Just seconds after Jill announced from the bathroom that Alex could squeeze out the toothpaste by himself I hear her announce, “And we have bleeding gums!”

I’ve always been grateful for any toothbrushing that Alex did for himself. They taught him at school, and after an initial shakedown - he had to remember to brush the tops as well as the bottoms - at least it was another task he could handle by himself.

But bleeding gums? My gums bleed sometime during dental cleanings, but I’m 47. Alex is 10.

So now we turn to all those things they say you’re supposed to do and all of us feel guilty for not doing enough. Floss. A Waterpik on the low setting. Elemental teeth care, which in our case will be taught against the wall of sand that is autism.

“Ned,” I say, “listen…” I fill him in the bleeding gums, and point out that Alex will often do things if he sees Ned does them and they seem like fun. Ned agrees, and flies into using the Waterpik; first thing Ned does is spray the mirror.

We’re no strangers to questions about Alex’s dental care. His teeth are yellow (mine have been too, for decades, until White Strips came along). His upper gums seem swollen, his teeth just little buds in the pink. For a while we worried that he was grinding his permanent molars down to the gums, and we wondered if he needed caps.

For a few years we’ve been taking him to one of the few dental clinics available to special-needs kids in New York. Good place, except every time we went we found a new dentist waiting for us. All nice dentists, who all said Alex was a pretty good patient in the chair (when somebody screams, it’s easy to see their teeth…), and that no, he wasn’t grinding his teeth and yes, he did have a small cavity but it was in a baby tooth he’d likely soon lose anyway.

Bleeding gums. Alex watches Ned spray the mirror, standing there laughing with me sitting on the toilet and hugging him as if he were about three. Alex giggles into his hands, which he holds over his mouth. In the grocery store, I walk Alex by the toothpaste aisle, hoping to find Elmo Dental Floss (Do they make such a thing? They should.) “Alex, this is floss,” I say.

I think we can do this. My first Waterpikking with him goes well: He laughs as the gentle spray hits the swollen pink. I teach him to brush at 45 degrees. All the stuff we feel guilty about not doing. But there’s a world of difference between feeling guilty about not doing something for yourself and not doing it for Alex.

Primer on pediatric dental care for children with autism: http://dentalresource.org/topic55autistic.html

(Image: sxc.hu)

My biggest fear for Alex right now is that one day he’s going to open his mouth and display a horror show of missing teeth, yellowed stumps and strange misshapen gums to the world.

Yesterday morning, I was watching Alex brush his teeth.  His usual method takes him about 10 seconds, so I started singing the Alphabet song to him to make him brush longer. Impatiently, I took the brush from him and did a little brushing for him. His back gums, which seem very overgrown to me, seemed a little puffy. Then his front gums began to bleed a little.

Maybe we haven’t delved deeply enough into special needs dentistry. So far, Alex has had annual checkups with the special needs clinic of an agency in New York City, and it seems kind of lacking. A few dentists have already come and gone during the last few years. One suggested we bring Alex in every few weeks just to get used to going there and sitting in the chair, but she left. I liked this idea - and think they should partner with their occupational therapists to teach kids to sit in the dentist’s chair. I hate to think of Alex being “papoosed” - a term they drop casually, like it’s just a hit of nitrous oxide.

Don’t know what the papoose board is? On this site, I see a caution against going to dental practitioners that use it or other restraints - which makes me uneasy and unhappy. What kind of  subpar dental care have we been subjecting Alex to?

My answer to what might be an incipient gum problem (and I hope it works) is the Water Pik. (An aside: I’ve had my own adventures in dental issues, and I’m a recent convert to the Water Pik. “Your gums look great!” my hygienist said, a few months ago.) So yesterday I filled it, got one of the extra heads, and set the dial on the lowest setting. I let Alex feel it on his finger. So far, so good. A few giggles. Then I tried getting him to put it in his mouth. Not so good. However, he did give in eventually and let me put it against his gums for a few seconds.

We did it again last night and this morning, and my plan is to just keep doing it over and over, using threats and bribes as necessary. (I have cookie dough ready to go, even as we speak.)

