First, huge applause for Bonnie Sayers for organizing, garnering prizes, managing Autism Twitter Day.

Did you tweet? (I did, though not as much as I would have wanted to—-a thing called giving exams, and grading exams, and end of semester business…….)

What did you think? Do it again?

The earlier part of this year saw the publication of a number of studies about the genetics of autism, with one scientist speculating about a unified theory of autism.

The July 2008 Nature Genetics has a review of psychiatric genetics that considers progress and controversy. Here is the abstract:

Several psychiatric disorders — such as bipolar disorder, schizophrenia and autism — are highly heritable, yet identifying their genetic basis has been challenging, with most discoveries failing to be replicated. However, inroads have been made by the incorporation of intermediate traits (endophenotypes) and of environmental factors into genetic analyses, and through the identification of rare inherited variants and novel structural mutations. Current efforts aim to increase sample sizes by gathering larger samples for case–control studies or through meta-analyses of such studies. More attention on unique families, rare variants, and on incorporating environment and the emerging knowledge of biological function and pathways into genetic analysis is warranted.

And some more information about genetic tests and psychiatric disorders: In a recent post on Eye on DNA by Dr. Hsien Hsien Lei, describes newly-developed (and, in some cases, still being developed) genetic tests for psychiatric disorders that are being offered by three different companies. Neuromark’s Mark-C will examine two genetic markers, GRIK2 and GRIA3, that appear to increase the risk of suicidal thoughts in people taking antidepressant drug Celexa; Psynomics is offering a test for mutations of genes linked to bipolar disorder and to patient responses to serotonin-based drugs; SureGene “examines a panel of (unspecified) genes and markers that is being marketed to aid in the diagnosis of patients at risk of developing psychosis,” and that may also be used to predict a person’s response to taking anti-psychotic medications. Autism is not a psychiatric condition (though it used to be considered such); some of the issues raised in the development of these genetic tests are relevant to consider, especially if some kind of genetic test for autism is created.Eye on DNA includes a thoughtful comment from a family practice physician, Tim Janzen, on a Genealogy-DNA discussion list. Dr. Janzen notes that attendant anxiety that may arise in some one who receives a positive result on such a test and underscores that these tests indicate a “genetic predisposition”:

Patients who have a family history of mental illness or other conditions already know that they have a predisposition (unless they are adopted). Thus the genetic results will either reinforce the fact that specific patients are at increased personal risk or they will show that they are at lower risk than they might otherwise be. We shouldn’t forget that environment also plays a role in mental health. Drug abuse is one environmental factor that also predisposes to mental illness.

Genetic testing might be incorporated into “treatment algorithms for people with mental illness.” Regarding “environmental factors,” it’s not quite clear what Dr. Janzen is referring to, though he seems to be speaking not so much about factors such as air pollution, but about what potential parents might do, or not do.

Genetic testing is an understandably sensitive topic in discussions about autism: There are concerns about what choices parents might make if there were a prenatal test for autism and as other diagnostic genetic tests for autism are developed. As my son’s communication abilities are limited—–he is not able, yet, to describe his emotions or if his stomach hurts, or how a certain medication might be affecting him—and here other kinds of testing might, or might not be helpful. Indeed, seeking answers about what to do is a motivating reason for why people are in search of a physiological marker for autism.

Kendall Bailey is 19 years old, 6 foot 6, and a champion swimmer headed for the Paralympics in Beijing this September—–but he was almost rendered ineligible by the United States itself. Bailey has cerebral palsy, mental retardation, autism, and Klinefelter’s syndrome, which prevents his body from producing testosterone. Today’s New York Times profiles his dream to swim in the Paralympics and the efforts of his mother, Connie Shaw, to make sure that this happens:

Kendall Bailey is a rare case of a mentally disabled athlete who also has the physical disabilities to qualify him for the Paralympics. But in April, amid confusion about how disabled athletes are classified both before and during the Games, officials who oversee the American team on behalf of the United States Olympic Committee formally asked that Bailey be ruled ineligible.

