The Child Mind BlogBrainstorm
White House Conference Kicks Off With Plea for Openness
June 3, 2013 Caroline Miller
President Obama launched a White House conference on mental health this morning with a surprisingly down-to-earth message. He ticked off some sobering statistics about people suffering from psychiatric illness—for instance, we are losing 22 veterans a day to suicide—and he talked about federal initiatives to do a better job helping them. But his message was mostly to individuals, especially vets, who might be listening to his voice: "Just as you would take care of yourself and those around you in battle, you've gotta do the same thing off the battlefield. You're not alone. You are surrounded by people who will support you and care for you."
He sounded the themes repeated throughout the first session: to anyone out there who is struggling, please seek help. If you know someone who is struggling, please help them get care. Mental illness is treatable. There is hope.
Secretary of Health and Human Services Kathleen Sebelius also addressed the challenge of making it more comfortable for people suffering from psychiatric illness—and here we would add parents of children with psychiatric illness—to ask for help. "Mental health needs to be an issue talked about openly and freely without fear of being judged," she said.
Glenn Close, one of five professionals and activists on the day's opening panel, said some interesting things about stigma. People think there's no longer stigma surrounding mental illness, she said, since most people understand that mental illness is in fact an illness like any other. "But the truth is stigma has hardly budged." As a result there is a surprising amount that we don't know about people we work with and are friends with—even people in our families. She first realized this, she said, when her sister called her up one day and said, "I need help because I can't stop thinking about killing myself." Close was stunned. "I am ashamed at what I didn't know about my own sister," she said.
For Close, that was the beginning of her commitment, through her organization, Bring Change 2 Mind, to getting people to tell their stories about living with mental illness. "The way to change somebody's attitude is to have them actually meet someone and hear their story," she said.
I'm with Close on that. It's pretty hard to imagine that people could continue to dismiss children's problems or blame them on parents, as so many do, if you'd met the families I've gotten to know at the Child Mind Institute.View Comments | Add Comment
Sen. Rockefeller Makes Concussion National Issue
June 3, 2013 Michael Rosenthal, PhD
If you are the parent of a school-aged child who plays sports, you've probably been affected by concussion in some way. Your child may have had one, or perhaps one of his or her friends. The school might have had you sign a form about concussions or given a presentation about how to identify the signs and symptoms and what to do if you're concerned your child may have been injured. You may have also noticed changes in how games or practices are run, or what kind of headgear the kids are wearing. This attention to concussion is the result of local activism but also of concerned legislators, and I'm happy that US Senator Jay Rockefeller of West Virginia recently made it a nationwide issue by introducing a concussion safety bill in the Senate.
The history of legislative approaches to the problem of youth concussion really began with the unfortunate circumstances of a young man named Zack Lystedt and the work of an attorney named Richard Adler. In 2006, then 13-year old Lystedt suffered repeat concussions while playing junior high school football, leaving him permanently disabled. Adler supported Zack and his family through his recovery and went on to draft legislation designed to protect youth athletes. On May 16, 2009, the Lystedt Law was passed in Washington State, requiring that athletes under the age of 18 who are suspected of having sustained a concussion are removed from play and not allowed to return until cleared by a medical professional. The law also mandates concussion education for athletes, parents, and coaches. A majority of states have adopted similar guidelines, and we have seen a major shift in how these injuries are understood, recognized, and managed.
Lystedt and Adler have made an enormous impact on youth sports, and no doubt saved lives. But there is still a tremendous amount of work to be done, especially in educating the public about the different aspects of concussion safety, including prevention. Last month Senator Rockefeller introduced the Youth Sports Concussion Act, which mandates universal safety standards for helmets and clamps down on companies making deceptive claims about their products. As a clinician, one of the most common questions I get from parents is about some new helmet that claims to be "concussion-proof." My response is generally the same: Show me the data! In the midst of this concussion craze, some companies are exploiting the fears of parents in an effort to sell products that may actually give a false sense of security and put kids in more danger. Senator Rockefeller's bill is a timely and essential step towards cementing the legacy of Zack and Richard and, ultimately, keeping kids safe as they play the games they love.
