“Retarded” as been used three times in the past six months aloud in my office: “That’s retarded!” “He’s so retarded!” “I’m not a retard!” Each time, the word flew right out of a cubicle, clear and loud, for all to hear.

Anyone older than 5 could imagine many words that would cause quite a stir – not to mention a lawsuit – if they flew with such abandon right out of cubicles. “Retarded” and “retard” don’t seem to be among those words.

I Googled the word and turned up some 18 million hits (down from more than 19.1 million when I Googled it two years ago, so that’s progress). Hits have included a band with the name, “retarded animal babies,” and “movie criticism for the retarded”, which on Google scored right ahead of “Declaration on the Rights of Mentally Retarded Persons”, so that’s progress.

Jill and I often think of how Alex looks to other people: on the street, in restaurants, at the airport and on the bus and the subway. Many people still look at Alex. Sometimes Alex notices them, sometimes not. Sometimes he answers them in a somewhat appropriate way if they ask him a question; sometimes not. “That’s the way they communicate,” one woman said to me once in a McDonalds, meaning autistic people, about whom she seemed to know something; I somehow thought it a kind observation, though I was just guessing.

Alex is a nice-looking kid. Dark hair and eyes. A killer glance when he makes eye contact. Slim, downright skinny; it’d be hard for most people older than 5 to see him as any kind of threat.

Not like the time an “older” guy from a special-needs high school in Ned’s school building got into Ned’s first-grade classroom. “He ran in and sat on the teacher’s chair,” Ned recalls, adding that he himself hid under his desk until somebody came and fetched the young man. A few days after that incident, when Jill picked Ned up from school, Ned’s teacher said Ned was great when the guy came in, telling her not to be scared and that the guy was just “sensitive, like my brother.” I like that somebody else had to tell me this about Ned, and I especially like that S word.

The New York Times reported yesterday that marketers are showing increasing support for the disabled. Special Olympics is also taking pledges from visitors against hurtful language (“Spread the Word to End the Word”).

Starting January 5, 2009, voting for the 2008 Weblog Awards begins—–and this blog, which I’ve been writing since April of 2006, is among the finalists for best Medical/Health Issues Blog. I’m included in some good company, including Respectful Insolence—-The Differetial—-Junk Food Science—-Stirrup Queen.

Thanks to everyone for reading Autism Vox, writing in, sounding off—-it’s been a great year and onward into a new one (very very soon!).

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

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

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

It’s the countdown to the end of 2008 and here is some of what was going on at the beginning of the year:

The trial of Dr. Karen McCarron began on January 7th. On January 16th, McCarron was ruled guilty on all counts. On April 1st, she was sentenced to 36 years in prison for the May 13th suffocation of her then 3-year-old daughter, Katherine “Katie” McCarron.

January also saw the publication of further evidence refuting a link between vaccines and autism, with the publication in the Archives of General Psychiatry on the decline in thimerosal exposure and the continue increase of autism rates. A study in Pediatrics offered further proof that the vaccine-autism hypothesis is a hypothesis. The study showed that ethyl mercury is expelled faster from babies’ bodies than thought, and that there is “…..little chance for a progressive building up of the toxic metal.”

Nonetheless, a new legal drama, Eli Stone, based its first episode around a (highly fictional) case involving a child becoming autistic due to a vaccine. (And what celebrities have to say about science was a constant irritant throughout the year.)

Also, new research on genetics (on chromosome 16 and a test for autism) appeared in January, and throughout the year, with one scientist proposing a unified theory of autism.

And here’s autism on a list of CNN’s top 10 health issues of 2008, with more than a nod to the vaccine issue …… and from Mark Miller’s special needs blog, his list of the “top 10 moments” in disability policy and politics.

Your top 10 of 2008?

Seems a pity that, on seeing the words “top 10 unfounded health scares,” the first thing I thought about was……….vaccines and autism.

Many speak of a “debate” about an alleged vaccine-autism link and that there’s a “controversy” brewing here, but it’s a false controversy. 2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.

Sometimes, one starts to wonder, will this particular topic ever go away? How many studies will it take to convince those who believe so very much that there is a link, that there really isn’t one?

Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing, from pre-conception to pregnancy, from labor to birth, from infancy to the first birthday to toddlerhood, from preschool to elementary school to hitting the double digits (10 years old!) to (gasp) adolescence, is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.

And when one’s child is disabled, that need seems only to get compounded, as parents (myself included) seek “the best,” or the “most appropriate,” or the “highest quality” services, teachers, therapists, and programs for their child. As much as you know—as I know—that you and I did everything we should and could have done for our child, still that worry nags and lingers, that maybe you and I could have done something different. On the one hand, I’ve gotten pretty good at ignoring stares from strangers; on the other hand, there’s always an unspoken fear that maybe I am doing something wrong; that I’m a bad parent. Why else did those “autism is just another excuse for rotten parenting of rotten kids” remarks by Michael Savage and Denis Leary earlier this year strike such a note earlier this year?

