Next Wednesday, on December 10, from 2:00 p.m. to 5:30 p.m. ET, there will be a meeting of the Services Subcommittee of the Interagency Autism Coordinating Committee (IACC), to review public comments received in response to a completed Request for Information. When I attended the November 21st IACC meeting, a good part of the agenda was devoted to discussing services and the many needs of adults.

You can view the meeting agenda and also see who is on the committee. The meeting is being held here:

National Institutes of Health
9000 Rockville Pike
Building 31
Conference Room 7
Bethesda, MD 20852

You can attend the meeting virtually via a webinar; to register and access it, go here:

https://www1.gotomeeting.com/register/563207085

Or, to attend via a conference call, here’s the numbers:

Dial-in number: 888-455-2920
Access code: 3857872

And, it’s noted that:

There may be an opportunity for members of the public to submit written comments during the meeting through the web presentation tool. Submitted comments will be reviewed after the meeting. If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

I’m on the train to Washington D.C., to attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research. There’s a list of the federal and non-federal members of the IACC here; the committee has been overseeing the writing of the Strategic Plan for Autism Spectrum Disorders (ASD) Research. Over the past year, there have been numerous calls for input from “stakeholders”—from anyone concerned about autism—and other meetings of the IACC and of workgroups concerning various parts of the plan.

I went to an IACC meeting just about a year ago and read this statement. While I wrote up and sent in a statement for today’s meeting, there apparently is not space on the agenda for me to read it at the meeting, though I was told that copies of my statement will be included in folders given to the members of the committee. I emphasized the need to focus on research that can directly affect and improve the lives of autistic individuals here, now and today, and on the need to provide education and services for autistic individuals in the community, and that integration and inclusion are not goals to be aimed at, but simply essential.

Time and again in the past years raising Charlie, we’ve more than once heard the suggestion (sometimes a very strongly put suggestion) that Charlie be sent “out,” as in to an “out of district” school placement, where he would be very much outside the community, the people, that he lives in. While we have in the past been interested in Charlie attending a private autism school where all the teaching might be geared towards kids with his sorts of learning profile, I really think that he would lose something if he were not in daily (if limited) contact with kids his age, in a setting that kids his age are generally in.

At the moment, this setting is middle school. I visited Charlie’s classroom on Monday: It’s a well-ordered environment. Charlie uses a schedule broken down into a series of small binders throughout the day. There’s photos, small phrases, and Language Master cards velcro’d to the pages, and he knows to get the different binders and work through the pages.

The physical environment of his classroom is more, what shall I say, institutional-seeming than last year—he’s in a lower-ceilinged room with windows that look out onto a hallway, across from a small courtyard—generally, it’s the whole middle school (with some 1400 students) that seems more “institutional-seeming.” It’s a huge 70s-ish building with lots of shades of brown, all on one level, and without the aesthetic attributes of the town’s high school and elementary schools. It is, indeed, a middle school, playgroundless and the first step towards some kind of adulthood not only for Charlie and his three classmates, but also for every other student at the school. There was a fire drill when I visited. The 1400 students plus many, many teachers and staff all streamed out and stood in neatly ordered rows before streaming back in. Uncertainty, simple bafflement, the wish to run and loll about on the grass, yawns—-these were all to be seen in many of the students.

I thought of Charlie’s struggle to accommodate himself to getting up earlier and to a much earlier start to his school day. Seeing the while middle school out on the grass together, dutifully and somberly lined in rows for a fire drill, many pretending not to shiver in short sleeves though they’d been told to get their coats, it occurred to me that Charlie’s not alone in feeling a sort of loss and puzzlement at finding himself in a bigger setting, and with so many more expectations and demands placed on him. And yet—-

And yet, back when I was just starting to teach (before Charlie was born), I taught Latin at a private school in St. Louis, Missouri. I taught both middle and high school students and was surprised to discover that that 7th and 8th graders seemed so often the most eager to learn, the most determined to know every miniscule thing about third declension i-stem adjectives; the most curious, intellectually and otherwise. And, the most uncertain, insecure, and defiantly confused about anything social (and, of course, involving the opposite sex).

