The Child Mind BlogBrainstorm
Patrick Kennedy: Mental Health Care as a Civil Rights Issue
May 14, 2013 Caroline Miller
Congressman Patrick Kennedy gave a rousing talk this morning for Speak Up for Kids about equal treatment for people with mental illness as nothing short of a civil rights issue.
He draws his passion and his insight, in part, from his own experience battling mental illness. He knows first hand how hard it is for families to get good diagnosis and treatment, and how damaging it is when psychiatric illness is not taken as seriously as physical illnesses. Brain illness deserves parity, he argues, not only under the law, in insurance coverage, but in research dollars devoted to unlocking new treatments.
Asked about how and when he was diagnosed as bipolar, he said this: "The honest truth is that it's taken me a lifetime to get adequate diagnosis."
Rep. Kennedy described being "bounced around the system"—a phrase we hear a lot from parents. In his case it was not because he lacked resources or insurance coverage, or family members fighting for him—he was very fortunate in those things, he acknowledged—but because when the diagnosis isn't correct, the treatment won't work. "When you're still trying to put your finger on the diagnosis, people are treated for various illnesses that may not be the specific illness they suffer from." There's a lot of ineffective treatment of brain illness, he added, because of misdiagnosis.
"The crucial thing we need to do is improve the diagnosis," he said. "And that only happens when we improve the science." Rep. Kennedy advocates a national brain research initiative that will allow scientists to uncover the mechanisms that underlie mental illness instead of focusing on specific disorders like autism or ADHD.
Not making brain research a national priority, he argues, is tantamount to telling people with mental illness they have to wait for equality.
He reminds us of President Kennedy's 1963 speech challenging all Americans to understand the urgency of those denied their civil rights on the basis of race: "Who among us would be content to have the color of his skin changed and stand in his place? Who among us would be content with the counsels of patience and delay?"
Similarly, Rep. Kennedy says, "If you have a loved one with autism, a mood disorder, with Alzheimer, how long would you tolerate us taking the slow road to better cures and better treatments?"
You can see the whole talk here.View Comments | Add Comment
Chris Hadfield Inspired Kids From Outer Space
May 13, 2013 Rachel Ehmke
When Commander Chris Hadfield leaves the International Space Station and returns to earth tonight he'll be coming "with 800,000 Twitter followers in tow," as one website put it. The Canadian astronaut has been on board the ISS for five months now, and in that span of time he has uploaded hundreds of photographs and videos to Twitter, Facebook, and YouTube. With his microphone floating weightlessly in space in front of him, Hadfield let us see the day-to-day life of an astronaut—demonstrating how he brushes his teeth, trims his nails, drinks coffee, and settles into bed. He made a particular effort to reach schoolchildren—answering their questions, performing an experiment they designed, and participating in a live sing-along from space with hundreds of kids gathered at the Ontario Science Center. He even made a music video while he was there, a captivating cover of David Bowie's "Space Oddity."
Beyond being the savviest astronaut on social media, Hadfield is a born communicator with a genius for teaching and inspiring kids and adults alike. His dispatches from space are as unassuming as they are compelling. I'm sure he's making many young people consider a career in science. I know I'm second-guessing the many science labs I blew off in college.
He also makes the world seem very small. On one of his Ask Me Anything sessions on Reddit someone asked if he ever tries to find his house from space. "At first, yes, but after a few days, you start to see the whole world as one place." Hadfield responded. His photos from space are awe-inspiring but also very human. Last month he shared a photo of Galveson, Texas, with the caption, "where my wife and I like to walk our dogs on the beach on Sunday mornings." Today he tweeted a photo of Hamburg, Germany, and noted that it would have been a good day to walk along the Elbe. There's a clear sense of camaraderie on board the Space Station, with people from three different countries sharing supplies, giving each other haircuts, and speaking in English and Russian interchangeably. Maybe the best illustration of their uniquely cosmopolitan attitude is that Hadfield and the American and Russian coming back with him tonight all consider landing in Kazakhstan coming home.