Michael Rosenthal, PhD, is a pediatric neuropsychologist with expertise in the evaluation and treatment of children and adolescents from pre-school through early adulthood, particularly when complex questions exist about autism spectrum disorders and concussion or mild traumatic brain injury.View Comments | Add Comment
Salon Owner Has Tantrum Over Crying Autistic Child
June 3, 2013 Beth Arky
Many autistic children are prone to unpredictable meltdowns, triggered by everything from transitions to changes in routine to sensory issues, turning something as mundane as a haircut into a stressful experience. When they have them in public, they and their parents are often judged harshly.
Such was the case last week for Ashley Bays and Grayson, her 2-year-old autistic son. As Bays explained in a local TV news interview, Grayson is "terrified of people touching his head and his ears, and the sound of the clippers." So even though the Michigan mom has been bringing Grayson to the same stylist at MSpa for more than a year in hopes of establishing a routine, he cries every time. But during this visit, owner Michelle Mott turned the already difficult situation into a nightmare by yelling at the upset child and distraught mom, forcing them out of the salon.
It could have been just another painful incident for a struggling mom if not for Vanessa Hunt, who witnessed the episode and recounted it in a searing Facebook post. Undoubtedly bolstered by the strong online special-needs community, the update went viral, leading to coverage by national media. A week after Hunt posted, there have been more than 40,000 Facebook shares.
In her post Hunt, who was at the spa getting a birthday manicure with a friend, decried the "severe tongue lashing" the owner meted out, but perhaps more importantly, she expressed empathy for the mom and the little boy. She wrote that the crying child reminded her of her son's first haircut. "It was seriously painful to watch seeing as I have been there more than once myself and it's very hard when your child is having a tantrum in public. The last thing you need is a woman yelling at you for it."
And she expressed that empathy directly: "Jess and I walked outside to see the hairstylist finishing the little boy's haircut on the lawn. The mom still crying and cradling her precious son. We hugged her and cried with her too."
We applaud people like Hunt and Houston waiter Michael Garcia, who refused to serve a patron after he made disparaging remarks about a Down syndrome child eating with his family. They are spreading a message of understanding and acceptance, of standing up and doing the right thing, even if it appears Mott learned nothing; her main reaction to the online firestorm has been to take down MSpa's Facebook page and issue a statement that the matter was handled "appropriately."
But it isn't the anger that's the most important thing here. It's the message that children who can't be counted on to behave typically don't have to be isolated from the community, and that most people (though not all, obviously) have enough generosity and warmth to cut them a little slack. It's one of the most important things we can do for them and their parents, who, you can be pretty sure, are doing their best to make these experiences work for everyone.View Comments | Add Comment
PANDAS, OCD, and a Bomb Plot
May 28, 2013 Caroline Miller
An Oregon teenager was charged with aggregated attempted murder today for plotting to blow up his high school. Seventeen-year-old Grant Acord was caught with an arsenal of bombs and bomb-making material secreted under the floorboards of his bedroom, along with checklists and diagrams with which, it is alleged, he hoped to outdo the Columbine killers.
The already disturbing story took another painful turn today when his mother reported that he was suffering from PANDAS. That's the rare and controversial form of acute-onset OCD that is linked to strep infections. PANDAS—it stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcus—is a syndrome which can come on virtually overnight, after a child has contracted a strep infection. Symptoms include tics and the severe obsessions and compulsions associated with OCD, as well as a host of disorienting behaviors, including intense separation anxiety, sleep disruption, handwriting changes, trouble eating, panic attacks, irritability and emotional outbursts. Parents describe their children as suddenly unrecognizable, and conventional treatment for OCD doesn't work effectively—you can read more about it here.
