The Child Mind BlogBrainstorm
An Iraq Veteran on Telling Stories and Processing Feelings
Dec. 2, 2014 Jessica Kashiwabara
Debut author and Iraq veteran Phil Klay has won the National Book Award in Fiction for his short story collection Redeployment. In his acceptance speech he expressed how writing helped him to process and communicate his experiences: "I can't think of a more important conversation to be having. War is too strange to be processed alone."
Klay served 13 months in the Anbar province in Iraq from 2007-2008 as a public affairs officer for the Marines. In a video discussing his book, the 31-year-old author speaks about his need to tell these stories: "Before I served, my notions of war were incredibly shallow, and I didn't actually come back much wiser. But I had all these unquiet memories that demanded attention."
He continues: "This book is a result of four years of me trying to engage with these wars, and what they've meant for the people involved. It's my attempt to be as honest as possible. And crucially for me, it's my attempt to take those unquiet memories and experiences and communicate them."
In a New York Times op-ed entitled "After War, a Failure of the Imagination" published earlier this year, Klay wrote about the disconnect between civilians and veterans. He challenged civilians to connect and listen to the stories of veterans, and for veterans to share them. "Believing war is beyond words is an abrogation of responsibility—it lets civilians off the hook from trying to understand, and veterans off the hook from needing to explain."
Creating your own narrative can be a powerful way to process difficult experiences. That's true for all of us, whether we're veterans or soccer moms or high schoolers. When we have complicated emotions, ignoring them doesn't help, but finding a way to face them does. We can't say that often enough.View Comments | Add Comment
New Report on Adam Lanza
Nov. 25, 2014 Rachel Ehmke
After the tragedy at Sandy Hook Elementary School two years ago, many of us were haunted by the thought that if Adam Lanza had gotten more attention for his emotional problems, and the right kind of help, the lives he took might have been saved. So it comes as a surprise to learn how many red flags were noticed, and how many efforts at help were directed at him at many points in his life. But not, it seems, the kind of help that might have averted the tragedy he caused.
Connecticut's Office of the Child Advocate recently published a report on Adam Lanza's history to help determine where opportunities were missed and mistakes were made, and to provide recommendations on how future tragedies might be prevented.
One of the points the report made clear was that what happened in Sandy Hook was rare—in fact people with mental disorders are more likely to harm themselves or be harmed by others. But Adam had an atypical preoccupation with violence, and his mental condition was deteriorating rapidly, without any preventative measures and in near-total isolation, towards the end. The report notes Adam was "completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life, and it is this story that the report seeks to tell."
The report makes troubling reading. Adam had significant developmental challenges as a young child, and was referred for special education services as early as preschool. His parents seemed committed to getting him the best help they could, even paying for an independent evaluation. He had Individualized Education Plans throughout his education.
But the problems identified seemed to stop short of behavioral or emotional development challenges, and the report notes that this pattern continued. "This appears to have been the start of a pattern of education evaluation and service delivery that addressed only aspects of AL's cognitive and social-emotional development."
His social-emotional challenges increased dramatically as he got older, but he apparently never received help for them. He developed severe anxiety, including OCD symptoms, but never got therapy (although he was twice prescribed Aquaphor for his hands which were raw from compulsive washing).
When the family visited the Yale Child Study Center for an evaluation, the doctors cautioned strongly against letting Lanza be educated at home:
We believe that there is a significant risk to AL in creating, even with the best of intentions, a prosthetic environment which spares him having to encounter other students or to work to overcome his social difficulties. Having the emphasis on adapting the world to AL, rather than helping him to adapt to the world, is a recipe for him to be a homebound recluse, unable to attend college or work productively into his twenties and thirties and beyond.
But their recommendations were not included in his school record or IEP, and the report says that when efforts to mainstream him failed the IEP team reverted back to the home-based environment that the Child Study Center warned against.
The lack of communication between providers is another point stressed in the report. Lanza saw multiple treatment and service providers in his life: pediatricians, special educators, and out-patient mental health clinicians, but there was no clear coordinator, so diagnoses were overlooked and appropriate services weren't provided.