Charlie’s different in ways small and profound from his peers. He doesn’t have homeroom as he stays in one classroom; he doesn’t have science or social studies and he’s not in his first year of learning a foreign language. But he is one among many other kids in our town; he’s not hidden away, and he’s not at all forgotten.

And I guess it’s to make sure that he and kids and individuals like him are never forgotten, segregated, or give second or worse-class treatment, that I took the 5.46am train to Washington, D.C.

Go here to see the agenda for the November 21st meeting.

Over at the On Special Education blog at EdWeek, Christina Samuels describes a seeming “perfect storm’ of education issues” that the District of Columbia school system faces:

……not enough programs for students with disabilities, some demoralized staff, and a class-action lawsuit on behalf of underserved students looming over everything. The district spends millions of dollars a year on out-of-district placements for students with disabilities and is struggling to bring that figure down.

Now, Richard Nyankori, the acting deputy chancellor for special education, has said what a lot of people already believe to be true: some staff members aren’t paying attention to the requirements of the Individuals with Disabilities Act because they just don’t care.

As Samuels notes, “not everyone agrees with Nyankori’s assessment of the situation,” including Candi Peterson, a school social worker and a teacher union official (who blogs at The Washington Teacher).

Still, the situation that Samuels describes reminds me how much we value IDEA, and why we need the law.

On Sunday I posted about whether or not Jenny Mccarthy’s son is recovered or not.

In a transcript of McCarthy’s June 6 interview about her “autism crusade,” it’s as hard as ever to get the facts straight about what her son Evan has: Perhaps it is indeed not clear to either McCarthy or the various medical and other professionals who have evaluated her son.

Here’s what McCarthy said in answer to questions by guest host Jamie Kolby and by Greta van Susteren:

VAN SUSTEREN: And in the spectrum, where is Evan?

MCCARTHY: Evan was undiagnosed with autism.

VAN SUSTEREN: So if I met Evan?

MCCARTHY: You would never know in a million years.

VAN SUSTEREN: So how does it manifest itself?

MCCARTHY: Autism?

VAN SUSTEREN: No, Evan’s autism.

MCCARTHY: It doesn’t.

VAN SUSTEREN: I wouldn’t know Evan is autistic?

MCCARTHY: No, when I take him to neurologists - this is another - there’s like two controversies with autism. It’s how they got there and the possibility of recovery. Recovery, the real thing, it’s not a cure, a really great analogy I give is autism is like getting hit by a bus. You can’t be cured but you can recover all those lost things that you once had. [Other examples of the "autism is like a car accident" are here and here.]

VAN SUSTEREN: Relearn the skills?

MCCARTHY: Relearn but also you might have a booboo here and there but Evan, once I looked into how this generation of moms have been healing lots of their kids, there’s thousands and thousands of recovery stories. I follow those people and the reason why the medical community doesn’t support is because us moms aren’t treating autism, we are treating a vaccine injury. And when you treat the vaccine injury, the autism goes away, minimizes or disappears. When Evan goes to a neurologist now because he still has seizures, the main thing they keep saying to me is he never had autism to begin with. He never had autism. [Compare this post, So is this autism?.]

Well, really, he was diagnosed by UCLA and the California state where he had in home therapy for 40 hours a week for an entire year. You’re damn right this kid had autism. This kid had no language, two to three words, and now he’s completely conversational because I detoxed his body, I did the diet, all the things the medical community doesn’t support. [So autism is "no language" and nor being "conversational"?]

Emphases are mine.

Some will remember last week for June 4th and “Green Our Vaccines” rally.

I remember it as Charlie’s last full week of elementary school.

