The Child Mind BlogBrainstorm
A Bipolar Child, a Parent's Dilemma
May 10, 2013 Caroline Miller
Dorothy O'Donnell fought for years the idea that her precocious, ebullient, wildly imaginative daughter might have a mental illness. She admired Sadie's lack of inhibition—her ability to march up to kids on the playground and, pied-piper-like, lead them on an adventure to Princess Land, her impromptu dance recitals that charmed strangers at the fountain in the mall. She fended off warnings from preschool teachers that Sadie careened from giddiness to rage, that she chattered constantly during rest time, and that her antics were out of control.
But Sadie became increasingly anxious and explosive, increasingly unable to function in school and connect with other kids, until, at a low point, she told her mother, in tears, "I don't want to be on this planet anymore, Mama. I think I'd be happier in heaven."
Like all of us, O'Donnell had read about overdiagnosis of young children with ADHD, about the spiraling rates of kids being diagnosed with early onset bipolar disorder and, worse, being medicated. She didn't want to fall into that trap. And she has written a very compelling account of her struggle to do the right thing for Sadie. It's called Dancing in the Rain: The Story of a Bipolar Child, and while the headline gives away the diagnosis, there's a good deal more to the story.
If you've ever struggled with the question of whether to medicate a child, I think you'll find O'Donnell's piece very familiar, and quite moving.
I'm happy to report that I got an update from O'Donnell, who tells me that Sadie, though she still has rough spots, is now a happy and stable tween. "She loves art, fashion, hiking and singing and writing her own songs," says her mother. "And she has the self-confidence to try things I once thought she'd never be capable of—taking dance lessons, performing in a school talent show and training for her first 5-K race. Most importantly, she has a busy social calendar and plenty of friends."
For Sadie's own report on how she's doing, here's her video.View Comments | Add Comment
Two Moms With a Mission to End Stigma
May 10, 2013 Rachel Ehmke
Sandra Spencer is the executive director of the National Federation of Families for Children's Mental Health. But when her son was five years old, diagnosed with early onset bipolar disorder, she was a mom who had no clue how hard it would be to get him the help he needed. She was told by her school district that her son needed to be sent to a fulltime residential treatment facility—where he was four years younger than the other kids. It took discovering the Federation and learning about her son's legal right to a free and appropriate public education to get her son back home and into the classroom where he belonged.
The Federation hosted a thoughtful conversation on the harmful effects of stigmatizing mental illness this Tuesday as part of Speak Up for Kids. Spencer and Marie Niahros, a Family Resource Specialist and Training Coordinator, spoke not only as national advocates for children's mental health but also as mothers who have struggled to get help for their own children at school and in the community. The women experienced firsthand the shame and disbelief their sons' diagnoses raised. Spencer noted that many people still don't accept that children can have a psychiatric disorder, and people often prefer to blame parents for a child's issues. "What they didn't understand was that as a parent I already blamed myself," she said.
Before joining the Federation, Marie Niahros was a teacher for 13 years and always made an effort to advocate for the children in her class. But it wasn't until she adopted a child with mental health issues that she personally experienced the hurdles to getting support for a child who needs it. "I started to learn how I needed to talk to people, what kinds of words to use, how to be positive, and give people an idea of what my life was like." But it was hard going, and she knew that if she was having a difficult time, people without her background in education, who didn't know about special education laws, would have it even harder.
Spencer and Niahros spoke movingly about the harmful labels that kids with mental health issues get, and how those labels can stick with a child. Spencer described getting a wakeup call one day when her son came home from school frustrated and calling himself "stupid" and "dumb." As usual, Spencer told him that he was neither of those things, and then said, "Haven't I told you that time and time again?"
"Yes Mom, you told me that, but you don't hear what everyone else is telling me" he replied.
