The Child Mind BlogBrainstorm
Living With Schizophrenia: A Success Story
Jan. 28, 2013 Caroline Miller
It's been on the most popular list on the New York Times web site for days, and no wonder. It's a great feel-good story. A woman in her 20s diagnosed with schizophrenia is told that she's not likely to be able to live independently, marry or have children, hold anything more than a menial job, or enjoy more than intermittent periods without debilitating symptoms. Thirty years later she's a law professor at USC who also teaches in the psychiatry department at UCLA, is married, and is the recipient of a MacArthur genius grant.
Part of the draw is just the headline,"Successful and Schizophrenic"—a conjunction of two words not seen together all that often. But it's a good deal more than a beating-the-odds story. Elyn Saks is one of a growing number of people with mental illness talking candidly about how they are able, with the help of excellent therapy and medication, to manage their recurring symptoms—the way someone with diabetes or arthritis manages their symptoms.
Saks cites participants in a study of high-functioning schizophrenics who report that they have trained themselves to recognize triggers to their symptoms and do things that help avoid them, like minimizing stimulation, or eating comfort food. One man, an educator, says he has learned to face his hallucinations and ask, "What's the evidence for that? Or is it just a perception problem?" Another, a nurse's assistant, says, "I'll listen to loud music if I don't want to hear things."
They're marvelously matter-of-fact about how they manage. One of the main things most of them cite for keeping them sane is work. As Saks puts it rather charmingly, "In other words, by engaging in work, the crazy stuff often recedes to the sidelines."
And—perhaps the most important thing—none of these people manage their illness alone. "Personally," Saks writes, "I reach out to my doctors, friends and family whenever I start slipping, and I get great support from them."
It's a very inspiring argument for not underestimating what kids with developmental and psychiatric disorders can accomplish—with the right treatment and support, and a focus on their strengths and talents.View Comments | Add Comment
Haunted by High School
Jan. 25, 2013 Caroline Miller
Whether you remember your high school years as happy or hellish, Jennifer Senior bets that the experience is still surprisingly vivid to you, lo these many years later, and the teenage identity you forged in those halls still has an inordinate (perhaps even ridiculous) amount to do with your adult identity. In her piece in this week's New York magazine Senior writes about the brain changes in adolescence, and why they make emotions more intense, and the business of finding your place so fraught.
It's a pretty irresistible look at the cauldron in which identity is formed in those arduous years. Senior argues that by quarantining teenagers in an environment filled overwhelmingly with their peers, we set the stage for aggressive, even desperate, competition for acceptance, status and power. "Most American high schools are almost sadistically unhealthy places to send adolescents."
But beyond that she argues that those experiences tag us long after we graduate and go on to bigger and (in most cases) better things. "During times when your identity is in transition," a developmental psychologist tells Senior, "it's possible you store memories better than you do in times of stability."
There is research that shows that being popular and attractive in high school, at least for boys, is predictive of greater earning power as adults. But an interesting thing happens when you look at girls—and this, I think, is an important takeaway from the piece.
A group of 10th graders were asked which of the five characters from The Breakfast Club they most considered themselves to be—Jocks, Princesses, Brains, Basket-Cases, and Criminals. (I know you're thinking, "This is science??" But bear with me.)
Girls who categorized themselves as Princesses when they were 16 were on the top of the pecking order at that point, but by the time they were 24 they had lower self-esteem than the girls who considered themselves Brains.
The researcher attributes that finding to the notion that Princesses had come to define themselves by their social success in the world of high school, while the brainy girls, for whom popularity was elusive, had to rely on said brains and the skills they could use them to develop as a basis for self-esteem. "Out of high school, they suddenly had agency," Senior writes, "whereas the princesses were still relying on luck and looks and public opinion to carry them through, just as they had at 16. They'd learned passivity, and it'd stuck."
To me, this reinforces the point that the most important thing to do to help our daughters build healthy self-esteem is to urge them to do things—acquire skills, explore interests, experience mastery—not to rely for their sense of self on how they look or how much other people like them.View Comments | Add Comment
School Bus Strike Hits Our Most Vulnerable Children
Jan. 21, 2013 Beth Arky
As the New York City school bus strike enters Week 2, it's clear that the 54,000 special-needs children and their already overtaxed parents are bearing the brunt of the walkout. It's important to understand that for many of these families, the school bus is not just a ride to school. It's a crucial piece of a support system for kids who can't just jump on the subway—in fact, they may not be able to walk—and parents who can't hold down jobs unless their children are in reliable, competent, and caring hands.
It's not unusual that the only appropriate school for a child with complex developmental delays and resulting behavior problems might be an hour from home, so thousands of parents are missing work to endure long, arduous commutes, or keeping their kids home. But the personal cost doesn't end there. As Marie Myung-Ok Lee writes in a candid and thoughtful piece in The Nation ("A Good Matron Is Hard to Find"), children and parents alike are also missing the continuity and calm provided by experienced drivers and matrons now walking the picket line.