• Low Birth Weight and Preterm Birth: Autism Risk Factors?
  A new study in Pediatrics links low birth weight (less than 5.5 pounds) and preterm birth to an increased risk for autism in infants by about twofold, and more so in girls than in boys.
• “The issue here for me is did our teacher behave as alleged?”
  An editorial in the June 3rd Palm Beach Post about 5-year-old Alex Barton being voted out of his kindergarten class quotes Michael Lannon, Superintendent of Port St. Lucie, along with more details from the police report.
• An Argument about “Difference” and “Deviance”
  Professor Stanley Fish of Florida International University, in Miami and dean emeritus of the College of Liberal Arts and Sciences at the University of Illinois at Chicago, opens a post about “norms and deviations” on his New York Times blog by citing a letter published in Time magazine.
• How Invisible is Autism in Women?
  Is female “invisibility” in the autistic spectrum a feminist issue?
• The Rallying of the Green
  The “green vaccine thing” is but another instance of rebranding.
• No Wonder It’s So Expensive to Be a Parent
  The average mother of a child under 15 spends more on fast food per year than on books, music, movies, and video games combined, the June 2nd New York Times reports.
• Change the Schedule!
  “Change the schedule!” That was apparently the rallying cry of the June 4th Green Our Vaccines rally.
• Boy Dies During Nap, Possibly From Secondary Drowning
  10-year-old Johnny Jackson died last week while taking a nap in his house from “asphyxiation due to drowning”—-according to today’s ABC News, Johnny may have died from secondary drowning.
• Needed: Good Communication Between Parents and Schools
  It’s always struck me as a sad irony that, when it comes to parents trying to make sure that an autistic child succeeds at school, communication can pose some of the greatest obstacles. Too often I’ve found it just very hard to let teachers, therapists, and staff know what is going on with Charlie and what our goals are, and I know the reverse has occurred.
• 1500
  That’s journalist Arthur Allen’s estimate of how many people were at Wednesday’s Green Our Vaccines rally; a bit smaller of a number than the “close to 10,000” elsewhere noted.
• Recovered or Not?
  In article after article about the “Green Our Vaccines” rally, it is said that that her son is “autistic” and “has autism”—contrary to what was said at the publication of her book last September.

When Jenny McCarthy’s book Louder Than Words: A Mother’s Journey in Healing Autism was published last September, all the talk was that she had “recovered” her son from autism.

In article after article about the “Green Our Vaccines” rally, it is said that that her son is “autistic” and “has autism.”

Just trying to get the facts straight.

1500.

That’s journalist Arthur Allen’s estimate of how many people were at Wednesday’s Green Our Vaccines rally; a bit smaller of a number than the “close to 10,000” elsewhere noted.

Writing in today’s Washington Independent, Allen—-who’s won a bit more than the ire of the anti/pro-safe - vaccine advocates/crowd with his book, Vaccine: The Controversial Story of Medicine’s Greatest Lifesaver—-reports about what he saw and heard at the rally:

A mother who noted that, without the internet, she would “‘probably not’” have linked her son’s “regressive autism” to the hypothesis that vaccines can be linked to autism.

An almost-meeting with Wendy Fournier of the National Autism Association which led to Allen briefly (by his own admission) losing it and a rally monitor immediately calling for the cops. (Are only people who agree with the premises of the rally organizers allowed to be at the rally?) (Funny but another journalist, and the father of an autistic child, got himself expelled from a recent autism conference in Chicago after he asked a certain question.)

A cordial conversation with Age of Autism editor Dan Olmsted.

The “green-clad” crowd going “wild” when Jenny McCarthy and Jim Carrey appeared and were proclaimed “Access Hollywood’s green couple of the week”; Carrey seems to have done most of the talking with phrases like “‘How dumb does the CDC think we are?’”. (In light of this movie starring Carrey, one can only hear a double-entendre in that phrase.)

What was said about McCarthy’s pediatrician, Dr. Jay Gordon, who is a “celebrated, or notorious, I guess, Santa Monica doctor because of his outspoken vaccine skepticism”—Dr. Gordon is now raising alarm about aluminum in vaccines. (So the next rallying cry will be “de-foil our vaccines?)

