Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

Seems likes CNN is running a three-day series under the name of “Autism 911,” in which they’re focusing on a California family, the Bilsons, whose middle child, 13-year-old Marissa, is autistic and has tantrums that are “off the charts and seemingly unwarranted.” In “Supernanny” fashion, an autism consultant from an ABA provider, Autism Partnership, has been called in and, it seems, the CNN show will see if it’s possible to “[rein] in” Marissa’s behavior.

Since she’s 13, I’m wondering if she’s entering, or isin the midst of, puberty? As noted, adolescence and the hormonal and other changes has made this school year—already challenging as Charlie started middle school—-even more, well, challenging.

And then there’s this quasi-sensationalistic statement on the CNN piece:

….many of us have never seen autism in action……

The statement’s said following Mary Bilton’s uncertainty about what to do, but it seems rather presumptive, as if most people have never seen anyone with autism (with the 1 in 150 prevalence rate for children, most people probably have met someone with autism, whether they know it or not) and as if “autism in action” is equal to tantrums (talk about a limited view of autism). A state from the co-director of Autism Partnership, Dr. Ron Leaf, says something more hopeful and, I’d say, accurate:

The one thing that Leaf believes they all have in common is that “[autistic persons] are not expected to do enough.” Leaf insists we have set the bar too low for what we think children and adults with autism can do.

You can say that again—-presume competence and it’s onward and upward; assume “he can’t do that”—-we can’t do that, for Marissa Bilton, for any child.

So, you’re reaching for the eggnog or another piece of gingerbread and Great Uncle W says to you, “Now what is all this I hear about autism and vaccines?”

Or, some friendly step-relatives happens to end up next to you while the Christmas carol sheets are being handed out and, just as you’re trying to sneak out of the chair to sit by your child who already has his hands over your ears while your musician second cousin starts playing something from Jersey Boys on the piano to expressions of delight, said step-relative says, with a concerned smile, “Does he have this thing called sensitive-processor disorder too? A friend says her nephew has it.”

Now don’t get me wrong. After the initial incredulity that Charlie “had” something, my extended (and not small) family has made it a point to reach out and include Charlie. Considering that a frequent family activity is “getting together in someone’s house or an economically priced restaurant in Oakland Chinatown,” and a certain amount of conversation is about the food we ate last time we met, the food we’re eating, and the food we’re going to eat (say, when we get together for dinner……..that night), Charlie is quite in his element and certainly knows how to work the lazy Susan.

Lest eating numerous Chinese meals (ok, sometimes we “go American” and eat sandwiches) in various settings with various combinations of relatives seems boring and repetitive to you, I can see how, if we lived in California, this would provide Charlie with constant opportunities for interactions with the same (more or less) people. I was a picky eater as a child, so I suspect my family watches Charlie’s hearty eating with some equally hearty approval (and I think he’s started on another growth spurt—-he spent most of a snow day last Friday and the weekend sleeping, and I just realized the sleeves of his coat ride up when he raises his arms). It’s true, Charlie doesn’t run off to hang with my cousins’ kids, but he does like to be in the same room or nearby them, with Jim or me or my parents around.

Mostly my relatives like to hear what’s going for Charlie at school and someone inevitably says that “X who they know has a child with autism,” and various therapies get listed. One side of my family being quite up-to-date regarding technology and TV, should anyone mention that December 11th The Doctors episode on which DAN! doctor Jay Gordon I am grateful to have checked in with Orac at Respectful Insolence’s thorough working over of supernova stupidity:

What’s really annoying about this episode is that, mixed in with some accurate information is a bunch of infuriating false “balance” and Dr. Gordon’s antivaccine stylings. The parents (Dan and Lori) featured in the segment have seven children, with another one on the way, and four of their children are autistic. I don’t know about you, but to me that fact alone would strongly suggest a genetic component, but naturally these parents blame vaccines for their children’s autism.

As Orac concludes, “the one thing that The Doctors demonstrates beyond a shadow of a doubt is that having physicians involved in the making of a show about medicine and medical controversies is no guarantee that the resulting show will be science-based”—-indeed, the resulting show will be TV medicine or science, Hollywood style, and, as noted when the comedic legal drama Eli Stone aired back in January of this year, the whole “child becomes autistic after receiving a vaccine and some professional [legal in Eli Stone; medical in The Doctors] proves there’s gotta be a link” gambit can fit very well in the allotted hour, with some commercial breaks allowed for. The idea that vaccines can be linked to autism is readily explained as a simple matter of cause and effect, plus you can insert, to good effect, a few shots of those needles and those mysterious vials that have had who knows what injected into them by some unknowing pharm tech.

