The Child Mind BlogBrainstorm
Cheers for White House BRAIN Initiative
April 3, 2013 Michael Milham, MD, PHD
Yesterday, the Obama administration announced plans for a landmark initiative dedicated to transforming our understanding of the human brain. Referred to as the BRAIN initiative (Brain Research through Advancing Innovative Neurotechnology), the overarching goal of this effort is to discover "new ways to treat, prevent, and cure brain disorders", such as autism, dyslexia, attention deficit hyperactivity disorder and depression. Yesterday's launch was marked by an initial White House pledge of $100 million in 2014 funding for research by the National Institutes of Health (NIH), the Defense Advanced Research Projects Agency (DARPA), and the National Science Foundation (NSF). This announcement comes as a breath of fresh air in a time when neuroscientific and technological breakthroughs are increasingly being tempered by budgetary realities and funding cuts.
The Child Mind Institute has championed the acceleration of scientific discovery through innovation and collaboration, and applauds the BRAIN initiative. It is our hope that investigators funded through the initiative will embrace the emerging open science philosophy in the neuroscience community, and freely share novel data and methodologies with the broader scientific community. For its part, the CMI will continue its efforts to generate and share large-scale brain imaging datasets through CMI-sponsored efforts such as the 1000 Functional Connectomes Project and International Neuroimaging Data-sharing Initiative (INDI), as well as the upcoming CMI Biobank. It is our hope that data generated through these efforts will help to facilitate and accelerate the efforts of BRAIN initiative investigators, as they speed towards the delivery of biologically-based solutions to mental illness.View Comments | Add Comment
April Autism Events Reflect Spectrum’s Diversity
April 2, 2013 Beth Arky
As the sixth Autism Awareness Month—and third Autism Acceptance Month—kicks off, it's clear once again that advocacy efforts are as diverse as the challenges faced by those on the spectrum. The children, teens and adults included in these campaigns range from autistics who are nonverbal and unable to care for themselves to Aspies who are not only loquacious but eager to speak out about autistic identity.
While parent-founded Autism Speaks launched its Awareness Month to increase visibility of the disorder, most literally through its Light It Up Blue campaign, autistic adult Paula C. Durbin-Westby started the Acceptance Month to "Take Back April!" from Autism Speaks and foster "complete acceptance," which she defines as "pro-neurodiversity, pro-supports and services, against 'cures.' "
Released just in time for both months comes Chicken Soup for the Soul: Raising Kids on the Autism Spectrum, which features 101 short essays by mothers and fathers with children of all ages and levels of disability. It offers support, advice and hope, along with the message to parents that they are not alone.
The book opens with "This Is What It's Like" by Leigh Merryday (Flappiness Is), who has two young children, a typically developing daughter and autistic son. She writes that when she first heard her son's ASD diagnosis, she experienced "a kind of death" as she mourned the loss of dreams for her child—a common sentiment among parents. But she now possesses "a love that you can't imagine if you don't have a child born with a bulls-eye in a big, bad world."
In "Lost," Jennifer Bush (Anybody Want a Peanut?) shares a story that underscores why family life on the spectrum is often described as an emotional roller coaster. When her nonverbal son doesn't emerge from school during pickup, she fears he is in danger and thinks she will "never take another moment for granted, no matter how challenging his behavior." (It turned out he had slipped into a classroom.) But an hour later, when he's running "maniacally around the house, screeching and crashing into walls" and hitting and scratching her, she finds herself "red-faced and bursting with rage." She writes, "We parents of special-needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear, often in the course of a single day.... We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward."
Karen Krejcha offers her poem, "Autism Does Not Define Me," which she wrote in support of her two ASD sons, only to realize later that she was an undiagnosed Aspie herself. Given the genetic link, more parents are making this self-discovery. Krejcha blogs at Aspierations and is president and executive director of Autism Empowerment, the nonprofit advocacy group she founded.View Comments | Add Comment
Over at Thinking Person's Guide to Autism, the editors are soliciting posts and captioned photos that will help "spread the word and further acceptance and understanding of autistic experiences, happiness, and rights." Meanwhile, the Autistic Self-Advocacy Network is offering to help activists and community members nationwide organize local celebrations. The Autism Science Foundation is likewise looking to move beyond awareness, with a Pinterest board devoted to its Autism Action Month Activities, including recommended books, blogs and apps, as well as events like today's World Autism Awareness Day at the UN.