Among much else, Allen has written about why there’s no dispelling the myths that vaccines cause autism and many will charge that his reporting about the rally is “biased” and that he has grossly undercounted how many people were there. But anyone who’s followed the exchanges about vaccines and autism (such as this and this) knows that it is a “debate” of extremes and opposing opinions, and opposing views of science, evidence, and authority. And one strongly suspects that, until people stop associating autism with vaccines, the great divide in beliefs—1500; 10,000—will continue.

“Change the schedule!” This appears to be the rallying cry of today’s Green Our Vaccines rally. CBS news quotes comedian Jim Carrey:

Led by actors Jenny McCarthy and Jim Carrey, they’re marching against the medical establishment that says there’s no evidence vaccines cause autism, CBS News medical correspondent Dr. Jon LaPook reports.

“We want to send the message to the CDC and our federal government that vaccinations schedules are not one size fits all for all children and that each child is different,” said concerned parent Michael Williamson.

Their new battle cry: Spread out the vaccine schedule.

“Thirty-six vaccines in the first few years of the life are too many too soon,” Carrey said.

I’ve been wondering what in the world “green our vaccines” meant and I guess that’s as good of an answer as we’ll be getting. It’s not as simple as being “anti-vaccine” (there’s even a “NO GREEN VACCINE” faction, as evinced by this Yahoo group). Today’s Jenny ‘n’ Jim led rally was about vaccine safety and (as revealed by that new battle cry), the schedule. Vaccine safety is said to mean nothing more and less than “change the schedule”—”not so many” at one time—-”spread ‘em out.”

(Which would mean more trips to the doctor’s office for new moms and more office visit co-pays. But I digress.)

This is a rather subtle distinction, one might say, and more popular sorts of media sources (like this) have boiled the point of the rally down to “change” and “aiming to eliminate toxins from children’s vaccines”; one wonders at how effectively the rally got its point across. As for the new battle cry of “change the schedule!”: It does not have quite the inflammatory ring of “vaccines = autism”; it seems, if I may say so, rather watered down and, well, safe. Not only is “vaccine safety” the word at the rally, but “talking safe about vaccines.”

And a question: Seeing as the theme of the rally was “greening vaccines”—-making vaccines cleaner, better for the environment, or some “green-thinking” sort of thing—-what was with those shirts, with that kelly green—???—color? It’s not exactly a “natural” color, but maybe the product of some chemical additives. Last time I saw so much of this shade was at the Honan family reunion of Jim’s mother’s relatives……..

More on the Green Our Vaccines rally here.

A couple of years while teaching this poem to an English Literature 101 class at a mid-sized university in New Jersey (it’s not where I teach now), I asked my class what “green” signifies. While we live in New Jersey, I grew up in California (think Berkeley not Los Angeles) and — having started to recycle in the 4th grade, lived through a couple of droughts and a gas shortage, and developed a preference for whole grains in elementary school — “green” to me means nature, plants, leaves, grass, stuff that grows in the ground naturally.

So I was honestly crestfallen when several students answered my question about “the meaning of green” with one word:

Money. At the mention of nature — trees etc. — they shrugged. (I sighed.)

So you’d perhaps think that I’d feel some relief towards the notion of “greening our vaccines,” the name of the rally today, June 4th, in Washington, D.C., with Jenny McCarthy and Jim Carrey, described as a “celeb couple” leading the rally “to raise awareness about autism”—I thought this was a rally about vaccines?

I’m not too clear about what “green vaccines” are but—-based on phrases like “how green is my dream kitchen” and (more generally) “how to go green,” “green thinking” and, too, the greening of the automobile — it would seem that “green vaccines” would be something like “environmentally safe vaccines.” As in non-toxic, non-mercury/thimerosal/non-anything-dangerous containing vaccines of the sort touted by those who call themselves not “antivaxxers” but “pro-vaccine-safety”-ists.

But this “green vaccine thing” is but another instance of rebranding, as in the various different names that Evidence of Harm author David Kirby regularly engages in, to find new biological ways of describing “autism.” Orac has taken a good look about the green- and natural-ness of vaccines (and been called an “idiot” in the very first comment). He also offers a small gallery of signs (”Vaccines = Autism EvidenceofHarm.org“), as well as a selection of signs from the “Power of Truth” rally three years ago.

