Early therapy mildens autism

Yes, I just made up the word "mildens." It's like embiggens, but not on the Simpsons.

A new study reported widely today has found that early intervention with therapy can ameliorate some of the manifestations of autism. The study findings fit our own personal anecdote regarding autism and our youngest child.

A couple of days after I had Little Da, the midwife came over for one of our home visits (yes, midwives come see you at home and give you and your baby a checkup. You don't have to pack up on day 2 and go to the doctor's office, bleeding, sore, and exhausted, and expose your newborn to whatever's lurking around there, "well-child" area or not). When she arrived, TH vanished immediately, scurrying under our bed and staying there pretty much the entire visit. Later, we mentioned his autism, and she said she knew that there was "something" because of the way he hid under our bed. Then she mentioned one of her grown children, a son she said they'd always called their "funny honey bunny" because he had some similar behaviors.

By the time Little Da was born, we had long realized that in retrospect, TH had shown numerous signs of his autism, even in infancy. And now, even the research literature was reporting more about early, first-year signs. Given this new wealth of information and the social struggles TH was having in kindergarten in Da's first year, it's likely no surprise to anyone that I watched our youngest son closely for indications of delays--motor, speech, interaction.

But the thing is, when I saw them, I denied them.

Severe motor delays? No. He's just a little late. Foot dragging, praxis issues? No ability to motor plan? No. Just...what? No rolling over at 10 months? No sitting? No crawling? No speech at 17 months? A full-on interaction shutdown at 11 months?

Obviously, with this growing aggregate of signs, I couldn't stay in denial for long. We went to his pediatrician, and then we went to therapy. Occupational therapy and speech therapy. I quote here from my blog post about his evaluation at age 16.5 months:

The baby had his speech-language evaluation, and his results are in. They administered four assessments: Preschool Language Scale, 4th edition, The MacArthur Communicative Development Inventory: Words and Gestures, the Symbolic Play Scale, and Pre-speech oral mechanism exam, in addition to clinical observation of speech-language, communication, and cognitive-linguistic skills.

He scores in the 1st percentile across the board; where there are age equivalencies, he falls between 8-9 months (he's 16.5 months old). He "presents with severe receptive-expressive language and communication disorder characterized by an absence of functional verbal output and vocalizations."

His motor evaluations were similar in percentiles. So, he was in therapy for several hours a week. From age 10 months to age 2 years, 10 months. Two years of therapy later, along with a much greater awareness at home and considerable application of our accumulated knowledge and understanding, Little Da is not autistic. If he were, I'd be OK with that, but his track was earlier and far more severe than TH's, who did not have a speaking delay (pragmatics? Something else entirely).

But Little Da still has his issues. He's probably never going to be a cheerleader or a car salesman (and I'm OK with that, too). He runs, terrified, if we're walking into his school and another person approaches, even if it's a parent he's seen a million times. When he enters his classroom--at a school he's been attending for almost his whole life with kids he's known as long--he usually still huddles in a corner, quiet and private, for a bit before he joins the children. And he still shows a few issues with motor planning, but they're nothing to write home about, as we say in Texas.

What would our youngest son have been like without the therapy? Well, if his behavior at about age 1 was any indication, silent, non-interactive, impenetrable. So overwhelmed by the world that his response was a total shutdown. With motor problems to accompany it. In other words, autistic. More so than his brother.

Do we think therapy has made him the functional, interactive little fellow he is today? Yes. Are we relieved that he's not more severely affected? Of course we are. We'd love him and accept him no matter what, but what parent wouldn't want their child to enter into life with the best possible tools he can have? TH has many struggles related to his autism that can be heartbreaking, to him and to us. I completely and wholly accept him for who he is and don't want to change anything about him from that perspective. He is a wonderful, interesting person. But from the perspective of the world as it is now? I'd be happy to have him skip over some of this pain because the world does not accept him for who he is. It's painful, but it's simple pragmatics. We think therapy lifted some of this weight for Little Da.

That's not to say that everything is all "neurotypical." If it were, then I guess when those two teenaged girls approached the Thomas the Tank Engine table at the bookstore this weekend, where Little Da was happily playing, alone, with the trains, he wouldn't have immediately alerted on the intrusion, following up the alarm with a fairly agile dive underneath the train table, where he stayed, still and terrified, until the offending young women moved away. Apparently, you can do certain things to ameliorate the effects of the world outside, but you'll never completely take the funny honey bunny out of a boy. And I'm OK with that, too.

Thanks for all that nothin'

I'm guessing that today or tomorrow, there will be a rash of posts in the blogosphere and stories in the news media about what we're all thankful for. I'm thankful, not just now but every minute of every day, for all that is good around me: my husband, children, friends, family, decent home, decent job, decent health insurance, decent and working (fingers crossed) cars, good books, food, and film, broadband, flora, cooler weather, and people who do their jobs right.

Now that I've got that out of the way, I've got a different kind of list. I'd like to thank all those who, through their crankiness or negativity or simple but painful practicality, put me in a position to be able to give thanks for all of the above.

First, I'd like to thank anyone who never gave me a job for which I applied. Thanks to you all--and gee, there are so many. You never call. You never write. Anyway, thanks to you all, I have the work I have today instead of a "real" job. I sit at my desk, tap-tapping away for my various steady clients, helping move the work of science forward one keystroke at a time. And I can go Twitter or Facebook or surf or write a blog post or shop online for hotels any time I please, as long as I get my work done. And I do.

I'd also like to thank the two teachers I had who thought and stated that I was "incompetent" and "stupid" (others thought that but didn't have the nerve to say it out loud). You taught me that not all opinions are valid. I thought a long time about those comments, and I can see that in some ways, like anyone else, I am incompetent and occasionally do some really stupid things. But overall, I am neither of those things you said I was. You were wrong, and I'm confident enough to say that. Many thanks.

My special thanks goes to the preeclampsia that assailed me at the end of my first pregnancy. You visited me again in my third and more severely, but that first visit was a real lesson in what little control I have over fate or parenting or anything else. I thought and planned that I'd have a quiet birth with a midwife. You put me in the hospital with 10 screaming strangers yelling "pushpushpushpush" at me with the door wide open to the hallways so anyone else could sneak a peek if they wanted to--and many did. I'm thankful to you for teaching me even before I had our oldest child that it's true: Life is what happens to you while you're making other plans. Bye-bye, arrogant, presumptuous control freak. Hello, acceptor.

