The Child Mind BlogBrainstorm

  • Open Science and Big Data in Brain Research Hit the Front Page
    Jan. 9, 2014 Michael P. Milham, MD, PhD

    The recent article by James Gorman in the New York Times draws attention to an exciting new era of neuroscience and the increasingly bold efforts of scientists to unravel the mysteries of the brain with technological, methodological, and analytic advances. Clearly appreciating the enthusiasm of the field, Gorman also does an excellent job of tempering ambitions and expectations with sobering realities. The task at hand—mapping the human brain in high detail—is massive, and not one that any single scientist, laboratory, institution or discipline can take on single-handedly. The neuroscience of the 21st century is emerging as a "team science," encompassing a broad array of disciplines (e.g., psychology, psychiatry, engineering, mathematics, statistics) and necessitating active, open collaboration.

    In this regard, the Child Mind Institute, along with the Nathan S. Kline Institute for Psychiatric Research, have worked and will continue to work to foster global collaboration. Our sponsorship and support of open data-sharing efforts such as the 1000 Functional Connectomes Project and its International Neuroimaging Data-sharing Initiative (INDI), has encouraged the aggregation and open sharing of brain images from more than 5,000 individuals independently collected from 50+ sites around the world. Attracting engaged interest from scientists in more than 80 countries and 2000 cities, these efforts have provided the global scientific community with the data necessary to rapidly make leaps forward in our understanding of disorders such as ADHD, autism and schizophrenia, and how to better diagnose them using brain imaging.

    Equally important, these two institutions have partnered in an effort funded by the National Institute on Mental Health (NIMH) to image the human connectome in clinical and non-clinical populations across the lifespan (ages 6-85), openly sharing the data with scientists around the world as it is collected. It is our hope that other institutions around the world will follow this example, and openly share the data as it is generated—not years after collection and publication.

    Importantly, as highlighted by the recent NIH Brain Initiative, open data-sharing is not enough to unravel the mysteries of the brain or the debilitating effects of mental illness on healthy brain function. The field requires tools capable of bringing down the barriers to entry for studies of the human connectome, and supporting the processing of large-scale, 'Big Data' samples. In this regard, the Child Mind Institute, in collaboration with the Nathan Klein Institute, is actively working to develop and share analytic tools for the examination of the human connectome.

    We are proud to be in the company of pioneers like those discussed in Gorman's article. One of his subjects, Dr. Deanna Barch, sums up our shared ethos pretty well. She is quoted: "The amount of time and energy we're spending collecting this data, there's no possible way any one research group could ever use it to the extent that justifies the cost. But letting everybody use it—great!"

    Michael P. Milham, MD, PhD, is director of the Center for the Developing Brain at the Child Mind Institute and a research psychiatrist at the Nathan S. Kline Institute for Psychiatric Research.

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  • Dyslexic Jamie Oliver Struggled With Stigma
    Jan. 6, 2014 Beth Arky

    Boyish TV chef Jamie Oliver is slicing and dicing his British grammar school, saying he was labeled, stigmatized and teased for needing extra help with his dyslexia.

    Both Oliver and Jimmy Doherty, a friend and organic farmer who shares the bill on his new TV show, Jamie And Jimmy's Friday Night Feast, were in the special-needs program at their school in Newport, Essex.

    Oliver, now 38, recalls, "While we were at school, I struggled. Imagine a boys' school. Thirty boys in the middle of English, bang bang bang on the door, 'Can we have Jimmy and Jamie for special needs?' Just us two out of our class."

    Cue the other children, who would sing "Special Needs" to the tune of "Let it Be" as the pair left the room.

    The experience left a scar. Oliver says he's "not a good reader. I've always tried to read a book and given up after the first page." In fact, it was only last year that he completed his first novel, Catching Fire in The Hunger Games trilogy, after he'd seen the film and because his daughter had "probably read 2,000 books in her lifetime. "I read this book and got completely hooked. I understood for the first time that it could be a joy."

    Oliver credits his success to something other than book learning. "I was rubbish in school but I was always very physical. That's what it's about. Get up and do something. Go out and set up a stall making the best cappuccinos, if that's what you want to do." At a time when schools are having kids sit more and move less when many need the exact opposite, Oliver's words take on particular import.

    We'd like to think things have improved for special-needs students since Oliver's school days. At least in the United States, inclusion allows for a large number of special-needs students to remain in class with dedicated special-needs teachers, while therapists and learning specialists often "push in"­—meaning they come into the classroom to work with kids, rather than pull them out.

