Tuesday, August 31, 2010

Say what, Mattel? Say...Bullshit

You can read about it here. Mattel took Super Duper, a company that makes communication aides for children who, you know, can't SAY things, to court for using the word "SAY" in their naming. The upshot of this adventure is that

The Fourth Circuit Court of Appeals has ordered Super Duper to pay $1 million of its profits and $2.6 million in attorney's fees to Mattel (a $5.4 billion a year company), take SAY and AND SAY out of seven product titles, and destroy $500,000 of special needs products because they have the words SAY and AND SAY on them.

You know why this company uses "SAY" in their product names? Because it's teaching autistic kids to SAY things. Take the "Fold and Say Social Skills Book." Look out, Mattel. That's surely gonna hurt those Barbie sales. I know math is tough and all (according to Barbie ca. 1992), but are understanding and compassion also beyond your ken? Heh. Ken.

Yep, that's right. One of the biggest freaking toy companies in the world has reached into the pocket of a company that makes products for autistic children and robbed them blind for using the word "SAY."

Say what? Say BULLSHIT, Mattel. Say BOYCOTT Mattel. I urge you to spread the word on this so that this toy company can't SAY that other companies can't use SAY in their products. By the way, that stupid See 'n' Say toy that they made before I was born? It sucks. Kids get bored with it in minutes. I mean, there's only so many times you can hear that chicken. Yes, I SAID it.

Hmmm...wonder if there's any infringement problem with using other forms of SAY. Doesn't matter. "Fold and Said Social Skills Book" just doesn't have the same ring to it.

Thursday, August 26, 2010

How do you start school?

Now that school is starting all over the country (the US, anyway), I've noticed an interesting dichotomy in the social media world between how parents of those good ol' regular kids are handling it and how special needs parents are doing.

On Facebook and on Twitter, I saw a lot of verklempt posts with pictures of happy smiling children waiting on buses. In spite of some of the verklemptedness, many parents posted about the relief they felt that school had started, how ready they were to see their kids hop on that bus and go spend a day somewhere else after a long summer of family togetherness.

And then I saw another grouping of posts, these focused on worries. Worries about teachers, safety, bullying, IEPs, principals who don't call back or who do and seem confused, eligibility issues, bus issues, and inclusion issues.

Guess which group of postings came from the special needs parents.

I know. It's pretty obvious. But it does draw a stark contrast between the way each group lives their lives.

How about us, the DMFPs? Well, my officially special needs child started school yesterday. Right here at home, in my office. No bullying. No IEPs. No dismissive, unconcerned, or unresponsive principals. No bus. No aides. No bad-fit teachers (unless that's me). My other school-age child had one bus issue that we've handled, and...so far, so good.

So, I have to say, it's going pretty well. If we were still in brick'n'mortar school with TH, however, I'd fall squarely into group 2. Just thinking about our previous first-day-of-school experiences conjures memories and feelings I'd rather forget. I'm pretty sure TH would rather forget, too.

Tuesday, August 24, 2010

Are there really physical features of autism?

A study that came out in May compared 224 autistic children with intelligence in the normal range and 224 age-matched non-autistic children. According to their findings, several features occurred among the group of autistic children but were absent among the neurotypical group, including:
  • Brachycephaly (flat, wide head; TH had this from back sleeping, but his fontanelles didn't close until very late, rather than too early)
  • Mouth asymmetry
  • Ear lobe crease
  • Asymmetry of the eyes
  • A large mouth
  • Limited facial expression (only in new social situations)
  • An abnormal whorl (TH has a piebald hair color distribution; he has a neurotypical cousin with double whorls)
  • A prominent lower jaw
Further, certain features occurred in the ASD group with relatively high frequency, including:
  • Sandal gap toes
  • An abnormal frontal hair whorl
  • Attached earlobes
  • A high, narrow palate
  • Hypermobile joints
According to one report on the study, these features were more common among boys with ASD compared to girls, and the authors draw a potential link to copy number variations, or CNVs, a focus that has moved to the fore in responsible autism research. In brief, carrying different numbers of copies of the same DNA sequence might produce different outcomes or combinations of outcomes.

I've boldfaced the features that TH shares with these children. How do you or your child stack up?

