On the edge of your seat watching the election results? Need a little distraction of a sensory type to keep your fingers busy with something else besides hitting the refresh button on your computer to see who’s in the lead? Bubble wrap is good stuff for the sensory-sensitive and then there’s the Mugen Pop Pop Blueberry, a miniature version of those plastic popping sheets. But can it replicate the real bubble wrap experience? And would the Mugen be a good fidget to clip onto Charlie’s bookbag?

Excuse me, I have to go back to checking who’s got the most electoral votes……..

Cure or acceptance?

Does one strive to do everything one can to cure, heal, recover a child from autism with the goal of the child “losing” her or his diagnosis? Or, does one learn to accept that one’s child is different, disabled, autistic?

Parents and others in the autism community tend to align themselves with one “side” or the other, and whether one puts oneself in the “cure” camp or the “acceptance” one tends to determine the types of therapies and treatments that one pursues. Be a “curebie” and you’re an annual attendee at DAN! conferences and (whether or not your bank account can afford it) are booking a flight to be in DC for the June 4th Green Our Vaccines rally sponsored by organizations with names such as Talk About Curing Autism, the National Autism Association, and others who state that vaccines or something such as thimerosal in vaccines causes autism. And, it may well also be the case that you’ve a strong belief in intensive therapy and early intervention (most recently espoused by the author of a new book) and, perhaps, in Applied Behavior Analysis or ABA.

Conversely, say that you just plain and simple accept your child being autistic, disabled, different. You don’t see every single self-stimulatory behavior as a problem that needs to be corrected into something “appropriate”; over time, I’ve learned that Charlie’s humming and pacing and tapping are his ways to comfort himself, due to an overworked sensory system and to his anxiety.

I wrote “learned” because, until Charlie was about five years old, I thought it imperative that he only “display appropriate behaviors” in public and generally as much as possible. We did intensive ABA (40 hours/week) for a year and a half, then preschool with an aide and some 20 hours of ABA along with speech therapy and occupational therapy. Charlie was four when he started special ed preschool; by this time, we had moved back to New Jersey from the Midwest. Charlie has remained in special ed classes and will for the rest of his education. He’s always had weekly speech and OT sessions. His hours of home ABA have fluctuated over the years (he currently is not receiving any) and we’ve tried some social skills groups, though it’s been hard to find one with children his age who have the same level of speech skills.

We take Charlie to all kinds of places—most recently Maryhouse, one of the two Catholic Worker houses in lower Manhattan, for the Friday night meeting, though Charlie ran in and out the front door after seeing a cat in the entranceway. Charlie does sometimes verbalize at a high volume (last Saturday with high-pitched shrieks) and my response has evolved. Once I sought to “ignore” these; now I understand them as communicative efforts, and try to in turn communicate that I’m glad Charlie’s telling me something and that he doesn’t feel right about something.

Perhaps, over time, a parent learns to perform a kind of dance between encouraging a child to learn and knowing when to let a child be as he or she is? Perhaps, whatever gets said about “cure” and “recovery,” at some point you think, difference is difference. I’d rather Charlie not screech in public, but I am glad that he’s got that desire and drive to express himself.

There’s hope for every child who has autism, writes Jean Marino in the April 25th Buffalo News and I completely agree, though Marino describes autism in terms I prefer not to use. Marino’s 13-year-old son Zachary has autism, which she describes as “kidnapping alarming numbers of children and holding them captive” and as an “invisible enemy” and a “blanketing world”—-as something that takes away a child. Marino says she found hope by starting to do things to help her son (she lists supplements, special diets, treatments, and therapies, without going into specifics) and writes this of her son today, and of how she negotiates “the dance” of trying to change a child, and of letting be:

Eventually, Zachary stepped out of his world and entered ours, however, he always has one foot still secure and planted in his. That’s OK. We have great hope for his future. Through the years, Zachary has met every obstacle and has overcome each and every one. He is now 13 and continues to improve every day.

Journalist Barbara Fischkin’s son Daniel Mulvaney was, as she writes in the April 25th Huffington Post, just diagnosed with autism as “Bill [Clinton] was in the final lap of his presidential run.” Fischkin writes that “autism is decimating a generation of children” and that autism is “an epidemic and in comparison it is making polio look like a sore throat.” Again, these aren’t the sort of ways that I see the increase in the prevalence rate of autism and I have a lot of hesitations about comparing autism to other medical disorders. Fischkin, presuming competence, writes this of her son now:

Dan still does not speak although he now gets out a few guttural utterances, all of which thrill us to no end. He does sleep better than he used to though and was not awake when the word autism was uttered on Tuesday night.