The person doing much of the coordinating was Lanza's mother, who was in denial of Lanza's needs and thought keeping him at home and accommodating him as much as possible was the best course of action. From the report:
We note that it is not uncommon for parents to vacillate between acknowledging and denying their child's need for services. All children are a little different from each other, and gauging whether a child's differences are in need of outside intervention or special attention at any given stage of development can be daunting to determine.
That's why the report stresses that it is essential to help educate and engage parents in treatment, as well as provide coordination support. Once again we see the damaging effects of isolation—for Adam and his mother, the lack of interaction with a larger family, friends, school or community in those critical years had a devastating effect, and many in the Sandy Hook community paid the price.View Comments | Add Comment
Child Mind Institute 5th Anniversary Gala
Nov. 25, 2014 Caroline Miller
It was an emotional evening for the Child Mind Institute as we celebrated our fifth anniversary last night at the annual Child Advocacy Award Dinner at Cipriani 42nd Street. The evening's honors went to Hillary Rodham Clinton, who received the Child Advocacy Award, and Dr. Thomas R. Insel, director of the National Institute of Mental Health, who accepted the Distinguished Scientist Award.
Both Secretary Clinton and Dr. Insel warmly supported the work the Child Mind Institute does, and Ben Shapiro, a 17-year-old with OCD who was treated at CMI, got a standing ovation for sharing his personal story. Ben described the therapy with Dr. Jerry Bubrick. "Jerry was the guy who rescued me, who got me back to school, back to friends, and back to the basic joys in life." Ben ended with this appeal:
You have an opportunity to help kids get out of the same black hole I was in, to get their lives back. You can determine whether or not the next anxious child will be a cautionary tale or have a happy ending. So ladies and gentlemen, I implore you to give generously. Because quite frankly, I want other kids to be as lucky as I was—to be able to get past their worst day and join me on the other side.
The auction, led by Lydia Fenet of Christie's, raised over $715,000 for scholarships for clinical care at CMI, to raise the evening's total to $6.63 million.
Dr. Insel, the evening's first honoree, applauded the Child Mind Institute's focus on "making sure we not only provide better service today, but that we do the science that will allow us to provide better service tomorrow—and doing that in an open science framework, where everything is sharable accessible and quickly gets disseminated to as many people as possible."
Dr. Insel saluted the Child Mind Institute's Healthy Brain Network for "taking the lead in helping us to understand, as a nation, how these problems begin, how we can detect them earlier, and intervene more effectively." CMI, he said, "is setting the standard and changing the culture of how we to do research."
Letty Cottin Pogrebin, Ben Shapiro, Hillary Rodham Clinton, and Harold S. Koplewicz
Secretary Clinton saluted the efforts of Harold Koplewicz and Brooke Garber Neidich, Child Mind Institute's co-founders, to fight the stigma that still surrounds mental illness. She told a story about the daughter of a friend who was being treated at the Child Mind Institute, who said to her mother: "If I had cancer and I was getting better everybody would be so happy for me. I am getting better, because I now know more about what to do, and I'm getting the help I need, but no one is celebrating that."
Clinton, whose foundation Too Small to Fail also focuses on early childhood development, closed with this:
We need to help the Child Mind Institute draw attention to the mental health needs of our kids, fight to remove the stigmas that keep them in the shadows, and speak up for those parents working their hearts out to get their children the care they need. We need to honor the dedicated professionals exploring the frontiers of brain science and providing cutting-edge clinical care, and keep asking ourselves what more we as cities, states, and our nation can do to continue giving hope to so many who need it.
Kids and Antipsychotics: A Cautionary Tale
Nov. 17, 2014 Caroline Miller
The New York Times ran a disturbing story over the weekend about a mother weighing whether to put her 6-year-old son on Risperdal, along with the stimulant he's taking for ADHD. It's disturbing because putting young children on two medications, especially if one is an antipsychotic, is scary. But it is also disturbing because neither the reporter nor the doctors interviewed addressed the question that should be asked before any treatment is prescribed: What might be behind this boy's problem behavior?
The boy, named Matthias, has mysterious rages, refuses to join activities, and bolts from "adults trying to corral him." This sounds a lot like anxiety. He refuses to do math and word problems in school, and puts his head down on the table. Has he been evaluated for a learning disorder? He melts down when his mother parks in the wrong spot—could he be on the autism spectrum? Does he "explode into fits of anger and despair" because he has sensory issues? There's chaos in Matthias's home life. Might trauma be a contributing factor?