Monday, August 23, 2010

In defense of reproductive choice: homebirth

I've been reading comments lately on Facebook and elsewhere mocking women who choose homebirth. Many things disturb me about such comments, including their occasional MD provenance, but the most disturbing thing to me is the knee-jerk equation of homebirth with woo like homeopathy, chiropracty, and using eye of newt in stews. I've read dismissive and derisive words targeted at women who make this choice, including one in a UK article quoting an MD calling women selfish and reckless for choosing homebirth. Birth is birth, no matter where it happens. Location does not make it woo, and to equate this choice with practices that are patently woo is a form of uberstereotyping at its worst.

The women who choose to have a child at home represent a large spectrum, from those who insist on unassisted births for religious or other reasons to those who use a certified nurse midwife (CNM) who has OB backup minutes away. Just as there is no single profile of a woman or family who chooses homebirth, there is also no single monolithic reason that they do so. The reasons are complex, and as a woman who has had a child at home and has given a great deal of thought to this subject, I address those here in arguing in defense of homebirth as a valid reproductive choice.

Why did I choose a homebirth? I tried it three times. The first time, my CNM kicked me over to the OB because of high blood pressure, and I gave birth to our first child in the hospital, where nurses literally yelled in my face, the door to the delivery room was wide open so that total strangers could just stand there, watching everything, and they gave my newborn son a total of 12 medically unnecessary heel pricks for blood draws for blood sugar levels when he didn't have a single reading out of normal range. For those unfamiliar with this process, they clipped my son's heel with a tool that tore into the skin to make it bleed. As he screamed, they squeezed the blood out to sample the blood sugar levels. They did this to him twelve times in the first 36 hours of his life for no legitimate medical reason.

The trauma of that experience was so powerful that I had a form of PTSD that lingered long after. Five years later, when I returned to that hospital to have my thyroid removed, just driving into the parking garage brought on waves of nausea and adrenaline. To this day, I can't hear a click like the one the heel-prick tool makes without flashing back to those first two days of my son's life. That thyroid problem, by the way, was something my midwife detected--my OB and other doctors had not bothered to test for it.

This experience and form of PTSD following a hospital birth is not uncommon. Take some time to read birthing stories on the Web. You'll find women who aren't even articulating their fear, anxiety, or lingering feelings of trauma, yet it comes through in their stories. Some frankly describe their experiences as horrific or traumatic. Is it all about them? No. But it certainly is much about them, and anyone who discounts that is treating the woman herself as less than a person.

I'm guessing that no doctor wants their patient to come away from an experience like childbirth with this kind of persistent emotional distress. Add to that the physical sequelae of a hospital experience--such as the two hospital-borne infections my son and I had, the antibiotics and consequent infant and breast fungal infections that interfered significantly with breastfeeding--and the entire experience can snowball into something that I personally try to avoid recalling.

Our second son was born quietly and safely at home with a CNM who had OB backup, while our third was born at a different hospital with my OB, CNM, and husband the only people in the quiet, darkened, family room where labor, delivery, and post-partum recovery all took place. I don't know if those who mock homebirth realize it, but it's the women like my mother--the vanguard of the homebirth movement--who drove hospitals to realize that they needed to offer families these environments that were more like, well, home. To offer women and families a choice.

This shift from bright, loud L&D rooms full of masked strangers and a peeping public to a dark, quiet room with only family and familiar healthcare providers is an example of what could be achieved if MDs were more accepting of midwives and could bring themselves to listen without mockery or skepticism to why women choose homebirth. I didn't choose that route because I have a la-la attitude that childbirth is soooooo natural and soooo straightforward and something that will work out just fine as long as you do it right. I chose that route because it was what was best for our family, for my child, and because I knew that with the CNM and my OB backup, things were in all probability going to be fine. When I say "probability," that's really what I mean.

MDs can tell the horror stories and have seen babies die in terrible and avoidable ways, and as someone who engages daily with medical and health information, I know these stories, too. The doctors have seen the worst, and their minds can instantly pathologize any situation. They've got legitimate fears about women giving birth away from the emergency interventions a hospital can offer. For the record, I had those fears, too, but in my cost-benefit analysis, my home was the better choice of places for the one fully healthy pregnancy I experienced to reach its end. As a woman, a person, an adult, the pregnant woman, the mother, it was and remains my right to weigh the balance of these issues and make that choice.