Both women are committed to fighting the stigma that makes people assume a child with mental illness is really just dumb, or lazy, or badly behaved. They say they want to instill hope in young people, and they're looking to us for help. Niahros emphasized the importance of using person-first language, or mentioning a person before their diagnosis—for example saying "a child with autism" instead of "an autistic child." They also cited the harmful way mental health is discussed in the media. In news reports and in the movies people with psychiatric issues are often portrayed as dangerous, despite the fact that people with mental illness are far more likely to be the victims of violent crime than perpetrators. "People fear what they don't know," Spencer says, which is part of why talking about mental health—what it really looks like, how it's treated, and what the barriers are to getting treatment—is so important. Spreading education and awareness can have an enormous impact on the life of a child. As family members and advocates Spencer and Niahros will attest to that. Watch their entire Speak Up for Kids conversation here.View Comments | Add Comment
Volkow Speaks Up on Science, Stigma, Addiction
May 7, 2013 Harry Kimball
Last night NIDA director Nora Volkow, MD, gave a fascinating presentation on the science of drug abuse and addiction, followed by an informative question and answer session. Both sections of the program highlighted a core Speak Up for Kids goal: the use of scientific knowledge to address stigma and ensure everyone gets the mental health care they need.
Dr. Volkow began by making a comparison between two pairs of scans: a pair of the heart, and a pair of the brain. One heart was healthy, and the other was of someone who had suffered a myocardial infarction—a heart attack. She indicated how the images showed glucose consumption in the muscles of the organ, a sign of health and activity. Bright colors lit up the healthy heart; the damaged one looked pale in comparison.
The two images of the brain were of a "control"—someone who had not taken drugs—and of a cocaine abuser. The story was the same, if more nuanced: the control brain had bright lights indicating activity in the prefrontal cortex, the control center. The other was dim. Damage had occurred. "By using these technologies we can document that there is harm in the brain, and what areas in the brain, in people that are addicted," she said. "Just like we have done in the past for cardiac disease or other types of medical illness."
Lest her point be lost, she summed up. "Our ability to document the pathology in the organ has led us to recognize that drug addiction is indeed a disease of the brain just like myocardial infarct is a disease of the heart."
This understanding for Dr. Volkow is a key to getting people with substance use disorders the help they need and deserve, a task made difficult by the enduring stigma surrounding addiction. In the litany of diseases that have emerged from the shadows—she mentions AIDS, epilepsy—she even counts "typical psychiatric disorders" as easier to accept and seek treatment for than addiction.
I recommend watching her entire presentation, which touches fascinatingly on the unique neurodevelopmental risk factors for addiction in adolescence and how they manifest in and are influenced by the social and psychological trials of young adulthood. And in the question and answer session, she provides real advice to teens and parents alike. What should a young person do if he is struggling with drugs? Talk to someone—preferably a parent, but anyone who will listen.
And on the other hand: Should a parent tell a child about his own past experiences with substance use? Everyone is different, Dr. Volkow says. But "it's important to have your kid trust in you," whether you are talking about the actual risks of drugs or your own experience. As she puts it, kids are smart, and they'll lose faith in you if you say you've never smoked pot, or that one hit will doom you forever. If you can't maintain "credibility," if you aren't "relevant," than you lose the chance to teach them about the real risks.View Comments | Add Comment
Forget DSM-5 for a Moment; What's This RDoC?
May 6, 2013 Harry Kimball
Last week Dr. Tom Insel, director of the National Institute of Mental Health, made a statement that was interpreted as a warning shot over the bow of the psychiatric community. He said the NIMH would not be using the DSM-5—that is, the latest revision of the Diagnostic and Statistical Manual, which will be released, with much fanfare, later this month—as the basis for research going forward.
This announcement was described in some blogs as the NIMH "abandoning" the DSM, and as "a potentially seismic move." So...is it? And will it affect families who are living with a psychiatric diagnosis?