There isn't one voice in this story that reflects best practices in treating a child like Matthias. Before even considering prescribing a powerful drug like Risperdal, a clinician should explore what's going on with this child, whether the initial ADHD diagnosis is correct, and whether structured behavioral interventions would help him.
Instead, Matthias's mother is considering putting him on an antipsychotic so he can avoid special education classes. And the pediatrician treating him makes this lame joke in lieu of a diagnosis: "He's got MSD—Matthias Specific Disorder."
This is a textbook case of why you need to try to understand behavior, not just try to control it.View Comments | Add Comment
Love Hurts Aspie Max on 'Parenthood'
Nov. 14, 2014 Beth Arky
Parenthood fans who were rooting for Max's crush to like him back were crushed themselves when she rejected him on last night's episode. Mom Kristina's fears that her son, diagnosed with Asperger's, would be rejected by classmate Dylan came to fruition. When Max caught her kissing classmate Aaron, Max went on a tear to get him expelled. Later, Max's meltdown led him to physically attack Aaron. Then Max presented a poster to Dylan featuring photos of her; it was his awkward attempt to make a logical case for why they belonged together. Not surprisingly, she rejected him. As kids in the cafeteria laughed at Max, one girl called his presentation "creepy." A distraught Max then bolted from the school.
Throughout, Kristina was in an awkward position, being both a school administrator and Max's mom. (This fact was pointed out to Max by another student played by Sawyer Katims, show runner Jason Katims' Aspie son.) Her role as mother won out, with her comforting a brokenhearted Max, telling him that someone would like him back one day.
Cheryl, whose 9-year-old son Roo is on the spectrum, says she was in tears throughout the episode. It was hard enough trying to help her neurotypical son understand "matters of the heart," she said; having to "explain it to a very literal and socially awkward-thinking person" is even harder. She says Kristina "handled it like a champ. I thought the fact that she recognized and acknowledged how much courage it took [for Max] to tell Dylan how he felt and completely humiliate himself was amazing."
One mom who was diagnosed with Asperger's at the same time as her daughter, now 16, says watching Max's story unfold was rough. "We have already seen how Max applies his logic to peer relationships. So it's no surprise that he takes the connection Dylan has made with him beyond what she is comfortable with. It's something I have seen time and again with my own kid. Anyone who is nice is classified as 'friend,' even though the relationship is not reciprocal."
Unlike Cheryl, she has mixed feelings about the messages Kristina gave to Max. "She needs to acknowledge that how he came across, so strongly and unexpectedly, is perceived as creepy. It did make Dylan uncomfortable. He did ignore her saying she wanted him to stop. Our kids, especially our boys, need to understand that they must not ignore such words." On the other hand, she applauded Kristina for being calm, supportive, naming his feelings and praising his courage.
Lisa, whose describes her autistic son Kye, 5, as "a ball of love, energy and sensory issues," says that while he has come a long way since being diagnosed 18 months ago, he still struggles terribly with social skills. "Sometimes I am overwhelmed with sadness when Max experiences pain because he doesn't understand the little social cues that most people take for granted. At my son's young age, I can already see him not quite getting it and can only imagine how that will affect his future success. I worry that his kind heart will be laughed at, that people won't look past the diagnosis and take the time to know the sweet soul behind it."View Comments | Add Comment
Designing for Dyslexia: A More Readable Font and a New Dictionary
Nov. 12, 2014 Rachel Ehmke
Two tools designed to help dyslexic people have been getting attention recently. One, a dictionary, is being designed by a father and son team Neville and Daryl Brown who say the way most dictionaries are organized—by alphabetical order—is difficult to navigate for dyslexics who struggle with phonics and spelling. The Browns are organizing their dictionary instead by common word components, or "morphemes." For example, in their dictionary the words signature, resign, and assignation will all be listed together because they share the morpheme "sign."
It seems confusing, but Daryl Brown says that their new method is helpful because it "bypasses the requirement to learn words by sounding them out" in favor of recognizing the root parts of words. And it won't be just dyslexics who benefit. He continues:
The meanings of words will be prevalent in our dictionary. Whilst we believe it will be an invaluable tool for dyslexics, it will also give children and adults without the learning difficulty a greater understanding of the origins of our language, enabling them to grasp the true meanings behind parts of words and make greater sense of a language that we learn verbatim, but never question.