It's troubling whenever an act of violence is associated with a particular psychiatric disorder, because it's easy for people to stereotype other people with the disorder, wrongly, as prone to violence. In this case it's particularly troubling because parents of kids with PANDAS are already in a very tough spot because of dissent within the mental health community about how to treat PANDAS, and whether, in fact, the disorder actually exists.
Acord's mother's attorney has been quick to use the disorder to build a defense, telling the press that the teenager is "very mentally ill" with PANDAS. As Dr. Jerry Bubrick, the head of the Child Mind Institute's OCD program, puts it, "That statement will do nothing but increase the stigma about a condition that is already so misunderstood."
Dr. Bubrick says that although a small percentage of kids with PANDAS may have explosive episodes in which they are violent, "it tends to be more impulsive and situational, and the child is usually remorseful afterwards. That is very different than premeditating a violent attack, which involves conception, planning and precision. Although both are expressions of anger, their intentions are very different and should conceptualized differently."
Parents of kids with PANDAS already face daunting confusion as well as skepticism from those clinicians and researchers who don't consider the link between PANDAS and strep conclusively proven. Despite efforts to resolve the conflict—including a new broader category called PANS (pediatric acute-onset neuropsychiatric syndrome) that does not specify the link with strep or any other form of infection—the teams are still far apart. The ongoing controversy makes treatment extremely difficult for parents to obtain, and we hate to see any more challenges added to their lives, and those of their children.View Comments | Add Comment
Two Psychiatrists Discuss the Changes (and Controversies) of DSM-5
May 28, 2013 Caroline Miller
At childmind.org we've had our heads bent over the DSM-5 this week, chasing down the changes we've been expecting in diagnoses that affect children. We should have the details reflected in the updated disorder guide in the next week or so. But in the meantime, an excellent piece on childmind.org considers both the reasoning behind the changes, and some of the important objections that have been raised about the DSM-5 recently.
The new piece is a very incisive conversation between Drs. Bennett Leventhal and David Shaffer, two eminent child and adolescent psychiatrists, that took place Friday for Speak Up for Kids. The doctors discussed the updates on diagnostic thinking included in the DSM-5, and the widely publicized charge that the DSM itself is invalid because it is based on clinical observation and studies, rather than on brain research. You know, the quip about how the brain didn't read the DSM.
Dr. Shaffer sums up the history of the DSM, from its prewar origins in an effort by the Department of Defense to categorize the mental disorders suffered by veterans of the Armed Forces, to an effort to standardize what had been rough classifications into more and more precise descriptions. The gradual iteration of DSM criteria (this many symptoms, over this period of time, with this effect on functioning) was done, he notes, not to pathologize more behavior but to make it possible for researchers to be able to effectively identify subjects for their studies and, not incidentally, to make diagnosis something that many different professionals could do.
Changes in the DSM are made, he says, when new information calls into question the validity of criteria and their effectiveness in clinical setting. One example is the important new diagnosis disruptive mood disregulation disorder. It's a response to what Dr. Shaffer describes as a real crisis in child psychiatry—an escalating number of kids being given the diagnosis of bipolar disorder when they don't meet the criteria applied to older-onset bipolar disorder: episodes of mania. These kids are chronically irritable and prone to meltdowns, and their need for help is urgent. But they don't follow the typical course of bipolar disorder into adulthood, and the medications used to fight bipolar disorder don't work well for these children. Bipolar disorder is a very serious, lifelong diagnosis to give to parents, especially, he notes, "when the evidence was so weak."
Creating a new diagnosis, he says, is the first step to studying and rethinking approaches to helping these children. Rather than developing adult bipolar disorder, many of them develop anxiety disorders as they get older. It may be more fruitful, he hypothesizes, to think of them as very anxious children. Children with early-onset anxiety fight very hard to control their environments in order to manage anxiety and feel safe; the smallest change in plans or deviation from their expectations can make them melt down. Instead of treating them with antipsychotics, it makes sense to treat them with antidepressants and other medications that are effective for anxiety. And it could change the therapeutic approach, as well—to exploring and treating the anxiety, if that's what's making them very upset and very aggressive, with behavioral therapy.