I've got a quick thanks to toss out to a former employer who couldn't quite give me the teaching hours I needed to teach and to appropriately parent my children after school. Thanks to that, I was forced to try my hand as a full-time WAHM, and I now have the flexibility to choose whether or not to homeschool my children when they need it, to stay home with them any day they're sick, to volunteer in their classrooms, to be fully the parent they need me to be. I am truly, not sarcastically grateful to you for forcing my hand.

There are so many more thanks to go around, so I'll just wrap up with this one. Thanks to Me for a willingness to take some risks, make a whole lot of mistakes, and fight my way through life. Thanks to you, Me, I've learned a few lessons about picking my battles, keeping my peace, and holding my tongue when doing otherwise would be futile. Just a few. I still have a lot to learn, Me, but you've really taught me a lot in the last 41 years through your crankiness, pugnacity, and overall willingness to argue with just about anyone. For the opportunity to genuinely grow a little bit wiser and more mature with age, I am truly, truly thankful. Your mistakes have been lessons indeed, Me.

Now, to You, Dear Reader. What putatively negative experiences in your life have turned into something positive for you, something for which to be thankful? While you're considering that, let me wish anyone reading this a truly positive and happy thanksgiving. Be safe, be sound, be sated.

Outside the box

Parents in the "autism wars" tend to, I think, package one another into tidy little boxes with specific descriptives on the outside, such as "Product contains uninsightful, vaccinating, non-organic-feeding, careless, unaware, uneducated parents," or "product contains woo-loving, non-vaccinating, unscientific, blinded by anger, a-little-knowledge-is-a-dangerous-thing parents."

And what we really ought to all know is that no one really does quite fit into a box like that. I know, for example, that because I vaccinate my beautiful, healthy children, people tend to put me into the first box described up there. But I also know that my children take supplements every day--fish oil, probiotics, a Whole Foods multivitamin. That we buy almost all organic food to feed them and always have. That I slept with each of them through most of infancy, against careful pediatric advice. That I breastfed, even though it was intensely traumatic for all three children, from infections to mastititis to a tied tongue to our youngest child's utter inability to breastfeed at all, which left me pumping at midnight and 2, 4, and 6 a.m. every night for months.

And I know that I have them play outside daily for as long as possible every day and severely limit electronics time. That we never eat food dyed an unnatural color. That my credo on infancy is to bathe little to not at all because dirt is a good thing and babies were not meant to be bathed. That umcka is really pretty damned effective stuff, but echinacea and goldenseal and vitamin C...not so much. That during my three attempted homebirths, I used longstanding woo interventions such as blue cohosh and primrose oil and still succeeded in having only one of my children at home. And I know that I've rarely had a doctor whom I've trusted implicitly or met a health professional with whom I didn't have some disagreement. I argue with health professionals a lot. Every single one of these decisions, I based on careful examination of myself, the facts, our children, and what would be best for us. I bet that's how most parents try to do it.

And finally, I know that I have personally probably driven 10,000 miles shuttling my children to therapies for their issues, including several-times weekly sessions for TH the first year he was diagnosed. That we have fought as hard as any parent in a Mother Warrior box for our children and continue to do so, to give them the tools they need to navigate the world with reasonable success. That in the end, even though they've got various labels--autism, ADHD, bilateral ureteral reflux, tics, OCD--they are far more than the borders of those labels, and we want to promote that potential to its fullest, not pound with anger against perceptions of their limitations. They're more than the labels on their boxes, just like their parents are.

How about you? Where do you break out past your label?

Let's talk about sex

Warning: Below, I use the word "penis." If that word makes you uncomfortable, you should not have read this warning.

Our oldest child is 8 years old. I think, for his age, that he's somewhat sexually naive, not as aware of some sex-related distinctions as perhaps other boys his age are. Especially boys his age who are, shall we say, fairly savvy in other ways. Then, we've got our middle son, who is so acutely aware of the differences, so deeply disturbed by the effect that all things woman have on him, that it approaches a pathology.

So, it came as no surprise to me when, two evenings ago, TH announced at dinner that he'd figured out the difference between girls and boys. I had a guess regarding what he'd discerned, and I was right. "Girls," he announced, "do not have, um..." "Penises?" I completed for him, helpfully. "Yes!" he said. "And boys do." Score one for observation. I guess if they'd had a sister, he might have figured that one out earlier. I didn't ask him what had led to this epiphany.

He asked a few more questions, such as "Why?", and I responded in what I think was an age-appropriate way ("because boys develop with long urethras, the tube that leads from the bladder out. You can pee standing up and aim at things because of that"). We're going for basic, here. TH then observed to me, eyes wide, that when a boy grows up, "it" will become huge, "as long as four inches!" he exclaimed. "Actually," I said, "I think the average is supposed to be more like six." This brought on his "surprise" contortion, which consists of a huge open mouth, huge open eyes, arms extended to the sides, fingers all akimbo, posture held for a count of 10. This, apparently, was the most amazing news he'd heard all day.

A few days ago, he was reading this book about biology (there's also a physics and a chemistry), which explains a variety of cell types. One of them is sperm. We were sitting in the therapist's waiting room, waiting for Dubya, while TH perused the book. Suddenly--and there were a few other people in there lucky enough to hear this--TH hollered out, "Sperm! What is SPERM?!?" I almost died from laughing. I told him, "Those are a certain kind of cell that boys and other male animals make." "Am I making those right now?!?" he asked, pretty excited at the possibility. Hmmm, I thought, considering his crytorchidism, etc. Out loud, I said, "I don't think so, sweetie. You'll probably start doing that when you're a teenager." God help us.

The next page featured a huge egg, fending off some attacking sperm. I confirmed for him that all female animals make eggs. "You make those on the inside?" he queried, obviously wondering if we secretly laid them somewhere, like chickens. "Yep." I said. "That egg looks like it could beat those sperm up," TH observed in his unmodulated, non-waiting-room voice. "Yep," I said. "That's quite a competition going on there." I'm sure that the other folks now assiduously ducked behind their magazines appreciated this little impromptu lesson in gametes.