Jeff sent me a link to a video that shows a dentist helping a child with autism get use to the dentist’s chair, and I can see it’s going to take a while. Will it be difficult? Sure. But, all I have to do is recall a man I see on the bus now and then. He’s developmentally disabled. He’s always with his mother. His mouth is one of the saddest things I’ve ever seen, and I’m sure it’s because he was frightened of the dentist when he was small, and no one was able to find a way to make him unafraid to open his mouth.

An article in the December Pediatrics examines the health care experiences of families with autistic children in the US. Researchers looked at a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs; the children’s needs were “physical and mental,” and required medical care that was more than usual, yesterday’s Associated Press (via AZ Central) reports. 2,088 children of those children had autism.

The article is entitled A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006, by Michael D. Kogan, Bonnie B. Strickland, Stephen J. Blumberg, Gopal K. Singh, James M. Perrin, Peter C. van Dyck. The Associated Press notes that

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

Jacquie Mace, the mother of a 12-year-old autistic son, Austin, is quoted as saying that she spends “‘easily $15,000 to $20,000 out of pocket’” for her son; she’s still “working to pay off a $7,000 bill” for dental work for Austin, who required sedation and hospitalization as he is not able to sit in the dentist’s chair.

The topic of the “financial strain” on families to take care of an autistic child or relative is frequently noted, and perhaps even more in a time of economic uncertainty. A 2006 book, Understanding Autism: From Basic Neuroscience to Treatment by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated that it costs $32 million to take care of an autistic person over the course of her or his lifetime; some $29,000 plus for “direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies” for an autistic person per year; some $38,000 to $43,000 for “direct non-medical costs, such as special education, camps, and child care” per year.

Those are big, and scary numbers. We’ve certainly spent a lot on Charlie’s education and medical needs. The dentist who Charlie’s grown familiar with is not covered by our insurance plan. When Charlie was younger, he did a lot of in-home ABA, verbal behavior, and speech therapy and we’ve always paid babysitters extra. And then there’s the lawyer, and more, and the reality that the jobs that Charlie will work at when he’s older are most likely not going to be high-paying.

And yet: If Charlie had not been autistic, I suspect there’d still have been plenty of “costs,” from childcare to camp to college to who knows what. According to 2007 USDA figures on Expeditures on Children by Families, families spend almost $300,000 from when a child is born to when he or she turns 17.

Talk about costs, while inevitable, can veer into talking about the “burden” of taking care of a disabled child, of a child who has “extra” needs and who may need care and support for much longer than a child who’s not disabled. While we’ve had our full share of difficult moments in trying to do our best by Charlie, taking care of him’s no burden. Sure we’ve had to give some things up, but the gains continue to outweigh any losses. We’ve gained much much more than we’ve ever spent, in dollars or in energy, in being Charlie’s parents—-life with Charlie is, simply, priceless.

Saying “a lot happened” in the past two weeks kind of seems like an understatement.

• The Search for Certainty (or, why we’re going to the dentist at 3.15pm)
  An emergency dentist visit for Charlie prompts me to think about why parents so often try to find medical reasons for why something’s going on.
• David Kirby exonerates thimerosal
  Maybe not exactly but the day may be coming……
• Today Show Today on Autism and Vaccines
  I’m briefly interviewed on a feature about vaccines and Dr. Paul Offit.
• A “Crusade Against Autism”—-To What End?
  Do we really need such a “crusade”? . Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good.
• The Great Now What
  Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
• Positively Autistic on CBC News
  A recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.”
• If It’s Raining, There’s More Autism?
  Another study from Michael Waldman, who wrote an earlier paper about TV causing autism.
• Pop Pop Redux
  A post about the Mugen Pop Pop Blueberry written on Election Night,
• What does it mean to lose an autism diagnosis?
  Does losing a diagnosis mean that one is “cured” of autism?
• Sensory Differences: Research at IMFAR 2008
  Should sensory processing differences be part of the criteria for autism?
• Robert Kennedy, Jr., and the EPA?
  RFK Jr. is under consideration by President-Elect Barack Obama to head the EPA?—Not good if you care about science.
• “Strange” Play As a Marker for Autism in Infants?
  Unusual use of toys in infancy a clue to later autism, according to a stuy published in the October issue of Autism, the journal of the National Autistic Society.
• Adolescence: Not easy, but no need to end it
  Newt Gingrich argues that we should do away with adolescence.
• New Theory About Autism and Genetics
  A new theory argues that arents’ genes are “in competition.”
• Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
  Rod Welford, the education minister of Queensland (Australia), attributes the rise in autism prevalence in his state to parents in search of more services for their children—-not.
• Looks Like the Special Needs Mommy Wars Aren’t Over
  is Sarah Palin a potential leader for working mothers of special needs children?
• The Value of Money (the real stuff)
  Charlie learns to count money in the age of the ATM card.