Mrs. Shaw objected and had the request withdrawn, but was distraught over what United States team officials continued to describe to her as the strong possibility her son could be disqualified after arriving in China. Bailey’s local coach, Don Watkinds, feared the swimmer’s reaction: “Kendall would be uncontrollably enraged, or he might just crawl into a ball in the corner crying,” he said. “And he might never come out.”

The head of U.S. Paralympics, Charlie Huebner, who lodged the request to render Bailey ineligible, said in several interviews this week that he was merely “seeking clarification” of Bailey’s status so that his eligibility would be assessed before Beijing.

But David Grevemberg, who handled the matter for the International Paralympic Committee, said Monday that Bailey’s eligibility for the Paralympics was never a plausible issue, called the United States’ rationale “far-reaching,” and questioned its legitimacy altogether.

The Paralympics are for athletes with physical disabilities and are “often confused with the Special Olympics — a far less competitive event for people with mental disabilities like Down syndrome.” Bailey qualifies for the Paralympics because of his cerebral palsy and physical disabilities, but “after a challenge by another country, he was classified briefly as only intellectually disabled.” And being classified as such would render him ineligible to qualify for the Paralympics.

Happily, Bailey will be able to compete in Beijing. It seems telling that the reasons for disqualifying him were based on how to “classify” him—his athletic ability was not the issue. The New York Times article notes that his intellectual ability a number of times (”he  alternates between being a clumsily communicative fifth-grader and an intractable toddler”) as well as his behavior problems (which are somewhat equated with his autism diagnosis). Do Bailey’s story and that of Oscar Pistorius—the South African runner who is a double amputee and runs using special prosthetic devices—-portend a new kind of Olympics; a new kind of understanding of athletic ability?

22-year-old Nicky Reilly is being held over a nail bomb attack last week in a restaurant in Exeter, UK. Reilly is believed to have Asperger’s Syndrome, today’s Times notes:

Reilly, 22, is a Muslim convert who has spent time detained in a mental health hospital. He has been described as a shambling introvert with the mental age of a 10-year-old. He is believed to have Asperger’s syndrome, a form of autism, and may also suffer from schizophrenia.

Security officials say Al-Qaeda appears to have exported the tactic from Iraq, where disabled “foot soldiers” have been used to devastating effect.

They point to a case in February when a suicide bomber in a wheelchair killed an Iraqi general in Samarra, north of Baghdad. Earlier, two women, initially thought to have Down’s syndrome, acted as couriers for a bomb in Baghdad, killing almost 100 people.

Officials say people with mental disabilities are not only easier to manipulate but also less likely to arouse suspicion. If they are white Muslim converts, they are even less likely to be noticed.

Reilly was found with three “primitive but ‘viable’” homemade bombs. One exploded in the lavatory of the restaurant and he suffered severe cuts to his face. He is in stable condition in a hospital.

This story is worrisome (an understatement). These are the most immediate thoughts it evokes in me as the parent of a disabled son who is very likely not going to be able to work or live independently throughout his life: When Charlie is not with us, he always has a 1:1 aide. But (if I may sound like an over-worried mother; so be it) I could imagine someone trying to put some illegal substance in Charlie’s backpack (if he were wearing it on his back, he would probably not notice if someone unzipped it and stuck something in there). And I could also imagine Charlie “falling in with the wrong crowd” (this is a bit unlikely, but you never know). While wary of strangers, Charlie can also be too trusting.

Tough things to bring up. But I’d rather take precautions prior to anything happening.

More commentary about Reilly:

The unstable are ripe for radicalisation by Richard Watson in the Independent (Ireland)
Gay New Blog (Reilly apparently was “was dubbed ‘Queenie’ by other teens on the estate where he grew up.”

