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.

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.

I would say I wrote a lot, and probably too much, about Jenny McCarthy in 2008 (and writing less about her, and about the whole vaccine-autism idea, is making its way higher and higher up onto my list of New Year’s resolutions).

Nonetheless, vaccines dominated discussions about autism in March in the wake of announcements about the case of Hannah Poling, whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” and led to symptoms of autism, as conceded by the U.S. Federal Court of Claims. A lot of debate followed about the Vaccine Court, to the point of general vaccine fixation.

Some mentions of birdsong and fish, and then, in the course of yet again saying it’ not the vaccines, some thoughts about why this is such a personal matter.

Also: Insurance coverage for autism “treatment” was regularly mentioned in 2008 and legislation put forward in many states: For what in particular? For how long?

And: Does your child know that she or he is autistic?

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?

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.

1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case. Today’s Guardian reports that health officials are seriously concerned about a possible epidemic of measles of between 30,000 - 100,000 cases. Measles has been spreading more easily because of the “relatively low uptake” of the MMR vaccine in the past decade:

The fall in uptake of MMR was triggered by now-discredited research claiming there was a link between the jab and autism.

Health officials in the UK are planning a mass vaccination program in some areas. The Daily Mail quotes Guy Hayhurst, consultant in public health at a local Primary Care Trust, as saying that they have identified 10,534 children who have no record of full MMR immunization.

Here in the US, measles cases are at their highest level in a decade.

It’s starting to seem more than unfortunate and regrettable that the theory of a connection between the MMR vaccine and autism—the so-called “leaky gut theory“—was proposed back in 1998 by Dr. Andrew Wakefield.

Among the books about autism at the public library in our town are this, this, and this—I’ve put in requests for a few other things.

To be very honest, we rarely visit our library. While there’s no lack for books of every sort at our house, Charlie’s not a reader. I was interested to read about a program called Project Inclusion, which is described in the November 26th Wausau Daily Herald (Wisconsin):

Project Inclusion’s overall goal is for the participating libraries to “take a proactive stance to address the literacy needs of children with disabilities and to make libraries meaningful and welcoming places for these children and their families.” Special emphasis was placed on adding materials especially for and about children on the autism spectrum.

These materials include a book called My Best Friend Will by fifth-grader Jamie Lowell and teacher Tara Tuchel; it’s about Jamie’s friendship with Will, who’s autistic and who she’s known since kindergarten. Other materials include DVDs like Know the Code and Skill Building Buddies; Emotes! a new book series designed to help children process and understand their emotions with Manga-style graphics; books from the publisher Orca and also a series called Steady Readers; and visual timers (perhaps like some of these?).

Which leads me to the question—what autism books are on the shelves of your library? Or what books would you like to see?

Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”? So argues Dr. Michael Fitzpatrick, author of another new book, Defeating Autism: A Damaging Delusion, argues in yesterday’s Spiked. As Fitzpatrick writes in his essay, The ghost of the ‘refrigerator mother’,

The ‘warrior mom’ is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism……
…….
A number of common themes link McCarthy’s ‘warrior moms’ with the spectre of the ‘refrigerator mother’ popularised by the child psychotherapist and author Bruno Bettelheim and others in the 1950s and 1960s. First, there is a common belief that autism has some environmental cause. Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.

Second, both concepts are linked to ‘conversion narratives’, quasi-religious experiences of personal transformation or redemption with deep roots in evangelical Christianity (see James T Fisher’s piece ‘No Search, No Subject? Autism and the American Conversion Narrative’, in Mark Osteen’s collection of essays, Autism and Representation). Then, cure was achieved through the intervention of a charismatic psychotherapist. Today, recovery is also the result of the ministry of another charismatic therapist, in the form of a DAN! practitioner prescribing biomedical therapies.

What links warrior mother and refrigerator mother is “feelings of guilt, anger and blame.” Besides the essay by Fisher (regularly referred to on this blog as Jim, my husband and a cultural historian in New York), Fitzpatrick also refers to another essay in Osteen’s collection, by University of Leeds professor Stuart Murray. Murray has written about the representation, and misrepresentation of autism, in contemporary culture in a recently published book. As Fitzpatrick notes:

Reflecting on the ‘outlandish, offensive misrepresentation of autism’ in Bruce Beresford’s Silent Fall and other films, Murray concludes that ‘overall, it is debatable how much progress has been made in cinematic depictions of autism since the foundational success of Rain Man’.