Drs. Shaffer and Leventhal go through the other big changes in DSM-5 as well, and if you're wondering about the rationale, I recommend listening to the whole talk here. But they also offer some interesting thoughts about the controversies that have surrounded the changes.
Specific changes, Dr. Shaffer notes, are always debated fiercely within the mental health community, with some advocating against the updates. He argues that some of the many professionals who lobby against changes in the DSM have a vested interest in seeing the criteria remain the same—books, rating scales, research projects all face updating or rethinking when the DSM changes. Some worry about schools and the insurance companies—whether they will accept the changes, rather than whether they will allow professionals to do a better job understanding and helping kids. Just something to keep in mind.
To the charge that psychiatrists are bent on medicalizing more and more of human behavior, he notes that half of the members of the committees who worked on the updates for DSM-5 are professionals other than psychiatrists. He also notes that no one is allowed on the working committees who has pharmaceutical ties or is receiving pharma research funding.
Both doctors noted that the prevalence of mental illness isn't likely to change, but the updates may bring some different symptoms into the discussion of a disorder, and hence "make people who use it more sensitive to certain symptoms." If your child's diagnosis has changed, do you need to get a new diagnosis? That depends, Dr. Shaffer said, on two things: "Has the diagnosis been useful? Has it led to effective treatment?" If the answer to those questions is yes, he said, don't worry about DSM-5. Your current diagnosis will be grandfathered in. If treatment is not working, you might want to see your clinician about how the changes affect your child.
And to the charge that the DSM is a "philistine endeavor" because it isn't based on brain science, I think it's safe to say that both doctors look forward to advances in brain science that will yield treatment applications, but at this point those applications are few, and the DSM is an enormously valuable tool for identifying, investigating, and treating mental illness.View Comments | Add Comment
Sesame Workshop's Advice for Families Going Through Divorce
May 28, 2013 Rachel Ehmke
Divorces are hard on kids. And because 50 percent of all first marriages end in divorce, and two-thirds of those marriages involve children, Sesame Workshop—the people behind Sesame Street—have pledged to help families going through divorce stay as resilient and strong as possible. As part of their effort, JoAnne Pedro-Carroll, PhD, a clinical psychologist who specializes in divorce, joined Sesame Workshop and Speak Up for Kids last week to share some of her expertise.
Dr. Pedro-Carrol focused on some of the risk factors that can prevent kids and parents from moving forward healthily, and some resilience factors that can help. She said one of the biggest risk factors is conflict, which unfortunately is also something very natural at the end of a relationship. Dr. Pedro-Carrol notes that ongoing conflict is "like a toxin" for children, especially when they're stuck in the middle. To help children stay healthy, she advises that parents present a united front as best they can and shield children from any bickering that might be going on behind the scenes. For couples struggling with this, she recommends, "renegotiating the relationship with a former spouse to that of business partner" in the business of raising your children.
The second biggest risk factor she mentioned is poor quality parenting. Even when parents are trying their best, the added stress and pressure of a divorce does take its toll, and parents often "don't have the patience or ability to set limits" says Dr. Pedro-Carrol. Setting limits might not even feel right to sensitive parents who are trying to make kids feel better during a tough time. But limits actually give kids a sense of security, she said, particularly during a time when everything else in their life seems to be changing. Dr. Pedro-Carrol notes that staying emotionally responsive to kids is important, too. Divorce brings up a variety of feelings for kids, and it's important for kids to know that all feelings are okay-but not all behaviors are. Finally, Dr Pedro-Carrol also told parents going through a divorce not to overlook their own limits, either. "Parents are able to give their best to their children only when they take care of themselves," she said.