'Disconnect': More Communication, Less Intimacy
April 1, 2013 Alan Ravitz
Disconnect, a film directed by Henry Alex Rubin and written by Andrew Stern, is incredibly timely, focusing on the way contemporary lives intersect digitally but never quite connect in the real world. It's a film about interpersonal intimacy, or the lack thereof, in an age of deceptively easy communication, a world in which we can hide in the noise we create. This isn't an easy movie, but it's well worth watching. You're not going to walk away "feeling good," as they say, but you will walk away feeling something.
Disconnect tells three intersecting stories. It is an ensemble drama like Shortcuts, Magnolia or Crash, but to simply call it a movie about intersecting lives ignores its deeper ambitions. It's a film about attachment, about the strategies we use to connect with each other, about why we choose these strategies, and about why they succeed or, more often, fail. In its focus on these issues, Disconnect most reminded me of Francis Ford Coppola's 1974 masterpiece, The Conversation, another story about the how and why of intimacy. In that film each of the characters is intensely private. No one tells anyone anything because they all have something to hide. Forty years later, in Disconnect, the characters are intensely public. Everyone seems to tell everybody everything, but somehow no one finds a way to connect because — surprise—they all still have something to hide. The first movie is about the way we conceal who we are in silence, and the second is about the way we conceal ourselves in noise. Both address the lies we tell, to ourselves and others, to build and sustain relationships.
Each of the characters in Disconnect is lonely. Some are lonely because they're narcissistic, others because they're injured, or depressed, or rejected. The narcissists don't know they need anyone until it's too late; the rest just aren't strong enough to assert their needs. But it turns out that everyone wants to make a connection. This is an inherent human quality, something we take for granted. The film addresses how we communicate this need, the codes we use, the information we protect. It's about the relationship between communication, intimacy, and our desperation to make a connection.
People don't just want to be loved. They want to be loved for who they really are. They want real relationships, to be seen and loved. In Disconnect, relationships begin technologically, with words typed on a screen. The characters can be who they want to be; they don't have to worry about being seen, so they don't have to worry about being loved. The Internet provides them with a safe space to explore intimacy. And these relationships are gratifying, but only to a certain point. When the characters take the next step, a real face-to-face connection, more often than not the relationships turn out to be disappointing. They were perfect when each person could pretend to be what the other hoped for. It's easy to promise to fulfill another's needs, but in real life this is much harder to do. Every relationship is a compromise. Nothing is free. Nothing is perfect. We all have to settle for less than what we want.
Disconnect is an excellent film, serious in intent, original in its narrative exposition—and its subject, need and intimacy, is compelling because it is so universal. This movie is about all of us.View Comments | Add Comment
Teens Lose Weight, Gain Confidence on 'The Biggest Loser'
March 26, 2013 Jessica Kashiwabara
This season of The Biggest Loser, the NBC weight loss reality series, featured three teenage contestants, two 13-year-olds Biingo and Lindsay, and 16-year-old Sunny. Each had their own trainer from the show and a nutritionist to guide them through their weight loss journey. Unlike the adult contestants, there were no threats of elimination and they were not weighed in weekly. Instead, the focus was on getting healthy and becoming a positive influence in their schools, homes, and communities.
I was curious to see how the show would take on working with kids for the first time. While controversial whether it's even healthy to put teens on a weight loss show in front of millions of viewers, the producers and trainers on the show did seem to attempt to tackle the ongoing and growing problem of childhood obesity with sincerity and a sense of responsibility. In an interview with trainer Jillian Michaels she said, about working with the teens, "The producers of the show have been consulting some of the top experts—pediatricians, child psychologists—to help us deal with this in the most delicate and appropriate ways."
It's hard not to get emotionally involved in the show, watching the trainers guide contestants through physical and psychological challenges and seeing the result of their transformations week by week. In one of the most heartbreaking moments of the show Sunny confronted her mom about her mother's own weight issues and said her biggest fear was to watch her mom die. Her mother, initially defensive, then broke down telling Sunny that mothers are supposed to take children's fears away, not cause them. They vowed to work on getting healthy together.