Therapy boy Dubya, who's been aware of the "girls don't have penises" difference for quite some time and behaved as if laden with ennui during most of our penis epiphany discussion, has a different sort of sex-related issue. Belly buttons. Bikinis. Barbies. Pink. Dora. Anything girl related, he angrily and bitterly denounces as "stupid." He actually will throw himself onto the couch, cover his ears, and moan loudly like Dustin Hoffman in Rain Man if a commercial involving "girl" toys comes on. It's truly disturbing to witness. He can't walk through Target without losing it because there are so many girl-related things there, right up front. If he happens to see anything womanly on a magazine cover, he perseverates on it for the rest of the day, freaked out that he saw it, that it stamped itself on his mind, made him feel...that way...whatever way it is that makes him so uncomfortable.

While TH's behavior and revelations are somewhat entertaining, we find Dubya's issues more disturbing. Based on my observations of other boys his age, his behaviors seem far far out of the norm. He is compelled at every sign of something "girl" to express his hatred for girls ("except for the ones in the family," he always adds as a sort of afterthought), for all things girl. He states emphatically, almost spitting the words, that "girls are so stupid." Really. It's deeply disturbing to me. If a girl comes near him, he freezes, then runs away, then compulsively mutters repeatedly about how much he hates girls, how stupid they are. Yes, I've informed him that I am, in fact, a "girl" and that his words offend me. That's where the exception of "except my family" comes from. And yes, I've told him that the exception is not enough. But, this is a compulsion for him, no different, I think, from his tics. He has to say these things to get rid of "those feelings" that give him so much discomfort. It's like an exorcism chant for him.

Where does it come from? I don't know. The Viking isn't, I'd say, exactly what you'd call a ladies' man (those of you who know him, I can hear you laughing). He's the kind of man who was so oblivious about the constellation of women circling him with avid interest when I met him that I later had to explain to him the valiant effort I exerted to overcome all that competition. Men. They have no appreciation of what we go through.

Anyway, the Viking as a young Viking was probably more like TH, pretty oblivious about any girls who liked him and also probably a little unsure about women. Lots of men are. But Dubya...this is something deeper, more troubling. I've made his therapist aware, but once-a-week therapy sessions seem insufficient for something this ingrained, this incessant. And I, the reproductive developmental biologist who can easily explain penile development but am baffled at this obsessive-compulsive repulsion, am turning to you, trusted readers in the blogosphere, for your insights. Any experiences, advice, insights, or tips are welcome. In trade, I can answer any questions you may have about penile development.

Hey! Pseudoscientists! Leave them kids alone!

The name alone makes no sense: "Scientific Link to Autism Identified." What does that even mean? As opposed to a "nonscientific link"? A "religious link"? A "philosophical link"? A "chain link"?

And it simply gets worse from there. First of all, if you can find a worse example of a news release, please direct me to the link. I used to write these things as a public information officer. This...thing...is...not news and should never have been released.

But I'm here to talk pseudoscience. First, I refer you to one of my favorite rundowns on what constitutes a pseudoscience. It's great, and I use it to teach my students to recognize one when they see it.

I'd say that this "release" fulfills the following pseudoscientific criteria:

Criterion: Pseudoscience deliberately creates mystery where none exists, by omitting crucial information and important details.

Example: There are really no details whatsoever in this release, only the vaguest of generalities about "homeostasis," etc. But boy, is it mysterious! A universally applicable model that explains EVERYTHING all across SCIENCE! Oooh. Mystery!

Criterion: Pseudoscience argues from ignorance, an elementary fallacy.

Example: "By looking at extensive scientific literature they discovered a cascade of hormones that emanate from the brain (hypothalamus)." Yes, that "cascade" (not really a cascade from the hypothalamus, by the way, but a cascade involving hypothalamic hormones) would be part of a long-established suite of axes involving the hypothalamus, discussed in all undergraduate biology textbooks.

Example: "While the entire scientific community knows that homeostasis exists, this tacit knowledge has not been converted into a step-by-step, replicable model." Eh?

Example: "If it hadn't been for so many parents insisting that vaccines were responsible for the condition..." Disproved. Mechanistically, correlatively, epidemiologically. Period.

Example: "Challenged by several of The Center's advisors, members of the team decided to test the efficacy of the model to determine if the disruptions that cause autism could be identified." No explanation for why this focus on autism. Why would ANYONE testing a newly devised model select an obviously complex condition with a multitude of influences and any number of susceptibility genes, rather than doing what any scientist would and should do, which is to select more straightforward mechanisms to demonstrate the validity of the model? There's just not enough out there about autism, much less autism and the hypothalamus or autism and homeostasis or autism and glycine (for God's sake) to even justify initiating this search. If they've really modeled this for a lot of disease states, as they assert, why the release just for autism? And my biggest question is, Why would the "center's advisors" "challenge" the team for autism, specifically? What is the dog in THAT hunt?

Criterion: Pseudoscience argues from alleged exceptions, errors, anomalies, strange events, and suspect claims—rather than from well-established regularities of nature.

Example: "If it hadn't been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine."

Criterion: Pseudoscience makes extraordinary claims and advances fantastic theories that contradict what is known about nature. Add to this another criterion that pseudoscience often promises resolution to several broadly different problems, such as curing cancer and ADHD.

Example: "Because of its universal applicability, our Life Sciences group has already used the model as a tool to identify highly probable causal paths for several illnesses and disease entities. Autism was one of most difficult illnesses The Center had attempted to analyze."

Example: "To the amazement of the group, it became apparent that this pattern of corollary relationships could be applied to scientific processes for maintaining equilibrium (homeostatic relationships) throughout all of science; from subatomic particles to chemistry as well as between biological substances." It's like they've finally established the reality of the Higgs boson or something. I'm surprised they didn't call their model the "God Model" while they were at it.

Criterion: Pseudoscientists invent their own vocabulary in which many terms lack precise or unambiguous definitions, and some have no definition at all.

