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.

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.