Another innovation, a font called Dyslexie, is being featured at a design festival right now in Istanbul. The font was created by designer Christian Boer, who is dyslexic himself, and claims that Dyslexie is easier for some people with dyslexia to read.
Most children with dyslexia have phonological deficits, which means they struggle to understand the sound structure of words. This means they have difficulty identifying phonemes, which are the smallest sound units that make up words (e.g. the "ch" sound in chair is a phoneme) as well as recognizing rhymes. But there is also a smaller subtype of children, who have poor visual processing—for example they might accidentally flip or skip letters. This is the group that Dyslexie is aiming to help.
Boer, the designer of Dyslexie, says traditional typefaces make the tendency to flip or skip letters worse. In an effort to prevent this, Dyslexie letters look more grounded because they have a heavier bottom half—something Boer says makes dyslexic readers less likely to flip them. Some letters are also tilted slightly, to make it easier to distinguish between, for example, b and d or i and j. To make words clearer letter openings are also larger, there is more space between letters and words, and the font color defaults to blue.
Finding a font that makes reading easier for dyslexics who struggle with visual processing is an ongoing quest. In 2013 researchers compared several fonts in a study to see which were more readable to people with dyslexia. The researchers used eye-tracking and comprehension tests to evaluate readability. From the study researchers isolated three characteristics dyslexics should look for in a font:
1. Monospaced (all letters occupy the same horizontal width)
2. Roman (letters are upright-not slanted, in script or italic)
3. Sans serif (the letters don't have "feet")
Helevetica, Courier, Arial, Verdana, and Computer Modern Unicode all tested positively. Interestingly, another font specifically designed for dyslexic readers called OpenDyslexic did not lead to better readability or faster reading.
Although it wasn't included in the study, Comic Sans is also anecdotally considered easier to read for people with dyslexia. Some teachers also prefer to use Comic Sans because it resembles the handwriting children learn in school.View Comments | Add Comment
Seinfeld’s Autism Announcement Creates a Stir
Nov. 7, 2014 Beth Arky
Jerry Seinfeld's surprising revelation to Brian Williams last week—that he thinks he's on the autism spectrum—immediately became a hot topic in the autism community, drawing both praise and criticism.
"I think, on a very drawn out scale, I think I'm on the spectrum," Seinfeld, 60, told Williams. "You're never paying attention to the right things. Basic social engagement is really a struggle. I'm very literal. When people talk to me and they use expressions, sometimes I don't know what they're saying. But I don't see it as dysfunctional. I just think of it as an alternate mindset."
While Seinfeld lacks a formal diagnosis, there are many adults who have gotten diagnosed later in life because Asperger's syndrome wasn't a diagnosis when they were kids. (While the DSM-5 did away with the Asperger's diagnosis, instead placing people on a wide spectrum from more to less challenged, many in the community continue to use the term.) In fact, celebrities including Daryl Hannah, Dan Aykroyd and Susan Boyle were only diagnosed as adults. And some adults only seek out a diagnosis after their child receives an autism diagnosis, leading them to recognize the traits in themselves.
Seinfeld's announcement angered a vocal contingent. While some commenting on Facebook wondered if the spectrum had become "too wide" under the DSM-5, others felt he had done a disservice to more impaired kids—and their parents—by presenting autism as something less impairing than it can be on other points of the spectrum. Blogger Autism Daddy, who has a severely autistic, nonverbal 11-year-old son, wrote, "I am not thrilled about Jerry's autism self diagnosis. I think it's stuff like this that puts an even bigger divide between the low functioning community & the high functioning community, between the parents of severe kids, and the parents of aspie kids."
But there were many high-profile autistic adults who chose to embrace Seinfeld, with or without a diagnosis. As Jean Winegardner wrote on her blog Stimeyland, "It is very scary as an adult who has 'passed' for your whole life to come out as autistic. It is hard to tell people who might not believe you that you are autistic. I am absolutely positive that people have doubted my diagnosis, have said that I'm not autistic or not autistic enough. I am not willing to do that to another person."
Plenty of parents also applauded Seinfeld. Joel Manzer, who has an 11-year-old autistic son and is lead editor at Autisable.com, notes that whether the comedian is on the spectrum or not, "the fact that he thinks he is could actually benefit the community at large. Also, if having this self-diagnosis helps him address certain things about himself, all the better as well."