In the morning I told him what Hillary Clinton had said.

As is often the case, he did not reply or react.

I know though, the way mothers know things, that he is thinking about tomorrow. About a speech that could lead to action.

Charlie hasn’t seen too much of the presidential candidates (no TV here….) though Jim and I have been talking plenty about them. Charlie tends to be drawn to people who look like him (I have wondered if one reason that he is so very fond of his current class is that three out of the five students in it are, Charlie included, Asian American).

We’ve got a lot of hope around here.

Considering how many pressing issues there are to talk regarding children and adults—education, employment, housing, to name a very few—-why do we keep getting stuck talking about the hypothetical claim of a link between vaccines and autism?

Here’s some thoughts towards why the whole issue seems to have devolved into something approaching paranoia, not to mention pander for politicians (and all the more after what two of the presidential candidates have said about autism, vaccines, and the “autism epidemic”).

In a recent essay entitled The Paranoid Style in American Science, Daniel Engbar, associate editor at Slate, writes about critics of mainstream science “whose skepticism has taken on the trappings of conspiracy theory.” Engbar is specifically writing in reference to the just-released Ben Stein documentary entitled Expelled: No Intelligence Allowed which claims that American educators and scientists who believe that there is evidence of intelligent design in nature are being persecuted for their beliefs. (The National Center for Science Education has created Expelled Exposed, which explains why the movie is “not a documentary at all, but anti-science propaganda aimed at creating the appearance of controversy where there is none.”)

Other examples of the “rise in conspirational thinking in science” include a controversy overly familiar in discussions about autism, the alleged link between vaccines and autism. Writes Engbar:

The proponents of intelligent design are far from the only critics of mainstream science whose skepticism has taken on the trappings of conspiracy theory. In a 2005 article for Salon and Rolling Stone, Robert F. Kennedy Jr. reported on a top-secret meeting in rural Georgia where high-level government officials and pharmaceutical executives worked to cover up the link between children’s vaccines and autism. (No such link has been found.) The public utilities are still accused, as they have been for more than 50 years, of conspiring against America’s youth by fluoridating the water supply. And skeptics of the obesity epidemic point out that the media collude with pharmaceutical companies to feed a booming weight-loss industry. Paranoid science reveals nonmedical conspiracies, too—impenetrable ballistics data form the basis for a theory of the assassination of JFK, and the calculations of structural engineering cast doubt on the official story of 9/11.

Healthy skepticism and thoughtful critique of science have turned into paranoia and an adherence to pseudoscience which looks like science, sounds authoritative, and tends to quack (as in quackery). In the meantime, the hypothesis that vaccines (like the MMR) or something in vaccines (such as mercury) are a causative factor autism has lodged itself deeply in the public’s consciousness, and the carefully reasoned protests of scientists about vaccines saving lives and the threats to herd immunity have so far fallen on some very deaf ears.

To explain this turn to paranoia and unreasonable, accusatory suspicion, Engbar quotes historian Richard Hofstadter’s 1964 essay on the “paranoid style in American politics“:

The paranoid style, Hofstadter wrote, “is nothing if not scholarly in its technique.” In his mainstream enemies, the conspiratorial thinker sees “a projection of the self”—he’s just like them but more discerning and more rational. Indeed, for the paranoid skeptics, it’s not that science is wrong but that the scientists aren’t scientific enough……..

Proponents of a hypothetical vaccine-autism link are indeed “nothing if not scholarly” in their technique. From the 2001 article Autism: a novel form of mercury poisoning to the writings of David Kirby, to the “Lupron protocol” of Mark Geier and David Geier, those who believe that vaccines directly contribute to autism make constant reference to “science” and “research” and “studies.” Proponents of a vaccine-autism link offer themselves as maverick citizen-scientists who, uninfluenced by Big Pharma and driven by a parents’ need to know “what happened to my child,” are not afraid to stand up to the CDC, government science agencies, and research scientists. They are what Hofstadter terms a “scholarly paranoid.” And, as Engbar notes:

The scholarly paranoid, says Hofstadter, is also an apocalyptic thinker, “always manning the barricades of civilization.” At least one-third of Expelled is given over to the idea that evolutionary theory caused the Holocaust, via government-sponsored social Darwinism. (In pondering this terrible legacy, Ben Stein weeps at Dachau.) If the paranoid style in politics worried over the end of democracy, the paranoid style in science sees evolution as the end of values, antidepressants as the end of emotion, and genetically modified crops as the end of biodiversity.