So maybe it had to do with finding myself driving through a most unexpected (in New Jersey) October snowfall to take Charlie to a medical appointment (the dentist, to be more precise) on a cold mid-afternoon on Tuesday—-but as I glanced at him in the rear view mirror, a strong sense of déja-vu came into my mind. I was driving down a wide avenue on a snowy afternoon, gray sky, and strapped in the middle of the backseat, in his carseat, was my little boy and there was something wrong with or inside of him and no one seemed to know what, or to be able to say what, and not the kindly pediatrician we’d just seen for the nth time……

I was remembering the late late fall days of 1998. We were living in St. Paul, Minnesota, then (I was a newly hired classics professor here) and snow (flurries; storms) occurred regularly, and the days were rapidly shortening and the sky was gray and cold. The doctor talked about how Charlie was a likely candidate for ear tube surgery and how, if he didn’t start talking after that, “we’d have to see.”

If it were now—-when everybody, at least every parent of babies and young children—seems to have heard of autism (though not necessarily to know what it is), and when there are more tests to predict an autism diagnosis in infants, I think Charlie would have been diagnosed as a baby. At the very least, the “minor gross motor delay” that he was documented as having at the age of 10 months—he’d just started to roll over, wasn’t yet crawling or really pulling himself up, didn’t seem interested in moving from whatever spot on the floor where he found himself—-would probably have said to a pediatrician, some things need looking into. (Instead, Charlie’s then-pediatrician blamed me for catering too much to Charlie and so hindering his motor development.)

Everything was mystery and fog then, and a lot of blurry, and really intense, anxiety, I recall. It was hardly “easy” to learn that Charlie had autism, but it was, in many ways, a huge relief, and we started right in to learn about what we might do to help Charlie.

Flash forward to yesterday afternoon. Our low-slung green Saturn’s been long replaced by a black stationwagon and the little toddler in the car seat is now so tall he can’t stretch out all the way in the back seat. While Charlie had had a quite easy time at his last check-up in August, I always feel traces of nervousness taking him to the dentist, as older memories of really awful visits (four adults struggling to keep a wailing boy in the dentist chair, some years ago) are very fresh in my mind.

A hygienist led us to a room to a side and turned on a video of Disney’s Tarzan. Charlie got right into the chair and the whole time that he was sitting in it and the dentist and hygienist were requesting that he open his mouth and keep his hands down and poking in mirrors and other dental tools: For all this time, Charlie was at ease. The only time he got really agitated was when (while we waited for the dentist to examine him) the credits of Tarzan came on the screen. Charlie talked about Barney really loudly and anxiously and when I asked him if I should turn off the video, he cried out, “yes.” He kept poking at the buttons of the dentist’s tools and running his hand on the chair’s handles, both while we waited and when the dentist paused to talk to me. I asked if the seat could be raised and the dentist pushed a button: Another smile from Charlie.

Charlie had no cavities or sores or anything. Some new teeth (including a molar) are coming in.

And, while Charlie was getting his teeth examined, I was standing a foot away from the chair, holding onto his two Leapsters. He knew what to do, and he did it, thanks to a couple of years of practicing with his home therapists.

Jim teaches late in the Bronx on Tuesdays so it was Charlie and me for the rest of the day. We went to the pharmacy to pick up some things (including two sodas); practiced cello; and went swimming. Charlie was so excited to be at the pool that he ran towards the bleachers and ended up howling on one knee. I got him to sit down: No bleeding (thank goodness) and then he pulled off his shirt and jumped into the pool and good thing there was almost no one besides us in it, as he splashed quite a lot of water around with powerful kicks. After dinner, I asked Charlie to get out the dustbuster and he did, and then sat at the kitchen table to do three homework sheets. A shower and Charlie announced he wanted “bedtime” at quarter after 9.
Arguments are often made—as in this recent Washington Times op-ed by two fathers of autistic children, Michael O’Hanlon and Stuart Spelman—about why it’s first of all necessary to provide intensive educational (ABA in particular) teaching to autistic children as soon as possible, in the hope that they may “wind up mainstreamed in school” and have their “prospects for graduating from school, holding a job and having at least some real friendships” greatly increased, and not be such a “burden” to society as adults.