The one thing that I or any mother can have in common is the goal of a healthy baby at the end of the process. MDs can stonewall women like me and make fun of us, or they can reach out and try to find ways to make all childbirth options as safe as possible (with the exception of the unreachable extremes). Had our community offered a home-like environment away from the death and sickness of the hospital with midwives aiding the birth and emergency interventions and MDs nearby (you know, like a birthing center), I'd've probably seriously considered that option. But it wasn't an option. Where I live--and where many American women live--the options occupy one end of the spectrum or the other.

The question is, Can we work together toward the goal of safe choices and safest births? As I've noted, the reasons women choose homebirth are complex. One thing that drives women away from doctors and the hospital-care environment is the condescension they experience. I'm not speaking for myself but based instead on the hundreds of birth stories I've read in which women express a feeling of not being heard, of being pushed to accept interventions, of being treated like children themselves. When I read comments from MDs mocking their own patient population, I have to take stories like this seriously. We cannot work together toward a common goal of a safe birth if one of the fundamental reasons women choose the homebirth route persists.

From what I understand from midwives in our community, OBs are reluctant to work with them. As backup for emergencies, the MDs may have liability concerns, which are legitimate given our litigious environment and the fact that any homebirths that come to them will likely by definition be emergencies and associated with complications. Yet, other countries have demonstrated that it is possible for MDs and midwives to work together to produce a safe, healthy, non-traumatic birth environment for mother and child. Even as that progresses in these countries, here in the United States, women in New York have in practice lost their choice of midwife-assisted birth.

I have known several midwives. Yes, they can be touchy feely. They can talk about woo-y type stuff that's just not my thing. One even meditated. But women turn to practitioners of this ancient profession because in their experience--and in mine--midwives listen. During prenatal visits, midwives do everything women experience in a doctor's office, with two exceptions: Midwives don't make the woman wait for an hour to be seen, and when they do see her, the appointments themselves can last as long as an hour as the midwife listens and notes everything the woman has to say. This art, the art of listening, is one that any MD would do well to practice. Studies indicate that many doctors aren't too great at listening, and if there's one thing a pregnant woman needs as badly as she needs a blood pressure check and to pee on a stick, it's to have someone really hear what she's saying.

A recent study has stirred up a great deal of controversy about homebirth because it found a higher rate of infant death during the month post-partum period among homebirths. These findings run counter to previous reports of relative safety of homebirth. I don't doubt the study authors' analysis, but I don't think that they pursued the potential reason for these deaths not during the birth but during that post-partum period. It may be--indeed, is likely--that the homebirth population is less inclined to seek standard medical intervention in general and that in the presence of infant symptoms of illness, they opted for home care, leading to higher rates of complications and deaths.

Some studies also indicate a higher rate of perinatal death with homebirth. These studies include the spectrum of homebirth options, and in my opinion, it's inaccurate to compare a birth with, for example, a lay midwife to one involving a CNM with OB backup. But many studies have found comparable rates between low-risk, CNM-attended homebirths and hospital births, and of course, many of these are international studies. Indeed, with the right safety mechanisms in place, even the World Health Organization countenances the choice for women.

What is the bottom line here? I would argue that the onus is on doctors to open up more to what women are saying about birth. The MDs may have heard it all a million times, but for the individual woman, the future mother, she's the only experience she has. If the medical establishment could expand the options, women could have reproductive choices that are safe for their babies and for them, and doctors would feel more comfortable about safety and access to necessary interventions.

Perhaps, some day, we can achieve the birthing nirvana that The Netherlands seems to have become, based on a study 529,688 women in that country. As the authors observed, "This study shows that planning a home birth does not increase the risks of perinatal mortality and severe perinatal morbidity among low-risk women, provided the maternity care system facilitates this choice through the availability of welltrained midwives and through a good transportation and referral system." These words describe the goal. But to get there, a first step would be that MDs not mock their patient population, no matter how misguided the patient's thinking may seem. Women deserve that respect...and choice.