Starting from Orac’s look at both signage and slogans (and semantics), a few more thoughts on the rallying of the green:

Somwhere in the not too distant past, those who were the “antivaxxers” or “anti-vaccine advocates” started to chararacterize themselves as “pro-vaccine-safety advocates.” As Mike Stanton notes, the organizers of the Green Our Vaccines rally sound like their old anti-vaccine selves. But “pro” has positive overtones: Better to be for something and who can object to making things—vaccines—safe? (In the abortion debate, it’s “pro-choice” and “pro-life”—-who wants to be “anti-life” or “anti-choice”?)

Regarding the “green” theme, very prominently displayed on the logo for the rally. The associations of green—aside from my “nature” one and the “money” response of my former students—also include, of course, green stop lights which mean “go.” The notion of green vaccines suggests that those who espouse these are moving forward and being progressive and pro-active. Certainly “green our vaccines” has a much friendlier ring to it than “mercury poisoning” (suggestive of being poisoned by something burning and volatile); the phrase also suggests that, just as we are greening kitchens, cleaning products, clothing, cars, out very way so thinking, etc., so is there a movement to do so for vaccines.

I’m not sure today’s rally is going to bring more clarity to all of this. I’ve been reading a book, Do Vaccines Cause That?: A Guide For Evaluating Vaccine Safety Concerns by Martin Myers, M.D and Diego Pineda, M.S. that has been helpful in providing some basic clarifications about the science and history behind vaccines and about what is in vaccines. One example is the definitions of “side effect” and “adverse effect” (p. 25). These are key terms in discussions about vaccines and autism; proponents of the hypothesis that vaccines or something in vaccines can be linked to autism hone in on such unintended effects as one of the dangers of vaccines. (This article contains one such story.) However, as Dr. Myers and Pineda write:

Side effect (or Side reaction) are symptoms and signs that occur either locally—such as pain or redness at the injection site—or in other parts of the body—such as headache or fever—because of a particular immunization or dose of a drug. A mild measles-like rash after measles vaccine is fairly common, for example. Serious, life-threatening allergic reactions can be side effects of vaccines, but occur very rarely.
…….
An adverse event is something quite different from a side effect. A side effect is “caused by” the vaccine, whereas an adverse event is something that occurred at about the time. a vaccine was given, but which could have been caused by the vaccine or could have just occurred at that time by coincidence. Although fever is a side effect of many vaccines, not all occurrences of fever after vaccines are caused by the vaccine. This book discusses how scientists determine whether an adverse event is actually a side effect—that is, caused by the vaccine. Thus, when an adverse event occurs after vaccination, it needs to be determined whether the adverse event was caused by the vaccine or whether it was just coincidental—that is, it was going to happen anyway. (p. 25-6)

An “adverse effect” from a vaccine is not something that is “undesirable” or “contrary to expectations”; the term has a specific meaning, as noted above. Do Vaccines Cause That? is a “user-friendly guide” for parents concerned about vaccine safety and it would seem to be a book that a “vaccine greener” might wish to consult. There are numerous other definitions of green and it’s hard to say what a rally about vaccine safety—vaccine awareness, if you will—has to do with the schools, services, and supports that autistic children and autistic individuals need to succeed.

Autism is not about vaccines, it’s about people.

With another round of vaccine court going on this week, the question of whether there’s a link between vaccines and autism is again getting a lot of discussion. Here’s five past posts on this blog  that suggest how this one hypothesis about the cause of autism has become entwined in debates about research, the understanding of what autism is, and much more. Much, much more.

1. The Vaccine-Autism Urban Myth (February 6, 2007)
2. Myth, Science, and a Trial: Vaccines and Autism (June 30, 2007)
3. Thoughts on Autism Research (July 2, 2007)
4. The New McCarthyism (October 28, 2007)
5. The Case of Hannah Poling (March 6, 2008)