But any “agenda for autism” ought, I think, to take more of a long view, and be more hopeful about the long view. My son’s never been mainstreamed in school; we nonetheless consider his early years of education extremely beneficial. School graduation, a job, friendships; all these are up in the air. Charlie may well be more than adequately trained for more than a few jobs, but will there be employers who’d like to hire him? Will an employer—will we, as a society—be able to accept him as an individual who’s “different” and change ourselves, to make things better for him and others with his disability?

Charlie’s going to have a lot of needs as an adult, and he’s most likely going to need a lot of support, but I don’t think those are grounds for seeing him as a “burden.” It’s a chance for us to envision a communal response for those who need the support and the understanding. And without enough of these, and the belief that a child can do it—can sit in a dentist chair all on his own and smile about it—-things you never thought you’d see can become not only true, but part of the list of things you do any day, every day.

For the past two weeks something’s been up with Charlie’s teeth, or so we think. He’s been chewing the string on his sweatshirt and his shirt and poking a finger into his mouth (on the upper right side, I think) and just dabbing at some parts of his teeth with his toothbrush (still brushing the fronts). This has certainly been the Year of Losing Teeth; there’ve been more than a few times when, after a fretful, unsettled day, Charlie has been found with a bloody tooth in his fingers. After a check-up in August, Charlie’s dentist noted that he was right on schedule to be losing so many teeth. This latest instance of possible-pain-in-the-mouth has been going on for awhile so Monday afternoon I found myself calling the dentist’s office and felt most fortunate when the office found him a 3.15pm appointment.

It would be nice to know that there’s a simple, straightforward, medical explanation for those sudden bouts of yowling. We’ve also been wondering about the general angst of adolescence which has at least (so far, for Charlie) proved to be a very tiring experience in which one day he wakes up and not a single pair of pants fits. But if I know that it is something specific—-even (alas) a potential cavity, or a sore in the mouth, or who knows what—this can be kind of reassuring. These sorts of problems can be solved. They have a name, they can be pointed to, and sometimes there’s even a specific thing that can be applied to “make it right.”

Pediatrician Kathy Rivers found out that her youngest child, John (born in 1999), has a mitochondrial disease in July 2005. As noted in yesterday’s Connecticut Post via the Washington Post), John had been diagnosed with autism after his second birthday; he had “severe digestive problems, epilepsy and poor muscle tone and was so irritable that he screamed for hours.” Rivers sought testing after “a doctor treating one of [her] children suggested that the underlying cause of their illnesses might be genetic, possibly an inborn error of metabolism, of which there are hundreds” in 2003. Her oldest daughter had “migraines, extreme hyperactivity and strange vomiting episodes that left her disoriented” as a young child but was “developmentally advanced”; her second daughter, Emily, was born with “hydrops fetalis, which involves a buildup of fluid around vital organs including the heart” and diagnosed with “severe cerebral palsy.” She cannot speak or sit up and requires round-the-clock care.

Rivers, her oldest daughter, and her son have all been “found to have abnormally low levels of carnitine and other suggestive indicators” and now take a “mito cocktail that Rivers said has significantly reduced their symptoms.” John is no longer considered to be autistic. While it’s not for certain, it seems that two of Rivers’ children inherited a mitochondrial disorder from her; it’s also suggested that Rivers’ second daughter’s condition “may actually be the result of severe mitochondrial disease.”

It was back in March that a connection between autism and mitochondrial diseases when the case of Hannah Poling was made public. It was conceded in the US Court of Federal Claims that Hannah’s “‘pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots.’” Ever since, questions have been raised about how common mitochondrial diseases or dysfunction are in children with an autism diagnosis. Experts on mitochondrial disorders have been called to meet and there’s been some reported findings on a genetic link, and some concerns raised about one particular study about mitochondrial diseases and autism.