Example: Well, the title of the release, for starters. But how 'bout that opening graf? "The Center examined the neuroscientific dynamics of logic and emotion in decision making while researching neuroscience in business..." and so on.

Example: "By looking at extensive scientific literature they discovered a cascade of hormones that emanate from the brain (hypothalamus). This same pattern of correlations was again apparent throughout the cascade. The group added a research biologist and started to test the pattern on genes (proteins)." What is "extensive scientific literature"? Is it like the War and Peace of research papers? How about that "cascade of hormones emanating from the hypothalamus"? (A cascade, eh?). And my favorite..."test the pattern on genes (proteins)." Well, which is it? Genes or proteins? 'Cause those are two different things, ya know. Very very different things.

Criterion: Pseudoscientific "explanations" tend to be by scenario.

Example: The entire news release is just a scenario, a story, with absolutely no data whatsoever except that gelatin is 21% glycine.

Criterion: Pseudoscience deliberately creates mystery where none exists, by omitting crucial information and important details.

Example: Can you find any details in that release? I can't. All I find is a lot of nonsensical verbiage, and then this quote: "The details of the disruptive process are somewhat complex and not conducive for explanation in a press release." Really? 'Cause even people who write for physicists manage to construct reasonably comprehensible news releases from some of the most complex studies and findings in science.

Finally, I come back again and again to some questions. (1) Why did they "model" autism? (2) If they "modeled" all these other diseases, why is autism the only one that warranted a news release? (3) Why does this fellow reference parents' insisting that vaccines are responsible for this "condition"? (4) Who are these "advisors," and where did this disproved association between autisms and vaccines enter in? This entire thing, from the SEO-oriented title (Scientific! Autism! It's got to be true because it says Scientific and Autism!) to everything it states (and doesn't state), reeks.

And finally, (5) can the pseudoscientists find some other group of people to harass? Like, say, Creationists? I've decided that vaccines cause Creationism. Can someone go model that?

A new nonsense afoot

Read this one today. It starts with several paragraphs of garbage masquerading as science-speak (e.g., "By looking at extensive scientific literature they discovered a cascade of hormones that emanate from the brain (hypothalamus)." Really? Gee. That'll be a huge surprise to all those endocrinologists out there.

Then it gets to the "point," which appears to be that some vaccines contain gelatin and that gelatin is 21% glycine. It goes on to state the following, quoting a guy identified as "not a member of the scientific community" (clearly; he's actually someone who once had oversight of an enormous office complex or something) with, mind you, not an iota of evidence, information, reference, or anything else to support it:

It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body. It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today's 'classic' autism.

I have NO idea what "responsible for the absorption rate of certain classes of cells throughout the body" is even supposed to mean.

At any rate, glycine is most active in the spinal cord. Spinal cord, brain stem, retina. It's biometabolized from another amino acid, serine. It's actually required along with glutamate to co-activate NMDA receptors (and has been tried intravenously, therapeutically for related disorders), but serine does this even better. It's in a million products we ingest and take and foods we eat (stay away from that ostrich and crab, people!). It's required for appropriate infant development in good-sized amounts and produced endogenously (i.e., we make it ourselves, from serine), and it's been used repeatedly and frequently and intravenously for decades in pre-term and low-birth-weight infants as a supplement to encourage growth:

Of all the amino acids, the ability to form adequate amounts of glycine is likely to be the most critical during fetal and infant life.

It's absorbed well in the gut (it's a pretty basic and versatile amino acid), too. And the bottom line is, the nervous system is far, far more complicated than, "Hey! Here's a little extra glycine today! Let's all go haywire and redo everything! Even though our bodies make tons of this stuff anyway! And we need it!" Just doesn't work that way.

But here's the kicker: It's a major component of chelation treatments for autism. The page linked says, and I quote, "It appears that adding glycine to every dose of DMSA increases mercury excretion."

Check out more on this from the chelation echo chamber here, here, and here.

My favorite is from oralchelation.com, which says, and I quote again, "Are there any side effects or interactions? No clear toxicity has emerged from glycine studies; however, individuals with kidney or liver disease should not consume high intakes of amino acids without consulting a healthcare professional (italics mine)."

So...if glycine is to blame here...what do we say about all this chelation to "cure" autism? Was it helping with the excretion of all that mercury in those vaccines but still causing autism? This pseudoscience stuff is so confusing.

ETA: This post is getting a lot of retweet action (thanks, everyone!) in which I'm described as a "real scientist." I am a real scientist, in that I've got the education all the way through postdoctoral training, 30+ research publications, and bench training of many years. That said, I'm just one person, one interpretation. I always encourage folks to dig in, do research of their own, ask questions that arise from the answers they find (new questions always pop out of new answers), and really get to the bottom of any claim, from me or anyone else. I'm the first to say that lack of sleep, misreading, being in a hurry, and a myriad of other things can render something I write inaccurate. In all things science, always get a second opinion, if not many more. Cheers. ~Emily

Empyting the grudge bucket

I don't like to hold grudges. But as a woman (and I am one, in spite of my lack of girly-girlness), I apparently tend to process experience through my emotional centers more than men, which means that I have excellent emotional recall of my experiences. I didn't just make that up. There are studies. It seems that this is the explanation for why women allegedly remember every detail of an argument and men don't. I'm not saying that these stereotypes and generalizations are true. I'm just paraphrasin' the science and news media types.

In spite of my distaste for grudges, some physiological pathway I harbor has a few negative events that replay in my head repeatedly, in spite of myself, usually thanks to visual triggers I see daily. These probably don't seem like big things. They really weren't in the grand (or even insignificant) scheme of life. But they're so ingrained as negative in my psyche that the thought of the people associated with me repulses me. If I were to see them again (and sometimes, I do), I'd have a very hard time even shaking their hands. And they probably don't even know that.

I've got a friend who calls her collection of grudges her "grudge bucket," as in, "I dumped my grudge bucket all over my husband last week." I don't want to do that to my dear Viking, toward whom I have no grudges (and I'm reminded of the description of what character really is, as spoken by John Cusack in Hi Fidelity). So, rather than dump a bucket of grudge on his head, I've decided to dump it here, on my blog and any hapless readers who wander by. In keeping with the Hi Fidelity list, I give my top-five grudges arising from ephemeral contacts with people I likely will never, ever see again. I hope.