When he was speaking live to a school in Nova Scotia, Hadfield told the students, "I was about your age when I decided I wanted to become an astronaut. I hope that you remember today and continue to be curious about science and space. You are the space explorers of the future and the sky is no longer the limit." Coming from anyone else it would sound like a platitude, but Hadfield makes it real. And that's something special.
Watch his videos on YouTube with your kids. Here's one to get you started.View Comments | Add Comment
Making Schools Safer Places to Learn and Grow
May 13, 2013 Caroline Miller
Any parent who's been around the block a few times knows that kids behave differently at school than they do at home. It's an environment where they spend a huge amount of time, and where they interact with far more people—both adults and other children—than they typically do at home.
So of course the school environment has a big role in shaping how kids act and how they feel. I thought about this while listening to three articulate school psychologists talk, as part of Speak Up for Kids, about how we can make schools safer places—not just physically safe, but safer for learning and healthy development.
The presentation, by the National Association of School Psychologists, focused on what schools can do to support the mental health of their students. Some kids need help from a trusted adult to weather a short-term crisis; some need help to strengthen social skills and manage behavior; some need long-term support to deal with psychiatric or learning disorders.
One important goal is to make school a safe place for all kids to ask for help when they need it, or they think a friend needs help.
Melissa Reeves, PhD, a school psychologist and special education teacher in South Carolina, made a very interesting suggestion, I thought, to help make progress on this front. She proposed that learning about mental illness should be part of a school's health curriculum. "One of the most powerful things schools can do is to educate students about emotional health," she said. "What is depression? What is anxiety? Let them know that there are biological factors."
Reeves said she uses a diabetes analogy: "You can't control whether you have diabetes or not, but we can learn different interventions to address the severity of the diabetes. For some that might mean a change in diet. Some might need insulin. With mental illness, it might mean counseling. Some may need medication to address the neurological component."
She notes that educating children about mental health, encouraging them to talk openly about it and ask questions, tends to reduce stigma directed at kids who have a psychiatric, learning, or behavior issue.
The more kids understand, the better chance they have to accept—not just tolerate—children who are different, and that is the single best way to make schools safe places for all children to learn and grow.
You can listen to the whole talk here.View Comments | Add Comment
Depression: The Webcomic
May 10, 2013 Rachel Ehmke
Allie Brosh, the woman who writes the popular webcomic Hyperbole and a Half, stopped updating her blog in 2011. This would be bad news for any person hoping to make a living out of her blog, as I think she is, but it was particularly ominous to her readers because we knew that Brosh was depressed.
So I was glad to see that she resurfaced yesterday, with a new comic called Depression Part II (the more jauntily named Adventures in Depression was the last blog she wrote before the hiatus). Her latest post should be required reading for anyone who wants to understand what clinical depression feels like. In her characteristic combination of text and crude but expressive Paintbrush drawings, Brosch illustrates being unable to feel genuine emotion, needing to simulate the right reactions when talking to friends, and how dark it feels when life starts losing purpose.
At points the comic is funny, but it's also quite disturbing—Brosh describes thinking about suicide but never acting on those impulses. She talks about getting treatment, too, and is honest about how difficult that process can be.
Brosh says she's been working on the post "for the better part of a year (partly because I wanted to get it exactly right, and partly because I was still experiencing it while attempting to explain it, which made things weird." The result is great, I think, and I encourage everyone interested in depression to check it out.View Comments | Add Comment
A Bipolar Child, a Parent's Dilemma
May 10, 2013 Caroline Miller
Dorothy O'Donnell fought for years the idea that her precocious, ebullient, wildly imaginative daughter might have a mental illness. She admired Sadie's lack of inhibition—her ability to march up to kids on the playground and, pied-piper-like, lead them on an adventure to Princess Land, her impromptu dance recitals that charmed strangers at the fountain in the mall. She fended off warnings from preschool teachers that Sadie careened from giddiness to rage, that she chattered constantly during rest time, and that her antics were out of control.
But Sadie became increasingly anxious and explosive, increasingly unable to function in school and connect with other kids, until, at a low point, she told her mother, in tears, "I don't want to be on this planet anymore, Mama. I think I'd be happier in heaven."