For Murray, there is a danger that ‘autism as metaphor’ floats free from the condition itself and the concept becomes so diffuse as to be meaningless. He links this metaphoric inflation of autism to the quest for environmental causes and the popular resonance of speculative notions such as that of an autism epidemic attributable to vaccines: ‘Possibly what unites all these scenarios is an idea of toxins, of the problem being some form of poison, be it physical and somatic or environmental.’ As he presciently observes, ‘at times, we seem to worry that we cause autism by living the wrong way’.

That we cause autism by living the wrong way. Is this sentiment not floating in the thoughts of parents who demand their right to choose vaccination for their children or not? Behind the green “Too Good” line of household cleaning products etc. that McCarthy has announced she is launching? Once, parents (and mothers in particular) were blamed for causing autism in their children because they (it was claimed) withheld their emotions from their children and in effect starved them of the opportunity for emotional attachment and development. Now, parents rather clamor to withhold vaccines from their children, in the misguided belief that doing so is for the sake and safety of their children; that they can do nothing less than to protect their children from the dreaded toxins in the environment—-the environment not being the emotionally frigid home environment caused by Bettelheim’s bad mothers, but the environment “out there” of polluted, woefully de-greened rocks and stones and trees?

By this account, McCarthy’s self-proclaimed transformation from MTV-starlet into anti-MMR/mercury/etc. advocate—a veritable “mission from God” as she herself has said—is not simply superficial, but “quasi” all the way. It’s a quasi-religious conversion, and, too, a quasi-conversion that still features reports of a stripper, er, autism pole and some reordering of the facts to allow for a proper Hollywoodish ending. In Jenny McCarthy’s book(s), her child has to “recover” from autism. Otherwise, she wouldn’t have a book.

Or, she might have to end her book with the kind of endings noted in another book that Fitzpatrick cites, Families of Adults with Autism: Stories and Advice for the Next Generation. As he notes,

A striking contrast is immediately apparent between these stories and those in the Warrior Mothers collection: whereas McCarthy focuses on tales of ‘recovery’ in young children, none of the accounts in Families of Adults with Autism tells of a diagnosis of autism ‘lost’ or withdrawn. Indeed, none of these adults is living independently and some accounts describe major enduring problems of self-injury or other challenging behaviours. This may be a result of selection – these stories largely come from parents of adults with high levels of need. It may also be a result of the inaccurate reporting of ‘recovery’ in the McCarthy cases. It is also striking that, although many of the contributors pay tribute to Rimland’s role as a campaigner, few give more than a token acknowledgement to the benefits of his biomedical treatments (such as Vitamin B6 and Magnesium, Dimethylglycine and Secretin) and none claims that such interventions have resulted in ‘recovery’.

All this is all the more notable because one of the editors of Families of Adults with Autism: Stories and Advice for the Next Generation is Jane Johnson, the Executive Director of Defeat Autism Now. She writes on the Defeat Autism Now website:

…..thanks to the insights and tenacity of the parents, and the determination, professionalism, and open-mindedness of our researchers and clinicians, we can say unequivocally at every Defeat Autism Now!® Conference: Autism is Treatable. Recovery is Possible! We know this to be true.

That “autism is treatable,” that “recovery is possible”: These are strong and fervently held beliefs by some practitioners and parents who, like McCarthy, have turned the story of their autistic child into a personal narrative of self-redemption. So long as the story of autism is told through the eyes of a parent in need of a conversion—of saving herself as much and even more than saving her child—so will the “ghost of the refrigerator mother” still haunt, and no “angry mob” of warrior moms will quite be able to banish her away.

Well, here’s a headline that hasn’t been heard so much of late, it seems:

Immunization rate among children rising (from MSNBC via WTHR TV)

According to a recent CDC survey, 77 percent of children have been fully vaccinated in the schedule of recommended vaccines, while less than 1 percent of children had received no vaccines by age 19 to 35 months. Vaccination rates among children are “at or near record levels, with at least 90 percent coverage for all but one of the individual vaccines in the recommended series for young children.” In Indiana, 94 percent of public schools and 68 percent of private schools have complete immunization data for the 2006-07 school year, an increase from last year.

