Oh, you have autism? Well, that's curable.

The title of this post is a sort of summary of TH's take-home information from an episode at school. He has another child in his class with autism whose autism is, as TH puts it, "worse" than our son's. This child's mother, Ms. Grossmund, came to class to talk to them about her child's autism, a sort of circle of friends minus the circle of friends, parent letter, or, as it seems to turn out, accurate information.

When I picked TH up from school Friday, I got this sense that something was on his mind. He denied having anything in particular to talk about, but I IM'd his dad that I felt there was something going on. That night, at about 10 o' clock, TH came downstairs. He does this often in the late evening...sometimes, it's just to make a final connection with me, sometimes it's to take me into our home office so he can tell me something that to him is very personal, and sometimes, it's confessional to both Mr. DMFP and me. This night, it was this last.

He sat down, paused for a bit while I hugged him, and then blurted out, "Ms. Grossmund came to our class today to talk about (her son) and to tell us that he is autistic." Mr. DMFP and I locked eyes over TH's head. He went on to tell us that she had talked about her son in specifics about how he communicates and so on, and I asked, "Did you say anything?"

And TH said, "I raised my hand and then said, 'I have autism, too.'"

I've thought about this a lot since Friday night. Maybe it's misplaced. Maybe it's too soon. But I felt a flood of maternal pride and respect for my son, for his courage and for his capacity for self acceptance. First, he had the courage to raise his hand in front of a total stranger and his entire class. That's a big deal. And then, he manifested total acceptance of who he is, openly, without shame or embarrassment. This is a child who still has to take 15 minutes to get used to his grandmother's entering the house.

The story gets garbled from here. At some point, another child in TH's class--actually, his best friend--raised his hand and asked, "Is there a cure for autism?" TH, who still has no real concept of time or linear ordering of events, cannot tell us whether this occurred before or after he told the parent he has autism. But he was fully able to tell us what she had to say: Autism can be cured. Some people get "better" and will actually become like "normal" people.

I've never seen Mr. DMFP so pissed off, in his way, about something. We both explained to TH that what he has--which is Asperger's syndrome--is not a disease. It's not something that requires a cure. It's not something that we've ever thought needs to be cured. That there is no such thing as normal. Everyone carries with them things that are difficult, things that they have to work on, to try to improve. His suite of difficulties simply has a name: Asperger's. That doesn't make it a disease. He's just like everyone else in that some things are hard for him, and he has to work harder on those things.

Finally, I also told him that (a) we think he's incredible just the way he is and have never thought he needed to be "cured" from anything, and (b) people with autism don't get "cured." Like everyone else, as they develop and mature, they may improve or overcome some of the difficulties that come with autism. Not all, maybe, but some. But the things that make them autistic--the great things, the neutral things, the difficult things--don't all just "go away" any more than someone's tendency to anxiety or depression or manic behavior or impulsiveness or creativity or math genius or good comedic timing just "goes away."

Mr. DMFP and I talked a lot about this over the weekend. He worried that TH came out of that classroom experience with the impression that his Asperger's is something that people view as a disease, something that needs to be cured, or something that he should hope will just "go away" someday so he can be "normal." So, I asked him, "Did that make you feel bad? Do you feel like you need to be cured from your autism?"

And he said, "No," and expressed to me, in his way, that he's genuinely comfortable with who he is.

I believe that someday soon, TH will probably begin to have an even greater awareness of some of the disputes that take place in the world of autism. Diets. Cures. Chelation. Disease. Way of being. Acceptance. Rejection. Right now, he's eight years old. Right now, he's in third grade. Yet, already he's showing a maturity beyond his years, one that bodes well for what I've stated here before is my goal for my children: that they achieve true happiness by understanding and accepting themselves. Part of that will likely involve encountering and maybe even confronting misconceptions and misinformation about who they are. I simply hadn't guessed that the process would start so early.

True confessions

I'm sorry. I couldn't help it. I simply viewed it as my barometer for how scientifically accurate the Dateline show would be. Couldn't watch it myself because I had my lovely, wonderful in-laws over for dinner.

And thus it came to pass that I was so so so so very much hoping that the folks over at Age of Autism would be unhappy with the Dateline NBC story on autism and its various players. And they are! Sure, I've got a wee smidge of schadenfreude. But that's why God made vodka--for drowning one's wee smidge of schadenfreude in the precious distillations of the potato. Cheers!

Back to school

We had parents' night for third grade (third grade???) last night. While we sat at TH's little desk, I poked through the folder that was there, already containing a stack of papers he'd completed. Most of them had to do with "Getting to Know You" Q&A activities. On every question related to school, TH reiterated again and again that he "hates" school. Hates it. Passionately.

Disturbing to read that sort of thing, especially for us, as we value learning so highly. So, that night, I laid next to TH in his bed and asked him why he disliked school so much. Did he not like to learn things? And he told me that the only things he likes about school are recess, lunch, and gym. To myself, I thought, well, you and every other eight-year-old boy in the country.