1. You, the school director, with whom I had a job interview for a teaching position. You're the one who told me, with a look of utter disgust on your face, that you just "don't have any interest in taking on students with learning differences." After I'd told you about my son. You and your "academy" can go ... well, this blog is generally rated PG, so I won't say anything more.

2. You, the woman, who informed me dismissively on a playground one day after I described to you that my son has Asperger's and what that is, that you "don't believe in labels." I've mentally labeled you, and you probably wouldn't believe what that label reads. I know that the real reason you said that is because you think that we use autism as an excuse for our son's behaviors. We don't. But it's absolutely the reason for them.

3. You, the parental amalgam who emailed and visited the school counselor, principal, and teachers, demanding that my "psychotic" son, whom you referred to as "that kid," be removed from the school and committed. By the way, your children continue to verbally pummel my child with death threats.

4. You, the parent at the SF play gym who queried my choice of Goldfish as a snack for my child, asking me with incredulity why I wasn't aware that they had trans fats in them. Hey, you know what? They don't! They did until 2004, but now they don't! And even if they still did, it's still none of your business!

5. And finally, you, the parent who summoned me from my car after a soccer game to falsely accuse my son of hitting yours in the stomach. Turns out, as we established on the spot, wasn't my son. Next time, I'd suggest being more sure of your witness identification process and less sure of yourself. You selected my son because he was acting "weird" out there. I get that, and I don't like it.

This list is actually quite brief compared to the multitude of similar encounters we've had over the years. I'm sure many parents who read this and many autistic people have experienced the same. There's a casual sort of OKness still about offhandedly slamming people with special needs or negatively judging their parents, secure in the knowledge that you and your perfect family would never be like that. It parallels the ongoing OKness of brushing off the needs and personhood of other historically secondary groups, like, say, women and their healthcare. And none of it is actually OK.

But that would be another post. For another blog.

What have you got in your grudge bucket?

Follow-up on Thoughtful House suit

The Austin mother in the Thoughtful House-related chelation suit has made available a statement regarding her situation, which you can find here at no2chelation.org (correction!...should never post late at night). Feel free to drop off some dollahs while you're there.

She notes that:

On this waiver Dr. Jepson also refuses to make any statements as to the purpose or expected goals of the treatment.

And:

IV Chelation treatments and the drugs used are not covered by insurance. Dr. Jepson sells these treatment packages to hopeful and desperate parents for as much as tens of thousands of dollars, which go directly to Thoughtful House. Thoughtful House also sells the expensive chemical compounds used in these treatments to the consumer either directly, from the clinic, or through arrangements with pharmaceutical companies such as Lee Silsby Pharmacies.

Check out the top ad at the Lee Silsby Pharmacy link and note their top navbar offers up a link solely devoted to autism. And get a load of their splashy slideshow of just how they go about prepping a DMSA suppository. Woo. Hoo. Also, I was interested to learn that these treatments are apparently repeat treatments involving sedation. Lovely. Quite a little cottage industry going here. The benjamins are floating all around.

Give it a read. Regardless of who's administering the treatment and regardless of the treatment, it should be inconceivable that any court could force parental consent to experimental, unproven treatment with clear risks that include death, as stated in the consent, especially for a non-life-threatening condition. Let's hope the court finds it inconceivable, too.

The wrong math for autism?

We've been living with Everyday Math now for a few years. I detest this math program for many reasons.

1. It asks us to use household goods that cost money, such as shaving cream, flour, vegetables, and rice.

2. It requires us to own/assumes that we own household goods that cost money, such as magazines with advertisements.

3. It is packed with jargon specific only to Everyday Math and not translatable without a code book.

4. It often requires the parent to spend more time looking for the crap needed to do the homework than it requires to actually do the homework, including rulers, tape measures, tape, a decent pair of scissors, newspapers (often dug out of the recycling bin at the curb), etc. This drives me insane.

5. It is nebulous, verbal, open-ended, and irritatingly imprecise in its instructions.

6. It has required us to learn something called partial sums. My husband is a programmer who has completed differential equations, all manner of calculus classes, matrices, and other painful-sounding courses, and he joins me in bafflement over the necessity of learning partial sums.

7. ETA: It also presents about 17 different ways of learning one concept, which is not useful for the concrete, discrete learners of the world.

These last three items are the ones that affect our oldest child most significantly. Everyday Math is big on estimations and "ballpark" values. TH, who does fairly complex problems in his head but has no idea how he does them, struggles mightily with this vagueness. He doesn't understand why we are supposed to estimate or ballpark values when he knows the actual value that is the answer. Honestly, I don't understand either. I get that this is a way to round to a value near the true answer and then backtrack a few whole numbers to the correct answer. But if your brain serves up the correct value in the first place, this step is simply confusing and unnecessary.

Then there are the assignments that involve finding your answer, then answering the following question: "How do you know your answer is right?" WTF? Um, because 2 + 2 = 4? I have no clue how a student is supposed to answer that, and neither does TH. He can get the math part right, but struggles with this open-ended, nonsensical verbal garbage. Luckily, his teachers don't seem to hold that against him. I'd hate to see what happens with kids like TH, though, in a prescriptivist's classroom. They'd get the right answer but still receive only half credit.

We are, I think, very concrete when it comes to math. I understand this idea of going at math learning from different angles. I do. My own way of doing math is highly idiosyncratic, but it works for me even if explaining it would be a challenge. TH operates the same way.

Liz Ditz tweeted a link to an op-ed piece in the Philadelphia Inquirer in which the expert educator points out these very disconnects between this sort of "Reform Math" and children with autism. As the writer points out,

Under reform math, the next generation of autistic math, computer, and engineering buffs is languishing. They lose points for failing to cooperate in groups, explain their answers, and comprehend language-intensive problems, often getting lower grades than their peers. Worse, reform math holds them back mathematically - often way back. By the time they reach fifth grade, mathematicians have estimated, students of reform math can be up to two years behind their non-reform peers.

