The Child Mind BlogBrainstorm
Shocking: The Judge Rotenberg Center
Sept. 4, 2012 Harry Kimball
There is pretty terrifying article in New York magazine about the Judge Rotenberg Center, a residential treatment facility and school in Massachusetts for young people with developmental disorders, where they employ electric shocks as "aversives," punishment for undesired behaviors. The JRC has been in the sights of the autism community for quite a while, although some parents of kids who have been treated there swear that the program is life-changing (in a good way).
I think it is quite possible that the staff of the JRC are honestly trying to help their young charges. But the article, by Jennifer Gonnerman, illustrates capriciousness in treatment for behavioral issues that would be bizarre, unhelpful, and unacceptable even if it didn't involve electric shocks. The main character in this story is Andre McCollins, an intellectually disabled young man from New York who had been fitted with the shock device at the school. One day, in 2002, he was shocked 31 times.
"Hour after hour went by and nobody knelt down next to Andre to try to calm him," Gonnerman writes. "Attention was considered a reward—and a student who's exhibiting 'targeted behaviors' is not supposed to receive any." Well, that's all well and good—but you do not need to couple this "active ignoring" with active punishment. Particularly when the theory behind it is so patently mercurial. Because after all of this, JRC founder Dr. Matthew Israel comes in to the room. "He stood at a distance, arms folded across his chest, and assessed the scene," Gonnerman continues. "He concluded, as he later testified in court, 'The program that was designed really needed to be changed.' He ordered his employees to stop shocking Andre."
There is no method to this madness. Gonnerman relates another story that further serves to illustrate how wrong-headed this enterprise is. In 2007 "a former student from New York had prank-called a Rotenberg residence at 2 a.m., pretending he was an employee in the monitoring department. He claimed to have seen three boys misbehaving earlier in the evening, and he ordered the workers to pull them out of bed and shock them. The employees complied. In the rec room, they tied two teenagers onto a restraint board and began shocking them."
This story doesn't end any more satisfactorily than McCollins'. "Eventually the workers figured out the call was a hoax—but not before they shocked one boy 29 times and the other 77 times."
There is a healthy debate about the best evidence-based treatments for developmental disorders. But it seems like the evidence lines up squarely against the apparently thoughtless application of force at the Judge Rotenberg Center.View Comments | Add Comment
Open Science: 500+ Autism Brain Scans Shared
Aug. 30, 2012 Harry Kimball
At the Child Mind Institute, we're very happy to have been a part of today's public release of more than 500 brain scans of people with autism as part of the Autism Brain Imaging Data Exchange (ABIDE) and the International Neuroimaging Data-sharing Initiative (INDI) Summer of Sharing. The whole dataset, with imaging from 539 individuals with autism spectrum disorders and 573 typical controls, is now available for anyone around the world to analyze—with the expectation that open sharing and collaboration will lead to new discoveries about the neural nature of autism, much in the same way that the ADHD 200 Consortium has encouraged novel approaches to identifying ADHD. In short, ABIDE is a sterling example of the open science that the field is moving towards, and that will eventually lead to a better understanding of the brain.
ABIDE is also a "big deal" for the autism research community, as Child Mind Institute Center for the Developing Brain director Michael Milham, MD, PhD puts it. Because of the many different ways autism affects different people—in terms of symptoms and severity—large sets of data are required to draw conclusions about the disorder. It has been difficult to gather these big samples, but the autism community has been at the forefront of advocating for sharing and open science, and the ABIDE release is a culmination of that push. A preliminary analysis of the data has already produced some novel ideas about how autism manifests in the brain at the "connectome" level—which regions talk to which other regions—and we hope that this is just the beginning.
16 institutions around the world joined together in this experiment in transparency and collaboration. The next time we report on an event like this, hopefully it will be even more.
You can check out the ABIDE page at the International Neuroimaging Data-sharing Initiative site here.View Comments | Add Comment
Autism and Inflammation
Aug. 27, 2012 Caroline Miller
It was pretty staggering weekend reading. In an op ed piece in the New York Times yesterday Moises Velasquez-Manoff, a science writer, argued that autism (or at least a third of it, if you read the fine print) may be caused by immune dysregulation in pregnant women. He's got a book coming out about what's been called the "hygiene hypothesis," that a lack of exposure to parasites in contemporary life has undermined immune functioning, causing inflammation in the mom that may disrupt the neurological development of the child. To cut to the chase: If you get an infection during pregnancy, your child may get autism.