And then he told me that he doesn't want to learn at school, he wants to learn at home. I had sudden insight into why he "hates" school so much. A good example is probably his experience the very first day. We put money into the boys' lunch accounts electronically. He had a lot of money sitting there. The first-day lunch was a bizarre offering of chicken salad or cheese sticks and Caesar salad as the main dish (yes, this is what our district offers up to K-5 on the first day of school). I knew he wouldn't eat that, so I made him a sandwich and a bag of chips and told him he could buy milks and anything else he needed in the cafeteria.

The teacher asked that morning if anyone had any checks or other money to turn in for their lunch accounts. TH didn't, he got confused, and decided that meant he had no money. So he ended up with his sandwich and chips and no drink. You feel sort of bad for him, maybe, right? It's things like this, navigating class shifts and lunch account nuances and the brand new playground that's got him all discombobulated and sitting at the front of the classroom and interacting all day and on and on...it's all this, not the learning, that he "hates" about school. I can understand that. I choose to work by myself just so I can avoid many analogous situations in the adult world.

But the story has a very TH-like ending to it. Just as I was expressing pity for him, not having his milk at lunch, he piped up (of course, we were in the car, the boys telling me their required post-school information: lunch, playground, what they learned, who they sat with, any warnings)...and he said, "But then, I found this great water fountain right outside the cafeteria, and I just went out there for my drink and the water was really cold. It was great!"

And I, still in my stupid adult way fixated on adequate caloric intake and my grownup idea of a good lunch for my son, said, "Well, I'm sorry you had only your sandwich today." And TH, awed at my sheer obtuseness, said, "But I didn't! I had that really good water, too!"

I do really love that child.

Must-see TV?

Something to chew on, perhaps thoughtfully?

Anger management

I made the grievous error of reading that Age of Autism parent rant that everyone's been talking about (I shan't link to it for fear of acquiring some terrible, contagious polemical virus). In addition to finding the writing pretty appalling, I came away from the end of that lengthy, shrieking screed feeling like someone really needs some serious anger management training. I should know. I've got anger problems myself. I've improved significantly with them over the years, coming to realize that almost all anger is drama, a set piece with Ego as the director, complete with furniture chewing and histrionics. Now, I confine my anger to the pickup truck driver who is tailgating me, and even in those cases, I'm managing to keep the wild gestures and expletives to a dull roar.

I have some understanding of the pain of watching a child in pain. Among them, my three children have experienced 10 surgical procedures involving general anesthesia and have had 8 stitches, two MRIs, one CT scan, three VCUGs, one DMSA scan, a cracked humerus, several ultrasounds, and a few nights in the hospital. My youngest, when he was a baby, ripped a Foley tube from his urethra after one of his operations because it was giving him intense pain. There's nothing quite like watching blood flow from your child's urinary system into a plastic bag by the bed. My oldest endured 12 ear infections and an equivalent number of rounds of antibiotics before we got smart and got him ear tubes. My middle son had six ear infections that were so severe that when we finally got the tubes, his eardrums were horrifically scarred and he'd probably been essentially profoundly hearing impaired through much of his infancy. He's also endured intensely painful operations for tear ducts blocked bilaterally with bone and for removal of tonsils and adenoids after six back-to-back strep infections that had him throwing up and on serial antibiotics for months.

We've got bad urological systems, including serious bilateral reflux, urethral flaps, undescended testes, a hernia, and some kidney scarring. One of my children has a symptomatic Chiari I malformation that he may finally be outgrowing. One of my children has had two seizures, one of my children is diagnosed with autism, one is diagnosed with ADHD and tic disorder and has OCD, giving him, according to his neurologist, the Tourette's trifecta. One has terrible essential tremor. I have sat with one of my children over extensive periods in the bathroom, holding him tightly while he screamed through the painful resolution of constipation brought on by permanent, torturing anxiety that led him to ideate suicide when he was three years old.

While during some of these things that my children experienced I became frustrated with a nurse or two--especially the one who tried to give my son plain Tylenol rather than Tylenol with codeine after a significant operation (in that case, the anger, while quiet and insistent, was not drama)--I have never felt...anger. It just seemed pointless. At whom? Fate? I can see why people rage against Fate, but I've always felt that Lady Fate has a way of dropping that other shoe if you're too self centered, too ungrateful, too focused on your Ego-directed set piece. Rage against Fate, and Fate will send you something to spiral you out of your Ego, leave you flattened and selfless, stripped of all that is good, at rock bottom.

I know anger. I used to use it far too much. I still feel it rise and have learned certain ways of managing it. One of my children shows the same tendencies to anger extremes, to a mercury that climbs too high, too fast with all the sound and fury of its expression. And despite all of the things I just catalogued above, the one thing that worries both Mr. DMFP and me the most about any of our children is just that: the frightening emotional lability that leads to these expressions of extreme, shrieking anger. It's harmful to him inside and out to feel that intensity of unhappiness, to dwell and fume and rant and rage, partly from natural inclination and partly from a desire for effect.