Lee, whose 13-year-old son, J, has serious medical challenges and developmental disabilities, including autism, has come to depend on J's excellent driver and matron: "Our son indeed relies on them to be consistent, calm, patient and firm."
And that's not easy. "On bad days, our son can bite, head-butt, scream or pinch—fairly typical behaviors for autism, but they can be shocking when one first encounters them," Lee writes. And because of J's gastrointestinal problems, he can have toileting issues. "It can be difficult not to take such assaults personally or want to retaliate," she notes, "which is why experience and maturity needs to be taken into account."
While experience doesn't guarantee expertise and sensitivity, Lee says it improves the odds; J's driver and matron each have worked with special-needs children for 18 years. Like many parents, Lee considers them valued players on J's team: "We all work together to keep our son calm, but when he's not, they know what do to. No amount of training and video-watching can prepare a driver for what it's actually like navigating New York City traffic with the bedlam of one (or more) children throwing a tantrum behind her." She also applauds her driver's "great communication skills with parents; she calls when she needs our input on our son's behaviors or medical issues. She and the matron make our son feel safe, which in turn helps us to feel safe."
As the city and the unions continue their stalemate and questions arise about the cost of bussing special-needs students, Lee brings it down to the most human level: It's the children, "who have little voice and are often ignored or scorned in society," who are losing the most. Those who continue to attend school may be missing hours because of long commutes, while parents who are keeping their children home worry that they may regress as they miss out on the routine, socialization and therapies school provides.
Lisa Quinones-Fontanez, another autism mom, explains in an open letter to Mayor Bloomberg and Local 1181 why 7-year-old Norrin, whose school is 22 miles from the family's Bronx apartment, spent the third day of the strike with her at her job as an administrative assistant, rather than at school. She writes that she has already used up two vacation days staying home with him, her husband, a court officer, can't take time off; and she needs the rest of her days for doctor's appointments and IEP meetings. She also needs to keep her job, and she's worried about that. "This is beyond a stressful situation," she writes. We hope both the union and the mayor understand that.View Comments | Add Comment
Mood Disorders and Violent Video Games
Jan. 17, 2013 Caroline Miller
If you want to read a provocative, insightful piece on violent video games, mental illness, and mass shootings, you'll find it on Kotaku, a gaming site that's part of Gawker Media. The headline tells the story and sets the tone: I'm Mentally Ill, I Love Violent Video Games, and They've Never Made Me Feel Like Killing Anyone.
The writer, Dennis Scimeca, is an articulate and startlingly frank gaming writer in his thirties who has bipolar disorder. And it's much more than a defense of the video games he has been a devotee of since childhood (though it is that). It's a close look at how games have interacted with his emotional life, both in the volatile years before he was diagnosed, in his 20s, and after.
Scimeca figures he suffered from bipolar disorder for more than a decade before he sought, and got, treatment, and he describes video games as one of the most important sources of pleasure and solace for a kid who was bullied and frustrated as a teenager. It's the skills challenge that made them satisfying, he says, noting that it's pretty hard for those of us who doesn't play to understand the appeal of what he calls first person shooters. "I was rubbish at playing sports as a kid, but I'm a pretty good FPS player and I feel a healthy sense of satisfaction when I beat a Halo 4 level at the Legendary (highest) difficulty level."
Of course he had revenge fantasies—everybody has revenge fantasies, he notes—but he says it wasn't just the fact that he didn't have semi-automatic weapons at his disposal that kept him from becoming Adam Lanza.
Even if I had been able to get my hands on guns in high school I doubt I'd have used them. I had a family who loved me, and friends who listened to my suicidal rants and slides into depression. These people comforted me.
Scimeca makes it very clear that it isn't just medication that helped him get control of his illness, but also his family and friends. And he's also clear that the real problem wasn't anger but emotional pain so extreme that he didn't want to "move or talk or even breathe." Without that support system and attention to his pain, and with access to guns, he imagines that the outcome could have been very different.
What might have made me a school shooter in some other reality would have been whether I was lonely, or whether anyone was paying any attention to the fact that I was in constant pain, or whether I could have easily laid my hands on a lot of guns, and I'm very glad that in my case none of those things were true.
In another post last fall Scimeca writes about why it's important to be open about psychiatric problems, and how long it's taken him to be able to be public about his own diagnosis. We appreciate his candor about living with a disorder that is so easliy and frighteningly misunderstood.View Comments | Add Comment
Aaron Swartz Suicide: Genius and Depression
Jan. 14, 2013 Caroline Miller
The death of Aaron Swartz, the 26-year-old programming prodigy and digital rights activist who committed suicide Friday, was stunning and upsetting. Swartz, who helped invent RSS as a 14-year-old and contributed to the creation of Reddit, was a passionate believer in the principle of open information. He was being prosecuted for allegedly downloading millions of academic papers collected by JSTOR, which sells digital access to scholarly journals, from the MIT archive. Swartz was said to be very upset about the charges, which carried a sentence of up to 35 years in jail and $1 million in fines. He was also said to be struggling with depression.