Part of the shock of reading this is that it comes on the heels of research only days ago that concluded that genetic mutations in older fathers can cause autism. Even more to worry about.
But this piece isn't a report on new research. The writer's only graduate degree is in journalism. And he's put together a complex thread based on a host of diverse studies from all over, to make the case that the way to prevent autism is to reintroduce parasites—seriously—in what he calls an "ecosystem restoration project." It's a tantalizing thread based on pieces of research most readers won't be able to evaluate, and offered as an opinion piece with no comment from scientists. Indeed, the Times Op Ed page seems to have become a home for these theoretical forays without benefit of the kind of scrutiny you'd expect in the highly regarded Science section.
At childmind.org we'll invite some people, much more informed than I am, to comment on this argument, but in the short term I recommend a thoughtful, very skeptical point-by-point review by another science writer (this one with a PhD in biology and experience in the lab), Emily Willingham. "Inflammation and autism," Willingham notes, "are a touchy pairing," given the tenacity with which many people cling to the scientifically debunked theory that vaccines cause autism because they trigger some kind of inflammation.
Willingham accuses Velasquez-Manoff of oversimplification and sensationalism, of using both a headline—"An Immune Disorder at the Root of Autism"—and language throughout that far outstrip what is scientifically grounded in this chain of connections.
She notes, among other things, that there is no evidence that there's an "epidemic" of autism in developed countries, that mice don't get autism, only "autistic-like" behaviors, and that developing countries that report less autism may be doing that because they are overwhelmed by parasite-born diseases that threaten children's lives. She even begs to differ with Velasquez-Manoff's use of an action-hero, who leaps to the rescue and then returns to a state of "Zen-like" calm, as an apt metaphor for the immune system when it's working properly. " Your immune system is not your buddy," she notes dryly. "It's a cellular gang that follows instructions, even if those instructions result in collateral damage."
I'm quite sure much more will be written about this, and we'll try to keep on top of it.View Comments | Add Comment
CMI's Yoga Benefit with Hilaria Thomas Baldwin a Big Success
Aug. 27, 2012 Child Mind Institute
Hilaria Thomas Baldwin connected mind and body last week, hosting a sold-out yoga event benefitting the Child Mind Institute in conjunction with Yoga Gives studio in Southampton. Host committee members Christine Mack, Amanda Taylor, Jennifer Creel, Tania Higgins, and Stephanie Winston Wolkoff brought together a great group of friends and yogis including Lise Evans, Julia Koch, and Holly Peterson. Hunter Boot provided a special CMI tote for all participants. The vinyasa flow class raised an amazing $8,000 to support the Child Mind Institute's financial aid fund, which promises no family will be turned away from care due to their inability to pay.
This was our first ever yoga event, but yoga goes hand in hand with mental health. We love it for its many benefits, including increased mindfulness and calm. It can teach children ways to manage sensitivity to stimulation, improve their coping skills, and lead a more peaceful life. In fact, Hilaria encouraged all of yogis present to introduce their own children to yoga. The participants are no doubt still feeling the positive effects; we know that the children they helped will soon be, too.
Many thanks to Hilaria Thomas Baldwin, Yoga Gives, and our host committee for making the event such a success.
Read An Ashram for Autism to learn more about the benefits of yoga.
Stop Blaming Rihanna for Being Honest
Aug. 21, 2012 Rachel Ehmke
Rihanna is being blamed again for not being a good role model. This time it's for admitting to Oprah that she's still in love with Chris Brown and feels protective of him even after being badly beaten by him three years ago.
Her complex emotions about the relationship are hard to hear, but criticizing her for expressing them is dangerous. This is someone who experienced serious emotional trauma, and criticizing her for how she feels about that is a lot like criticizing an anorexic girl for saying she feels fat even though she's dangerously underweight. You might not understand what she's saying, but ignoring how she feels doesn't help her or anyone else.
In her interview she's shedding real light on the complexity of an abusive relationship. When she describes losing her best friend and everything that she knew all in one night, she is just being honest. People rarely have such complete control over their emotions that they can immediately stop loving someone who has betrayed them. Bad experiences don't always obliterate good ones.
When we criticize Rihanna for admitting to have complicated emotions about the trauma she experienced we are implicitly discouraging other girls from getting help. Too many abused women are isolated from their friends and family, both by their abuser and, unfortunately, but the people who care about them but can't understand why they don't just walk away from what is clearly a bad relationship.
