Autism Vox

A Loose Tooth, Language and Vaccines

by Kristina Chew, PhD on June 30th, 2008

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.

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POSTED IN: Charlisms, Classics, Dentist, Drama, Family, Food and Diet, Health, Language, Parenting, Science, Vaccines