It's like the bad music teacher who effaces any native joy a child might take in music. And my child, who can readily multiply 14 x 3 in his head and give me the answer in about a second, tells me daily that he "hates math." He doesn't really. What he hates is Everyday Math. The math program that is suffocating the very real enthusiasm he has for numbers. And his mother shares the sentiment.

It was only a matter of time

A local father is suing the mother of his autistic child because she refuses to sign consent to have their son treated at Thoughtful House with intravenous chelation. The parents are, of course, divorced. The mother has no lawyer, and the father has primary custody. That alone has proved fodder for fallacious arguments in the comments to this story that her not having primary custody in some way supports the father's contention that this child should be subjected to a "treatment" that is medically unproven and has killed previously.

I blog a lot about tradeoffs and risk-benefit analyses as a necessary part of every parenting decision. Given the utter lack of studies demonstrating any efficacy of chelation in ameliorating the manifestations of autism, there's not a cost-benefit analysis to consider here. While the list of reactions to vaccines can be daunting, the risk-benefits equation is pretty clear about where the weight of the decision lies. But chelation for autism simply yields zero confirmed benefit, given the lack of scientific support for its efficacy as an autism "treatment," as this attests. Confronted with that zero on the benefit side, how could the following list of potential complications result in anything but a "hell, no" following rational consideration?

Thoughtful House's IV chelation consent form, which Juli Martinez provided to the American-Statesman, includes a long list of possible side effects that include intestinal disorders, joint pain and, in rare cases, "allergy, anaphylaxis, arrhythmia and even death." It adds that the treatment offers no guarantee of success.

The child has been having suppository chelation treatments already, which the mother claims have had adverse effects on their son. The judge is waiting to hear from the Thoughtful House doctor overseeing this treatment, Bryan Jepson. I'd also suggest that the judge review the vaccine court rulings that essentially excoriated one doctor associated with Thoughtful House.

I say bring this one on. Let's have an airing of these practices. Let's have a public weighing in a court of law of the risks against the benefits, with justice holding the scale.

And sometimes, kids say nothing at all

Today, Dubya had his first appointment with his therapist. Nice woman. Used to this group. Vast experience with this age. Knows his issues. He went in, we had introductions. He stiffened visibly, dramatically. Made his frozen Harpo Marx face. I departed.

Forty minutes later, she emerged with him. The word on the session? There were none. At least, none from Dubya. He was completely silent, monk like, the entire time. Even as he devastated sand forts with the army men she made available, he did so in silence, like a 1920s newsreel. This, the child whose urge to speak is so compulsive that it gets him in "trouble" at school several times a day. This, the child who tenses up every movie night because his compulsive talking makes it hard for the rest of us to watch the chosen film.

I paid a C-note for that silence. Had we been at home, I might gladly have forked over that amount for the blessed change. But in therapy, you're supposed to talk, right?

Next week, Dubya will talk. Because before he goes in, we will talk about how he's going to talk. I've got better things to do with 100 bucks than pay for Cistercian silence in therapy when I'm not around to enjoy it.

Kids say the darnedest things

Or perhaps that should say "the damnedest things." Literally.

Girls are taunting my son. According to the Viking, girls do this to boys. I don't recall having done this to boys as a girl, but perhaps my memory is faulty.

I certainly don't recall ever having done the following.

Girl to TH: You know what kind of game I like best?

TH: No. What?

Girl: I like games where you die.

TH: OK. But if I die, I'll just go to heaven and hang out there.

Girl: No, you're not going to heaven. You're going to hell.

I guess it's a good thing that hell isn't a part of our household doctrine. Because if it were, I'd...well, nevermind.

The Mercola "Facts" redux. Now with inferences and links updates!

1. "Fact": Multidose vials of seasonal and injectable H1N1 swine flu vaccines contain MERCURY (all caps theirs), which is a "known neurotoxin."

Inference: Getting a flu shot will poison your brain.

Observations: The actual compound of the preservative in question is called thimerosal. It consists in part (about half) of a kind of mercury called ethylmercury. Millions of doses of the seasonal vaccine are made available that do not have thimerosal. If you're concerned about the multidose formulation, ask about single-dose formulations. Or get the nasal vaccine, which is not made using thimerosal. And "mercury" is not a monolithic term describing any and all forms of mercury. Routes of exposure, chemical composition, and concentrations all play a role in whether or not it will cause harm. Water is a great example. Ingested, it's OK...unless you ingest too much. Inhaled, it'll kill you. Topical exposure is OK...unless you're exposed over a very long term. Oh, and molecular content matters, too. The difference between ethylmercury and methylmercury is a matter of a couple of atoms. No biggie? Well, the difference between H2O (good old water) and D2O (heavy water) is a matter of a neutron...yet heavy water is highly toxic in any number of ways in sufficient concentrations. In biochemical reactions, a small change can make a huge difference.

2. "Fact": Some "swine flu" (quotes mine) vaccines contain formaldehyde and exposure to formaldehyde has been shown to increase the risk of developing certain CANCERS (all caps theirs).

Inference: Getting a flu shot will give you cancer.

Observations: This old chestnut? Still? Formaldehyde is a carcinogen. So is estrogen. Oh, and enjoy this little read about the naturally occurring carcinogens in our diet. Or google "aflatoxins" and then stop eating peanut butter. The issue is, once again, that it's the dose that makes the poison. Oh, and the fact that the body actually makes formaldehyde, too, more than you ever receive in a vaccine. Bottom line: the amount of formaldehyde in vaccines ain't gonna give you cancer any more than that peanut butter sandwich will.

3. "Fact": It is unknown whether or not it is safe to give the "swine flu" vaccine to all pregnant women, children, and adults especially if they are chronically ill or sick at the time of the vaccine.

Inference: Getting a flu shot is a total crapshoot if you're a heartstring-tugging population, and authorities are trying to give them to EVERYONE anyway.

Observations: First of all, look at this list of clinical trials. And then check out the results of this trial. Looks like (a) we've got trials people establishing the safety and (b) we've got trials specific to pregnant women with real numbers and real results, not made-up "facts." This "fact" is also misleading because no one claims that it is safe to give any vaccine to "all" individuals in a given population, and there are clear clinical guidelines for determining who should receive a vaccine and who can have a nasal vs. jab vaccination.