So yes, I am feeling prepared to address any “but what about those vaccine” questions—-and the sensory stuff—-and, if no one’s rushing off to take a turn at Guitar Hero, am glad to speak to genetics and the fact that autism really is a family thing.

While I’m contemplating where to locate twinkling bike lights and as it’s the holiday season, I thought I’d make a confession:

Charlie’s never sat on Santa Claus’s lap.

We have tried, when he was much younger and we found ourselves in a mall in New Jersey, the land of malls and mallrats. Or maybe we had gone to the mall that day for that sole purpose. Something about “mall air” and the deliberately smiling velvet-clad elves/Santa’s helpers, and the line of overly excited, bored, or wandering about children, led Jim to say, quite wisely: “Let’s get out of here.”

We never really brought up the matter after that. Charlie was around 4 or 5 then and he wasn’t too inclined to sit on anyone’s lap for too long, and we worried about what if he got upset and back-arched while Santa was a ho-ho-ho-ing, and we found ourselves handed a picture of forced smile Santa and not smiling Charlie, for a not-cheap price. And so we kept sending out photo cards with Charlie in random candids, usually shot outside (and often from the summer, by the ocean).

On once relaying our guess-we-gave-up-on-the-Santa-thing, I was immediately reminded by my mom of the response that both my sister and I had while sitting on the lap, or even getting near, Jolly Old St. Nick. “You cried,” my mom said. And, indeed, there’s nary a photo of me on Santa’s lap in the rather extensive photo and slide archives in my parents’ house.

Which brings to me to a quandary that’s a sort of corollary: The whole matter of telling Charlie about the guy in the red suit who comes down the chimney and, for that matter, the bunny that brings the basket full of Easter eggs, and the fairy who takes away your teeth and brings coins……while we’ve talked about all these to Charlie at the appropriate holidays, as of a couple of years ago, we ceased to. Charlie never developed any particular interest in any of those make-believe characters. He’s never been one for stuffed animals (aside from the says-100-things Barney he used to have) and his main concern regarding his teeth was getting that loose hanging thing out of his mouth.

Part of me feels that maybe we didn’t try enough to explain about Santa Claus et al., and the other part of me sends out a reminder: You would have had to reveal that Santa = Dad and Mom anyways.

What Charlie most seems to be interested in during the holidays is seeing my parents and staying in their house at the bottom of a hill in Oakland, California, and eating in a lot of Chinese restaurants with food-laden lazy Susans swinging ’round. I have a rather large extended family who likes to get together and, as the three of us usually only visit once a year (Charlie and I did go out to California in June, but it was a very teary visit as Charlie really missed Jim), Christmas has become a time to connect and reconnect with my relatives (I haven’t lived in California for over twenty years). As it’s rather likely that we may end up in California, we try to pack in a lot in each visit, and our time on the west coast with Charlie—it means a lot to show him and Jim all the places (Chinatown, where my grandmother Ngin-Ngin still lives; the cemetery where Yeh Yeh, my grandfather, and many other relatives are buried) that made up my world as a girl.

Yes, Santa will just have to wait.

In Massachusetts, Michael Mayes, an 18-year-old senior at Marshfield High School who plays baseball and football, is one of 28 students who will serve on Governor Deval Patrick’s Statewide Youth Council, today’s Boston Globe reports:

The panel was established by the governor to allow young people to weigh in on issues important to their communities and to them personally - such as soaring college costs, violence prevention, and healthcare. The opinions and concerns, voiced during council meetings, will be relayed to state legislators. The council has two representatives from each county in the state. They serve for two years.

Mayes is autistic and recalls that “‘In elementary school, everyone always underestimated me.’” Not any more……

And across the country in California, this news: Schwarzenegger Vetoes Bill Recommended By Autism Commission. Bill SB 1563 would have required state agencies that deal with health insurance to create a workgroup on insurance coverage for autistic individuals and those with developmental disabilities. Here is Governor Scwharzenegger’s veto message:

Governor’s SB 1563 Veto Message

To the Members of the California State Senate:

I am returning Senate Bill 1563 without my signature.

The provisions of this bill are currently being accomplished administratively through the Department of Managed Health Care. Therefore, this bill is unnecessary and duplicative of existing work. For this reason, I am unable to support this bill.

Sincerely,
Arnold Schwarzenegger

In these instances, it looks like some are listening, and some need to listen a lot more.

