8-gold-medal swimmer Michael Phelps has ADHD: Did he succeed not so much in spite of having ADHD, but, in part, because he does?

Tara Parker-Pope on the New York Times Well blog posed this question. Allow me to rephrase it in terms of autism and (to refer to an oft-mentioned figure), animal scientist Temple Grandin.

Did Grandin succeed not so much in spite of being autistic, but because she is?

And as some will not doubt rush in to point out that Grandin is very “hfa,” I’ll note that some things that can make things very trying for more son—his intensive need for order and his particular, deep-running sensory needs—can be of benefit. I always know where to look for his items and he’s becoming a champion grocery-put-awayer. I don’t think he’d himself be such a swimmer if he didn’t like being–need to be–in the water so.

If you haven’t already read Measles not worth the risk, an October 6th op-ed by epidemiologist John Laurence Kiely, go here. Kiely recalls having the measles and then pneumonia, and being hospitalized, and under an oxygen tent, and his mother’s distraught face. But, as he notes:

Most Americans don’t remember those days. Why? Because four years after I got sick, the Centers for Disease Control and Prevention began a mass measles immunization program. By 2000, the number of reported cases of measles had decreased to 86 and the number of deaths to one.

So it is distressing to see that this year measles is on the upswing.

As of July, there were 131 measles cases reported to CDC, the highest number since any comparable period since 1996. Most pediatricians and public health officials believe that’s because fewer parents are bringing their young children in to get vaccinated.

And why is that? Because since 1998 the idea that the measles-mumps-rubella (MMR) vaccine causes autism has scared them away.

This is not just shameful. It’s scandalous. The entire phenomenon was spawned by a few studies by one research team with results that nobody else has able to replicate and publish in the peer-reviewed medical literature.

Measles is not “just a charming appearance of red spots on a two-year old’s stomach” and Kiely calls on federal public health officials to step up, speak out, make it clear that “The MMR vaccine doesn’t hurt kids. Letting them go without it will.”

Organizations and advocates who support the notion that vaccines or something in vaccines causes autism often suggest that nothing could be worse than autism; that measles, cancer, any disease is a fate preferable to the dreaded “autism.”

It’s a notion that I find really troubling and ultimately harmful and hurtful. Yes, we’ve had our struggles to help Charlie and do the right thing by him but life’s always better with Charlie, and Charlie has autism, and that’s all part of the story.

Charlie was diagnosed with autism when we were living in Minnesota. It’s now eight years since we left the Twin Cities, and we’ve stayed in touch with a family whose child and Charlie share almost the same birthday. Our trajectories and choices have been different but so much more is the same. Both Charlie and our friend’s child are in new schools this year, are older, and many changes lie ahead.

Jim had to go into his office for a university event and Charlie and I were late getting into meet our friends, due to certain subways not running on the weekend. We had to take a different subway than usual and I realized that we were at our stop too late; Charlie, amid all the unfamiliarity, did not want to get up. A man with a boy of about 5 said to me, not unkindly, “don’t worry, there’s another stop coming up really soon.” It did and Charlie and I got out around Lincoln Center and hurried over to meet our friends. We talked and walked around the Fordham campus some and then Jim got the idea of taking the subway to lower Manhattan. Our friend’s child liked that idea a lot and down we went.

Charlie was excited and exuberant to be amid old friends and made what Jim describes as a sort of Olympics-worthy run with a shopping basket in had through a store on the way to finding some dinner. There’s always too much to talk about when we see our friends, about schools and how far we’ve come and life. Because we’ve all indeed come far, done much, changed.

Jim hailed a taxi for our friends to take back to their hotel. Charlie hopped in first when it pulled up and had to get out (and then the taxi started to drive off without all of our friends getting in). I felt like I had started several conversations with my friend and not been able to finish any; there’s just too much to talk about, too much to cram into a meal and a good walk. Too much.

The three of us walked through Chinatown and Little Italy to take the PATH train back to Jersey City. When we got on the train, Jim and I saw red on Charlie’s fingers and around his mouth: Another tooth loose.

Another night with Charlie, with our bestest friend, and some very good old friends who are walking on the same path us.

Autism a fate worse than measles—I have to think not.

Has lugging loads of (soaking wet) laundry led to your developing the muscles in your arms (though not as much as this Olympian mom)? Imagine if you had an iBasket, a combination laundry basket/washing machine, rendering the lugging-laundry-basket step unnecessary—-now, how about automating the next step, hoisting the cleaned but still wet items into the dryer………

Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81.

The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81 figure, the article relies on a chart made up from data from public school districts around the country. (You can see the chart here via a parent’s website.) The parent of an autistic child, Dan Hollenbeck, arrived at this figure by finding the number of cases of autism services provided by each state’s public schools and then dividing this by the number of children enrolled. The figures that Hollenbeck arrived at provide an idea of how many children who are classified under the code of autism are receiving services in school districts across the US. But, it should be noted that school districts around the country vary in how they classify children as needing to receive services for autism, and services and programs for autistic children in public school vary widely from state to state (and within states—that’s certainly the case here in New Jersey–between rich and poor school districts, for instance). More than a few children classified under the autism code wouldn’t be diagnosed with autism if a full diagnostic assessment was done.

