Alex is entering 6th grade in the fall, and he will go to a new school.

It’s been six years since we toured special-needs schools. Back then, as Jill points out, we were looking for a kindergarten, and kindergarten classrooms for the autistic don’t differ much from kindergarten classrooms for the typically developing.

So this will be new. First stop was the school of Ron’s, Alex’s old terrific EI special-educator who’s now unit teacher of a special-needs site in a New York City public school.

I got to the meeting before Jill this morning; I rounded a corner and there Ron was. “There he is!” Ron said. A friend. He’s greyer (”More dignified,” I told him) but otherwise the same spark and firm handshake.

I did know  what to expect six years ago but now, I’m unsure what to look for in a school tours.  Here are the same tiled walls, same small bathrooms, same construction paper and marker artwork festooning the corridors.

Jill’s biggest jump start on this next-level search for Alex was a phrase she heard at another special-needs middle school. “We have,” the unit teacher of that school told her, “an expectation of college for our students.” We had never heard any educator say anything like that about Alex before, and it was like a strong new scent.

Still, with the budget crunch I foresaw late last year, I was hoping Alex’s current school could make an exception and perhaps keep him another year. Better to be with the people who’ve taken you from stop-and-stares to reciting “The Pledge of Allegiance” when the money dries up.

“Then Obama came through the funding,” Ron notes.

So it’s up we look. Suddenly I have to start from square one with people who’ve sometimes seen but not really met Alex, telling them all the clever cute stuff he does. How he tricked me out of the boys’ bedroom last night so he could get the cat off Ned’s bed. How he tricked Jill into taking her hand off a doorknob once, because he wanted to make a break for it. How he says clearly, “I want cookies!”

Ron’s school was similar to the one Alex is in now — some rocking, some stimming, wheelchairs parked in the halls. Classrooms had the velcro schedules (”sweeping”; “work time”; “clean up”), the looseleaf binders of simple sentences in big print. “Who wants to read me the recipe?” one teacher asked.

The classrooms were smaller. In one, colored cloth shaded the fluorescent overheads to cut down on distraction. In another, students used a computer to read and relate the life cycle of the butterfly. Science class. “That right, a chrysalis,” the teacher said. Ron shows us yet another loose leaf with a checklist of jobs the older students here perform at a local golf course: pick up trash, clean tables, stock storerooms.

We’re looking forward to Alex’s future. He could have one here.

“If there’s an opening,” Ron said.

(Great NY Times piece on the effect of swine flu-related school closings on special-needs parents.)

[Image: Credit: Valeriana Solaris (flickr.com)]

I know that when Aunt Julie (aka my sister) reads this, she’s going to say, “You want to WHAT? You want to inject your son with PARASITES?” Very important to read the all-cap words with just the right amount of amazement.

One day, I’m sure, they’ll have some more answers to autism’s causes and effective treatments. Right now, thought, it’s like we’re all bumping into each other in the same dark room, looking for the door to get out. Every now and then someone says, “Try the gluten-free, casein-free diet!” And you think, “Nah, that just doesn’t seem right to me.” And you’ve read from people who seem reliable and sensible to you that it’s not effective.

Then you bump into someone who says, “Helminthic therapy worked wonders for my son!” And you think, hmmm, didn’t I read something somewhere about worms being used to treat autoimmune diseases like MS and lupus? And then this turns up in your inbox (see the description for May 14), so you do a little digging and watch this video, which definitely reminds you of all the times your son has had a fever, and he acted (how to put this nicely?), well, less autistic.

Why does this unproven, unapproved, and untested therapy seem so appealing to me? (We’re not going to do it, because my favorite way to research something — quickly glance at a few web sites before moving onto items I bookmarked on eBay — indicates you have to buy worms from Thailand for thousands of dollars. THAT doesn’t make sense to me.