A Bay Area woman was sentence to seven years in prison for posing as a school volunteer or teaching assistant—-and, in one case, the sister of an autistic sibling—-to gain access to classrooms, where she stole teachers’ wallets and, in some cases, opened up credit cards under their names. It’s estimated that the woman, Tynesha West, stole about $100,000. The August 28th Contra Costa Times quotes a special education teacher who says that

West “harmed us more than the money, credit cards, gift cards and identities she stole,” a Lafayette teacher wrote. “She stole all that we stand for: working hard, playing fair and square, following the rules, kindness to others, honesty, being a good citizen — just to name a few.”

I can’t say this wouldn’t have happened at Charlie’s school. I do know that, when anyone visits his classroom for the first time, that person has to wait in the front office and is escorted to the classroom by a staff member. Anyone who’s not staff has to wear a visitor’s name tag and to sign in and out of the front office.

Always saddening to hear how someone uses autism for less than worthy ends.

After a priest filed a restraining order against the parents of 13-year-old Adam Race back in May, there was a lot of (often very heated) discussion about the exclusion and inclusion of autistic individuals in public spaces. The August 22nd Morning News reports on The Point at Bella Vista, a church meant for families with a relative who has special needs. Ginny Thornburgh, director of the American Association of People with Disabilities Interfaith Initiative in Washington, notes that

“the trend is to acknowledge the gifts and challenges children and adults with disabilities bring to the congregation…….. All people of all faiths have a right to be honored and welcomed - a right to worship, study, serve and learn.”

Hope that this is a trend that will certainly continue.

Go here to read about the Interfaith Disability Connection.

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?

This Associated Press story about autistic children and disruptive behavior has been making the rounds of news outlets and websites—-Jen Miller of Tacoma, whose daughter is autistic, writes this in the News Tribune:

….it’s funny how easy it is for some to complain when they haven’t walked a day in an autistic parent’s shoes.

Miller refers to a number of instances of autistic children whose “disruptive behavior” has been the subject of more than a little public discussion and judgment and reminds us, you just never know what might be going on.

In the ocean this morning with Charlie, I noted a boy about his age looking more than a few times in our direction. Charlie’s a super swimmer, and clearly comfortable in the water, and still has to have someone out there with him. This morning it was me. The waves were perfect—big but soft and just a bit cold—and Charlie was vocalizing his excitement, though not in words. After the other boy had looked in out direction a few times, I smiled and said, “Charlie’s autistic.”

“Yes, my friend has a brother who has that,” said the boy. I asked how old he was; the boy said he was ten, same as himself, and that “all he does is play video games and beat people up.”

“My son doesn’t do either of those,” I said, quickly, and glancing around to see where Charlie was swimming off to. “I mean, a lot of kids like to play video games, but not the beating people up.”

The boy was in earnest and added, “He’s mainstreamed, too. He’s in fourth grade. They had to hold him back a year.”

At that point Charlie was clearly swimming beyond the lifeguard’s orange flag and I hurried off. The boy and another boy, both on boogie boards, floated several times near us and in and out wherever Charlie was going.

The beach is big and the waves themselves are loud. I’d say it’s a place where there’s room for everyone, “whatever” they are (on the first day, we realized that another family on the beach had an autistic son, an adult). There’s still rules—those orange flags to swim between, and not swimming near the jetties or near a fishing pole (Charlie attempted to do both this morning). One reason we like to vacation at the beach is because it is a place where Charlie can pretty much do what he likes a lot, get in a lot of exercise, not have to worry about waiting in lines for rides as we would at an amusement park. Being able to rent a house rather than a hotel room means there’s plenty of room for him to run around and stomp (and we have our own washing machine…….). Souvenir shopping and going to arcades aren’t of interest to Charlie, and the ocean and sand are pretty much the main attraction.

So, we try to seek out a place where Charlie can be himself, in public spaces too, and get ready to play the parent activist at certain moments when a boy taller than his mother who speaks partially in sounds rather than words attracts attention and can be considered disruptive. The August 13th Associated Press has an article about the disruptive behavior of autistic children striking a furor; some cases of autistic children—Adam Race; Alex Barton—being excluded are noted. Is there a limit to how much “understanding can be gained in grocery stores, churches or other public places”? If parents go out of their way to make accommodations and preparations when taking a special needs kid out in public, maybe these are first attempts to help a child learn to be in public places, and to seek the beginnings of understanding.

Maybe—at least they’re ways to get a conversation about autism going.