Let's look at what Insel actually said. Essentially, he said that the DSM has been valuable in creating a coherent landscape of mental health diagnosis, but that its categories of disorders do not stem from any measurable causes or underlying biological conditions in the brain. His words (and note that "validity" is a scientific term, not a value judgment):
The strength of each of the editions of DSM has been "reliability"—each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure.
This isn't news—the DSM has long been conceived of as an antidote to the often unknown "etiology" or cause of psychiatric illness. Lacking objective diagnostic tests, the manual was intended to create a coherent set of clinical categories so that doctors would be on the same page, and that research into treatments could be compared. Insel's "abandonment" of the DSM is in fact a symptom of his optimism that we are now or will soon be able to discover the "real," biological causes of mental illness. And the DSM will be a casualty of this emerging science. "We cannot succeed if we use DSM categories as the 'gold standard,'" he writes. "The diagnostic system has to be based on the emerging research data, not on the current symptom-based categories."
If I can summarize Insel's point: For what we need to do—for what it is becoming clear we can do—the DSM approach is not appropriate. Even if it is still the best way to diagnose disorders and deliver treatment and knit the mental health care system together, it must begin to be supplanted by a framework that will let us apply the science of the future to clinical care.
Insel has one in mind, and the NIMH will be funding research based on a new paradigm called Research Domain Criteria, or RDoC, first mentioned online by NIMH two years ago. "RDoC is a framework for collecting the data needed for a new nosology," or classification scheme, Insel writes. And "that is why NIMH will be re-orienting its research away from DSM categories. Going forward, we will be supporting research projects that look across current categories—or sub-divide current categories—to begin to develop a better system."
We have yet to see the effects of the NIMH's new focus on collecting "the genetic, imaging, physiologic, and cognitive data to see how all the data—not just the symptoms—cluster and how these clusters relate to treatment response," as Insel puts it. But in reading back through two years of speculation and opinion on the schism, I came upon a nice quip from Dr. Stuart Kaplan in an article titled "Godzilla Meets Tyrannosaurus Rex?" He writes: "As has been often said, the brain did not read the DSM." To put this another way: RDoC aims to be what the brain really has to say about its own disorders, dysfunctions, and what causes them. To listen to the brain with proverbial "new ears" of emerging science and to let it dictate new categories and associations that will lead to the new and better diagnostic tools and treatments of tomorrow.
What does this mean for the family in the doctor's office this weekend? People and families dealing with mental illness have already been made anxious by the possible changes in diagnosis and benefits that may accompany the DSM-5, and more uncertainty—this time from high up in the federal government—can't be reassuring.
But from what I have read—what Insel has written, what watchers have written in the past two years—what we are seeing is shift towards two different approaches in psychiatry, one focused on clinical expediency, another on the needs of scientific inquiry. In the words of Dr. Nassir Ghaemi in Medscape Psychiatry, the NIMH has decided that we need two sets of diagnostic criteria: "one for practice (DSM-5) and one for research (RDoc). The one for practice can be based on 'pragmatic' decisions about diagnostic criteria; the one for research should be 'real.'"
Vaughan Bell writes on Mind Hacks: "It's worth saying that this won't be changing how psychiatrists treat their patients any time soon. DSM-style disorders will still be the order of the day, not least because a great deal of the evidence for the effectiveness of medication is based on giving people standard diagnoses."
And Insel concludes: "RDoC is nothing less than a plan to transform clinical practice by bringing a new generation of research to inform how we diagnose and treat mental disorders."
Only time will tell how these two systems will eventually work together.View Comments | Add Comment
Flying Lessons and Exposure Therapy
May 6, 2013 Caroline Miller
Paul Graham is a Silicon Valley programmer, investor and enthusiast who runs a kind of training camp for tech entrepreneurs. Nathaniel Rich, who wrote about him in the New York Times, describes him as "infectiously giddy and hyperarticulate," part Bertrand Russell part PT Barnum. The story is about Graham's work nurturing start-ups and connecting them with investors. But what really got my attention was an anecdote Graham tells the writer at the very end of the story.