Christina Kotouc, whose 9-year-old son was diagnosed with autism spectrum disorder last year, writes that "the more high-profile people who say, 'hey, that's me,' or 'that's my kid,'" the better. She thinks it will help validate kids who are diagnosed with less severe autism. "Yes, it's a true struggle, not just made up," she writes. "And if they are positive about it, even better."View Comments | Add Comment
Lorraine Bracco at the Katz Memorial Lecture
Nov. 7, 2014 Harry Kimball
Yesterday the Child Mind Institute hosted a boisterous and at times somber discussion with actress Lorraine Bracco about living with dyslexia and, later in her life, with depression. The conversation with Dr. Harold Koplewicz was part of the 12th Annual Katz Memorial Lecture. Bracco talked about everything from growing up feeling "dumb" in school to how her experience with depression and treatment informed one of her most famous roles. In between, Bracco was remarkably candid about how, despite all her success, she wonders what would have turned out differently if her dyslexia had been recognized and treated at an early age.
"Social promotion—I think they invented that for me," Bracco joked about her poor showing in academic subjects as a child. "I was a jokester, I was humorous, but when it came to reading, writing spelling, I was a disaster. " She vividly described her angst about the written word. "When I was called upon to read, I was so anxiety ridden the words would just pop up and hit me," she said.
Thanks to a middle school English teacher who took an interest in her, she went on to become a model, a successful TV producer in France, and an actress on both sides of the Atlantic. But still that anxiety was hard to shake. She "couldn't go to an audition cold," she said—she "needed to see the pages beforehand, learn them by reading out loud." She was unsure about her future as an actress until that particular problem brought things to a head.
After a reading of a play by David Rabe, surrounded by an A-list group of actors, Bracco was mortified by her performance. Humiliated, she rushed out of the room with "tears popping out of my eyeballs like darts." The playwright caught up with her and wouldn't accept her poor opinion of her skills as an actress. "Lorraine, I enjoyed your reading," she recalls him saying. She screamed, "You're a liar! I can't read!" But Rabe was calm. "If I ever do this play, I want you to play this part," he said. And he did, and she did.
"I don't believe I would have tried any more to be an actor if it hadn't been for him," Bracco told Dr. Koplewicz.
The pain of growing up with an unidentified learning disability is still with her, despite the humor. "My daughter went to a Montessori in Tribeca, and they had what do you call it, 'creative spelling'?" Bracco said. "I would have been so good at that!" However, "even today I find myself wanting to use a word and I can't spell it so I have to dumb myself down. I think 'This is pathetic! I am pathetic, still!'"
That's why spotting problems early is so important to Bracco. "If I'd met you as a kid, wow," she told Dr. Koplewicz. "Where could I have gone? What would I have been instead of feeling like I'm always climbing out of a hole? I mean, you know, I could have been solid. I think I would have been challenged in a way that would have been intellectually stimulating. Instead of using humor to hide behind."
One issue where Bracco isn't left wondering what could have been is her depression and the successful therapy and medication treatment she (eventually) received. She went through a painful divorce, a long custody battle, a bankruptcy. "When I was going through all the bad stuff, people would say, 'Of course you were depressed after going through all that,' " she recalled. "But when I was on the upswing, I thought, 'Why am I not doing the happy dance? Something is really wrong. Let's figure this out!'"
Her positive experience with depression treatment encouraged her to seek the role of Dr. Melfi in The Sopranos—with a caveat. She wanted to make sure the part wasn't designed to be a negative stereotype. Bracco recalled telling creator David Chase, "I've been in therapy now for awhile, I've been on medication, and it's been incredibly helpful. And I don't want to make a mockery of it—I don't think that's fair."
That instinct, to present the truth of mental illness and treatment, continues. "What shocks me the most is how many people come up to me and can't believe that I've been in therapy and have been on medication," Bracco said. "They whisper, 'You take medication? I take medication!' All right! Why are we whispering? It's the big secret, the big stigma. It's a terrible thing. When I think how many people suffer with depression it's heartbreaking to me."