These catastrophic fantasies may be an inevitable result of skepticism run amok.

Indeed. Proponents of a vaccine-autism speak frequently of autism in apocalyptic language that suggests there’s a lot of catastrophic thinking going on. The language of disaster is often referred to: Autism is a “tsunami“; autism is an “epidemic”; autism is a “national health emergency.” The very advances of modern science have, some proponents of a vaccine-autism link contend, created some new and awful scourge that threatens our children.

In an earlier post, Elementary, My Dear Mr. Handley—-Mr. Handley being J.B. Handley, the founder of Generation Rescue, which alleges that autism and other neurological disorders are caused by an “overload of heavy metals, live viruses, and bacteria”—-I wrote:

…..maybe when you spend so much time thinking about mercury instead of dealing with actual autistic persons in the here and now, you start to see things—you start to imagine conspiracies—-as you cobble together a plot for the Great Autism Whodunnit. This makes for (semi-) amusing reading, but I’m afraid it does not really help too much in addressing the really pressing problems that many of us face in getting the school placements our kids need to thrive in, in finding a babysitter so we can attend a school meeting about transitions, in teaching my son Charlie to write “s” so he can write his last name, Fisher. These are topics that I find need to be addressed in this “age of autism.”

What’s the purpose ultimately of tracking down a conspiracy about autism and vaccines? The more reports of “evidence” “confirming” the autism-vaccine hypothesis that I read, the less these seem to be about autism. Tracking down the truth about an alleged conspiracy involving the government, vaccines and autism has become an end itself and somehow I don’t think this is in the best interest of preparing education, supports, and services for autistic children growing up to be autistic adults. The recent subpoenas of blogger Kathleen Seidel, who has carefully documented vaccine injury litagation, and Dr. Maria McCormick, who has spoken publicly and straightforwardly about there being no link between vaccines and autism, are examples of this (potentially fruitless) tendency towards conspirational thinking in proponents of a vaccine-autism link. (The subpoena against Seidel was recently quashed; a concise analysis is offered by Ars Technica.)

Conspiracy theories and controversy—especially a medical controversy involving children— attract attention, and all the more when wrapped in scholarly references and scientific-looking theories. Who doesn’t want to be proven smarter than the scientists, especially those who work for the government?

Rather than pander to the theory- and the conspiracy-mongers, I’m keeping my thoughts on those pressing issues of education, employment, housing, training and support for staff and emergency personnel and medical professionals and I don’t know who else. As of his annual check-up last Monday, my not-yet-11-year-old son if 7/8 inch taller than me. He’s muscular and shocked another boy at the pool by how fast he can swim: If things were different, I wager that Charlie would have been recruited to play defense on the high school football team. Things being as they are, he is not (okay by me). Things being as they are, pandering and paranoia aren’t going to get me too far in helping him. But being practical, pragmatic, and political-minded: These are a necessary style of thinking to foster the kinds of changes in our society that will most help  Charlie and many autistic children and adult; that will make a real difference in their and our lives.

Right now (afternoon of April 23, Wednesday) over at Science Blogs there’s a number of posts about Barack Obama’s statement at a Monday rally in Pennsylvnia that evidence linking vaccines and autism was “inconclusive” and that further research is needed. (It’s also pointed out that Hillary Clinton has also embraced “anti-vaccination woo”.)

While the candidates’ views (here’s Senator John McCain’s) on vaccine and autism have become a sort of barometer for their views on science, it’s necessary also to consider their views on disability—on education, special education, employment, health care—more generally. Professor Michael Bérubé, who teaches American literature and cultural studies at Penn State University takes a close look at these in a post on disability and democracy over at TPM Café.

Professor Bérubé gives Clinton’s diability policies on her website an overall rating of “pretty damn good,” with one caveat. Because “there’s no separate heading for policies affecting people with disabilities,” to determine her views on the employment of persons with disabilities, special education, and so forth, “you have to look around under other issues - in this case, health care - to see if disability is mentioned.” It’s a seemingly small point but Bérubé (who writes frequently about disability studies and whose teenage son, Jamie, has Down syndrome) links this to a larger issue of accessibility:

A Hillary Clinton Administration would be quite good on disability/ health and disability/ employment, and generally good for my kid - this one, not the college senior who turns 22 today (happy birthday, Nick! Now get back to work). I have no substantial complaints about Clinton’s proposals, though of course I wish that her husband had issued that Executive Order to hire people with disabilities about seven and half years earlier than July 26, 2000. But someone should’ve told the campaign to reorganize that website so that Hillary’s disability policies are clearer and more . . . accessible.