Friday, August 13, 2010

Brain Balance Centers: a critique

They've come to my attention now three times in one week, so I figured the goddesses were sending me a sign. Emily, they were saying, you must give a critical look at Brain Balance Centers and then blog your conclusions.

My first encounter with Brain Balance Centers (BraBaCens for our purposes) occurred as we drove through an affluent Colorado suburb. There it was. "What is that?" I naturally wondered to myself. A nearby billboard advertising their brilliance failed to clear up my confusion much.

My second encounter was right here on this blog when a commenter posted a comment in the guise of, well, commenting, but it really seemed more like a plug for BraBaCens.

The third exposure came to me via an email from a family member. They've just opened up a BraBaCen in our city, it seems. It's a franchise, you see. Having by this time looked into BraBaCens a bit, I expressed my skepticism in somewhat strong language--it was early, I'd just woken up--and then said that I'd bet the house they'd sited said franchise in an affluent part of town. Why, yes, as a matter of fact, in the most affluent part of our town one can find. Kinda close to Thoughtful House, actually. Damn. I really wanted to get out of that house.

So...without further adieu, goddesses of the universe, I hear ya. Here's the critique, in 10 easy steps. (NB: The gods of spacing and formatting have apparently gone on holiday. Sorry.)

Step 1. Let's start with this assertion from BraBaCens (all quotes are from this site, unless otherwise noted):
"We recognize that many childhood disorders are actually manifestations of a single underlying condition."
My critique: Well, the NIH sure as shit is wasting a lot of green on looking for the causes for these "many childhood disorders." Hey, NIH--it's over. You can stop funding now. If only cancer were the same way, then...oh, nevermind.

Step 2. They say: "Called 'functional disconnection'--an imbalance in the connections and function between and within the hemispheres (sides) of your child's brain--this condition is responsible for a host of behavioral, academic, and social difficulties."
My critique: Wouldn't any neurological difference/disorder by definition involve some kind of problem either between hemispheric communication or within the hemispheres? I mean, that pretty much covers the entire brain, so they're on pretty safe ground there. Note that they've come up with their own sciency-sounding name for this massive obviousness: Functional disconnection. Pseudoscience alert!

Step 3. According to BraBaCens, they "work with children who have ADD/ADHD, dyslexia, Tourette's, Asperger's, and autism spectrum disorders" (yes, they list those last two separately).
My critique: One of the cardinal signs of a pseudoscience is the promise to ameliorate unrelated problems with a single, curative method...that is proprietary.

Step 4. They "measure and improve your child's brain and body function on numerous dimensions."
My critique: They are messing with spacetime here, apparently.

Step 5. They say, "To gain a full understanding of your child's difficulties (sic) we first conduct a comprehensive assessment (whattaya think that costs?) of all areas of their brain and body function (because these, it seems, are two different things). Then, by integrating physical and cognitive exercises with dietary change (alert! alert!), we are able to correct the underlying imbalance, improve function, and reduce/eliminate negative behaviors."
My critique: They're basically promising to rewrite developmental and learning differences through exercise and diet. Sigh. Wouldn't it be great if it were just that straightforward? And wouldn't everyone already know about it if it were?

Step 6. I'll let you read their "Science" page for yourself, quoted below. Once again, they provide the most basic umbrella description that would encompass any brain difference and behave as though it were a specific, newly discovered mechanism that now solves all remaining questions regarding their laundry list of disorders and differences:
A properly functioning brain communicates between both hemispheres as well as within each hemisphere at lightning speed. Think of these communications like runners in a relay race: They connect, pass on information, and release, repeating this process millions of times a minute. In a poorly functioning brain, these runners are often out of sync, missing each other or passing on only partial information. This miscommunication is called Functional Disconnection and is at the root of all types of neurobehavioral and learning problems.
My critique: First, this is like saying that the underlying cause of books is words, put together in different ways, and sometimes, it doesn't make sense. Um, duh. Ulysses, anyone? And once again, has anyone let the NIH know that it's all over?