Dr. Koplewicz Honored as a WebMD Health Hero
Nov. 7, 2014 Caroline Miller
WebMD hosted its first live event to celebrate its annual Health Heroes awards last night, and Dr. Harold S. Koplewicz was among the winners, accepting a 2014 Health Hero award for his activism on behalf of children with psychiatric and learning disorders.
The evening was hosted by an ebullient Robin Roberts, the Good Morning America co-host, who responded to a standing ovation by saying, "You make it worth staying up past my bedtime!" The Health Heroes winners included Michael J. Fox, Martha Stewart, the Cleveland Clinic's Frank Papay, Zarin Rahman, and Carson Daly.
In accepting his statuette, which was presented by TV personality Beth Stern, Dr. Koplewicz quipped, "How awesome! It looks like an Oscar and it's from Howard Stern's wife."
Getting serious, Dr. Koplewicz noted that the people he perceives as real heroes in his work are the children themselves. "When I think about the children and adolescents who struggle with psychiatric or learning disorders, it's hard to feel like a hero," he said. "Kids with depression or social anxiety or dyslexia or ADHD often have to fight so hard every day to do things the rest of us take for granted. That's courage—that's heroism."
Dr. Koplewicz challenged the notion that mental illness is a character flaw. "Psychiatric and learning disorders aren't caused by weakness, but they are overcome by strength," he said. He thanked WebMD for the award, which comes with a $10,000 donation to the Child Mind Institute. "Together we can get more kids the help that can literally change lives." (Click here to see the video WebMD presented about Dr. Koplewicz and the Child Mind Insititute.)
Michael J. Fox was given the Hall of Fame award for his work on Parkinson's research and advocacy. Martha Stewart was recognized for opening the Martha Stewart Center for Living at Mount Sinai Hospital, to provide holistic heath care for seniors. Frank Papay was cited for pioneering a new surgical approach to treat cluster and migraine headaches. Zarin Rahman, a Harvard student, was recognized for her study, as a high schooler, of the effects of computer and cellphone use on teens' sleep, mood, and academic performance. And Carson Daly was cited for the Shine a Light program that involves school children in Crown Heights, Brooklyn, in gardening.
In a video interview with Robin Roberts, Fox said he doesn't see himself as a hero.
"At a time when people are putting their lives on the line particularly for country and for freedom—those are heroes," Fox said. He said he shared the award "with my fellow patients, and with the countless researchers who've jumped on board and are dedicating their careers to that mission."View Comments | Add Comment
Not So Modern Family
Nov. 4, 2014 Rachel Ehmke
The era of asylums is long gone—they started closing in the US in the late 60s and 70s—but One Flew Over the Cuckoo's Nest-style psychiatric hospitals were alive and well in a recent episode of Modern Family. It was the Halloween episode, and mom Claire Dunphy decorated her yard as a "haunted insane asylum" with her kids playing "deranged mental patients." One was chained to a hospital bed and another was wearing a straitjacket. She was dressed as a "sadistic nurse" and wanted her husband to be a "demented doctor."
Claire was thrilled with her decorations until she learned she upset a new neighbor who "spent six months in a cuckoo farm in Nevada." Later it's revealed the neighbors are just joking:
- "She's never been to a nut house!"
- "Yeah, I ain't crazy!"
(By the way the neighbors are supposed to be ignorant Southern trailer trash-another worn out trope.)
It's all played for a joke, of course, but we're not finding it very funny. Mental illness really is scary to a lot of people in this country. A large part of that fear is rooted in how our culture talks about mental health, and that certainly includes prime time television shows like this one. It's all the more frustrating because Modern Family has been widely lauded for its updated take on a traditional American family. Clearly their commitment to diversity only extends so far.
After watching the episode Liza Long, writer and mother who learned first-hand the cost of stigmatizing mental illness when her son developed bipolar disorder, wrote, "We talk a lot about the word 'stigma' when we talk about mental illness. But what we really mean is 'discrimination.' " Blogger Pete Earley has written an open letter to Disney/ABC protesting the episode, and Janine Francolini, founder of the Flawless Foundation, called it "a misguided, ignorant and prejudiced piece about people living with mental illness" in a blog on the Huffington Post.
In her blog Long also points out that one in five kids in the US will have a serious psychiatric disorder at some point before age 18. A real modern family should acknowledge how common mental illness is-not use it as a tired punch line.View Comments | Add Comment