We are working with him on anger management, starting him early on understanding those feelings and seeking other paths to resolution, not choking it back but learning to self calm, self understand, not throw furniture or strafe one's tender throat with the screaming. Having read that Age of Autism tirade, I feel as though we should redouble our efforts because heaven forfend that our son should turn out like that. And by "that," I do not mean the autistic child it describes but the parent who wrote it.

One of the many faces--and voices--of autism

I picked this up from MOM NOS's blog, and I thought I'd help broadcast it around. Go here and read this mother's story about her son, Jamie, which she posted as part of a "Most Deserving Fan" contest on the Aerosmith Website. If you have it in you, click the "thumbs up" after reading it. You'll feel compelled to do so, I promise. She speaks honestly and with heart about their family's path to this moment.

Then, click here or on her YouTube link in the piece. Watch Jamie, the autistic, Aerosmith-loving rockstar perform in front of a large audience. Perform well in front of a large audience.

Here's a tissue. You'll need it.

Funny: Eye of the beholder

TH walked in the room as I was perusing the delights over at awkwardfamilyphotos.com. If you haven't been there, go. You may die laughing, but it will have been totally worth it.

Anyway, we came across this picture, and I laughed out loud. TH, who is always trying to track down the funny in things, asked me for the millionth time, "Is that funny?" He'd already asked that about several pictures that had brought out a laugh from me, and while I answered "yes" in every case, it wasn't always so easy to explain why. But this picture, I thought, was pretty self evident.

"Can you tell why it's funny?" I asked. He was laughing, so I was sure he'd "gotten it."

"Yes!" he said. "It's because they put the tall parent behind the tall kid and the short parent behind the short kid."

Is that an Aspie thing, to find the humor in the symmetry and not in the crotch grab? I'm planning to test it using Dubya. I'm almost sure he's gonna notice the grab.

On vaccines...a shift in the wind?

This piece by Jonathan Rabinovitz in Stanford Medicine stands on its own, but I've noted or quoted a few highlights below. I personally think that in spite of its length, every pediatrician who gets questions about vaccines should have a reprint available to give to parents.

Notable highlight: Paul Offit receives death threats. At least one has been deemed credible by the FBI. This because he promotes vaccines for public health and has drawn the evidence-based conclusion that there is no link between vaccines and autism.

In re A. Wakefield: "A trailblazer in this respect (offering hope for a cure) was Andrew Wakefield, MD, a gastroenterologist at the Royal Free Hospital in London, who has perhaps done more than any other doctor to create the current fears about vaccines and autism."

In re thimerosal: "studies of places that had removed thimerosal from vaccines or had hardly ever used it — Denmark, Sweden, the United Kingdom and Canada — showed that it made no difference to autism: Cases increased even when children did not receive vaccines with thimerosal. Several analyses of U.S. data seemed to confirm that point. In the latest development, numbers from the California Department of Developmental Services were published in the Archives of General Psychiatry in January 2008, and the article revealed that roughly six years after the vast majority of shots were free of thimerosal, the incidence of autism in the state continued to grow."

In re our woefully celebrity-oriented culture: "One of the parents brushed aside advice about vaccination, saying that actress Jenny McCarthy had recommended not giving any shots for at least the first 18 months because young immune systems can’t handle them."

The above was a story told by Stanford doctor and assistant professor about a parent who'd apparently rather believe Jenny McCarthy than a...Stanford MD?

In re "understatement": “The big, big issue is trust,” says Gans.

In spite of the depth and detail of this piece and the clarity with which it presents the facts today, we still have the ability to bring you the following, quoted from Tom Henderson at ParentDish:

Dr. Rochelle Neally, a chiropractor at the Long Beach Autism Center in California questions large-scale medical studies. They are often backed by the big money of monolithic pharmaceutical companies," she said.

"What they call 'scientific' are these expensive double-blind tests," she said. "I tend to believe what I see in my office and what I've seen at the autism conferences I've attended for the past 10 years."

I edit scientific papers for a living. Almost every single paper that is not from a large-scale, double-blind trial ends with, "Larger-scale double-blind trials will be necessary to confirm these data." I have never seen anyone call for "smaller-scale" studies. Yet, as though what she's asking for here isn't enough, there's more:

Dr. Eileen Comia, M.D., in Bloomfield, Conn., is another physician allied with Defeat Autism Now. She said smaller-scale studies are needed. "Any doctor who says there's no link between diet and autism hasn't read a single article on the subject," she said.

Yep. You read that right. It's a typical tactic. When science does what everyone's screaming for science to do--large studies! Double blind!--it's time to reverse course and become completely batsh!t-crazy erratic, spin around twice and shake out some powdered eye of newt and batwing, and cry out in a demon voice, "Smaller-scale studies!" In defiance of all scientific precedent, all statistical understanding, all common sense. But then...that's pretty much par for the course when it comes to this pseudoscience garbage, isn't it?

Edited to add: Seems like this is all the news today. Mr. DMFP and several others have also alerted me to this piece at SF Gate. Careful. The comments could burn your retinas, and you may feel your synapses committing suicide if you read some of them.