The Child Mind BlogBrainstorm
AP Style: Nuanced Understanding of Mental Illness
March 8, 2013 Harry Kimball
Yesterday the Associated Press released new guidelines for its reporters when writing about mental illness, and we're happy to say that the entry in the AP Stylebook hits all the right notes. (And since AP Style is essentially the lingua franca of news organizations everywhere, these standards will be widely disseminated.) Rarely does a press release warm the heart.
The best thing about the AP's guidelines is that they aren't really about word choice—although it does caution reporters not to "use derogatory terms, such as insane, crazy/crazed, nuts, or deranged." They are more about when and why we mention mental illness, and what sources of information are appropriate and credible. "This isn't only a question of which words we use to describe a person's illness," AP's executive editor says. "There are important journalistic questions, too."
The guidelines start strong: "Do not describe an individual as mentally ill unless it is clearly pertinent to the story and the diagnosis is properly sourced." The AP is telling its reporters to think before they report a fact that could have nothing to do with the story to resist preconceived assumptions that that weirdness and violence are tied to mental illness—and not to believe armchair diagnosticians for the same reason. Excellent advice.
"Do not assume that mental illness is a factor in violent crime." Check. "Avoid unsubstantiated statements by witnesses and first responders." Check. "Double-check specific symptoms and diagnoses." Double-check.
These are guidelines for good reporting, and I think it takes courage for an organization to admit that it needs to be a little more specific in saying good reporting practices don't stop when mental illness enters the picture. And that leads to the kicker. Go to the source, the guidelines read. "Whenever possible, rely on people with mental illness to talk about their own diagnoses." J-school 101, but we're happy to see it in print.View Comments | Add Comment
Three Moms on How Kids Keep Them in the Moment
March 8, 2013 Beth Arky
Last month, Emily Rapp did the unimaginable: She buried her child. Her son, Ronan, died just short of his third birthday. Rapp and her husband had been living with the knowledge that he would not survive long since January, 2011, when their then-9-month-old was diagnosed with Tay-Sachs disease. To deal with her grief, Rapp turned to writing a blog and now a new book, The Still Point of the Turning World, which offers all parents a powerful message, one that can be so easily forgotten in a world of ambitious parenting and overscheduled kids.
"A child is a person, not a project," she wrote recently at Today. "Ease up. Chaos will find all of us eventually, but in the moment, how can you be fully present? How can you love your child purely and simply, with no agenda, without a goal, without a net?"
As she says in the book, "Ronan was Ronan. He was never just a sick baby. My life as his mother was more than just managing the illness and the many difficulties it presented." On the Today show this morning she added, "The message that I want the book to convey is that we should love our children for who they are in the moment, right now, no matter what they become or what they achieve."
This reminder takes on special meaning for parents of children and teens with developmental, cognitive, emotional or social challenges, who can find themselves consumed by 24/7 advocacy and support for their kids.
We thought about Rapp's comment when we read Beth Andersen's latest post about her son, Nik, at Maternal Instincts. She rejoices about a milestone "many, many years in the making" and "still a work in progress": Writing his name at age 9.
Nik has multiple disabilities including autism, cerebral palsy and other health issues related to his extremely premature birth at 27 weeks, and he's nonverbal. "He may not ever really talk; we suspect he has some nerve damage to some of the areas needed to articulate certain sounds," Andersen explains. "But he tries. He always, always tries. I think that is the gift I was really writing about...his grit and determination. He's taught me so much in his short life. I am so incredibly proud of his efforts and his perseverance."
Andersen says that having a child born so prematurely and so fragile teaches you a lot about yourself. "You learn your capacity to block out fear and focus on love and hope," she says. "Watching other very sick babies around you—some of whom don't make it—teaches you to stay firmly grounded in the moment. All you have is here and now; you learn to celebrate the things which so many people take for granted every day."
Jess Wilson, who blogs at Diary of a Mom about her autistic daughter, shares Andersen's and Rapp's way of thinking. Yesterday's update on Diary's facebook page:
"Love may not always be expressed in the ways in which we've become conditioned to believe that it 'ought' to be. But if we are open to accepting it as it is most freely and comfortably given, we get the immeasurable gift of authenticity—of raw, genuine emotion unadulterated by the confines of convention and expectation.