Step 7. They elaborate:
The Brain is Changeable
It was once thought that the brain was static, unable to grow or change. But extensive research and in depth study of epigenetics has shown that it’s remarkably adaptable, able to create new neural pathways in response to stimulus in the environment, a branch of science called neuroplasticity. Additionally, it is now understood the difficulties associated with a wide range of learning disorders and neurobehavioral disorders result primarily from environmental influences that affect genetic expression and are therefore often correctable. Because the brain can change, and because difficulties can be corrected, children suffering from Functional Disconnection can be greatly helped.
My critique: I don't remember how long ago it was "once thought that the brain was static," but the plasticity of the brain has long been recognized, especially young brains, although us aging folk catch a break here and there, too. I like the way they toss in "epigenetics" there, even though that doesn't have a hell of a lot to do with initial recognition of the brain's plasticity. And here's a newsflash: The brain/nervous system creates neural pathways in response to stimulus from the environment. Guess what? That applies even if you're a sea anemone.

Step 8. They say: "It is now understood that the difficulties associated with a wide range of learning disorders and neurobehavioral disorders result primarily from environmental influences that affect genetic expression and therefore are often correctable."
My critique: Aaargh. Any gene expression is under environmental influence. It doesn't just sit there and happen. But what they're really saying here is bad neuroscience. They're saying that these influences are exogenous and that the neuronal alterations they produce can somehow be reversed. That's not good neuroscience. The brain is notoriously recalcitrant to redirection of pathways once they've been laid down (brainworms, aaaagh!). But it helps BraBaCens to assert these things because then, they can offer the right "environment" (for the right amount of money) to "correct " them.

Step 9. They quote a professor of neuroscience from UCSF (or, in their lingo, U.C.S.F.):
“Research has shown that engaging the brain’s plasticity to drive beneficial changes requires exact stimuli delivered in the appropriate sequence with *precise timing*. The training must be intensive, repetitive, and progressively challenging. Individuals must be strongly engaged in the training, paying close attention. It’s all about the mind’s vitality–nurturing it, reclaiming it and giving it strength.”
- Michael Merzenich, Ph.D.
Professor of Neuroscience, U.C.S.F.

My critique: What they don't say is whether or not Dr. Merzenich is saying this about their approach or about the brain's neural plasticity in general. He's an emeritus at UCSF who's done a ton of work in neural plasticity, but what his association--if any--with BraBaCen is remains unclear. Possibly on purpose. I have emailed Dr. Merzenich to clarify whether or not he has an acknowledged association with BraBaCens or if they're co-opting his quote to enhance the scienciness of their Website.

Step 10. In the comment left on my blog, I was specifically invited to review the "The Truth" section of the BraBaCen Website. So, I did. I have my regrets. You can read it for yourself, but please don't stand near any irony meters while doing so.
My critique: They make several claims on this page and then provide a list of scientific publications that, presumably, are intended to support those claims. The list is below. They use this list to support the following claim:
As stated, clinical research indicates that these Neurobehavioral/ Developmental Disorders are related or have in common an underlying functional imbalance or under-connectivity of electrical (brain) activity within and between the right and left sides of the brain. As a result, the brain literally becomes desynchronized or “out of rhythm‟. So, just as an orchestra may be filled with gifted musicians, the music played will sound horrible if the musicians play out of rhythm. It is the same with the brain; it too must function in rhythm or synchronicity.

Yes, that is a enormous steaming pile of bullshit. So, let's look at the reference list.

The first is a book with no page citations. Evidently, the entire book supports the assertions. Interestingly enough, one of the book's authors, R. Mellilo, is the creator of...the Brain Balance(TM!) program. Ahem. He also is an "internationally known chiropractic neurologist." Woo. This "groundbreaking" book came out in 2004 and thus must rely on data preceding that publication year. So...this groundbreaking book by the guy who developed the Brain Balance (TM!) program who's also a chiropractic neurologist has stuff in it that's at least seven years old. Ahem, woo.

Leisman, G & Melillo, R. (2004). Neurobehavioral Disorders of Childhood; An Evolutionary Perspective, 1st Ed., Springer Science + Media,inc., New York.