Unlike in Hannah Poling’s case, Kathy Rivers in the Connecticut Post article says that her son, who has been found to have a mitochondrial disease, is said to be no longer autistic, and to have benefited from a “mito cocktail.” And it sounds like the search for a correct diagnosis has indeed led to the right kind of treatment for Rivers’ children, and perhaps it’s this kind of impetus—this desire for certainty about what a child “has” and therefore about what can do about it—that fuels the drive to redefine autism as (as noted by a commenter yesterday) a “metabolic disorder,” as a medical and biological disorder and even a disease. Understand autism this way, and it makes it possible to conceive of particular remedies, whether or not these exist.

I’m hopeful about this afternoon’s dentist visit for Charlie, but I also get the feeling that we might find out something inconclusive, or something that we kind of suspected (”he’s got a molar coming in”). Am just going to have to keep making educated guesses and being ready to improvise when the time calls for it.

The high point of my Monday occurred around 8.45am. I was one of four adults standing around Charlie, who was reclining in a chair with a certain glint in his eye as he followed, and didn’t follow, our requests to “open your mouth” and “put your hands down” and “just a little longer!”

“Say aaahhh!” Charlie added his own request to himself and showed off his pearly whites—-the metaphor is very fitting, as Charlie had his six month dentist check-up yesterday morning and it was his best ever. And we barely practiced.

For the past two years, “going to the dentist” has been something we’ve been working on regularly with Charlie. His home ABA therapists taught him to keep his mouth open and his hands down (two very basic skills for a dentist appointment); about two and a half years ago, Charlie started brushing his own teeth a little (after Jim and I trying to coax him to let us run the toothbrush over a few teeth some nights), and he’s ever since been working on this a couple of times a day, at home and at school. For the past two visits, we asked an ABA therapist to be present; yesterday, it was back to Jim and me.

I’d said that I’d keep up “dentist practice” after Charlie’s home ABA program ended in February and, well, practice has been pretty sporadic. Charlie’s been brushing his teeth so well, and he’s lost a couple of teeth, and he brushes them every day still at school and rare was the time when I’d tell him to brush his teeth before bed and he refused to. A couple times at the beach I asked Charlie if he might lie down while I brushed his teeth (with a spiffy new electric toothbrush that Jim bought when the SpongeBob one gave out) and Charlie very obligingly opened his mouth. No big deal.

So on Sunday evening I made sure to pack Charlie’s new toothbrush and on Monday we got a very groggy boy out of bed and drove off to the dentist. This dentist’s office is quite elaborate, with a couple of chairs in an open space and some smaller rooms, video screens, gumball machines, balloons, lots of fish tanks, video games—-most of that doesn’t interest Charlie, though. What made the difference was the fact that Charlie has now seen this dentist a couple of times and the hygienist was the same as last time. Charlie was quite amenable to the instructions issued (sometimes by numerous people) and, while he needed multiple reminders to keep his hands down (so he didn’t push away the dentist with the brush and pick), he grinned instead of crying. The dentist used Charlie’s toothbrush and a flavorless mixture of pumice and paste; at first the dentist and I both held the toothbrush, and then I let go and the dentist did the work.

As I was standing beside Charlie, no image was stronger in my mind than one from five years ago. A shoeless Charlie was screaming, writhing, bite-attempting, wriggling, and pretty much struggling with every bit of strength he had as the dentist (another dentist) tried to use the electronic toothbrush and a hygienist and Jim and I held onto Charlie. It was a terrible experience and I think I waited over a year before attempting to take Charlie to the dentist afterwards.

This Monday morning, with his teeth declared “in great shape,” Charlie hopped out of the chair, accepted a blue balloon, and followed Jim out to the car while I scheduled another appointment for February.

Almost forgot to mention: No cavities.

Charlie was supposed to go the dentist yesterday morning but I had to reschedule his appointment to August as I was at the BlogHer conference. And I’ll confess, I felt a sense of (guilty?) relief at knowing that Charlie’s next date with the dentist chair would be postponed a bit more. We’ve been slack about practicing for the dentist with him lying on the bed, keeping his hands in his lap and his mouth open.