"And when it is delivered," she adds, "if we are there—truly THERE to receive it, it is a gift beyond measure."View Comments | Add Comment
Genetic Link for ADHD, Autism, Bipolar, More
March 5, 2013 Harry Kimball
Last week the New York Times reported on an intriguing study—"the largest genetic study yet of psychiatric disorders," according to its authors-with these results: there are genetic risk factors for disorders like autism, bipolar disorder, schizophrenia—and some of them are the same across disorders.
The authors looked at genetic information from more than 60,000 people, about half with no psychiatric diagnosis and half with schizophrenia, bipolar, autism, major depression, or ADHD. In a nutshell, they found mutations in the clinical population at four DNA locations that conferred some risk for all five disorders. Although two of these locations suggest the possibility of a novel treatment, the authors caution that the impact of this study should be more along of the lines of changing how we think about mental illness.
The study jibes in particular with the push to replace the "subjective" measures like symptomology in diagnosing psychiatric disorders with objective tests, which haven't been available. As the authors write in their conclusion: "Our findings are relevant to the goal of moving beyond descriptive syndromes in psychiatry and towards a nosology informed by disease cause. " (We should note that the risk implied by these DNA mutations is very small—and that the genesis of all of these disorders remains a complex combination of biological and environmental factors.)
This study is particularly important because investigators have not only located a contributing biological risk factor, but they've put forward an argument for reimagining how we group disorders.
As the authors add: "The finding that genetic variants have cross-disorder effects is an empirical step towards helping clinicians understand the common co-occurrence of clinical phenotypes in individual patients." Or, in English: These sorts of results have the potential to help real people struggling with mental illness get better care from better informed clinicians. Sounds good to us.View Comments | Add Comment
Art Auction Raises $2 Million for Science of Brain Development
March 4, 2013 Caroline Miller
We called it "great art for great science," but the Child Mind Institute's benefit auction at Sotheby's last week also turned out to be about great friends. Peter Brant and Stephanie Seymour Brant curated a group of 22 stellar pieces, and the crowd bid so enthusiastically that the evening succeeded in raising more than $2 million for the search for better understanding, and treatment, of childhood psychiatric and learning disorders.
Joining the Brants as hosts were Daniel and Brooke Garber Neidich, and guests included Larry Gagosian, John McEnroe, Aby Rosen, Ron Delsener, Dori Cooperman, Vito Schnabel, and Jessica Hart. Artists who donated works included Jeff Koons, Elizabeth Peyton, Enoc Perez, John Currin, David Salle, Julian Schnabel, and Patrick Demarchelier.
Encouraged (to say the least) by auctioneer Tobias Meyer, Sotheby's worldwide head of contemporary art, bidders blew by the $95,000 estimate on Nate Lowman's "Fleshtone," which finally sold for $235,000. And the evening's top bid went to Urs Fischer's "Paranoia/Squirrel," which hit $360,000. (By the way, if you missed the Fischer show at the New Museum a couple of years ago, you might have seen the giant yellow teddy bear with reading lamp that was installed outside the Seagram Building for several months.) Other standouts that sailed by their estimates were a Richard Prince triptych that drew $175,000 and a Dan Colen that drew $145,000.
Many thanks to the Brants and Sotheby's, all the terrific artists who donated work, and all the collectors who participated so generously. It was a huge success for the science of brain development, and the kids in the future who will benefit from it.View Comments | Add Comment
One Man's (Involuntary) Introduction to Mindfulness
March 1, 2013 Tim Kelly
Every morning when I wake up I take a few minutes to identify three goals for my day. Then I put a rubber band around my wrist as a reminder of them. At the end of the day, if I have achieved my goals, I add the rubber band to my expanding rubber band ball.
Last Friday ended a productive workweek filled with wins and an expanding rubber band ball. On Friday evening, I checked my briefcase and hung my coat on a restaurant wall to settle down for a Mexican dinner with friends. When we were ready to leave, I grabbed my briefcase, and scrambled inside my coat pocket to check my email. No phone. It wasn't in my coat. Where could it be? The table? Nope. The floor? No. My pants pockets? I checked three times. "Quick," I yelled to my friend, "call it, it has to be here." It wasn't. Someone had stolen my phone.