Further, Hollenbeck is the Director of Technology at Thoughtful House, an Austin-based center which is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” Dr. Andrew Wakefield (the figure at the center of the MMR-autism controversy) is on the research staff of Thoughtful House, which says that we are “in the midst of an epidemic of developmental disorders that includes autism, Asperger’s Syndrome, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive development disorder (PDD), and nonverbal learning disorder (NLD). And, Hollenbeck and his wife, Laura Hewiston (the researcher behind a certain infamous poster presentation on monkeys and vaccines) are listed as litigants (see #437) in the Autism Omnibus proceedings in which some 4800 families are claiming that vaccines injured their children and causes them to become autistic.

In other words, there is some motivation for Hollenbeck to offer data that suggest that the rates of autism have risen “epidemically,” and especially due to vaccines or something in vaccines. (And, CityPages needs to make a few clarifications about the data that it is using.)

The 1 in 81 figure suggests that educators in Minnesota are very aware about autism and about providing services for children. And that’s certainly also the case in New Jersey which, according to Hollenbeck’s figures, has 1 in 115 children with autism, which is rather counter to the CDC’s 2007 figures, and rather counter to what the “Jerseyan in the street” would tell you about autism here. Down here at the shore on Tuesday morning, my son Charlie got over-stimulated in a bakery—chock full of vacationers and display cases—-and someone who is probably the owner appeared from the back; he has an autistic grandson. (We’d always noted a collection jar for autism events on the counter.) Last week, there was a young autistic man in the waves with his father every day, and this week there’s a boy a bit older than Charlie. And there’s Charlie himself; when we tell the lifeguards about why it’s so hard for him to understand about “swimming flag to flag,” saying “autism” is pretty much all that needs to be said. Back home, there’s our school district which has a quite high rate of autistic students compared to the overall total of students—-because it’s a district with a very strong autism program and also special education services, and many families (like us) have moved to it for that reason.

No discussion of autism rates among students (and no discussion of the so-called “autism epidemic“) is complete without keeping in mind Washington University Paul Shattuck’s 2006 article on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” in which he found that, as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. George Washington University anthropologist Roy Richard Grinker’s 2007 book Unstrange Minds: Remapping the World of Autism further explains how historical and cultural factors have led many to feel and even to believe that there is an epidemic of autism, in no small part due to our better understanding of autism, broadened and refined diagnostic criteria, and a huge increase in public awareness. There’s more and more research going on about the causes of autism: The August 19th KQED has a report on northern California researchers who are studying the causes, especially environmental ones , of autism. A blog details a video report, which can be seen here. Researchers are studying seemingly everything from dirty diapers to carpet dust in an effort to find if there are any “risk factors” that an expecting mother might encounter, that might be linked to her having an autistic child.

Having gone from Minnesota back to Jersey by way of California in this post, I have to note that we’ve connections to all three of these states. Charlie was diagnosed in Minnesota, has receive most of his school education in New Jersey (Jim’s native state), and I’m California born and bred, and there’s no question that, in all of those states (and in Missouri, where Charlie was born), we’ve encountered many autistic children. But then the chicken or egg question arises: Is the increase in autism is due to something specific that can be pointed to, something external and in the environment; or is it because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students)?

We’ve got the technology to measure Michael Phelps winning his seventh gold medal by .001 of a second—surely we’re better able to count cases of autism?

It being the “dog days of August”; us being on vacation at the beach house; the 2008 Olympics taking place; Charlie being a boy who loves loves loves to swim—-I am indulging in making a bit of an Olympic (”citius altius fortius“).

More than a few people have said to me that life raising an autistic child is not so much a sprint as a marathon. In the beginning, after you first get the diagnosis, it feels that you have to run to your utmost abilities, until you’ve drawn your last breath and then still have to give it your all: So parents race to find out and try so many treatments and therapies for their child, so parents hurry hurry hurry and “give their all” to “recovering a child from autism.” You can read many an online (and book) account of children “recovered” from autism, often through various biomedical, alternative treatments. A recovered child, it’s suggested: Now those are parents who’ve won their event, who stand on the podium and get the gold medal of autism parenthood.

And then there’s “those others.” Whose children still have their diagnosis, still are in self-contained special ed classrooms with a 1:1 teacher:student ratio; who still need speech therapy and 1:1 care all the time. Who need psychiatric medications. Who don’t have any peer-aged friends. Who live with a list of “nevers” and “nots” that seems to only get longer as the days pass.

Yeah, no medal for us; no “history-making” records set for us—-yes, I’ll say it—-losers.

This is pretty pessimistic thinking of course, and not at all how Jim and I see our life with Charlie. I think I’m a mom who’s hit the proverbial jackpot for the proverbial gold: For the zillionth time, life raising an autistic son ain’t easy. But everything, absolutely everything, is better—shimmers gold—thanks to a boy named Charlie.