What does make sense is a hodgepodge of facts and figures. Not everything old is bad: look how leeches made their great comeback after being discredited for centuries. Now they’re used in microsurgery and reconstructive surgery.

Who remembers Phisohex? When I was a kid, mothers who wanted to be hypervigilant bought it and made their kids wash their hands with it. (Not my mother. She felt soap was perfectly fine.) I loved that acid green plastic bottle it came in. It smelled like the future: ultra clean, faintly plastic. Then all these reports started coming in about damage to newborn babies, who used to get bathed in it in hospitals, and Phisohex (aka hexacloraphene) was taken off the market. (It’s still available as a prescription.)

Recently I’ve heard about the low incidence of inflammatory bowel disease among children who grow up on farms and how vitamin D supplements may worsen autoimmune disease, another instance of thinking you can raise your level (when it’s low because of a disease) and then finding out this is actually counterproductive.

It would be embarrassing to admit I don’t really have a point. We’re not going to do helminthic therapy with Alex, but I wish we could. When I think of those farm kids growing up and never having Crohn’s Disease, when I think of leeches helping newly reattached limbs, it only makes me realize how very poorly understood many conditions are.  (It also makes me think of Mose, Dwight Schrute’s cousin on The Office, who makes infrequent appearances and seems sort of autistic to us. If all this is true, he’s an even more improbable character, since farm children grow up healthier than city children, if they’re not exposed to pesticides or dangerous farm-equipment-related accidents.)

We are still looking for the door. We’d even settle for being nearer the exit.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

So says Ellen Raphael, UK director of Sense About Science, regarding the “bad science tips” made by various celebrities and public figures (from Tom Cruise on psychiatry to, yes, President-Elect Barack Obama on vaccines and autism).

Here’s hoping that they’ll all take a New Year’s resolution to do a little fact-checking, or at least web-surfing, before offering those tips in 2009.

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.

Discussion continues about autism legislation, and is going to continue here in the US under a new administration. One piece of federal autism legislation that has been passed here is the 2006 Combating Autism Act (CAA), under which the Interagency Autism Coordinating Committee (IACC) was charged to create a Strategic Plan for research in autism spectrum disorders. (Regarding how the CAA was voted on and passed, and on its unfortunate name, go here.)

Over the past year-plus, the IACC has been developing a draft of the Strategic Plan. This draft was reviewed at the IACC’s November 21st meeting and, as review of the plan was not completed, the IACC met again on December 12th to continue review of the draft Strategic Plan and, per the agenda, to discuss cost estimates.

The IACC will be meeting next on January 14th (and go here for how to listen in virtually, via the web or conference call). This meeting will be to continue the review of the draft Strategic Plan, and to make budget recommendations and finalize the plan.  There’s a report about the December 12th meeting on the Autism Speaks website which notes that 38 research initiatives were approved, and that the budget for these will exceed the amounts authorized by the CAA in a certain period of years. The IACC Strategic Plan recommends that more than $1 billion be spent on research objectives.

I was able to listen to some but not to all of the December 12th meeting. Autism Speaks lists 10 of the 38 research objectives, which include (with my commentary on some initiatives and some emphases in italics)

Develop at least one new diagnostic instrument (briefer, less time intensive); [Interesting I think, recalling the two-day-plus process---ordeal---of having Charlie evaluated by a diagnostic team in Minneapolis; might something get missed, though, if the process is hurried up too much?]

Validate a panel of biomarkers that separately, or in combination of behavioral measures, accurately identify, one or more subtypes of children at risk for developing ASD; [At the November 21st and December 12th meetings, some members of the IACC brought up the need for such "biomarkers" repeatedly, as well as the notion of "subtypes" of children who be "at risk" or susceptible to being diagnosed with autism.]

Establish an international network of brain and other tissue acquisition sites with standardized protocols;

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical and developmental profiles of children, youths and adults with ASD change over time compared to typically developing individuals by 2020;

Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 sequencing studies to examine more than 50 candidate genes by 2011;

Study the effect of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines; [Again, the mention of "subtypes" of individuals with certain susceptibilities, such as the so-to-speak "subpopulation of mitochondrial autism."]