    However, we know stigma remains, especially when special-needs students are in segregated programs and schools. Parents, educators and students all need to do their part to understand and accept differences so that everyone has a good shot at a positive school experience­.

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  • Another 'Parenthood' Character Is Autistic
    Jan. 3, 2014 Beth Arky

    Last night's Parenthood confirmed many fans' speculation about Hank, the photographer who took Aspie Max under his wing last season. As happens with many adults on the spectrum, he discovered his own autism trying to understand the boy he dubbed "Mad Max."

    It all started when Max felt Hank had broken a promise to him and had a full-fledged meltdown in the studio, flinging equipment as he ran out. Some might have written Max off after such an outburst, but Hank has always seemed to "get" the boy. Unfazed, Hank followed him home and expressed his concern to Max's parents, Kristina and Adam.

    Later, Adam gave Hank a book about Asperger's, hoping it might help him better understand Max. The book did much more than that. In a heart-wrenching scene, an increasingly agitated Hank is seen circling and marking countless passages and pages in the book.

    This leads him to former girlfriend Sarah—who also happens to be Max's aunt. He starts grilling her: "Listen, do I not pick up on cues? ... social cues, like Max?" She's confused. 

     "I was reading this book... for the kid and all of a sudden, I'm not reading about the kid anymore—I'm reading about me," Hank explains. "This book is describing me. Difficulty expressing emotions, insensitive to nonverbal cues of others, taking directions literally, trouble reading between the lines, uncomfortable with eye contact. I'm seeing my life here, I'm seeing my life!" He starts to wonder if his autism isn't behind his divorce, the loss of big jobs, problems with his daughter, and even his failed relationship with Sarah.

    Often, one or both parents of an autistic child realize that they, too, are on the spectrum, either by self-diagnosis or an official Dx. (While researchers have yet to nail down a genetic component to autism, it is seen running in families.)

    Hank's epiphany also says a lot about how adults like Dan Aykroyd and Susan Boyle are being diagnosed late. Asperger's wasn't even a standardized diagnosis until the late 1990s, only to be eradicated from the latest Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the U.S. psychiatrists' bible.

    By the end of the episode, it seemed that Hank was coming to terms with his autism as he and Max made peace. Hank may have learned more social graces and self-control over the years, but he still has much in common with his prodigy.

    It was a heartwarming moment. Everyone needs friends who "get" them. Who better to get Max than a fellow Aspie?

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  • A Mom Turns a Holiday Mess Into a Memorable Escape
    Jan. 3, 2014 Caroline Miller

    We spend a lot of time thinking about how to foster resilience in children, but we don't talk as much as we should about resilience in parents. With that in mind I can't resist sharing a lovely piece by our friend and writer Beth Arky about her recent holidays.

    Beth was planning to take her 10-year-old son to visit her family in St. Louis for the holidays, but just before the trip she injured her ankle. Like most of us would, she tried to ignore it until the pain finally drove her to the doctor, where she learned she had a fracture. Hobbling from one doctor's office to the other was bad enough—why does it start raining and all the cabs disappear just when you need one desperately?—but then her aging relatives thought better of hosting a very active boy with his mom not 100 percent, and the trip was postponed.

    So Beth, worried about how disappointed her son would be, came up with a Plan B that she could manage with little mobility and would delight a child who adores nothing more than a swimming pool and room service. Let's just say it wasn't the Ritz Carlton, but it afforded a lot of fun and unexpected encounters.

    I'm not going to give away the details, but Beth, who writes with candor and humor on a blog called The Water Is Wide, rebounded from her disaster with awesome ingenuity, and the result was memorable for both mother and son.

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  • What We Are Missing in the Rush to ADHD Diagnoses
    Dec. 30, 2013 Caroline Miller

    Of all the people worrying in print lately about overdiagnosis of ADHD, I think Daniela Drake, writing on Salon, has the most important thing to say. A doctor and the mother of a son who was wrongly diagnosed with ADHD, she admits to being credulous when she was told that her son had the disorder, and, frankly, seeing a lot of other kids who looked like they had it, too. "I'd see students bouncing off the walls," she writes, "and think, 'They should medicate that kid.' "

    But the medication didn't help her son, and more testing eventually revealed that he had an auditory processing disorder and a severe milk allergy that left him fatigued and unfocused. And she was wrong about the other kids, too. "That child I saw bouncing off the walls had something called a sensory processing disorder. Another had visual developmental problems. Yet another had celiac disease. And all of them were at one point wrongly diagnosed with ADHD."