4. "Fact": After the "swine flu" vaccinations of 1976, there was an increased risk of developing Guillain-Barre syndrome (GBS).

Inference: Getting an H1N1 shot will give you GBS, too.

Observations: Yes, that's true--the risk appears to have been about 1 in 100,000. But 1976 was 33 years ago, and this vaccine is emphatically not that vaccine. Once again, this "fact" is simply meant to imply an assertion on the part of public health experts that has not actually been made. The "swine flu" vaccination of 1976 is simply not relevant here.

5. "Fact": Guillian-Barre and "brain inflammation" has (sic) been reported after seasonal flu vaccination.

Inference: Getting a flu shot will also give you GBS.

Observations: From the CDC, "In most studies, no association was found, but two studies suggested that approximately 1 additional person out of 1 million people may be at risk for GBS associated with the seasonal influenza vaccine." Two studies of several. One in a million, literally. Better odds than those for being hospitalized or dying from the flu, that. For a great parsing of the relevance of GBS in the context of flu vaccines, read this.

6. H1N1 vaccines have not been evaluated for their ability to cause cancer, impair fertility, or damage genes.

Inference: Getting a flu shot may render you infertile, give you cancer, or "damage your genes."

Observations: This is another misleading statement, meant to imply that someone has totally dropped the ball here in a huge rush or that these are things that vaccines might do to you. Neither of these is the case. The Strategic Advisory Group of Experts to WHO has found that studies in experimental animals (human studies would need to be longitudinal) with all forms of influenza vaccines have found no effects on fertility and no harm to pregnancy or to the fetus. The contents of these vaccines are well tested over decades for their carcinogenic and mutagenic properties at relevant doses. For a review of the relevance of concentration, exposure routes, and timing of exposure, please see 2, above. You don't develop cancer from an acute, very low-dose exposure to any of the ingredients of influenza vaccines and more than you do from eating that peanut butter sandwich.

7. "Fact": It is not known whether the H1N1 vaccine can harm the fetus of a pregnant woman.

Inference: Getting a flu shot will harm your fetus.

Observations: See 5, above, and 3. And remember that what is known is (a) having influenza while pregnant is not a good thing for the mother or the fetus, and (b) this particular influenza preferentially severely affects pregnant women. Mercola argues that these women are also obese or that many are, and that this somehow negates the need for pregnant women to have the vaccine. I'll be walking on that one in another post.

8. "Fact": One manufacturer product insert for the H1N1 vaccine states that immune response was evaluated only in 31 children between the ages of 6-26 months.

Inference: Authorities have tested this shot on only 31 people!

Observations: Obviously intended to scare the hell out of anyone--and I'm still struggling to figure out what their dog is in this hunt (beyond the obvious fact that they have something--books! books! books!--to sell). See above, 3, for the list of clinical trials. For updates on the results of these trials, read here. There is no trial or safety-testing vacuum here.

9. "Fact": The live virus nasal spray H1N1 vaccine is not recommended for pregnant women or for children under age 2 or anyone with a history of asthma.

Inference: Getting a flu shot is so completely dangerous that they don't even want pregnant women or children or asthma sufferers to have one.

Observations: Doh! They were soooo close. Of course, they're still trying to freak people out, so they mention ONLY children, pregnant women, and asthma. The well-disseminated clinical guidelines for this nasal vaccine--which are no different from those for seasonal flu vaccine--are actually more detailed than this and include, in addition to the above heart-string-plucking populations, people 50 or older (so hard to use them for fearmongering), people who are at high risk for complications from flu (e.g., chronic heart or lung conditions, kidney failure, diabetes, immunosuppression), children under age 5 years with a history of wheezing, anyone who's had GBS recently, and anyone who's allergic to chicken eggs. (finally corrected HTML error there. Sorry).

10. "Fact": The H1N1 strain has not been associated with more deaths than previous seasonal flu strains.

Inference: The same number of people are dying from this flu, so why worry? You haven't died from seasonal flu before, now have you?

Observations: It's funny how you can use pregnant women and children to scare people and then avoid mentioning them at all for a different purpose. The fact is, more pregnant women and more children are dying from this flu. More otherwise apparently healthy people. Seasonal flu has a certain predictability about it in terms of whom it kills that makes us complacent even as tens of thousands of people die from it yearly. But H1N1? It defies those predictions and targets healthy groups. That and its potential to go virulent are what have public health experts urging vaccination.

People are free, of course, to read the Mercola "fact" sheet and be manipulated and to try to use it to manipulate others. Or, they're free to get into the messy details and really examine the true facts--facts about biochemistry, about bioavailability, about carcinogenicity, about what words truly mean, about sins of omission and commission, about accuracy in language and in science--and draw conclusions accordingly.

Other links (added as they arise):

• A news release confirming risk to pregnant women (11/3)
• H1N1 expected to cause more deaths in northern winter; 5,712 dead so far worldwide (11/5)
• A mom reconsiders. USA Today (11/6)
• From HuffPo: A question of harm (11/7; thanks to Liz Ditz via Twitter)
• My blog post, copied and pasted in its entirety (don't remember giving permission for that), at Democratic Underground (11/9). Some seem unable to understand the meaning of "sins of omission and commission."
• A WaPo blogger weighs in on the confusion (11/9)
• And so does MSNBC (11/9)
• I can't leave out LBRB's takedown of AoA and the latest on H1N1 in the UK (11/9)
• From the New York Times, quoting Paul Offit (reg. req'd?) (11/9)
• A case representing every parent's fear when vaccinating, including mine. Why do I vaccinate? Because the risks of not doing so far outweigh vaccine-related risks. Whether or not this case of GBS is truly vaccine related has not been established, but with every vaccine, I've watched my kids carefully afterwards for signs of a severe reaction. As any rational person knows, a very few people do have them. (11/11)
• From MSNBC: US flu deaths at 4000, number greater than previously reported (11/12)
• Bill Maher has shown his ass on HuffPo in a shallow, error-riddled screed against vaccines. Rational people respond, collated by Liz Ditz over at I Speak of Dreams (11/17)

Motor skills and autism

Categorized under "Things that make you say, 'Duh,' in the morning"--Autism is apparently linked to motor skills problems.