In contrast, go to Barack Obama’s website, and you’ll find a separate heading entitled Disabilities. Writes Bérubé:

This in itself is remarkable; but it turns out that this isn’t just a matter of better web design. Whoever is advising Obama on disability policy is really, really smart. The nine-page .pdf, “Barack Obama’s Plan to Empower Americans with Disabilities”, says many of the same things Hillary does - about supporting full funding for IDEA, providing health coverage for the most vulnerable among us, and hiring 100,000 people with disabilities in the federal government (except that someone needs to tell the Obama camp that it’s Executive Order 13163 Obama needs to reinstate, not 13173, which created an Interagency Task Force on the Economic Development of the Central San Joaquin Valley; reinstating 13173, whatever its merits, probably won’t do much for disability policy in the United States). But the plan is, remarkably enough, at once broader and more specific than Clinton’s.

It promises $10 billion in early intervention programs for children with special needs, via Early Head Start, Early Learning Challenge Grants, and IDEA Part C.

It proposes “a comprehensive study of students with disabilities and transition to work and higher education” - something that (a) has never been done and (b) is of great interest to teenagers with disabilities and their loved ones. ……

It pledges support for Tom Harkin’s ADA Restoration Act, which would “overturn the Supreme Court decisions that limit the ADA’s coverage and effectiveness.” ……

It has a subsection devoted to flexible work plans, ranging from an expansion of the Family and Medical Leave Act to protection against “caregiver discrimination.” “Workers with family obligations often are discriminated against in the workplace,” it notes. “This is a growing problem, as evidenced by the skyrocketing number of discrimination suits being filed: there has been a 400 percent increase in the number of family responsibility discrimination lawsuits in the last decade.” Again, though, this is of no interest to you unless you know someone with a disability, or know someone who might someday have a disability.

It promises to make the U.S. a signatory to the U.N. Convention on the Rights of Persons with Disabilities.

And it informs us that “Barack Obama is a cosponsor of the Genetic Information Nondiscrimination Act (GINA), which prohibits discrimination on the basis of genetic information by employers and health insurers. The Act also applies health information privacy regulations to the use and disclosure of genetic information.”

Yes, I’ve been vexed since yesterday on hearing about Obama saying that he is “suspicious” that the “skyrocketing” autism rate might be connected to vaccines (and by the other candidates’ views on this subject too). On the other hand, it’s disconcerting to see that, once again, discussion about autism has been overtaken by discussion about vaccines and an alleged (and not scientifically substantiated) link to autism. It’s the candidates’ views on disability in general—-on education, employment, insurance, and more—-that I’m most interested in, as these views suggest policies that will affect Charlie. (Go to the end of Bérubé’s post for his (brief; you’ll see why) analysis of McCain on disability issues.)

Let’s not let discussion about vaccines usurp attention from the real issues.

The Pennsylvania Primary is today, with Hillary Rodham Clinton and Barack Obama battling it out. I’ve noted the candidates’ autism plans in a previous post. Today’s Washington Post hones in on another way to consider the candidates, the alleged link between vaccines and autism. Back in February, Senator John McCain linked the rise in autism cases to thimerosal in vaccines. The Washing ton Post indicates that he’s not the only candidate who has “wandered into an exceptionally emotional medical debate in which they have no known scientific expertise”: According to David Kirby in today’s Huffington Post, Obama was quoted at a Pennsylvania rally yesterday saying that he is “suspicious” that the “skyrocketing” autism rate might connected to vaccines (Mother Jones magazine also refers to this). Says the Washington Post:

The scientific debate will continue, but the body of evidence assembled so far suggests no proven link. Both McCain and Obama are wrong to suggest that the scientific verdict is still hanging in the balance.

Clinton, who has said she believes there is an “autism epidemic” [source], has said that she will “double investments in the National Institutes of Health’s (NIH) efforts to identify the causes of autism, including possible environmental causes.”

Maybe we need to introduce a “scientific knowledge factor” in assessing politicians?

Google and genius; the meaning of MR and the meaning of intelligence; a new name for autism from David Kirby; an online town meeting for the NYU Child Study Center; a little presidential candidate politicking…….

