The Child Mind BlogBrainstorm
Nightmare in a Seclusion Room
Sept. 11, 2012 Rachel Ehmke
This weekend the New York Times ran an alarming op-ed written by Bill Lichtenstein, a father who found out that his kindergartener was being locked inside a closet at her Massachusetts public school for up to an hour as a disciplinary measure. This might seem to be illegal, but many schools actually consider so-called "seclusion rooms" a valid strategy for punishing and isolating kids who are displaying problematic behaviors. Seclusion rooms are used disproportionately with kids who have learning, behavioral, physical, or developmental needs. This includes Lichtenstein's daughter Rose, who has speech and language delays.
Lichtenstein began noticing tell-tale signs of trauma in Rose at home, but he couldn't get an explanation for the change in her behavior until he saw first hand exactly how her teachers were disciplining her. What he learned was horrifying:
At school, her mother and I found Rose standing alone on the cement floor of a basement mop closet, illuminated by a single light bulb. There was nothing in the closet for a child - no chair, no books, no crayons, nothing but our daughter standing naked in a pool of urine, looking frightened as she tried to cover herself with her hands. On the floor lay her favorite purple-striped Hanna Andersson outfit and panties.
Later he explains that she was naked because she needed to use the bathroom while she was locked inside the closet and didn't want to soil her favorite outfit. When people at the school discovered she was naked they called her parents but did not offer to help her. Now, six years later, Rose tells her father that the people involved "weren't bad people; they just didn't know about working with children."
Seclusion rooms were first used in special needs schools and then followed special needs students as they were mainstreamed into public classrooms. According to an expert interviewed by Lichtenstein, this often happened without proper staff training, introducing new students that schools didn't know how to care for and new techniques that schools didn't know how to use.
Rose's story is especially painful for parents in New York City, where massive special education reform is happening right now. Starting last week, the vast majority of special needs students in the city were required to leave their specialized programs or schools and enroll in mainstream classes at their neighborhood school. The Department of Education hopes this placement will provide a more individualized education and improve graduation rates for kids with special needs, but many parents are worried that local schools are unprepared for the influx of new students requiring new supports. A recent study found that the Department of Education did a good job getting ready for the transition. We hope so.View Comments | Add Comment
NBA Player Royce White Talks Anxiety Disorders on Draft Day
Sept. 6, 2012 Rachel Ehmke
If you have an anxiety disorder, or if you know someone who has an anxiety disorder, or if you are a basketball fan, or if you are a human with a beating heart stop what you're doing and watch this awesome nine-minute documentary about NBA player Royce White from the people at Grantland.
White, who was diagnosed with generalized anxiety disorder when he was 18, has been very open about his anxiety, panic attacks, and fear of flying. (He caught the media's attention last year when he and his grandfather drove ten hours to the NCAA tournament first round games.) While his frankness is inspiring to anxious kids (and adults) everywhere, NBA teams were less excited about drafting a potentially high-risk player who might not be able to keep up with the intense pressure and travel associated with a rigorous professional schedule.
The filmmakers followed White around on draft day this past June, watching him meet with his team doctor and endure the nerve-racking wait to see when—and if—he'll be called. By all accounts White is a brilliant player and many believe he deserved to be drafted in the top ten, but his future feels very uncertain in the documentary as team after team rejects him.
We can't say enough good things about White and his commitment to being a role model who isn't afraid to talk about his mental health on a national stage, even when it has very real consequences for him. It's clear that he is a courageous guy. In the film he says, "My doctor told me when I was 18—she looked at me right in the face and said, 'You know what, basketball might not be right for you. Because you know this industry is built to defeat somebody like you.' But I want people to see that you can deal with your disorder. You can chase your dream."
As fans know, he does get drafted—at 16—to the Houston Rockets and coach Kevin McHale. Back in college he was offered a position to play for Kentucky, but he backed out after having a panic attack at the thought of flying there. He says he's getting better about flying, and it's inspiring to see him board a plane out of Des Moines to join his new team in Texas at the end of the film. "I'm very scared," he admits. "It's just something I'm going to have to go try and do and see how it works out."
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Half of Teenagers With Autism Bullied
Sept. 4, 2012 Caroline Miller
It wasn't exactly a surprise, the news that nearly half of teenagers with autism report having been bullied. A new analysis of data from a sample of 920 parents of kids on the autism spectrum found that 46 percent had been bullied, compared to just 10.6 percent of the general population. We knew that kids who are different and socially awkward tend to be targets. But it's interesting to note that the kids who seem to be at highest risk of being bullied aren't those who are most impaired.
On the contrary, as the New York Times reporter put it: "The researchers found that the risk of being bullied was greatest for high-functioning children who end up not in special education programs, but in mainstream classes, where their quirks and unusual mannerisms stand out and they are more exposed to bullies."
Middle and high school kids who are mainstreamed are more likely to be unprotected, and interacting with children who see an opportunity to tease or torment them. Obviously we need to do a better job teaching those kids to comprehend the notion of neurodiversity—the term of choice for people on the spectrum and in the larger autism community. But it's a term I suspect most 15-year-olds have never heard, let alone thought about.
One ray of hope, though: I note that the data analyzed was from 2001, according to the Times. Perhaps the "neurotypical" kids in mainstream classrooms have made a little progress since then.View Comments | Add Comment
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