------------------------

The second is just confusing. Clearly, they copied and pasted something from the FDA but didn't do it quite right. But it does bulk things out, doesn't it:

Terry Davis, FDA (just use web citation format as seen below)

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The third is...the DSM IV-TR. Which, I assume, contains information directly counter to what they're asserting on their "Science" page, as it does in fact divide these disorders into discrete categories.

American Psychiatric Association (2000). Quick Reference to the Diagnostic and Statistical Manual of Mental Disorders from DSM-IV-TR®, 4th Ed., Text Revision, Washington, DC, American Psychiatric Association.

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The fourth resides in the dead-link cemetery:

International Dyslexia Association, “IDA Fact Sheet On Dyslexia and Related Language-Based Learning Differences”, 2007. http://www.interdys.org/FactSheet.htm

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The fifth is simply hysterical, in addition to being 14 years old. Click on it. WTF?

Aspergers.com, “What is the epidemiology of Asperger’s Disorder?”, 1996. http://aspergers.com/aspepi.htm

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The sixth is also six-feet under in the dead-link cemetery. But given the title...I'm guessing it probably just discusses Rett Syndrome, which they do not even mention in their laundry list of things they're gonna correct. Of course, that's....clearly genetic, so it doesn't fit with their effort at a rationale, either...

National Dissemination Center for Children with Disabilities, “NICHCY Connections…to Rett syndrome”, April 2004. http://nichcy.org/resources/rett.asp

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The seventh? See "sixth," above.
National Dissemination Center for Children with Disabilities, “NICHCY Connections…to Childhood Disintegrative Disorder”, April 2004. http://nichcy.org/resources/disintegrative.asp

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In other words, of the seven "citations" they provide, only one has anything to do with what they're describing in The Truth, and it's a book written by the guy who developed the program.


My guess is, there's a certain expectation that the list alone is sufficiently convincing without parents having to do all that pesky footwork to check these references out.


Finally, in a tour-de-force of marketing, they promise to be "brain based, not drug based." This is a brilliant appeal to parents who are extremely uncomfortable turning to drug therapies--therapies that have proved to be enormously effective in many cases--for their children. It's gonna bring them in in droves. Them, and their presumably pretty deep pockets (read on).


So, what do we have here? Let's refer to our
pseudoscience checklist, shall we?

1. Is there a clear monetary reward? A quick overview of the ZIP codes in which BraBaCens are established and the offer of the good doctor's books on the site and the fact that the program, according to one report, costs at least $5000, gives this one a big ol' checkmark. It's a franchise, for God's sake. Some parents report having spent even more ...and some parents are not happy with their outcomes. I recommend reading all of the comments at this link.

2. Are there requirements for paying more as you go along? There are many mentions of tweaking and evaluating and ongoing this and that. And then there's that $5000 and growing (see #1, above). To quote one parent: "

There were promises by the director of music cds, books, software programs for post session. In the end, our family is out $5K. When the program completed, we were told, 'we'd love to continue to work with your child-but we will need another $3K to continue.'"

3. Is there a central personality rather than a core science supporting the therapy? Yes. The author of the book that serves as the sole existing cited support for their ideas. They also refer to their program as "proprietary." If you had something that really, truly ameliorated the "negative" behaviors of any one of these disorders, how would you choose to disseminate it?

4. Is there use of sciency-sounding but often nonsensical terms? "Functional disconnection," anyone? I can just hear parents in my neighborhood throwing that one around, nodding sagely. And that blather about how the brain is involved in brain differences...gee golly whiz.

5. Is there a promise to cure a number of unrelated disorders? Yes. While I can buy that there is some overlap among these disorders/differences (that'd be because there is science underlying that), the ideas posited here are shallow and unsupported, and the fact remains that even with overlaps and commonalities, these disorders that they're promising to cure wholesale on the basis of an asserted common mechanism are still distinct. Tourette's is not autism. ADHD is not dyslexia.

6. I'm adding in another one here: Do they rely on testimonial instead of science? Why, yes. Example:

We urge those of you who still have questions to visit our new blog for the Georgia Brain Balance Centers at BrainBalanceGABlog.com and take the time to read the information and decide for yourselves. There are some very powerful parent testimonials...

But no mention of powerful science or data or outcomes.


Conclusion of critique: I'd keep away from these folks and their expensive, proprietary promises.