    What concerns Dr. Drake the most is that kids who are being quickly and sloppily diagnosed with ADHD may have other very real problems that are causing their inattention or acting out in school. She mentions learning disorders, sensory processing issues, visual challenges, food allergies. I would add trauma, problems at home, and anxiety—a common cause of inattention and disruptive behavior.

    Dr. Drake's point is that while ADHD has been widely publicized by the pharma companies, many pediatricians, social workers, teachers, and parents don't know enough about other possible problems that could be causing their children's behaviors. "The only thing we've all ever heard of is ADHD, so these other disorders aren't even considered."

    I would also add that it's in school that the majority kids are flagged for having problems with inattention and hyperactivity, by teachers who are under growing pressure to keep kids from falling behind. Many are diagnosed by overworked pediatricians who see ADHD meds as the only thing they have to offer struggling students whose families don't have the resources for more costly diagnosis and treatment.

    When we see those shocking numbers of kids being diagnosed with ADHD, I think we need to look at why so may kids are having trouble meeting expectations for them in school. ADHD medications help a lot of kids who really have the disorder to live up to their potential, but in other cases they may just forestall recognizing why a child is struggling, and what we need to do about it.

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  • Chiara de Blasio Goes Public About Depression, Substance Abuse
    Dec. 26, 2013 Caroline Miller

    Chiara de Blasio, the lovely, bubbly daughter of New York's new mayor, Bill de Blasio, likes to wear flowers in her hair. She's one of the reasons New Yorkers elected de Blasio. The family is hugely appealing: unpretentious, comfortable, candid. They seem real. During the campaign her brother Dante got the attention for the afro, but she's the one who charmingly bragged that her dad isn't "some boring white guy."

    On Christmas Eve Chiara became a little more real and a little more candid, releasing a YouTube video about her struggles with substance abuse during her freshman year in college. She acknowledged wrestling with depression through her "entire adolescence," and coming to depend on alcohol and marijuana to be more comfortable socially. She thought she could handle it, she says, until she went away to Santa Clara University in California (a college she chose, by the way, because she got a scholarship, she told New York magazine, and she wanted to avoid the "crazy loans" so many kids are depending on to finance college).

    Chiara highlights one of the reasons freshman year is painful for so many students: She said she wasn't prepared emotionally for the challenges of being in such a different place. And she thought starting over would allow her to leave her old struggles behind. "I thought all of my problems would go away," she said, "if I just got on a plane and flew 3,000 miles away."

    That didn't work—as it often doesn't—and her substance use accelerated. She thanks her therapist for referring her to an outpatient treatment center, where she was able to work, in a group setting, with others her age who are dealing with depression and anxiety.

    She doesn't want to make it sound easy—"It's the hardest thing I've ever done"—but she's very positive about the results of getting sober. "Removing substances from my life has opened so many doors for me," she says. "I was actually able to participate in my dad's campaign. Now I'm doing well in school and actually getting to explore things that aren't just partying."

    She urges more open discussion about alcoholism and drug abuse, because "nobody can do sobriety on their own. You have to keep relying on those that have been there, finding people who have gone through it."

    Political commentators are railing about the slick handling of a potentially troubling issue for the mayor-elect who made his family the center of his campaign—getting it out of the way days before the move into Gracie Mansion. But for those of us who worry about the mental health of teenagers and college students, Chiara's down-to-earth candor trumps political considerations. And as New Yorkers, it's refreshing to have a first family that doesn't pretend to be perfect.

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  • A Psychiatrist Rethinks Antipsychotic Meds for Schizophrenia
    Dec. 23, 2013 Caroline Miller

    Sandra Steingard is a psychiatrist who has been treating people who are psychotic for 30 years. She recently published a piece in the Washington Post that spelled out some changes in her thinking about how we can best help people who struggle, over a lifetime, with things like schizophrenia and bipolar disorder. She has important things to say about what it means to live with mental illness and how to treat it.

    The piece was prompted by a tragic shooting last fall, in which a man who told people he had been "hearing voices" killed 12 people at a Washington, DC, area Navy Yard. As she puts it, "Almost every day I meet with individuals who hear voices that no one else hears, are sure the TV or radio is talking to them or have such confused thinking that it is hard to understand what they are trying to tell me."