Charlie will be starting a dental program at school and I expect that will help, and then I read about a new technology that uses a tiny optical fiber to detect tooth decay as soon as it starts. As the July 23rd Science Daily noted, x-rays and visual observation are currently how tooth decay is detected; the decay has advanced to the point that drilling is needed to remove the decayed area—-hich is why I’ve felt very thankful that Charlie has yet to have a cavity—I do not think he would be able to handle that awake. It’s an effort enough to help him through the dentist picking and scraping out his teeth.

If decay is detected early enough via the new technology (which uses Raman spectroscopy), a “special mouthwash or fluoride varnish” might be used to repair the tooth. The technology might be available in five years, with the cost of developing the machines being potentially prohibitive. It takes 30 seconds to do a scan of a tooth and am not at all sure that Charlie would lie still for that long—-looks like we’ve got some time to practice.

Back to getting ready for the August appointment.

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.

Teeth-brushing has been a skill on Charlie’s IEP for the past three years—-prior to that, I brushed his teeth or, rather, worked on teaching him to open his mouth and to tolerate having a piece of plastic and wiry bristles on his tongue and teeth. I started using an electric toothbrush for Charlie when he was 4 years old, on the advice of a dentist who had two autistic children himself; the electric toothbrush got in some extra brushing, at a slightly faster rate. If it wasn’t a good night, we often skipped the tooth-brushing and sometimes a fairly quick brush of toothpaste to the surfaces of the teeth counted as “brushing teeth.”

Over time, Charlie learned to open his mouth and to let me brush his teeth. (It also helped that he started to like the taste of one particular type of toothpaste.) We keep his toothbrush, toothpaste, and cup in a plastic bin and, as of tonight, when I tell him to brush his teeth, he gets everything out, applies toothpaste to toothbrush, brushes bottom and top left and right and the front teeth (with a reminder from me), rinses off the toothbrush (sort of), and rinses out his mouth. And puts everything away. (Well, I usually have to rinse off the toothbrush again.)

Fortunately, or maybe amazingly, Charlie has yet to have a cavity. We’re not due back at the dentist for his 6-month check-up till July and I need to start practicing with him lying on his bed and holding his mouth open and keeping his hands in his lap. We take Charlie to a pediatric dental practice that (aside from being the nicest dental office I’ve ever seen—-even Nemo might have been happy in its deluxe fish tank, for a little while) specializes in special needs kids. Charlie has seen the same dentist for the past year. He’s been able to have his teeth checked, cleaned, and polished, but not yet to have an x-ray taken.

The April 29th Daily Trojan reports about the Special Patients Clinic at the USC School of Dentistry. The clinic has been open for twenty years and uses what it describes as a “team approach” with the dentist and assistants. All students at the USC dental school “receive one week’s worth of training in the Special Patients Clinic so that all graduating dentistry students are able to provide their services to those with special needs”—this sounds good, but I wonder if one week is enough? Perhaps it would be helpful for dental students to have the opportunity to work with more than a few special needs kids?

The Daily Trojan article indeed notes that many dentistry students continue to volunteer at the clinic after the week of training. Here’s what the Special Needs Clinic does to help make dental visits successful for autistic children:

Patients with autism often need dentists to spend a great deal of time reassuring them that they are safe so they will be cooperative, [Dr. Roseann Mulligan, associate dean for community health programs and professor at the School of Dentistry] said.

“You want to approach [autistic patients] where they can see you, see what you’re doing through your body language, voice and the things you say so they don’t feel threatened or frightened,” she said.

Because patients with autism also have a hard time dealing with unusual sights, smells or sounds, the treatment they receive at the Special Patients Clinic is catered to their needs.

“The Special Patients Clinic is on the first floor. It’s a very private setting. When people come in, their needs are very specialized and we want them to feel comfortable when coming with their family members so we have individual offices for them,” [Angelica Urquijo, director of public relations at the School of Dentistry] said.

Here in New Jersey the UMDNJ Autism Center has a dentist who specializes in autistic patients; hope that more dental schools might follow suit and/or make sure that families know if they have such clinics.

You can also contact the Special Care Dentistry Association for help in locating a dentist with experience with special needs patients.