While these teens will continue their struggles to maintain a healthy body, it did feel like by the end of the show they had a better understanding of how to do it. They focused on goals that gave them something positive to shoot for, and on the way they got stronger. For the finale, instead of dramatic numbers on a scale, the teens' had a final reveal—Lindsay makes the cheerleading squad, Biingo gets onto a baseball team, Sunny fits into her dream prom dress. Despite the producer influence, all the teens did have a genuine glow of pride in their healthier bodies and a newfound confidence beaming in front of the live studio audience. As Sunny put it, "I'm so happy. All it takes is a step in the right direction and some perseverance... It's the best feeling you can have."View Comments | Add Comment
Phones, Brains, Hearts, and Babies
March 25, 2013 Caroline Miller
The headline—"Your Phone Vs Your Heart"—makes it hard to resist, and, indeed, the piece is hovering at the top of the New York Times most emailed list. In the article a psychology prof from UNC named Barbara Fredrickson describes research she claims shows that if you spend less time interacting with people in person, even if you're busy communicating with them by phone or computer, you lose some of your capacity for connecting.
The study itself isn't quite that grand: it actually just purports to show that interacting with people improves what's called "vagal tone," the state of the vagus nerve, which connects the brain and the heart, and is linked to overall health. Neurobiologists have already shown the converse, she says, that "by increasing people's vagal tone, we increase their capacity for connection, friendship and empathy."
Her argument is that not only is the brain highly plastic, which we know it is, but so is your cardiovascular system, and the ability to empathize, for example, is actually dependent on face-to-face exercise.
Your heart's capacity for friendship also obeys the biological law of "use it or lose it." If you don't regularly exercise your ability to connect face to face, you'll eventually find yourself lacking some of the basic biological capacity to do so.
I can't evaluate the science here, but what's interesting is the implication for children: That the amount of time spent looking at a video screen rather than another face could, if it's large enough, have long-term implications for a child's social development. It's not what's happening on the screen that we're worrying about; it's what's not happening face-to-face. And, as Fredrickson notes aptly, we should also worry about the amount of time a baby spends looking at a parent or caregiver who is talking on the phone rather than interacting with her.View Comments | Add Comment
Caring, Proactive Approach to School Violence
March 18, 2013 Harry Kimball
We've heard a lot of talk recently about the link between mental illness and school violence—talk that has the unfortunate consequence of making people afraid of kids who might be struggling, and a lot more likely to hurt themselves than anybody else. That fear and stigma in turn produces isolation—the worst thing for a depressed or angry teenager.
That's why we were heartened to read about a new program in Los Angeles that does the opposite: encourages people to speak up when kids say or do something concerning, and then gets to know those kids. The LA program, as described in the New York Times, is dubbed the School Threat Assessment Response Team, and it appears to be remarkably successful.
"When we looked at kids who had committed attacks, the vast majority had come to the attention of an adult for a behavior that was concerning but would not necessarily cause someone to conclude they were planning an attack," says a former Secret Service agent whose research provides the foundation for STARTS across the country. The LA team's leader describes what happens when a young person at risk comes to their attention. "We'll go to a school, evaluate the individual there, then what we'll also do is go to the kid's home and we'll ask to see the bedroom and we'll do a very data-driven assessment," he says. "We're trying to figure out, what are the triggers here? What are the risk factors? What's really going on and how can we intervene?"
This obviously requires cooperation between mental health professionals, schools, police, and families that seems like it might be almost impossible in some cities and states. But beyond an "initial shock," an affiliated detective says, "We get a lot of cooperation from parents...they want to know, too, what did I miss?"
This sort of intensive approach raises a lot of questions even as it appears to deliver results. Does it violate privacy? Do kids get caught up when they don't deserve to? Perhaps—I suggest you read for yourself. But the program represents a crucial understanding that people who are hopeless and isolated can make disastrous choices—and that it takes a multipronged approach to help. From START's website: "The goals are relatively straightforward: develop relevant partnerships to mitigate/eliminate threats; assist students of concern in their efforts to complete their education without incident; and prevent a Columbine or Virginia Tech incident."