Mashable outlines the controversy over the criminal charges against Swartz, which his family calls “intimidation and prosecutorial overreach,” and some of the tributes offered by tech leaders, including this description of Swartz from a Harvard academic and activist: "A kid genius. A soul, a conscience, the source of a question I have asked myself a million times: What would Aaron think?"
What cuts even closer to the quick is the blog Swartz himself wrote in 2007 to describe his experience with the illness and depression that plagued him. I hope you’ll read it.
Swartz begins by apologizing for not keeping up with his blog, and admits that he’s been ill with several things, including stomach pain and migraine.
I have a lot of illnesses. I don’t talk about it much, for a variety of reasons. I feel ashamed to have an illness. (It sounds absurd, but there still is an enormous stigma around being sick.) I don’t want to use being ill as an excuse. (Although I sometimes wonder how much more productive I’d be if I wasn’t so sick.)
And he writes with painful eloquence about being depressed, about the pervasive sadness and the frustration of being unable to feel the joy everyone else seems to feel.
At best, you tell yourself that your thinking is irrational, that it is simply a mood disorder, that you should get on with your life. But sometimes that is worse. You feel as if streaks of pain are running through your head, you thrash your body, you search for some escape but find none. And this is one of the more moderate forms.
There’s more. But he comes back, in the end, to stigma, citing an economist who notes that depression, which affects 1 in 6 people, is the greatest impediment to happiness today:
Sadly, depression (like other mental illnesses, especially addiction) is not seen as “real” enough to deserve the investment and awareness of conditions like breast cancer (1 in 8) or AIDS (1 in 150). And there is, of course, the shame.
Swartz’s suicide is another reminder that genius is often no match for depression, and that the shame that inhibits both treatment and research can rob us all of great potential.View Comments | Add Comment
CMI Proudly Joins Vice-President in Addressing Gun Violence
Jan. 11, 2013 Harry Kimball
This week, Child Mind Institute president Dr. Harold Koplewicz was in Washington, DC, as a part of what he called an "amazing group" of mental health professionals presenting to the Vice President's Commission on Gun Violence. The wide-ranging scope of Vice-President Biden's inquiry into this problem, from public education to increased access to mental health care, fits very well with the Child Mind Institute's mission, and we are thrilled that he and the President have taken leadership in this critical area. We're also proud to be able to work with so many other committed organizations and applaud the efforts of everyone involved.
Only time will tell, but out of the unspeakable tragedy in Newtown, Connecticut, we are seeing some growing glimmers of hope and a sense of momentum that might just make this a better world for our childeren and children everywhere. You can read more about the Washington, DC meeting here.View Comments | Add Comment
Finding a Better Way to Prevent Teen Suicide
Jan. 10, 2013 Harry Kimball
A new study out of Harvard on teen suicide makes a sobering observation: 55% of people 13 to 18 who plan or attempt suicide have had some contact with the mental health care system. Which means it's not just kids who are not getting attention who are suicidal. It's easy to draw a disturbing conclusion—that there is nothing we can do for some of these kids.
But Dr. David Brent from the University of Pittsburgh sees it differently. "One of the take-aways here is that treatment for depression may be necessary but not sufficient to prevent kids from attempting suicide," he tells the New York Times. In other words, what the study really tells us is that we need to look for better ways to help adolescents in distress and leverage the tools we already have by taking a holistic approach.
We do have good treatments for the depression that can lead to suicidal behavior—but we are not always successful at delivering them, particularly to adolescents. At the Child Mind Institute we often get questions from parents frustrated by children who refuse or neglect treatment for a variety of psychiatric disorders, including depression. Antidepressant medication alone isn't always enough; studies show that the best treatment is a combination of antidepressant medication and behavioral therapy that can be very important in helping kids recognize and redirect their very negative thoughts and feelings.
The study also highlights a very important point: that kids most at risk for suicide are those who are not only depressed but impulsive, so depression combined with ADHD or substance abuse or explosive behavior is a potentially more toxic situation.
But it's also the case that adolescents, even as they are more emotionally labile than any other period of development, are in the process of separating from parents, which can make them disturbingly elusive.
The Times speaks to a mother who lost her daughter to suicide, who was being treated for depression. "I think there might have been some carelessness in the way the treatment was done, Margaret McConnell says. "And I was trusting a 17-year-old to manage her own medication. We found out after we lost her that she wasn't taking it regularly."