To listen to the entire Sesame Workshop talk, and to learn about some of the materials they have put together to help families going through divorce, click here.View Comments | Add Comment
30 Years Later: Following Kids With ADHD Into Adulthood
May 20, 2013 Caroline Miller
Dr. Rachel Klein has been following a group of some 200 boys with ADHD for more than 30 years. I should say boys with the symptoms of what we now call ADHD, because the diagnosis didn't exist in 1970 when she and her colleagues began the study. The boys were around 8 at the start, of average or higher intelligence, and hyperactive and inattentive both at home and at school. Those who exhibited aggressive or anti-social behavior, which we'd now call conduct disorder, were not chosen for the study, to keep it focused on the outcomes of ADHD alone. They were compared to a control group of kids who were described by teachers and parents as behaving typically.
It's a remarkable study because of the detailed interviews and data collected from these children well into adulthood. The boys were interviewed again when they were 18, 25 and 41. Dr. Klein, who is director of the Anita Saltz Institute for Anxiety and Mood Disorders at the NYU Child Study Center, reviewed the findings during a visit to the Child Mind Institute Friday.
The kids with ADHD overall fared worse in school, in jobs, in family stability, and with the law, than the control group. But one of the one of the key findings is that 60 percent no longer qualified for an ADHD diagnosis at 18—and those kids who outgrew their symptoms fared differently over the long term than kids whose ADHD symptoms persisted.
Of the kids in the original ADHD group, the 40 percent who still qualified for the diagnosis at 18 were much more likely to have developed two new problems during adolescence—anti-social personality disorder and substance abuse disorders—than those who had outgrown their ADHD, or the control group. And they were most likely to develop them in the same order, in what Dr. Klein called a "developmental cascade": ADHD heightens risk for anti-social personality disorder, which in turn heightens risk for substance-abuse disorder.
But the good news is that the interviews at 25 and then 41 showed no heightened risk for new anti-social or substance abuse disorders after the checkup at 18. There are still clear disadvantages that continue into adulthood for the group in which the ADHD persists-but they all started in adolescence. As Dr. Klein put it, "If you've made it through adolescence, you've made it, relatively speaking."View Comments | Add Comment
'I Wish I Was Dead': How to Respond to Suicidal Talk
May 16, 2013 Caroline Miller
USA Today ran a story yesterday about a 16-year-old New Jersey girl who posted a suicidal message on her Tumblr blog and, thanks to an alert reader in California and some enterprising police officers, was tracked down within hours and hospitalized.
I read the story after listening to Dr. Nadine Kaslow, a clinical psychologist who is the president-elect of the American Psychological Association, talk about suicidal behavior in teenagers. Dr. Koslow stressed the importance of taking all suicidal talk seriously—two of the worst myths about suicide are that talking about killing yourself is just a teenager being typically overdramatic, and that if parents respond to talk about suicide, the child is more likely to act on it.
The idea that talking with a child about suicidal feelings will make them more lethal is exactly wrong, she said. A child who says "I wish I was dead," or, "If I had a gun I'd shoot myself," is likely to be in serious pain, overwhelmed by feeling hopeless, worthless, or ashamed. That child needs you to talk in a "calm, non-accusatory way" about how she's feeling, to hear "over and over and over" from you how much you love her and care about her and how important her well-being is to you. That connection to you, the active engagement in her life of caring adults, is one of the most important factors in lowering a child's risk of death by suicide.
In her talk for Speak Up for Kids, Dr. Kaslow outlines the factors that put kids at higher risk for suicide (low self esteem, isolation, stigma against asking for help, access to lethal means, among others), as well as factors that protect them from suicide (good problem-solving skills, strong community ties, access to mental health care, among others). She discusses events in a child's life that might trigger suicidal thoughts, and warning signs that a child might be in danger.