Put simply, we know that children's mental health, the safety of the school environment, the strength of the community, a family's ability to reach its potential—these are all interconnected. And the first step in aiding kids is providing a trusting framework of people close to them to be able to reach out and say, "He needs help."View Comments | Add Comment
Lena Dunham Brings Her OCD Experience to 'Girls'
March 12, 2013 Rachel Ehmke
Fans of the HBO show Girls may have been surprised to see an OCD storyline introduced last week. We learned that Hannah, the character played by the show's creator and head writer Lena Dunham, was diagnosed with obsessive-compulsive disorder as a child and is having a relapse now, brought on by a recent breakup and stress over her book deal.
Hannah is falling back into an old anxious habit of doing things in increments of eight (open the front door eight times, eat eight chips, even bump into a stranger eight times at a restaurant), counting as she goes along. As luck would have it her parents are in town, and they noticed her old compulsion immediately.
What follows is a thoughtful and realistic depiction of what it can be like when young adults are dealing with mental illness. Her father reverts to baby talk, calling the flare up "getting county" and wants her to come back home and consult her pediatrician. Meanwhile Hannah, who is having a hard time admitting even to herself that her OCD is back, resents her parents' interference and tries to convince them that she is in control. When she gets coerced into treatment she tells her psychiatrist, "I will really do anything you say if you tell my parents I'm okay" instead of facing the fact that she needs help.
The downward spiral continued in Sunday night's episode, when one of her compulsions put her in the emergency room, and in a preview for next week's episode her father accuses her of not taking her medication.
It's a good illustration of how a psychiatric disorder can threaten hard-won autonomy and undermine a fragile self-image. Disorders like OCD can be very successfully managed, but they can also recur. Acknowledging that old, unwanted behavior patterns are back is the first painful step to mastering them again.
The sensitivity of this plot line comes in part from the fact that Lena Dunham has struggled with OCD in real life. In an interview Dunham said:
It's something that I've struggled with so I feel as though I am able to shed a certain kind of light on the experience and do something that doesn't necessarily feel cookie cutter. One of my biggest pet peeves is when people go like, 'I just love it when my room's clean; I'm so OCD!' It's like, actually no, you're just a neat person and not a slob animal.
So far the show has done a great job of doing that, and I've even seen several Girls-inspired OCD primers popping up across the Internet. (Here's one great example.) Mental illness portrayed right in the media is a rarity, and seeing it on a popular show that gets people talking is good for everybody.View Comments | Add Comment
Temple Grandin on Autistic Kids and Video Games
March 11, 2013 Caroline Miller
This morning we caught up with a rather interesting new conversation with Temple Grandin, posted by Autism Live, in which she offers her striking trademark combination of insight and common sense.
Asked by a parent what she thinks of inclusion for autistic kids, Grandin recalled that she herself had a successful experience with inclusion in a small, rural lower school. But her stint in a big public high school was a disaster, so she was sent to a specialized boarding school. There she did more talking to adults (not to speak of horses) than other kids, but that was fine by her, she said, because "I'll be honest, socializing with teenagers was not a life-skill I needed."
Bad experiences in middle and high school are the reason a lot of parents turn to home schooling, she noted. "For some kids, getting away from the whole teenage scene is the best thing you can do," but not if home schooling means letting kids retreat to their rooms and become "video game recluses." Grandin is passionate about autistic kids, in fact all kids, learning early to do work, around the house and outside the house. She believes that work skills she was taught early—sewing and mucking out horse stalls and carpentry—made a huge difference in her development.
"You've gotta stretch these kids," she says. Kids should be doing more physical work, and more making and building things."One of the worst things schools ever did was taking out things like auto shop, wood shop, metal shop, art, and cooking—all those hands-on classes that can turn into great careers."
And video games? An hour a day. As a kid, she was allowed just one hour to do what was her equivalent of playing video games—spinning a brass ring that covered a bolt on her bed, and studying it as it slowed down. She could have done it for hours, and been riveted, she notes, but she was allowed just one, and then she had to be out of her room doing something.
By the way, asked if she believes she would still have a diagnosis of autism under the new criteria in DSM-5, Grandin said absolutely. She had full-blown symptoms of autism as a child, she said, including very delayed speech, rocking, spinning, flapping, repetitive behaviors. What helped her develop her talents so effectively, a parent wondered. Superb early intervention, great teachers, work skills developed early. And there were good people all along the way who helped her, she said—even in the cattle industry she so famously criticized.
For more conversations between Grandin and Autism Live's host Shannon Penrod visit Autism Live's Interview Series With Temple Grandin here.View Comments | Add Comment
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