I was just thinking how vulnerable I would be without my communication lifeline, weekend to-do lists, time-saving tools, articles that I had saved to read—the list (on my phone) goes on and on—then I remembered I also had no Internet at my apartment. It had been shut off earlier in the week when the credit card on my cable account expired. The notification emails from the cable company apparently were some of the 4,000 unread messages in my inbox.
Cue 26-year-old metropolitan male meltdown in New York City.
When I got home I was exhausted. I decided to de-arm my rubber band, add it to my rubber band ball, and disconnect until I had to reconnect with a phone on Monday.
I woke up late on Saturday and missed the spin class I had signed up for 26 hours in advance using one of my phone apps. The weekend papers didn't download onto my iPad without Internet service, so I grabbed them along with a coffee at the store on the corner. I read for hours on a park bench overlooking one of the snow-covered Central Park lawns—a view that would have been a "no filter" Instagram shot, for sure.
After reading the papers, I picked up my laundry and went back to my apartment. I don't own a TV (buying one has been on one of my phone task lists for three years) and without Pandora, I decided to clean my apartment to songs on CDs that I had discovered over the holidays in my childhood bedroom. They were incredible tunes, the type that motivate you to sing loudly and badly, and break into an occasional dance with a ski cap and a "decorative" orange apron.
The allure of recouping some time and space to think, on my own and without interruptions, was suddenly attractive. I spent my two disconnected days kicking around coffee shops, reading, exercising, and eating at new restaurants, my thinking not punctuated by "breaking news" alerts or Facebook status updates. I walked around not in conversation on the phone. I ate at new restaurants without checking online reviews. There were many unexpected firsts during my post-meltdown personal days and it was terrific.
At this point, I want to extend a big thank you to the person who stole my phone on Friday night. You're a dirtbag, 100 percent, but by having my smartphone in your hand, you kept it from mine. That, in turn, forced me to recoup some mindfulness and reorient myself before another week's worth of rubber band goals.
The return on investing in a dose of mindfulness is invaluable. My mindful weekend helped me recapture a motivating vision of my future—a context my daily goals have been lacking in recent months. My two post-meltdown days taught me that there's a time and a place for technology-assisted activities, and a time to be mindful.
Now, with all this said, I'd be remiss not to report that by Monday I was anxiously, not mindfully, waiting to receive my new phone. But when the workweek comes to a close and I celebrate over dinner (with my phone in a more secure place), my expectations for the weekend will be refocused to include time and space to think, recharge, and reposition myself—and, of course, to pay that overdue cable bill.View Comments | Add Comment
Why We Love Jennifer Lawrence (Even More)
Feb. 26, 2013 Caroline Miller
In fact, it's pretty hard not to love Jennifer Lawrence, who's played some of the most compelling female roles in movies in the last few years, from Ree in Winter's Bone to Katniss in The Hunger Games to Tiffany in Silver Linings Playbook. But after the Academy Awards Sunday night we appreciate her even more, for taking the opportunity, talking to the press just after her win, to commit to fighting for openness about mental illness.
The director of Silver Linings, David O. Russell, has been fabulously direct about how his family's struggles influenced the film, and Robert DeNiro made his own statement by actually crying on the Katie Couric show. Now Lawrence has stepped up as well, and we couldn't be more pleased. "I don't think we're going to stop until we get rid of the stigma for mental illness," she said. "I know David O. Russell won't, and I hope that this helps."
She went on to say, "It's just so bizarre how in this world if you have asthma, you take asthma medication. If you have diabetes, you take diabetes medication. But as soon as you have to take medicine for your mind, it's such a stigma behind it."
If you 've seen the movie, this comment is funny because it reflects the very first bonding moment between Tiffany and Pat, the bipolar character played by Bradley Cooper. The two have barely met before they blithely embarrass their dinner party companions by comparing notes on various meds they've taken.
