdal are ” being used far too cavalierly in children” and that “federal drug regulators must do more to warn doctors of their substantial risks.”

Risperdal has been approved for treating irritability in autistic children. The New York Times notes that “in many cases, the drug was prescribed to treat attention deficit disorders,” for which it has not been approved for:

The meeting on Tuesday was scheduled to be a routine review of the pediatric safety of Risperdal and Zyprexa, popular antipsychotic medicines made, respectively, by Johnson & Johnson and Eli Lilly & Company. Food and Drug Administration officials proposed that the committee endorse the agency’s routine monitoring of the safety of the medicines in children and support its previous efforts to highlight the drugs’ risks.

But committee members unanimously rejected the agency’s proposals, saying that far more needed to be done to discourage the medicines’ growing use in children, particularly to treat conditions for which the medicines have not been approved.

“The data show there is a substantial amount of prescribing for attention deficit disorder, and I wonder if we have given enough weight to the adverse-event profile of the drug in light of this,” Dr. Daniel Notterman, a senior health policy analyst at Princeton University and a panel member, said when speaking about Risperdal.

The side effects of Risperdal are serious and include substantial weight gain, metabolic disorders, tardive dyskinesia and dystonia.

My son’s among those 389,000 children, and among those 240,000 children aged 12 and younger, who are taking Risperdal. He’s been taking Risperdal since the spring of 2004, at a time when his self-injurious behavior—head-banging—-was severe and he was on the verge of being removed from a public school special education classroom to an out-of-district placement. This is a more detailed account of what Charlie’s experience on Risperdal has been. The most difficult side effect has been the substantial increase in his appetite and the resulting wet gain; we’ve sought to address this by watching Charlie’s diet (and minimizing junk food, in particular) and by making sure he gets a lot of exercise.

I really didn’t want to put Charlie on medication. And truly, it’s not the “answer” in and of itself for addressing aggressive or “problem behaviors.” Even as he wrote the first prescription for Risperdal for Charlie, our pediatric neurologist told us sternly that Charlie also had to have behavior therapy; that we had to keep his education in mind first.

Charlie was 7 1/2 when he started taking Risperdal — since then, mostly via this post, I’ve heard of younger and younger children being prescribed Risperdal. The federal panel’s concern seems very much justified. The New York Times notes a few more reasons why, including the rise of the diagnosis of bipolar disorder in children; however:

The leading advocate for the bipolar diagnosis is Dr. Joseph Biederman, a child psychiatrist at Harvard University whose work is under a cloud after a Congressional investigation revealed that he had failed to report to his university at least $1.4 million in outside income from the makers of antipsychotic medicines.

In the past year, Risperdal prescriptions to patients 17 and younger increased 10 percent, while prescriptions among adults declined 5 percent. Most of the pediatric prescriptions were written by psychiatrists.

From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal.

At least 11 of the deaths were children whose treatment with Risperdal was unapproved by the F.D.A. Once the agency approves a medicine for a particular condition, doctors are free to prescribe it for other problems.

Panel members said they had for years been concerned about the effects of Risperdal and similar medicines, but F.D.A. officials said no studies had been done to test the drugs’ long-term safety.

No studies done to test the drugs’ long-term safety: It’s a phrase that keeps ringing in my ears; in any parents’ ears. Charlie can’t tell us how he feels taking the medications so it’s up to us and Charlie’s teachers to watch and observe, to adjust and alter. And to know that, medications can help, but they’re just on part of the picture, and a part that needs to be kept under very careful scrutiny.

Having ADHD might be beneficial to a group of nomads in Kenya, yesterday’s Science Daily reports. Nomadic tribesmen who have an ADHD-variant of the gene DRD4 fare better have better health than those without it, but when they settle, they become malnourished. DRD4 codes for a receptor for dopamine; according to Dan Eisenberg, an anthropology graduate student from Northwestern University, “‘this gene is likely to be involved in impulsivity, reward anticipation and addiction’.” Eisenberg also notes:

“The DRD4/7R allele has been linked to greater food and drug cravings, novelty-seeking, and ADHD symptoms. It is possible that in the nomadic setting, a boy with this allele might be able to more effectively defend livestock against raiders or locate food and water sources, but that the same tendencies might not be as beneficial in settled pursuits such as focusing in school, farming or selling goods”.

These findings suggest that behavior differences previously associated with the DRD4 gene, such as ADHD, are more or less effective depending on the environment.