Like all of us, O'Donnell had read about overdiagnosis of young children with ADHD, about the spiraling rates of kids being diagnosed with early onset bipolar disorder and, worse, being medicated. She didn't want to fall into that trap. And she has written a very compelling account of her struggle to do the right thing for Sadie. It's called Dancing in the Rain: The Story of a Bipolar Child, and while the headline gives away the diagnosis, there's a good deal more to the story.
If you've ever struggled with the question of whether to medicate a child, I think you'll find O'Donnell's piece very familiar, and quite moving.
I'm happy to report that I got an update from O'Donnell, who tells me that Sadie, though she still has rough spots, is now a happy and stable tween. "She loves art, fashion, hiking and singing and writing her own songs," says her mother. "And she has the self-confidence to try things I once thought she'd never be capable of—taking dance lessons, performing in a school talent show and training for her first 5-K race. Most importantly, she has a busy social calendar and plenty of friends."
For Sadie's own report on how she's doing, here's her video.View Comments | Add Comment
Two Moms With a Mission to End Stigma
May 10, 2013 Rachel Ehmke
Sandra Spencer is the executive director of the National Federation of Families for Children's Mental Health. But when her son was five years old, diagnosed with early onset bipolar disorder, she was a mom who had no clue how hard it would be to get him the help he needed. She was told by her school district that her son needed to be sent to a fulltime residential treatment facility—where he was four years younger than the other kids. It took discovering the Federation and learning about her son's legal right to a free and appropriate public education to get her son back home and into the classroom where he belonged.
The Federation hosted a thoughtful conversation on the harmful effects of stigmatizing mental illness this Tuesday as part of Speak Up for Kids. Spencer and Marie Niahros, a Family Resource Specialist and Training Coordinator, spoke not only as national advocates for children's mental health but also as mothers who have struggled to get help for their own children at school and in the community. The women experienced firsthand the shame and disbelief their sons' diagnoses raised. Spencer noted that many people still don't accept that children can have a psychiatric disorder, and people often prefer to blame parents for a child's issues. "What they didn't understand was that as a parent I already blamed myself," she said.
Before joining the Federation, Marie Niahros was a teacher for 13 years and always made an effort to advocate for the children in her class. But it wasn't until she adopted a child with mental health issues that she personally experienced the hurdles to getting support for a child who needs it. "I started to learn how I needed to talk to people, what kinds of words to use, how to be positive, and give people an idea of what my life was like." But it was hard going, and she knew that if she was having a difficult time, people without her background in education, who didn't know about special education laws, would have it even harder.
Spencer and Niahros spoke movingly about the harmful labels that kids with mental health issues get, and how those labels can stick with a child. Spencer described getting a wakeup call one day when her son came home from school frustrated and calling himself "stupid" and "dumb." As usual, Spencer told him that he was neither of those things, and then said, "Haven't I told you that time and time again?"
"Yes Mom, you told me that, but you don't hear what everyone else is telling me" he replied.
Both women are committed to fighting the stigma that makes people assume a child with mental illness is really just dumb, or lazy, or badly behaved. They say they want to instill hope in young people, and they're looking to us for help. Niahros emphasized the importance of using person-first language, or mentioning a person before their diagnosis—for example saying "a child with autism" instead of "an autistic child." They also cited the harmful way mental health is discussed in the media. In news reports and in the movies people with psychiatric issues are often portrayed as dangerous, despite the fact that people with mental illness are far more likely to be the victims of violent crime than perpetrators. "People fear what they don't know," Spencer says, which is part of why talking about mental health—what it really looks like, how it's treated, and what the barriers are to getting treatment—is so important. Spreading education and awareness can have an enormous impact on the life of a child. As family members and advocates Spencer and Niahros will attest to that. Watch their entire Speak Up for Kids conversation here.View Comments | Add Comment
Volkow Speaks Up on Science, Stigma, Addiction
May 7, 2013 Harry Kimball
Last night NIDA director Nora Volkow, MD, gave a fascinating presentation on the science of drug abuse and addiction, followed by an informative question and answer session. Both sections of the program highlighted a core Speak Up for Kids goal: the use of scientific knowledge to address stigma and ensure everyone gets the mental health care they need.