Really?

I guess now I can call the phys ed teacher at TH's school and tell him that. TH, who has notable upper-body weakness, hypotonia, all the things that parents of autistic kids know well, was "disqualified" from some fitness tests this week. Not the part that involves using the legs--his are strong and long--but the part that requires pushups and pullups. Couldn't do a single one. So, he told me, his phys ed teacher told him, "You're disqualified."

Add to that his fine motor issues, which include his persistence in using a fisted grasp with pencil. Add to that his hypermobility--women in Hollywood would pay millions to have his collagen--and you've got a kid who's all angles and awkwardness.

His writing almost halfway through third grade is almost completely illegible. I look at the writing sample pictured in the story and think, "Hmmph. That's nothing." I should send in some of TH's handiwork. It's become especially entertaining now that he's chosen to write backwards, a la Leonardo Da Vinci. I've included a sample of his forward writing from this week for illustrative purposes.

"These kids are going to get picked last for kickball," quoth one of the experts in the article. Not only that, but these kids are not going to be able to swing on their own even in third grade. They're going to wander around the playground alone at recess because they can't play basketball or football. "The motor component probably makes things worse," the expert further quoth.

Um, yep.

There's also this from the piece:

Other researchers say motor skills may offer a way to help spot children with autism as early as the first few months of life.

A study of babies who were later diagnosed as autistic were late reaching milestones such as sitting up, standing on their own and walking, says Dr. Sarah Spence, a pediatric neurologist at the National Institute of Mental Health who helped conduct the study.

TH did have these delays, but we ascribed it to his being an unusually large child with an unusually large head. Little Da had even more significant delays. His fine motor skills now are, however, relatively fantastic, right down to a near-tripod grasp of pencils and an ability to zip his own pants and put straws into individual milk boxes. Dubya has always been all tripod, all the way. He falls flat on his face all the time, we but think that's because he forgets to turn off his anti-gravity servos when he returns to Earth from Planet Dub.

So, for how many of you parents or autistic adults is the headline, "Writing Study Ties Autism to Motor-Skill Problems" a duh moment for you, too?

Um, no thanks, Facebook

Facebook just offered me this as an advertisement option. Usually, I get ads telling me that President Obama wants me to go back to school (nooooooo! I've been there already!), or ads insinuating that at my advanced age, I need to buy stuff to ward off aging. I just ignore these.

I clicked on this ad, curious because I saw the name of super-misogynist extraordinaire J.B. Handley on it. The blurb on the Amazon.com page reads as follows:

Matthew Faiella sat comfortably in the exam room of the small Costa Rican clinic. Although he couldn’t really comprehend the event about to unfold or the journey it took to get him to this moment. His parents reassured him everything would be fine. It was February of 2008. Matthew was about to become one of the first children in the world to receive cord blood/adult stem cell injections for autism.

Holy shit. Stem cell transplantation for autism. In Costa Rica. The mind boggles. Silver treatments. Gold treatments. The standard HBOT. The result? A book called Out of the Darkness. It likely will come as no surprise that this is an AoA fave. The mother, it seems, is a breast cancer survivor. The child, it seems, is a survivor of many many other things.

A quick review of the table of contents revealed a dire need for some professional copy editing. I'm wondering if the contents reveal a dire need for some scientific review. And no, I'm not going to read it. I've got retinas and synapses to preserve here. After all, as FB gently notes, I'm not getting any younger.

The secret's out

TH came to me last night and asked, "Is my mouth bleeding?"

Indeed, it was. All over everything. Dubya, it seems, in a moment of late-evening exuberance, had executed a gymnastic maneuver on the lower bunk of their bed, landing with his butt right about TH's chin. TH happened to be holding his DS about 10 inches above said chin. DS slammed straight into mouth and literally sliced off a crescent-shaped piece of TH's gum over his right incisor. Sorry. I know that was gross to read.

Most kids would probably have screamed, either from pain or anger or surprise or all three. TH? Got up, came downstairs, and asked me that question, calmly, even as blood pretty much poured from his mouth. "Did that hurt?" I asked. "No," he said. "Does it hurt now?" I persisted. "No," he said. "I didn't feel anything." But the blood kept coming.

A sterilized pair of scissors, some ice in a clean rag, and a bit of rinsing later (I threw away the gum slice), we sat in the home office and chatted, at his request. It's the fourth night in a row of such requests. I posted recently that when TH does this, among other signs, there's something going on. Something that will emerge with time, usually during one of these chats.

Some of it emerged a couple of nights ago, secrets so secret that I won't be revealing them here. But last night's information was more of a universally common experience for some children, especially some on the spectrum, so I'm sharing them. I also do so with the firm and unshakeable knowledge that not one of the things quoted below (except possibly the first one, but we all are) is true.

Children at school--not all, certainly, but a damned good-sized cooperative of them--say the following things to TH, usually in those unstructured, adult-distant situations of school, like recess, at the water fountain, in the after-school car line:

"You're weird."

"I hate you."

"You stink."

"You're disgusting."

"You're gross."

"You're ugly."

After informing me about this, with a completely flat affect, bloodied rag to his lip, TH went on to say that he figures that when it comes to popularity, his BFF is somewhere near the top of the list, while he, TH, is somewhere near the bottom. I think he got this idea of a ranking system from Diary of a Wimpy Kid.

"Does that make you feel bad when they say things like that to you?" I asked him.

"No." Flat affect. The only thing I can detect that lets me know that answer is more equivocal than it sounds is that his eyes move around a bit more.

"It doesn't bother you? What do you feel when they do that?"

"Nothing."

There were no springing tears when he said that, no watery eyes, no readily apparent efforts to suppress emotion. But I know my son. I saw those eyes get on the move with each denial. And I know what the last week has been like as he tried to regulate and process and effervesce away all of the feelings that these experiences unlock for him. And even though he claims to have felt nothing, just as he did about his mouth wound, I know that inside, his psyche is bleeding all over the place. Whose wouldn't be?