In the movie Lawrence plays someone struggling with depression; she brings to the role a combination of vulnerability and toughness that's hard to resist, and reflects the courage of many people who have wrestled with mental illness.View Comments | Add Comment
MTV Looks at Autism in 'World of Jenks'
Feb. 25, 2013 Harry Kimball
I just took a look at a couple of episodes of the second season of World of Jenks, a documentary series on MTV that follows director and star Andrew Jenks as he injects himself into the lives of three diverse young people in "extraordinary circumstances." One is D-Real, a dancer and former drug dealer who is fighting against the gun violence on the streets of Oakland that took his brother. One is Kaylin, an aspiring fashion designer who almost lost a leg and her pelvis to an aggressive cancer that constantly threatens to return. And then there is Chad, who is autistic.
Chad's verbal communication is excellent, but his strict routines are limiting; he sleeps every night on the floor of his parents' room. He is affable and funny, but his discomfort with certain social situations and environments teeters towards explosive anger. At 21, his emotional development seems to lag far behind his physical size.
The ostensible star of the show, Andrew Jenks, is genuine; his enthusiasm and desire to help appear real, and the show is an upbeat one. But running through Jenks is a melancholy that defies Jenks' optimism and cheerleading. This vein is obvious for D-Real and Kaylin, struggling with gun violence and cancer.
The melancholy in Chad's story is further below the surface. In the episodes I watched he prepares for and participates in his graduation from a special needs school in Westchester County, New York. Jenks emphasizes that this is really important for Chad; Chad himself expresses "exquisite" relief at having graduated.
But when Jenks turns his camera on Chad's mother after the graduation, she says the moment is "bittersweet." A teacher celebrating the accomplishment of the graduating class of the Westchester Exceptional Children's School also strikes an ominous note. "The sanctity and safety of our school is no longer with them," she says.
Chad is at the age when young people begin to "age out" of supportive care, educational accommodations, and special education provisions required by law. For people like Chad and his family, who may have depended on support, it can be a profound challenge. Chad's ability to move independently in the "real world" is untested; in one scene, we see a nightly routine: his father brushing his teeth for him.
There are lessons there to be learned by the viewers of World of Jenks, lessons about the variability of the hurdles people face and the universality of the courage it takes to approach them. Which brings me to another star of the series, one that might escape many viewers: the Westchester Exceptional Children's School.
On its website, the school describes its own journey. "We opened our doors in the Goldens Bridge Community House in 1969 to two children, a staff of two, and eighty dollars, in what was then considered an 'experiment'—day schooling instead of hospitalization." And it hasn't been easy. "We have had to meet the familiar specter of debts, loans and mortgages in a stubborn struggle to keep our doors open and our ideals alive. Yet a small band of parents and professionals, filled with a tremendous sense of purpose, helped carry us."
That dedication, that resolve, and that cooperative approach are very much on display in this series.
World of Jenks premieres on MTV March 4, 2013.View Comments | Add Comment
White House Plans Huge Brain Mapping Push
Feb. 18, 2013 Harry Kimball
News today that the Obama Administration is planning to unveil an ambitious, Human Genome Project-like initiative to map the human brain is music to our ears. Though the details aren't clear, those in the know are suggesting it will be similar to that billion-dollar effort that lasted more than 10 years. Of course, it won't be easy. As the Times notes:
Composed of roughly 100 billion neurons that each electrically "spike" in response to outside stimuli, as well as in vast ensembles based on conscious and unconscious activity, the human brain is so complex that scientists have not yet found a way to record the activity of more than a small number of neurons at once.
Figuring out what is going on deep down in the brain, how it affects our thoughts, moods, and behaviors, and how to helpfully represent this that information is exactly what our science team is doing at the Child Mind Institute. And this nascent federal interest promises to give added momentum to a project that researchers here at the Child Mind Institute and around the world have already begun. We can only hope that the Administration embraces the open science and sharing ethos that is driving innovation in discovery science, and bringing us closer to a map of the brain, whatever it may look like. That hope isn't outlandish—the National Institutes of Health are already leading the charge to make data freely available and encourage a scientific culture of radical transparency and collaboration.