Dr. Volkow began by making a comparison between two pairs of scans: a pair of the heart, and a pair of the brain. One heart was healthy, and the other was of someone who had suffered a myocardial infarction—a heart attack. She indicated how the images showed glucose consumption in the muscles of the organ, a sign of health and activity. Bright colors lit up the healthy heart; the damaged one looked pale in comparison.
The two images of the brain were of a "control"—someone who had not taken drugs—and of a cocaine abuser. The story was the same, if more nuanced: the control brain had bright lights indicating activity in the prefrontal cortex, the control center. The other was dim. Damage had occurred. "By using these technologies we can document that there is harm in the brain, and what areas in the brain, in people that are addicted," she said. "Just like we have done in the past for cardiac disease or other types of medical illness."
Lest her point be lost, she summed up. "Our ability to document the pathology in the organ has led us to recognize that drug addiction is indeed a disease of the brain just like myocardial infarct is a disease of the heart."
This understanding for Dr. Volkow is a key to getting people with substance use disorders the help they need and deserve, a task made difficult by the enduring stigma surrounding addiction. In the litany of diseases that have emerged from the shadows—she mentions AIDS, epilepsy—she even counts "typical psychiatric disorders" as easier to accept and seek treatment for than addiction.
I recommend watching her entire presentation, which touches fascinatingly on the unique neurodevelopmental risk factors for addiction in adolescence and how they manifest in and are influenced by the social and psychological trials of young adulthood. And in the question and answer session, she provides real advice to teens and parents alike. What should a young person do if he is struggling with drugs? Talk to someone—preferably a parent, but anyone who will listen.
And on the other hand: Should a parent tell a child about his own past experiences with substance use? Everyone is different, Dr. Volkow says. But "it's important to have your kid trust in you," whether you are talking about the actual risks of drugs or your own experience. As she puts it, kids are smart, and they'll lose faith in you if you say you've never smoked pot, or that one hit will doom you forever. If you can't maintain "credibility," if you aren't "relevant," than you lose the chance to teach them about the real risks.View Comments | Add Comment
Forget DSM-5 for a Moment; What's This RDoC?
May 6, 2013 Harry Kimball
Last week Dr. Tom Insel, director of the National Institute of Mental Health, made a statement that was interpreted as a warning shot over the bow of the psychiatric community. He said the NIMH would not be using the DSM-5—that is, the latest revision of the Diagnostic and Statistical Manual, which will be released, with much fanfare, later this month—as the basis for research going forward.
This announcement was described in some blogs as the NIMH "abandoning" the DSM, and as "a potentially seismic move." So...is it? And will it affect families who are living with a psychiatric diagnosis?
Let's look at what Insel actually said. Essentially, he said that the DSM has been valuable in creating a coherent landscape of mental health diagnosis, but that its categories of disorders do not stem from any measurable causes or underlying biological conditions in the brain. His words (and note that "validity" is a scientific term, not a value judgment):
The strength of each of the editions of DSM has been "reliability"—each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.
This isn't news—the DSM has long been conceived of as an antidote to the often unknown "etiology" or cause of psychiatric illness. Lacking objective diagnostic tests, the manual was intended to create a coherent set of clinical categories so that doctors would be on the same page, and that research into treatments could be compared. Insel's "abandonment" of the DSM is in fact a symptom of his optimism that we are now or will soon be able to discover the "real," biological causes of mental illness. And the DSM will be a casualty of this emerging science. "We cannot succeed if we use DSM categories as the 'gold standard,'" he writes. "The diagnostic system has to be based on the emerging research data, not on the current symptom-based categories."
If I can summarize Insel's point: For what we need to do—for what it is becoming clear we can do—the DSM approach is not appropriate. Even if it is still the best way to diagnose disorders and deliver treatment and knit the mental health care system together, it must begin to be supplanted by a framework that will let us apply the science of the future to clinical care.