I have been noting Jim’s and my worries about Charlie in the ocean this year. He is a far better swimmer than both of us—Jim has endured a serious back injury—Charlie understands that he’s supposed to “swim between the flags,” but that doesn’t mean he always does this, and sometimes he can’t help drifting outside those boundaries because of the current. Today he got very annoyed at both of us for calling him to swim “over here,” and tugging and coaxing him in the lifeguard-designated swim space and I felt like such a nag.

But hey, that’s part of The Parenthood, right? Having to play The Bad Guy, the “cop,” the disciplinarian. Having to set limits and rules and boundaries.

Once upon a time, Jim and I would have thought, maybe Charlie will just ever understand what we’re telling him. Today it was so apparent that he not only understood the flag concept, but that he was peeved: Why couldn’t he swim where he wanted to? Isn’t one wave as good as the next? And Charlie really is such a good swimmer, sensing every wave as easily as breathing and just as at ease under water as floating on it; Jim and I are klutzy landlubbers, compared to the Kingfish. But rules are rules and, the ocean being the ocean, a parent must err on the side of caution, and so the glorious swim out to sea that Charlie wanted to undertake after the lifeguards had left was curtailed, and he was not happy and told us so in wordless ways.

Later on, after Charlie (very tired, and tanned) was sound asleep, we were watching Michael Phelps and Usain Bolt. We watched them win; we watched their cameras pan over to their mothers, screaming cheers and victory dancing in the stands. Most of us mothers and parents aren’t going to see our kids compete for Olympic medals but I know we cheer as less hard, we rearrange our lives in pursuit of something bigger, we give up so we can give all, we gain.

I see Charlie in the waves and I feel that glow of victory. Because we’ve, he’s, worked so hard and persevered; kept trying; managed to endure; simply glories to be in his element working his body through the water or on the race course, and beams with pride at what he can do.

This vacation got off to a slow start. But we seem to have hit a groove, found our pace, and are moving onward, faster, higher, and stronger, even at high tide in big and crashing waves.

Maybe you’ve heard about 9-year-old Lin Hao—-a survivor of the Sichuan earthquake who dug himself out of the rubble and then went back and got two of his classmates out—who appeared in the super-spectacular Opening Ceremony of the Oympics and about whom, as Grace Ibay at Kids Health Notes, writes, Chinese bloggers are talking about:

Not by accident, the tiny flag that Lin Hao is waving is upside down. It’s an international nautical distress signal. It’s a cry for help. And someone thought of sending that message out at the Opening Ceremony of the Beijing Olympics.

Just an accident, maybe not quite an incident?

What if cars bearing puzzle magnets chose to turn them upside down to indicate distress; a particularly bad day?

We don’t, by the way, have any sort of puzzle magnet on our car anymore, but we do have a decal for COSAC, which is New Jersey’s largest autism organization and whose symbol is a tree which I like, as it makes me think of growth and growing things, and growing boys.

And the decal’s right-side up.

The dry land swimming machine: Now while I hazard that Charlie might like the sort of swinging aspect, swimming without the sensory pleasures of water—nope.

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?

Up until last week, posts about “mercury” and “Jenny McCarthy” had the most comments—-after last week, the topic of religion and the restraining order filed against the parents of Adam Race generated a torrent of discussion that’s still going on).

• Priest Files Restraining Order Against Parents of Autistic 13-year-old
  Some 250-plus comments about Adam Race and the parish of St. Joseph’s in Bertha, Minnesota.
• A Mother and a Housewife
  Mothers and housewives can be pretty accomplished—-one whom I know (via the internet) is Kathleen Seidel, who writes the Neurodiversity weblog.
• Read with Care: New Study on Thimerosal and Neurodevelopmental Disorders
  A new study published in the Journal of Neurological Sciences that reports an association between increased mercury (Hg) exposure from thimerosal-containing vaccines and neurodevelopmental disorders; two of the co-authors are Mark and David Geier.
• 5-year-old girl drowns in bathtub
  5-year-old Carlee Bennett of Pleasant Prairie, Wisconsin, apparently drowned in her bathtub on the evening of May 17th.
• So Is It Really Autism?: The search for medical signs
  According to Dr. Fernando Miranda of the Bright Mind Institute, maybe not. A report in the May 19th Good Morning America/ABC News describes some children who were initially diagnosed with autism, and later found to have Landau-Kleffner Syndrome. For some of the children, anti-seizure medication has produced dramatic results.
• Timeout Rooms and Physical Restraints
  Put in a timeout room more than 90 times?—coming home from school with cuts, bumps, and bruises?—-being held on the floor on his stomach by two adults?: All of these happened to 9-year-old Matthew Montgomery in Oldham County, Kentucky.
• Excluded?: On Keeping the Faith
  Does a fear of rejection, of being excluded, too often lead parents of autistic children and autistic individuals, and individuals who are “different,” not to seek out communities and experiences that they still feel drawn to?
• Insurance Doesn’t Pay For Groceries—What About Autism?
  Two comments by officials in two Utah insurance companies suggest how much is still not known about autism
• It’s Ok to be Disabled Until—-
  Oscar Pistorius, the runner from South Africa who is a double amputee, recently won a decision to be allowed to compete in the Olympic trials.

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.