• Parents Don’t Cause Autism
  And neither do vaccines or something in vaccines.
• Myth, Science, and Autism: A Message from the AAP
  Well aware of the amount of misinformation about vaccines and autism circulating in the public sphere, the AAP has sent out a request to hear from parents who have an autistic child and who are in support of immunizations, or parents whose child has a vaccine-preventable illness; parents who might wish to speak on behalf of the AAP in either capacity can email the AAP.
• Nate Tseglin Removed From His Home and Institutionalized: Why?
  Should Child Protective Services of San Diego have removed 17-year-old Nate Tseglin from his parents, Ilya and Riva Tseglin, after a teacher reported seeing self-inflicted scratches on Nate’s body and complaining about the doctor-approved arm restraints that his parents used?
• On Lockdown
  Saint Peter’s College, where I teach, is on lockdown on February 20th after a suspicious letter is found: Things turn out all right, and I make it home to meet Charlie’s bus.
• I Think Therefore I Google?
  Science fiction blog io9 considers what it would be like to have a Google brain implant.
• So Albert, Wolfgang, and Immanuel Had Autism: Does It Matter?
  Michael Fitzgerald, a professor of psychiatry at Trinity College in Dublin, recently argued that the genes for creativity and for autism and autism spectrum disorders are “‘essentially the same.’”
• “”We label them as retarded because they can’t express what they know”
  Wired’s article, “The Truth About Autism: Scientists Reconsider What They Think They Know” closely profiles Amanda Baggs—-who notes that “‘I don’t fit the stereotype of autism. But who does?’”— and Michelle Dawson—-who says “‘There’s such a variety of human behavior. Why is my kind wrong?”‘.
• Too Many Questions from David Kirby and one from Charlie
  Journalist David Kirby asks a lot of questions—-nine in boldface, and many more besides—in a recent Huffington Post piece on a vaccine-autism case in the Court of Federal Claims. US Assistant Attorney General Peter Keisler and other Justice Department officials conceded on November 9 that a child “had a pre-existing mitochondrial disorder that was ‘aggravated’ by her shots, and which ultimately resulted in an ASD diagnosis” or, more specifically, in a diagnosis of “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development”—-no surprise that Kirby keeps on making up elaborate names for some disease “mimicking” autism.
• Register for NYU Child Study Center Online Town Hall at 9am TODAY
  The NYU Child Study Center holds an Online Town Hall on Children’s Mental Health: Go here for a transcript.
• Hillary and Autism
  Barbara Ehrenreich suggests that Hillary Rodham Clinton’s platform style puts her on the spectrum.
• Smart and Smarter
  Anyone who’s spent any time with Charlie knows that—-while he is very limited in his speech and while it often takes a long time (minutes, hours, days) for him to understand things that are said to him—-he doesn’t just look smart, but he is.
• Who’s Trapped in Whose World?
  “Are people with autism trapped in their own world? Or are the rest of us just trapped in ours?” asks Tara Parker-Pope on the New York Times.
• Making a Little Big Difference
  When I think of college students doing work to make a difference, it’s the many young women (mostly) and young men who have chosen to spend time with Charlie and autistic kids who I think about first.
• Sen. John McCain Links Rise in Autism Cases to Thimerosal
  At a town meeting in Texas today, McCain said that “‘there’s strong evidence’” that thimerosal, the mercury-based preservative, is responsible for the rising numbers of autistic children in the US.

Writing about unstoppable Obama in the February 14th Huffington Post, writer Barbara Ehrenreich tries to describe his “mysterious and irrational” appeal: “He’s a ‘rock star,’ all flash and no substance, tending dangerously, according to the New York Times’ Paul Krugman, to a ‘cult of personality.’” If he “supposedly goes for the id,” Hillary Rodham Clinton is the “designated valedictorian” who reaches for the more rational, and controlling, ego and super-ego. “She might as well be promoting choral singing in the face of Beatlemania,” Ehrenreich comments, and (in what the February 26th Globe and Mail considers a “gratuitously nasty swipe”), suggests that Clinton’s platform style puts her on the spectrum:

Someone needs to tell her that there are better ways to signal conviction than by raising one’s voice and drawing out the vowels, as in “I KNOW …” and “I BELIEVE …” The frozen smile has to go too, along with the metronymic nodding, which sometimes goes on long enough to suggest a placement within the autism spectrum.

Certainly there’s a bit more to considering someone autistic than the kind of emotional frigidity that Ehrenreich describes in Clinton. It’s not just autistic kids who need social skills classes to “connect.”……

Personally, my vote is for Obama and this simple message: got hope?