We want to do everything we can to prevent our daughters (and sons) from getting into an abusive relationship. (It's worth noting that both Rihanna and Chris Brown grew up in houses where they regularly witnessed abuse). But abuse still happens, and when it does we want our children to know that they can come to us, and hopefully come early, before the abuse becomes physical. But we also want them to know that they can still come to us after.
As for Rihanna, we applaud her honesty. It's important that we listen to what she has to say, even if we don't agree with everything she says, or did.View Comments | Add Comment
When the ADHD Diagnosis Is Wrong
Aug. 21, 2012 Harry Kimball
On Sunday, the New York Times published a piece by Bronwen Hruska that takes a stern look at a real phenomenon: treating disorders that aren't there. In Hruska's case, it was her son Will's ADHD, diagnosed in the fourth grade at the urging of his teacher, who found his wandering attention problematic—or the lack of the disorder.
In a nutshell, Hruska succumbed to pressure to have Will evaluated, he was diagnosed with ADHD inattentive type, and treatment with methylphenidate seemed to help him focus a bit. But after a year the medication "stopped working," Will stopped taking it, and he turned out fine. "For him, it was a matter of growing up, settling down and learning how to get organized," she writes.
"There's no clinical test for" ADHD, Hruska continues, which leaves room for this sort of confusion. "Doctors make diagnoses based on subjective impressions from a series of interviews and questionnaires." This and her experience lead her to the conclusion that overdiagnosis is rampant, and that "instead of leveling the playing field for kids who really do suffer from a deficit, we're ratcheting up the level of competition with performance-enhancing drugs."
It is heartening that Hruska concedes that some children "really do suffer from a deficit" in attention and self-regulation of impulsive and hyperactive behavior. But has stimulant medication for ADHD really crossed completely into the realm of "performance-enhancing" pill dispensed for less-than-perfect classroom behavior? As we've said before, we know there is misdiagnosis. But we also know there are many kids who get no diagnosis who really do need help, and it would be a shame if the phenomenon of parents being pressured into thinking their kids have a problem prevents kids who are really struggling and suffering from getting the care they need.
This means that we need better diagnostic tools, and better training for the medical professionals who care for our children, two things I doubt Hruska would disagree with. That's why it's exciting that we are getting closer to biological markers that can identify psychiatric disorders with more certainty, and that there is a growing awareness that diagnosis needs to be approached with more rigor both in the psychiatrist's office and in the pediatrician's office, where most kids are diagnosed.
We agree with Hruska that we hate to see medication that's important for kids who are seriously impaired misused by those who are looking for an advantage. She worries that we're teaching kids to reach for a pill when they're faced with challenges.
But this worry threatens to overshadow children in need. As one commenter on an accompanying blog post wrote, "Would you say this to an asthmatic? 'I'm afraid that if you don't experience the challenge of gasping for breath as a child, that when you have a setback at work, you'll just reach for an inhaler.'"View Comments | Add Comment
Autism, Airplanes, and Alec Baldwin?
Aug. 14, 2012 Harry Kimball
We couldn't help thinking of Alec Baldwin when we heard that a young woman named Carly Fleischmann got cross recently when American Airlines attendants insisted that she stow the iPad she uses to communicate for takeoff and landing.
Carly, a 17-year-old who has autism, insisted that she had been able to use the iPad on many other flights, and held her ground until the captain got involved, and allowed her to keep it open, though the fight attendant continued to insist that she not use it.
Unlike Baldwin, she didn't get into a shouting match or get thrown off the plane. But like him she had the nerve to express skepticism about the reasons for the rule. And like him she shared her travel and technology woes on the Web.
Now, I am as far from an expert on avionics and signal interference as you can get, and though I think many of us are skeptical about cell phone and electronics rules on airplanes I don't presume to tell airlines or the FAA their business. But I think Carly's stand illustrates how people with different methods of communication—she is nonverbal—are asking to be treated with respect. "It's time for you to move with the times," she writes on her Facebook page, "and understand that an iPad is not just for fun it's for people who really need it too."
Happily, the FAA is considering a course that would change the rules and let people like Carly hang on to their devices during takeoff and landing. As she puts it, "can you imagine being on the airplane and being asked not to talk for over 25 minutes?"