Determine design and feasibility of addressing different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups; [Yes, another mention of vaccines; this study being the long-called for study of various "health outcomes" in vaccinated vs. unvaccinated, and not "alternatively-vaccinated groups"---those vaccinated under an "alternate schedule"?]

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors by 2014; [Sounds like the UC Davis M.I.N.D. Institute MARBLES study.]

Standardize and validate at least 20 robust model systems (cellular and/or animal) that replicate features of ASD and will allow identification of specific molecular targets or neural circuits amenable to existing or new interventions; [But are "features of ASD" as seen in an animal (such as a mouse) model equivalent to features of ASD in human?]

Test the efficacy of 11 evidence-based services for people with ASD in community settings by 2015.[Would like to know about the what and where of these.]

And if the full $1 billion worth of research initiatives are not funded, what studies might be the first to be tabled…………….

MMR and autism have become indelibly linked in the public consciousness.

What about MMR and asthma?

A study in the December 1st American Journal of Epidemiology asks if there is an association between receiving the MMR vaccine and asthma in early childhood. 871,234 children were examined; researchers Anders Hviid and Mads Melbye looked at rates of hospitalization in those with asthma diagnoses and (for a subset of the cohort) the use of anti-asthma medications. Significantly larger numbers of children who had received the MMR vaccine were less often hospitalized with an asthma diagnosis and also used anti-asthma medication less than unvaccinated children. Researchers concluded that

these results are compatible not with an increased risk of asthma following MMR vaccination but rather with the hypothesis that MMR vaccination is associated with a reduced risk of asthma-like disease in young children.

Ben Goldacre describes the Hviid and Melbye paper as “significant” in a recent column. Goldacre writes the Bad Science website, a column of the same name for the Guardian, and recently published a book, Bad Science. Goldacre critiques the media for their unbalanced—-distorted, even—-coverage of scientific issues, and perhaps no more so than in regard to the MMR:

On Tuesday the Telegraph, the Independent, the Mirror, the Express, the Mail, and the Metro all reported that a coroner was hearing the case of a toddler who died after receiving the MMR vaccine, which the parents blamed for their loss. Toddler ‘died after MMR jab’ (Metro), ‘Healthy’ baby died after MMR jab (Independent), you know the headlines by now.

On Thursday the coroner announced his verdict: the vaccine played no part in this child’s death. So far, of the papers above, only the Telegraph has had the decency to cover the outcome. The Independent, the Mirror, the Express, the Mail, and the Metro have all decided that their readers are better off not knowing. Tick, tock.

Does it stop there? No. Amateur physicians have long enjoyed speculating that MMR and other vaccinations are somehow “harmful to the immune system” and responsible for the rise in conditions such as asthma and hay fever. Doubtless they must have been waiting some time for evidence to appear.

Goldacre also notes how studies refuting an MMR-autism link (by Afzal et al and D’Souza et al) have been “unanimously ignored by the media.”

And with people claiming links to vaccines and various, numerous diseases (Parkinson’s, Alzheimer’s, and on and on) left and right, it’s perhaps hardly surprising that the hypothesis—urban myth—of a vaccine-autism connection was ever formulated, and that it has lasted so long in the public consciousness, to the point that some (you know who) speak of autism as a “vaccine injury” and there are some treatments (you know which) that are based on the vaccine-autism hypothesis.

Indeed, what seems surprising, at this point, is that vaccines can have beneficial effects, as the Hviid/Melbye study shows. Indeed, it’s starting to seem that many have fotgotten that vaccines were created to improve people’s health, so far have we unfortunately come in talking about how they’re “harmful” and “unsafe.”

And with measles cases increasing, it’s time that we remember vaccines benefits, and that vaccines don’t cause autism.