I recommend the whole talk, even if you aren't worried about a child. It's a potent reminder of how easy it can be to get out of touch with teenage children, even when you're living under the same roof.View Comments | Add Comment
Christine Quinn and Angelina Jolie Get Personal
May 14, 2013 Caroline Miller
Christine Quinn, speaker of the New York City Council and mayoral candidate, went public about her battle, as a teenager and young adult, with bulimia and alcoholism. She described her struggles as a 16-year-old caring for her mother, who was dying of breast cancer, and secretly bingeing and purging to relieve her oppressive feelings. She continued doing it, and getting into serious drinking, in college, as she wrestled with sadness and the challenge of acknowledging that she was gay. It wasn't until she had moved to New York and admitted her problem to Tom Duane, the gay city councilman whose campaign she ran, that she went into treatment.
"I just want people to know you can get through stuff," Quinn told a New York Times reporter in her typically direct way.
Angelina Jolie made the more startling announcement today, also in the Times, writing that she has recently had a prophylactic double mastectomy. She writes that she carries the BRCA1 gene, which indicates a very high risk of ovarian and breast cancer; her own mother died of breast cancer at 56. The decision is stunning, but so are the numbers Jolie said she was faced with: an 87 percent risk of developing breast cancer, and a 50 percent chance of getting ovarian cancer.
"Once I knew that this was my reality, I decided to be proactive and minimize the risk as much as I could," Jolie writes with awesome concision. "On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity."
Both Quinn and Jolie took big risks to make these public statements: They're both very tough women with very public lives, and both obviously wanted to turn painful experiences into something positive, something that could benefit others. But I wonder if they both also saw value, at this moment in their lives, in being known as who they are, not who they were or who others want or imagine them to be.
In the heat of a mayoral race, Quinn has been characterized as demanding and volatile. She's not, apparently, always nice when she's frustrated—a trait she shares, I would note, with both of our last two mayors. Perhaps, as critics will charge, she's offering this story to "humanize" herself; whatever the motive, it affords a less fairy-tale version of a life of considerable accomplishment.
And what can I say about Jolie here that isn't understatement? Our reigning Hollywood sex goddess action hero wants the world to understand that she is a mom intent on living to see her children grow up. That's speaking up for the kids.View Comments | Add Comment
Patrick Kennedy: Mental Health Care as a Civil Rights Issue
May 14, 2013 Caroline Miller
Congressman Patrick Kennedy gave a rousing talk this morning for Speak Up for Kids about equal treatment for people with mental illness as nothing short of a civil rights issue.
He draws his passion and his insight, in part, from his own experience battling mental illness. He knows first hand how hard it is for families to get good diagnosis and treatment, and how damaging it is when psychiatric illness is not taken as seriously as physical illnesses. Brain illness deserves parity, he argues, not only under the law, in insurance coverage, but in research dollars devoted to unlocking new treatments.
Asked about how and when he was diagnosed as bipolar, he said this: "The honest truth is that it's taken me a lifetime to get adequate diagnosis."
Rep. Kennedy described being "bounced around the system"—a phrase we hear a lot from parents. In his case it was not because he lacked resources or insurance coverage, or family members fighting for him—he was very fortunate in those things, he acknowledged—but because when the diagnosis isn't correct, the treatment won't work. "When you're still trying to put your finger on the diagnosis, people are treated for various illnesses that may not be the specific illness they suffer from." There's a lot of ineffective treatment of brain illness, he added, because of misdiagnosis.
"The crucial thing we need to do is improve the diagnosis," he said. "And that only happens when we improve the science." Rep. Kennedy advocates a national brain research initiative that will allow scientists to uncover the mechanisms that underlie mental illness instead of focusing on specific disorders like autism or ADHD.
Not making brain research a national priority, he argues, is tantamount to telling people with mental illness they have to wait for equality.
He reminds us of President Kennedy's 1963 speech challenging all Americans to understand the urgency of those denied their civil rights on the basis of race: "Who among us would be content to have the color of his skin changed and stand in his place? Who among us would be content with the counsels of patience and delay?"
Similarly, Rep. Kennedy says, "If you have a loved one with autism, a mood disorder, with Alzheimer, how long would you tolerate us taking the slow road to better cures and better treatments?"
You can see the whole talk here.View Comments | Add Comment