Knowing what's really going on with a teenager who's seeking independence can be one of the most difficult challenges of parenting. The Times story ends on that note : "Ms. McConnell said that her daughter's depression had seemed mild and that there was no warning that she would take her life.View Comments | Add Comment
Fearless Friends and Canine Companions
Jan. 4, 2013 Harry Kimball
We like to think that there is always a little bit of magic going on at the Child Mind Institute, but today was something else. It was the last day of our Fearless Friends program for kids with obsessive-compulsive disorder and specific phobias, and Dr. Jerry Bubrick, who runs it, had told me that a therapy dog would be in the office. At about 11 am I got an email from his iPhone. "Come now to Jenna's desk!!!"
There I met Jezebel, or Jezzie, who was calmly passing the time with two Fearless Friends, a boy and a girl, and eating cucumber slices for some reason. In the course of just a few minutes the girl, who was quite afraid of dogs, pet Jezzie "on her back and on all four legs," as she put it. I think she got the nose, because she said it was "really wet." Oh, and the real prize: "I found her tickle spot."
Throughout all of this Jerry and his colleagues Dr. Jamie Howard and Dr. Rachel Busman gently guided the interaction, which of course was a clever and delightful bit of exposure therapy. But it was the little boy who truly grabbed my attention. (Jamie told me later that his issue with the texture of cucumbers explained that odd detail.) At one point when the young lady was petting Jezzie, he asked, "Did you let her lick you yet?" No was the answer. "I wonder when you will," he said.
In case the point is lost, these children were in the care of smart, caring adults, but they had also been taught to support each other. And that says a lot about programs like Fearless Friends and Brave Buddies in particular, and about the Child Mind Institute as a whole. I won't even mention the other therapy dog, Safronelle, that mysteriously appeared, or the visitor who said the atmosphere today was like Google headquarters. I'll close with what the boy whispered to the girl as I walked away; Jamie told me later. "If she sticks her tongue out, she's just yawning," he soothed her. "Don't worry."View Comments | Add Comment
The Wrong Response to the Newtown Shootings
Jan. 4, 2013 Caroline Miller
The last couple of weeks have been especially painful for people with autism and the people who love them. We've heard from a number of parents that their kids with autism have been the targets of hostility—in person and online—ever since speculation that Adam Lanza had autism hit the media.
Joslyn Grey writes on Babble about some of the more hateful initiatives out there to link autism to the shooting. Notes Grey, who has two kids with Asperger's, "The worst thing my kids are going to do to you, on the other hand, is entangle you in a detailed discussion of the similarities between Lord Vader and Lord Voldemort."
There's a kind of awful confusion at the heart of this anti-autism campaign: that the kind of cold-blooded resolve of a young man who kills children and their teachers is connected to the lack of affect many people with autism display. People with autism may have difficulty reading social cues from other people, and responding accordingly, but that doesn't mean they lack empathy. And the kind of explosiveness kids with autism may display when they are frustrated or overwhelmed has nothing in common with premeditated murder. It is, in fact, most often directed at themselves.
What is true is that mental illness, especially when it's untreated or misunderstood, can result in isolation, frustration, misery and psychosis, and the way to prevent that is to make it possible for people to be more open about needing and seeking treatment.
The worst possible outcome of this tragedy would be making parents feel less free to discuss the worries they have about a child for fear that the child will be branded a potential Adam Lanza.
Let the final word go to the many, many autism parents sharing sweet photos of their kids on Autism Shines, to help dispel the misunderstanding that autism explains this killer's behavior. These kids don't deserve it.View Comments | Add Comment
Lady Gaga Now Providing Free Therapy to Fans
Dec. 31, 2012 Rachel Ehmke
Lady Gaga keeps surprising us by finding new ways to reach out to kids who are struggling. She's has become a kind of pop spokesperson for the importance of discussing—and treating—mental health issues. Now the singer has announced a new plan to provide free counseling before concerts on her current tour. The counseling will take place on the tour's Born Brave Bus and will be part of a tailgating experience that includes food, games, and DJs.
Okay, mental health care in such a festive atmosphere seems a little incongruous, but Gaga specializes in defying expectations. On her Twitter account she explained, "I feel like most kids don't look for help because they feel embarrassed so mom + I wanted to break the stigmas around 'help' and make it fun." She also wrote, "BornBrave Bus is a place where mental health + depression are taken seriously w/ no judgment, FREE real help available to all."
No way to know whether kids will take her up on her offer, but Gaga (who is only facilitating the sessions) says fans can expect "professional private or group chats about mental health, depression, bullying, school & friends."
Given how intimidating it can be to admit you need help for mental health issues, and how often stigma prevents or delays people from seeking treatment, we can't help but applaud. By extending her heartfelt support and resources to fans Lady Gaga is trying to make that first step easier. Sometimes just saying how you feel out loud can be an important beginning.View Comments | Add Comment