What if we really are such bad parents; what if the likes of Savage and Leary are right?

And it’s that voice-in-the-back-one one’s mind, it’s that twinge, that “maybe” that has something to do with why, scientific evidence to the contrary, the notion that vaccines are somehow linked to autism just won’t die.

So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?

The American Council on Science and Health (ACSH) has issued a list of Top 10 Unfounded Health Scares of 2008 and take a wild guess about one item, specifically #8……. it involves autism and a word that starts with a ……………………..v.

Stumped?

Hint: Something involving “greening.”

Hint: Something involving a certain former MTV starlet.

Yeah, it’s something that gets brought up too much in discussions about autism, namely, the hypothesis, unsupported by the scientific evidence, that vaccines can be linked to autism.

Here’s the ACSH’s bottom line:

Not only are childhood vaccines safe, they are necessary to protect both individual children and the larger population from dangerous diseases. Despite the ever-present nature of this scare, parents should trust their children’s pediatricians and comply with the recommendation that every child be fully vaccinated by the age of two.

And how about a resolution in the new year to start moving on from this issue which has captivated so much of the attention and energy in discussions about autism?

So, you’re reaching for the eggnog or another piece of gingerbread and Great Uncle W says to you, “Now what is all this I hear about autism and vaccines?”

Or, some friendly step-relatives happens to end up next to you while the Christmas carol sheets are being handed out and, just as you’re trying to sneak out of the chair to sit by your child who already has his hands over your ears while your musician second cousin starts playing something from Jersey Boys on the piano to expressions of delight, said step-relative says, with a concerned smile, “Does he have this thing called sensitive-processor disorder too? A friend says her nephew has it.”

Now don’t get me wrong. After the initial incredulity that Charlie “had” something, my extended (and not small) family has made it a point to reach out and include Charlie. Considering that a frequent family activity is “getting together in someone’s house or an economically priced restaurant in Oakland Chinatown,” and a certain amount of conversation is about the food we ate last time we met, the food we’re eating, and the food we’re going to eat (say, when we get together for dinner……..that night), Charlie is quite in his element and certainly knows how to work the lazy Susan.

Lest eating numerous Chinese meals (ok, sometimes we “go American” and eat sandwiches) in various settings with various combinations of relatives seems boring and repetitive to you, I can see how, if we lived in California, this would provide Charlie with constant opportunities for interactions with the same (more or less) people. I was a picky eater as a child, so I suspect my family watches Charlie’s hearty eating with some equally hearty approval (and I think he’s started on another growth spurt—-he spent most of a snow day last Friday and the weekend sleeping, and I just realized the sleeves of his coat ride up when he raises his arms). It’s true, Charlie doesn’t run off to hang with my cousins’ kids, but he does like to be in the same room or nearby them, with Jim or me or my parents around.

Mostly my relatives like to hear what’s going for Charlie at school and someone inevitably says that “X who they know has a child with autism,” and various therapies get listed. One side of my family being quite up-to-date regarding technology and TV, should anyone mention that December 11th The Doctors episode on which DAN! doctor Jay Gordon I am grateful to have checked in with Orac at Respectful Insolence’s thorough working over of supernova stupidity:

What’s really annoying about this episode is that, mixed in with some accurate information is a bunch of infuriating false “balance” and Dr. Gordon’s antivaccine stylings. The parents (Dan and Lori) featured in the segment have seven children, with another one on the way, and four of their children are autistic. I don’t know about you, but to me that fact alone would strongly suggest a genetic component, but naturally these parents blame vaccines for their children’s autism.

As Orac concludes, “the one thing that The Doctors demonstrates beyond a shadow of a doubt is that having physicians involved in the making of a show about medicine and medical controversies is no guarantee that the resulting show will be science-based”—-indeed, the resulting show will be TV medicine or science, Hollywood style, and, as noted when the comedic legal drama Eli Stone aired back in January of this year, the whole “child becomes autistic after receiving a vaccine and some professional [legal in Eli Stone; medical in The Doctors] proves there’s gotta be a link” gambit can fit very well in the allotted hour, with some commercial breaks allowed for. The idea that vaccines can be linked to autism is readily explained as a simple matter of cause and effect, plus you can insert, to good effect, a few shots of those needles and those mysterious vials that have had who knows what injected into them by some unknowing pharm tech.

So yes, I am feeling prepared to address any “but what about those vaccine” questions—-and the sensory stuff—-and, if no one’s rushing off to take a turn at Guitar Hero, am glad to speak to genetics and the fact that autism really is a family thing.