    Dr. Steingard explains that accepted practice, for many years, has been that patients with schizophrenia should be on antipsychotic medications, not just to control symptoms when they occur, but indefinitely. Often-cited studies from the 1970s and 1980s had found that patients who stopped taking medication after symptoms subsided were more likely to relapse than those who kept taking it. And while Dr. Steingard notes that very, very few people who hear voices or suffer delusions are a danger to anyone else, those voices and delusions can be very problematic for the person who's having them, not to speak of those who love him. Still, preventing relapses isn't the only priority. Staying on meds didn't necessarily mean that the patient's quality of life was better. And since antipsychotics have undesirable side effects, including dangerous weight gain, she began to have second thoughts. 

    Then she saw the results of a Dutch study that showed that over 7 years, patients who were not continuously on antipsychotic medication—"they stopped taking drugs when they became well but restarted them if symptoms emerged"—were much likelier to be able to work and have meaningful relationships than those who took medication continuously. And they had no higher rate of relapse. As NIMH director Tom Insel wrote in a blog post about the study, "Clearly, some individuals need to be on medication continually to avoid relapse. At the same time, we need to ask whether in the long-term, some individuals with a history of psychosis may do better off medication."

    So Dr. Steingard took a big step, and began discussing with a group of her patients the option of reducing their medication. Some two-thirds of the patients in the group decided to try cutting back, with close monitoring. "The Dutch study shifted the focus away from the belief that we need to eradicate all symptoms of schizophrenia to a focus on improving the quality of patients' lives and health, the relationships they have, the work they do."

    Dr. Steingard's account of the evolution in her thinking (and practice) is very compelling and it proposes, as Dr. Insel's piece does, less reliance on medication and more on combining medication with things like family support and behavior therapy. And it involves seeing a person with mental illness as an active participant—indeed, the most important participant—in her treatment. "The point is that this is not a choice I should be making for my patients," she writes. "It is a choice I need to make with them."

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  • On Author Ned Vizzini, Suicide, and Learning to Ask for Help
    Dec. 23, 2013 Harry Kimball

    I think I met Ned Vizzini, the essayist and young adult author who committed suicide last week, at least once during the mid to late '90s. We went to different high schools, but kids at New York City schools like Stuyvesant (where Ned went) and Hunter (me) tended to run together. But it doesn't matter if I met him in person—everyone knew who he was. He was writing for the New York Press! He shared space in a newspaper with George Tabb, Amy Sohn, Jim Knipfelnames that might not mean a lot to most people now, but who were heroes to young weirdos like my friends and me.

    Ned VizziniAnd Ned made it. It is an understatement to say that not everyone who dabbles in the arts in high school transitions to a successful career. My high school band certainly isn't still together. But Ned took the ambition that had landed him in the Press and the Times magazine and nurtured it. That he did this while struggling more than others is clear to anyone who's read his novel It's Kind of a Funny Story, a fictionalized retelling of the 5 days he spent in a psychiatric hospital to address his suicidal depression.

    Through that book, the movie that was based on it, and Ned's outreach efforts to adolescents with depression, he turned a harrowing episode into a learning experience for himself and for others. In an undated interview at strengthofus.org, he was unequivocal in his advice for young people: "If you're feeling suicidal, call a hotline. Suicidal ideation really is a medical emergency and if more people knew to call the suicide hotline we'd have less suicides." He's speaking from personal knowledge, and I have to believe that the young people who heard his message could feel the sincerity and the urgency.

    Unfortunately, it seems that in the end he couldn't fully take his own advice, and that shows how insidious the disease of depression is. He said something else in the interview about his hospitalization that is heartbreaking in hindsight. "More than anything else, I didn't want to go back. I wanted it to be something that I learned from and the way I could prove that was by never returning." I have to think that if he were giving advice to someone in need, he might say, "It's OK to go back. It's not OK to hurt yourself."

    One of the times I might have met Ned was when I went down to Stuyvesant to play a show with my band. We were one of the groups on the bill for "Gay Day," an LGBT awareness event in the lobby. It's touching that as teens we were so eager to be involved in social justice efforts, and it's also incredible to see how far the LGBT community has come in just 15 years. The same can't be said of mental health issues. Why did Ned Vizzini commit suicide? I don't know. But that someone so clear about the risks of depression and how to get help could still fall prey to it surely means that something is wrong.