We all root for amputees—-until they win medals is the blurb on an article by William Saletan in the May 21st Slate. Saletan writes about Oscar Pistorius, the runner from South Africa who—he is a double amputee—runs on specially built prostheses called “cheetahs” ( j-shapes blades made of carbon fiber). Pistorius recently won a decision to be allowed to compete in the Olympic trials; the International Association of Athletics (IAAF—track’s governing body) had argued that he had an unfair advantage because of his high-tech prosthetic legs. But the Court of Sports Arbitration “deemed that there was not enough evidence to prove that Pistorius’s flexible j-shaped blades, attached below his knees, gave him an advantage.”

It could as readily be argued that Pistorius is at something more than a disadvantage. If I may be blunt, how would your life be different if you did not have one leg, or both? (I have thought about this more than a lot, as a close friend has a prothesis.)

Pistorius’ being allowed to compete in the Olympic Trials is a watershed decision. From the New York Times:

Ann Cody, a seven-time Paralympic medalist for the United States in basketball and track and field who sits on the governing board of the International Paralympic Committee, added: “It sends a message. People with disabilities can see people like them compete, and they’ll connect. They’ll say, ‘Maybe I can do that, too.’ ”

There’s been a lot of discussion here about exclusion after a Minnesota priest filed a restraining order against the parents of 13-year-old Adam Race. What it is about autistic children and adults that results in them being separated, segregated, and set apart?

Again, I’m not sure there’s a definite answer that can be made about Adam Race and St. Joseph’s parish in Minnesota. I remain wary of coming to any definite conclusion about “who’s right” and “who’s wrong” and whether this or that should or should not have been done. In our days with Charlie, helping him to learn and succeed requires a constant dance and a shifting of strategies in a land with hidden quicksand and, too, quagmires.

In the midst of this, reading about the documentary Including Samuel helped to turn my thoughts to inclusion. Samuel has cerebral palsy; he is mainstreamed in the New Hampshire elementary school in the town where he lives. The film is by his father, Dan Habib, who wonders, while Samuel is included now as a child, what happens when he gets older? (And if you haven’t seen the trailer for the film, it’s here.) I wonder the same: Charlie at 11 is not the “cute little guy” who can be tossed in the air or cuddled in a lap; his difference stands out and the response from those who don’t know him is tinged with puzzlement and even fear. One thing to see a disabled toddler so “in need of help”—but what about when the toddler becomes a young, disabled man?

The response from those who spend their days with Charlie, who sit beside him when he moans for some sadness he has no words for, who applaud him when he seeks out another student in his class for a very short coversation—-their response is a sort of pride and joy at how far he’s come. Being autistic didn’t “slow down” Craig Pierson, who is graduating from high school and plans to become a disability lawyer. And Joel Sidney, who is also autistic, is graduating from the University of California at Berkeley with a degree in American Studies and a thesis on bluegrass music (and Am Stud is my husband Jim’s main academic field and the vast percentage of my relatives, including my mother’s father, went to Cal Berkeley—- Sidney’s accomplishment has a special gleam on it for me, and were I to become a lawyer, disability rights is where I’d be headed, like Pierson).

I’m rooting for Oscar Pistorius when he runs in the Olympic trials and in every race—-I’m rooting for him to win.

Big Brother contestant Adam Jasinki—who achieved near-universal opprobrium in the autism community for calling autistic children “retards” on the show—-is one of the final two contestants to win the half a million dollar prize. Today’s Philadelphia Inquirer describes him as a “wide-eyed lug with Cherry Hill roots”—-that’s Cherry Hill in South Jersey—-who has “connived his controversial way” into possibly winning. If Jasinski wins, it’s a sad statement about what people will do for money and about people in general: Something a lot, lot less than brotherly love.

A Difficult Youth Is A Good Thing for a Fisher——um, a fish, according to a study about the Bluehead Wrasse reported about in Science Daily back in February:

[Scientists] discovered that fish larvae that survive a long, rough, offshore journey eventually arrive at a near shore reef in good condition, and that they thrive afterwards.In contrast, locally produced young have a relatively easy life and they arrive on the reef (near the area where they were spawned) in a variety of conditions –– from poor to good. Only the young that are in good condition survive after a month on the reef.