We look forward to an official announcement of this initiative, and what the resources of the federal government can do to accelerate inquiry into the brain. But rest assured—scientists and researchers in every field all around the world have already taken the first steps. Now, maybe, they get to hop on a locomotive.View Comments | Add Comment
Why I’m Rooting for ‘Silver Linings’ for Best Picture
Feb. 18, 2013 Harold Koplewicz
I don't know about you, but I know what I'll be rooting for at the Academy Awards Sunday. In the aftermath of Newtown, I'd like to see the Best Picture Oscar go to Silver Linings Playbook, because the most important health issue facing our nation is untreated child and adolescent psychiatric disorders.
I've already written about what an honest and accurate movie Silver Linings is (despite some Hollywood gloss) in depicting what it takes to wrestle effectively with mental illness. Of course school shootings are very rare, and people with mental illness are much more likely to hurt themselves than anyone else. But the movie illustrates how a chronic illness like bipolar disorder can be treated and managed, just as, say, asthma or diabetes can be, with medical intervention and vigilance and support from family and friends. And it also shows how, left untreated, it can be debilitating both to the sufferer and those around him. It's a powerful message that inclusion and acceptance by the community are important parts of helping someone avoid frustration and hopelessness.
The trouble is that diseases above the neck just don't get treated the same way as those below the neck: Stigma and embarrassment and misunderstanding get in the way of the happy ending, or at least promising future the character in Silver Linings enjoyed.
After Newtown, we've begun having a national conversation about the importance of mental illness, and a win for Silver Linings would help keep that going. I'm a big movie fan, and the movies nominated this year dealt with important issues, from chronic disease and old age in Amour to war, terrorism, and security in Zero Dark Thirty. But Silver Linings touched the issues closest to my heart. It made us laugh and cry and most importantly recognize that mental illness is real, common and treatable. An Academy Award would be a great vote of approval.View Comments | Add Comment
Details Emerge About Adam and Nancy Lanza
Feb. 18, 2013 Caroline Miller
Journalists are beginning to piece together a clearer picture of the lives of Adam and Nancy Lanza, in an effort to understand what could have driven a quiet young man no one suspected of harboring violent fantasies to commit the atrocity in Newtown.
The Hartford Courant and Frontline teamed up to interview people who knew mother and son, including friends of Nancy's, parents of Adam's classmates, and a former school staff member who took an interest in trying to help Adam, who he saw as severely withdrawn. The Courant reports, in the first of a two installments, that Nancy told friends and teachers that Adam was diagnosed with sensory processing disorder and Asperger's. He had an IEP and he was enrolled in a special education program at Newtown High School, the former staff member said, while also attending mainstream classes in his core subjects.
The story also makes clear that nothing in these diagnoses is linked to violence against others. Adam was said to respond poorly to "a change in routine or unwanted excitement" by what the staff member described as "completely shutting down." Nancy is said to have picked him up at school frequently when this occurred. For an explanation of how sensory processing challenges affect children, see our story, Sensory Processing Issues Explained.
But what emerges from the Courant's reporting most powerfully is a sense of Adam's severe isolation. He was in and out of both public and Catholic schools in Newtown, and after his mother withdrew him from Newtown High School after his sophomore year, he seems to have had only sporadic regular contact with other people. Two stints at college and one part-time job at a computer shop didn't last.
After his parents' divorce in 2009, Adam's father, who had joint custody, saw him weekly, and helped him with his homework, the Courant reports. But Adam cut off contact with his father and older brother, Ryan, two years ago. His mother was often away out of town, or out of the country, according to the story, leaving him prepared meals in the refrigerator. He spent most of his time in his basement room playing video games.
The Courant says authorities are exploring whether Adam, in his shooting spree at Sandy Hook, was "emulating" the shooting range he had visited with his mother or one of the many "graphically violent video games" found in his room. It's not likely we'll ever know what he could possibly have been thinking. But we do know that profound isolation can have profound consequences, which is one of the reasons it's critically important to keep kids with emotional problems or difficult behavior from being marooned in their homes, with stressed-out parents, because of a lack of services that would enable them to be engaged in a social setting.
As Dr. Harold Koplewicz puts it, "People who are helpless and hopeless do crazy things." There are lots of ways to get to hopelessness, and people who act out of frustration and isolation are more likely to hurt themselves than anyone else. As law enforcement officials continue to try to unravel the motives for this shooting, that's one thing we know. And it provides some hope for the future, because we know part of the solution: dialogue, community, engagement.View Comments | Add Comment