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  • ADHD and Pharma Advertising
    Dec. 16, 2013 Caroline Miller

    A major story in the New York Times over the weekend offers a riveting look at pharmaceutical advertising and other spending to promote ADHD medication to parents, teachers and doctors. The ads are shameless and they do, indeed, suggest that stimulant meds are good for everything from improving lackluster grades to getting kids to take the garbage out. Alan Schwarz, who's made a specialty of reporting on abuse of ADHD meds in the Times, has done a good job exposing the pharma money being funneled to doctors and advocacy groups to push the medication.

    Schwarz links these ads and payoffs to the steep rise in prescriptions for ADHD medication over the last decade and more. What he doesn't do is offer any evidence that these marketing efforts are the major, or even a major, factor in the increase.

    Proving the impact of marketing campaigns is notoriously difficult to do, especially when there are other factors that could be driving the increase. In this case, there are hugely important changes in our economy and educational system that make school failure much more serious in the 21st century than it was in the 20th. 

    If parents are quicker to worry about their kids struggling in school—and to seek help—than they used to be, it seems less likely to be the result of magazine ads for Adderall than awareness that there are no longer good jobs for kids who don't get a good education. They're more worried about kids succeeding in school because the stakes are higher than ever.

    If teachers are quicker to blow the whistle on kids who are disruptive or falling behind in their classrooms—and to suggest that parents get help—it seems to me less likely to be because they've drunk the pharma kool-aid than because schools now lose their funding if not enough kids pass standardized tests. As Dr. Stephen Hinshaw has documented, some states have much higher rates of diagnosis and medication for ADHD than others, and the highest are those that were early adopters of laws, now in effect all across the country, that base school funding on student test scores. Every child who fails is now a problem for the school, too.

    Of course we suspect it's true that some kids who are getting diagnosed with ADHD don't have the disorder—if they're struggling, it may be from anxiety or trauma or lack of sleep or that they just aren't mature enough to manage current expectations for kids in elementary school, as one pediatrician suggests in the comments of the story. What we don't buy is that large numbers of children are being medicated for problems that aren't real—that are invented by drug companies or by overweening parents. Such an assumption does a real disservice to the majority of parents who go to their pediatrician seeking help because they've hit a dead end. And as long as we place the blame on a Good Housekeeping ad we continue to ignore whatever real problems these kids are facing.

    The other group that always gets lost in the conversation about the overdiagnosis of ADHD is the many children who really do have the disorder. For kids who do have ADHD, medication can be a lifeline, giving them an opportunity to flourish and a chance for extremely stressed families to recover. For those families, popular skepticism of both the diagnosis and the medication just adds to their challenges. I give the last word to another commenter on the Times story:

    Like everything else, ADHD can be exploited and it is. This is unfortunate for those who have struggled for years to overcome the "there's no such thing" barrier and receive the help they need. Now we have the other extreme—ADHD turning up everywhere and in the end, another reason to dismiss those with a real, life-impairing disorder.

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  • This 14-Year-Old Boy Hears Voices
    Dec. 13, 2013 Caroline Miller

    A CNN reporter named Wayne Drash, after covering the Sandy Hook School shootings last December, decided he needed to know more about mental illness. He wanted to take a closer look, not to try to explain a national tragedy, which tends to be the only time we really pay attention to mental illness, but to understand how it affects an ordinary American family.

    The result is an intimate and compelling multi-media story on CNN.com about a 14-year-old boy named Daniel who has bipolar disorder with psychosis. Daniel has agonizing episodes in which he hallucinates and hears voices urging him to kill his brother. To alleviate the pain, and the fear that he might actually hurt his brother, he walks or runs or hurts himself. He is often suicidal and at least once made a serious attempt to end his life.

    Daniel has a remarkable mother named Stephanie Escamilla who works with him tirelessly to help him manage his episodes and fight those voices and have, as much as possible, a normal life. With medication and careful monitoring of the things that trigger his psychotic episodes, he can sometimes go without one for months. But he has also been hospitalized often when they're out of his control.

    Stephanie and Daniel (and the rest of the family) welcomed Drash into their home and their lives in the hope that their candor would help people understand what it's like to struggle with mental illness. It's a terrific piece, and their willingness to share their one-day-at-a-time battle is as impressive as Drash's decision to devote months of attention to it.

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