Coincidentally, the game Baldwin was playing was called "Words With Friends." It seems appropriate.View Comments | Add Comment
London 2012: The Real Olympic Role Models
Aug. 7, 2012 Harry Kimball
Ah, the Olympics. Primed for tales of triumph and perseverance in the face of daunting odds, we arrive at our TV sets every two years (four if you're prickly about the particular season) and watch the biggest mélange of sporting events in the world unfold on the international stage.
But triumph, humility, and perseverance are not the only qualities on display. While there have been many gracious acceptances of silver medals, and joyous bronzes, there have also been irritable disappointments, unsportsmanlike conduct, and some high profile disqualifications. Even the top athletes, the ones "favored" to reach the medal stand, sometimes appear like less than stellar role models. While Michael Phelps seems to have lived down his dalliance with a bong from a few years ago, his teammate Ryan Lochte has picked up the bad-boy mantle. "Jeah! Jeah! Jeah!" No.
So who to look up to? I propose that gold has little to do with it, and that a little digging will turn up an Olympian of every stripe for every young person looking for examples to guide them. There are some high-profile examples of this—veterans returning for one more shot, like the swimmer Anthony Ervin, who won gold in 2000 in the 50m freestyle, then spiraled into drug and alcohol abuse, a suicide attempt, and trouble with the law before returning to the sport for this Olympics. He placed 5th in the final.
Then there are international stars trying to break in to the higher reaches of their disciplines despite amazing obstacles, like the South African runner Oscar Pistorius, who first needed to master the sport on artificial legs and then convince the world he could compete with everyone else. He didn't make the final in the 400m in London, but his mere presence seems like validation enough for his incredible efforts.
But if we go even deeper we begin to see what the Olympics can really be about, and to find the garden-variety determined athletes who necessarily embody what the Olympic experiment can teach our young people and ourselves. Remember, the vast majority of people with Olympic dreams have no reason to expect a gold medal. The vast majority are trying to make their country's team so that they can show what they can do, even if everyone around them doubts the validity of their talents. The vast majority compete with others who have gold "in their grasp" because it can be just as valuable, and just as inspiring, for someone to attempt what others think is beyond theirs.
What I like to focus on—at the same time that I cheer for US gold, which seems impossible to avoid—are all the competitors for whom the medal stand is less of an obsession or even a likelihood. The competitors who understand—and help us understand—that the Olympic spirit that is most valuable lives not just in the favorites but also in the most unlikely people and corners of the world.
When he placed well enough in the heats to advance to the semi-final of the 400m, Pistorius told the Globe and Mail that he understood his limitations. "My times are off the top guys in the world," he said. "I had to run a really hard race to make the semi-final." But that doesn't mean he isn't Olympic material, he continued, quoting from his late mother. "She always told me, 'A loser isn't the person who gets involved and comes last, it's the person who doesn't get involved in the first place.'"View Comments | Add Comment
Squeezing Teenage Girls Into Girdles
Aug. 6, 2012 Rachel Ehmke
You have to wonder, is it the Mad Men effect? The corsets and girdles that went out of style in the 70s are back, now discreetly called "shapewear," and they're being marketed to girls as young as 13. Good Morning America recently reported on the trend in a segment that described shapewear like Spanx as "necessary," "a way of life," and "the must-have accessory" for teenagers, who are said to be wearing them every day to school. "You've got the training bra and then you've got the Spanx. Everyone wears them," one girl tells the camera.
It's not only bizarrely retro, it's frankly alarming to see people returning to the girdle, particularly if it is becoming a right of passage for girls before their bodies are even developed enough to wear a real bra. Besides making girls more likely to develop an eating disorder, child psychologist Ned Hallowell says the popularity of shapewear for teens might mean "never being happy with your own body image."
And some of it is even being designed especially for teenagers: Jill Zarin, formerly of The Real Housewives of New York City, has such a line of girdles called, grossly, Skweez. In her interview Zarin argues that shapewear is good for girls because it "normalizes" their bodies—a claim that tells a young girl her unsqueezed body isn't normal. That has to be one of the worst messages you can send a 13-year-old, along with the message that spandex is the best way to make yourself fit the idealized norm of what women's bodies should look like. We are used to celebrities and non-celebrities alike supplementing (or maybe supplanting) healthy diet and exercise with Photoshopping and Spanx. But without proper perspective, these things can distort a child's reality. It's 2012. Healthy diet and exercise should be the new normal, not body shame and spandex.View Comments | Add Comment