Makes plenty of sense to me: My “very ADHD” husband, Jim, is never so much at home as when he’s on the move, walking around the city, biking around town with Charlie, driving anywhere in New Jersey. But seat him at a desk and he’s up before you know it. And sometimes it seems Charlie would be reasonably happy to live mostly in the car and be ever on the road.

A disability can have—-does have—-its strengths.

Yes—what with the poll over at Larry King Live asking if you believe that vaccines cause or contribute to autism; and the CNN report tonight; and the fact that all I had to do while standing in line at the store with two bottles of melatonin, sushi and watermelon for Charlie, and my eco-friendly “carry your own bag” shopping bag was to turn around and behold! there was the headline “David Kirby on Autism and Vaccines” on the cover of Mothering magazine—-once again this blog, which is an autism blog, is in danger of becoming a vaccine blog, as you can see from recent past posts. For the record, I voted “NO” in the Larry King poll and I have to say that “yes” there will be more posts here about vaccines, which, one can say, have become linked in the public imagination with autism.

Me, when I hear the word vaccine, my mind flips back inextricably to a certain 7th grade boy who was, once upon a time, in my Beginning Latin class at a certain prep school in the suburbs of St. Louis, Missouri. This student was quick and—perhaps being a 7th grade boy—ADD-ish, or rather ADHD-ish: pencils, or pens, or gel pens, or fingers, or the covers of Ecce Romani! (Behold the Romans!) were always a tap-tapping on his desk and he played the same with words. “Equus is horse, Magistra Chew, so what’s cat? mouse? goat? pig is a porcus like pork and Porky Pig!” (That made the class laugh, and me too.) “What about cow, does a cow say ‘moo’ in Latin, Magistra Chew—-does a vacca moo?”

And vacca is the root word for vaccine—–and now I have my own perpetual motion machine of a boy.

Charlie’s been rubbing at his nose and coughing a bit, but so far (so far!) does not seem to have the dastardly illness I am kind of pulling myself out of. He did only eat half his lunch and, on a walk, dawdled and stamped at the dead leaves in the mud. We walked up a slight hill one way and then back down to go home, and on the return trip Charlie started to go a bit ahead. As he approached the curb, a car was coming from the left with headlights on: Charlie stopped at the curb, turned his head to the left, and looked back at me. He waited.

Ecce!

The driver kindly honked and gestured that we should go and Charlie winced and scrunched up his face. We walked home with me thinking that the program to cross the street (he’s been learning this at school) is working. At a busier street, Charlie again stopped and turned his head to the left and noted two cars pass by. Then we crossed together.

We’re far, far, from Charlie crossing the street by himself and maybe that won’t ever happen—one step at a time,  and always careful to look and listen (both ways) and to stop and start again.

(And since I’m in Latin-mode, “cow moos” would be vacca mugit.)

A new study from the Journal of Pediatric Nursing called I Have Always Felt Different reports on the experiences of sixteen college students (aged 18-25) who were diagnosed with ADHD as children. The study is by Assistant Professors Robin Bartlett and Mona M. Shattell, of the School of Nursing at the University of North Carolina at Greensboro, and Tracie Rowe. The students (who were primarily non-Hispanic white college-enrolled women) talked about how having ADHD affected their life at home and at school, and friendships:

Although participants had trouble getting along with their parents, many perceived their parents as supportive. Participants also had a degree of sympathy or understanding for how their behavior affected their parents. For example, one said, “I’m forgetful. And she’d get home from a hard day at work and I’d bug the crap out of her. She’d tell me to do something and I’d forget it.”

Participants’ experiences of having ADHD within the context of school was expressed in three figural themes: “I was different, “I missed a lot of stuff,” and “I learned how to manage.”

Even participants who had friends experienced interpersonal difficulties with them. ADHD symptoms such as distractibility, difficulty focusing, and hyperactivity had an impact on their communication. For example, one said, “Interacting with friends is a very complex area for me… the problem I have is communicating with them.”

The New York Times Well blog summarizes the study, along with discussion from readers (the first of whom noted “This is something I couldn’t find in health books”).

Each year, my husband Jim who teaches history and religion at Fordham University and I have noted that there is at leastone student who we think might be on the autism spectrum in one of our classes, and I think this will happen more and more. The NYTimes’ Well blog opens with the question “What does it feel like to have attention deficit disorder?”—–I think we can already starting asking the same question of students today.

(Some of whom read this weblog and have taught me more than a little.)