Insel has one in mind, and the NIMH will be funding research based on a new paradigm called Research Domain Criteria, or RDoC, first mentioned online by NIMH two years ago. "RDoC is a framework for collecting the data needed for a new nosology," or classification scheme, Insel writes. And "that is why NIMH will be re-orienting its research away from DSM categories. Going forward, we will be supporting research projects that look across current categories—or sub-divide current categories—to begin to develop a better system."
We have yet to see the effects of the NIMH's new focus on collecting "the genetic, imaging, physiologic, and cognitive data to see how all the data—not just the symptoms—cluster and how these clusters relate to treatment response," as Insel puts it. But in reading back through two years of speculation and opinion on the schism, I came upon a nice quip from Dr. Stuart Kaplan in an article titled "Godzilla Meets Tyrannosaurus Rex?" He writes: "As has been often said, the brain did not read the DSM." To put this another way: RDoC aims to be what the brain really has to say about its own disorders, dysfunctions, and what causes them. To listen to the brain with proverbial "new ears" of emerging science and to let it dictate new categories and associations that will lead to the new and better diagnostic tools and treatments of tomorrow.
What does this mean for the family in the doctor's office this weekend? People and families dealing with mental illness have already been made anxious by the possible changes in diagnosis and benefits that may accompany the DSM-5, and more uncertainty—this time from high up in the federal government—can't be reassuring.
But from what I have read—what Insel has written, what watchers have written in the past two years—what we are seeing is shift towards two different approaches in psychiatry, one focused on clinical expediency, another on the needs of scientific inquiry. In the words of Dr. Nassir Ghaemi in Medscape Psychiatry, the NIMH has decided that we need two sets of diagnostic criteria: "one for practice (DSM-5) and one for research (RDoc). The one for practice can be based on 'pragmatic' decisions about diagnostic criteria; the one for research should be 'real.'"
Vaughan Bell writes on Mind Hacks: "It's worth saying that this won't be changing how psychiatrists treat their patients any time soon. DSM-style disorders will still be the order of the day, not least because a great deal of the evidence for the effectiveness of medication is based on giving people standard diagnoses."
And Insel concludes: "RDoC is nothing less than a plan to transform clinical practice by bringing a new generation of research to inform how we diagnose and treat mental disorders."
Only time will tell how these two systems will eventually work together.View Comments | Add Comment
Flying Lessons and Exposure Therapy
May 6, 2013 Caroline Miller
Paul Graham is a Silicon Valley programmer, investor and enthusiast who runs a kind of training camp for tech entrepreneurs. Nathaniel Rich, who wrote about him in the New York Times, describes him as "infectiously giddy and hyperarticulate," part Bertrand Russell part PT Barnum. The story is about Graham's work nurturing start-ups and connecting them with investors. But what really got my attention was an anecdote Graham tells the writer at the very end of the story.
Graham, it seems, developed a severe fear of flying that made him miserable for more than a decade. Then he hit on what he described as a "miracle cure." I thought he was referring to behavioral therapy, specifically, exposure therapy. But it was flying lessons. That's pretty ambitious, I thought. Then I realized it was exposure therapy. Here's how the writer describes it:
He began with hang-gliding lessons. It was a gradual process. First he ran along flat ground with a hang glider strapped to his back. If there was any head wind, he would feel a sensation of lift but not enough to levitate. Next he walked 10 feet up a hill and ran down it, clearing the ground by several inches. He increased the height until, before he knew it, he was jumping off a 450-foot cliff. "By that point, you're not even worried anymore," he said.
Long story short, the glider led to about 30 hours of flight training in a Cessna. The training included one lesson in which the instructor shut off the engine and Graham landed the plane like a glider. Finally, he was ready to try what he called "the real thing." He flew on the shuttle from Boston to New York, and found it thrilling.
"It was like flying for the first time all over again," Graham told the writer. "Like starting over with a new brain. It felt fabulous. And I thought, Wow!"
I thought, what a great description of what happens in exposure therapy! From several inches to 450 feet to thousands of feet. It worked to conquer his anxiety because it was so gradual. That's exactly what children with anxiety disorders do in exposure therapy—start facing their fears in the smallest possible increments and work gradually to "real" situations that had been debilitating. Not any more.
From now on I'll think of it as taking flying lessons.View Comments | Add Comment