Fisher is Charlie’s last name and his childhood (these first ten years and ten-plus months) has definitely been a journey upstream, in a rough current. We’ve all become better swimmers along the way, though it’s Charlie who is still the kingfish, in his natural element in the water.

No surprise then when, on a trip to the aquarium with my parents today Charlie (who is on spring break from school) closely followed the path of a swimming shark in the Shark Realm. My dad noted that Charlie’s eyes closely followed the path of a shark who swam over their heads. After seeing some scuba divers in the tanks to feed the sharks, Charlie indicated that he wanted to go for a swim too (at which point I reminded my dad that, had Charlie managed to get in the tank, my dad would have been obliged to carry out his grandfatherly duty and jump in after Charlie).

As usual, being on Spring Break is disrupting Charlie on every front, from his sleep schedule to his sense of order. My parents suggested Mexican take-out for dinner. Charlie said “no” and paused and took his plate of rice and beans (fast devoured over the weekend), looked at it for a few minutes, and threw it. And burst into loud tears, so that it took several minutes before he bent over and scraped up the thrown food and put it into the garbage, me assisting with paper towels and soap (and wonderng why it always happens that I wear a new shirt on the days these things happen, because they don’t happen so much). Still crying, Charlie got into the shower and turned on the water, and I stood by with shampoo and soap and told him I was glad that he had tried to tell us how he felt.

“Better next time,” I said.

“Next time,” said Charlie.

I thought some more and it occurred to me, that Charlie does not know how to say “I don’t want” as “I don’t want rice and beans now, I don’t feel like it.” He might say “no” to food but when he sees and smells and has a plate of it, did cognitive dissonance set in? Here he had a plate of food he liked but he didn’t want to eat it, but he knew that eating the food was what to do with it, but he didn’t want to, and what was he do to?

Time to teach “I don’t want.”

And to remember, a difficult youth can be a good thing for a fish.

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.

Some interesting reviews from Toronto of Autism: The Musical which (EyeWeekly notes) offers a “real life alternative to Rain Man.” And, while I’m on the subject, two more musicals: In Brick Township, NJ, a “rock opera,” Day After Day, that is about “the daily struggles the families of autistic children face”; it’s being performed this Friday and has also been performed eight times in New Jersey, Pennsylvania and New York over the course of two months in 2004.

On a slightly different note (sorry for the unintended pun), in New York there’s Next to Normal, the city’s “first mainstream musical about manic depression.” Housewife Diana is manic-depressive and, it seems, undergoes electro-shock treatment in the course of the show (someone it seems a little off to have just written that); one supposes taht a dance of “pill-proffering pharmacologists” will not exactly enchant the “this vaccine thing is all a conspiracy between Big Pharma and the government” lobby. Notes the February 14th New York Times:

………“Next to Normal” assesses the fragmenting effects of mental illness within a family. It also, in an honored tradition of all-American hometown weepers, makes a high school dance an acid test for a central character. And the lyrics traffic in Lifetime-style buzzwords. People sing with some regularity of wanting to “begin to heal,” and they ask questions like: “Who’s crazy: the one who’s uncured? Or maybe the one who’s endured?”

Schmalzy stuff but “the uncured” and “the one who’s endured”: Those phrases resonate around here.

My school, Saint Peter’s College in Jersey City, has been on lockdown since 10.34am after a “suspicious note” was found. The campus website notes that “there has not been an actual incident”; my students and I, and everyone in our building, have been told to stay put until further notice (we haven’t been told much and have been watching a live video with Jersey City police getting out of their vehicles with dogs…..more news here on Fox News). I’m hoping things are all right and wondering if I’m going to be able to get home to meet Charlie’s schoolbus…….