Sue Goebel, a nurse with the Delaware County Health Department, notes that more parents are choosing to space out the vaccinations for their children, though there’s no data to suggest why this should be done. Says Goebel

“It gives moms a little more control”

—-it gives parents the feeling that they have some right to choose.

And the need to have that kind of choice, or feeling that you have that choice: For doctors, researchers, scientists, medical professionals to understand that need — that might, of parents needing to feel in control—it might make a big little difference.

There’s plenty to debate about regarding autism and the speech about special needs children that Vice Presidential candidate Sarah Palin is to give today in Pittsburgh —-her first about public policy—-should set off more. According to the Pittsburgh Post-Gazette, she’s to deliver the speech this morning at the morning at the Airport Marriott in Pittsburgh before an invited crowd of 350.

Update 13:00 EST: Here’s the text of Palin’s speech.Palin talks about “these beautiful children” and these are her three policy proposals: more choices for parents, fully funding IDEA, and efforts to reform and refocus. I just heard about some budget issues in my own school district that have reminded me of the need to fully fund IDEA and Palin’s noting of this is good to hear. IDEA, she notes, will be funded by “prioritizing” how money is spent, and especially funds that are “earmarks for political pet projects” such as “fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark.” “School choice” has been a central part of Senator John McCain’s educational policy throughout the campaign and Palin adapts the notion “school choice” to special needs students.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents’. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice — public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida’s McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective — because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

……..

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

The “options” Palin discusses here are only vaguely connected to the educational issues that face autistic children and their families. Being able to have one’s child attend the “school of one’s choice” is just one issue among many others that families have to consider in providing an appropriate education for their child: Training of teachers and staff, adequate teachers and staff, supervision, inclusion for special needs students with their non-classified peers are just a few that must be considered first and foremost.

Palin’s been quoted as saying that families with special needs children would “‘have a friend and an advocate in the White House’” were she and Senator John McCain to win the election; what, though, about adults with disabilities, who make up 90% of the those with disabilities in the US?

Another autism topic that is regularly the subject of heated debate is whether or not vaccines or something in vaccines can be linked to autism. But while more and more scientific studies refute a link, this particular topic is still regularly portrayed as a “debate” with two equally valid sides, and as a debate and even a disagreement that puts cold-hearted science-bound scientists against distraught parents of autistic children who are staunch and fearless advocates.

There’s a tendency, that is, to invoke a sort of symmetry principle in talking about the notion that vaccines or something in vaccines might be linked to autism. The adamantine pronouncements of scientists defending science itself are contrasted to the pained, highly emotional charges of parents trying to “get to the bottom” of whatever “made” a child to “become” autistic. An October 23rd Bergen Record article about a conference at Hackensack University Medical Center and hosted by the Deirdre Imus Environmental Center for Pediatric Oncology. Journalist David Kirby and the grandmother of an autistic child are contrasted with scientists and doctors.

Dr. Lawrence Rosen, a pediatrician and one of the speakers, told the audience that every family he treats is consumed by the issue.

“Ten years ago, I was having these discussions maybe once a week,” Rosen said “Now it’s every single family that comes in.”

While none of the speakers advocated an anti-vaccine perspective, Kirby said there are many questions that need to be resolved, adding that studying differences in the vaccinated and unvaccinated population should be a national priority.

The author of “Evidence of Harm: Mercury in Vaccines,” Kirby said he suspects that that there are children with a genetic predisposition that makes them vulnerable to an adverse reaction.

“It may be a very small percentage, but if they exist, we need to identify them, and I believe separate them out and possibly vaccinate them separately,” he said.

He also said his research showed that many of the autistic children were ill when they were vaccinated.

“You don’t vaccinate a sick child,” Kirby said. “It says so right on the label.”

Margaret Fisher, medical director of the Children’s Hospital at Monmouth Medical Center, said there are sound medical reasons for the early required immunizations.

Thos who regularly follow this topic have, too, regularly noted David Kirby’s reliance on rebranding and rhetoric to keep the notion of a vaccine-autism link alive. “‘You don’t vaccinate a sick child…..It says so right on the label’”: These short and snappy sound byte-ish phrases regularly lace the arguments of antivaccinationists, who call out “change the schedule!” and “green our vaccines.” And they are effective. As the Bergen Record notes, seemingly every family with young children is raising the question of whether or not to vaccinate.

Sound bytes stick in the mind. But surely we ought to make decisions about our children’s health based on something more substantial?