Graham, it seems, developed a severe fear of flying that made him miserable for more than a decade. Then he hit on what he described as a "miracle cure." I thought he was referring to behavioral therapy, specifically, exposure therapy. But it was flying lessons. That's pretty ambitious, I thought. Then I realized it was exposure therapy. Here's how the writer describes it:
He began with hang-gliding lessons. It was a gradual process. First he ran along flat ground with a hang glider strapped to his back. If there was any head wind, he would feel a sensation of lift but not enough to levitate. Next he walked 10 feet up a hill and ran down it, clearing the ground by several inches. He increased the height until, before he knew it, he was jumping off a 450-foot cliff. "By that point, you're not even worried anymore," he said.
Long story short, the glider led to about 30 hours of flight training in a Cessna. The training included one lesson in which the instructor shut off the engine and Graham landed the plane like a glider. Finally, he was ready to try what he called "the real thing." He flew on the shuttle from Boston to New York, and found it thrilling.
"It was like flying for the first time all over again," Graham told the writer. "Like starting over with a new brain. It felt fabulous. And I thought, Wow!"
I thought, what a great description of what happens in exposure therapy! From several inches to 450 feet to thousands of feet. It worked to conquer his anxiety because it was so gradual. That's exactly what children with anxiety disorders do in exposure therapy—start facing their fears in the smallest possible increments and work gradually to "real" situations that had been debilitating. Not any more.
From now on I'll think of it as taking flying lessons.View Comments | Add Comment
Launching Speak Up for Kids: A Conversation with Dr. Harold Koplewicz and Cynthia McFadden
May 1, 2013 Caroline Miller
Dr. Harold Koplewicz kicked off Speak Up for Kids today in a wide-ranging online conversation with Cynthia McFadden about the barriers to care that keep kids with psychiatric disorders from getting the help they need.
This year's month-long Speak Up campaign comes in the wake of the tragedy at Sandy Hook, and President Obama's call for a national conversation on children's mental health. Dr. Koplewicz notes that the fact is that mass shootings are very rare, but mental illness is very common.
The overwhelming majority of kids with psychiatric problems go untreated, he notes: Only 1 out of 7 Hispanic children who need treatment get it, 1 out of 5 black children who need it, and 1 out of 3 white children who need it.
What are the barriers to care? The No. 1 barrier is stigma. We have become accustomed to adults we respect—actresses, business executives, comedians, even First Ladies—speaking up about depression, and other disorders they've experienced, he notes. But parents are still very inhibited about sharing their worries about their children. And hiding those worries, hoping your child's problems will just go away, is the worst thing you can do for a child who's struggling.
The second barrier to care is limited access to qualified mental health professionals. Pediatricians aren't trained to recognize and treat psychiatric problems, and the average pediatrician in managed care has only 7 minutes to spend on a checkup for a child. Too many problems are overlooked, or kids are routinely medicated when they would benefit more from behavioral treatment.
The third barrier Dr. Koplewicz outlined is a shortage of research. We know more about the brain than ever before, but not nearly enough to achieve the breakthroughs in treatment we need. It's the last frontier, and progress will be slow unless we get a very significant funding increase.
To achieve that we have to treat these disorders above the neck with the same respect as other disorders, and stop making them the lowest priority. Psychiatry is the orphan of medicine, child psych the orphan of the orphan.View Comments | Add Comment
Do Soaring ADHD Stats Mean Overdiagnosis?
April 29, 2013 Dr. Harold S. Koplewicz
Recently the news has been full of reports that the prevalence of attention-deficit hyperactivity disorder in the child and adolescent population is dramatically on the rise. These have been based on analysis of CDC data from a nationwide survey in 2011-2012.
The headline grabber in this analysis is that as many as 1 in 5 high school age boys have been diagnosed with ADHD, and 11 percent of school age children overall. And these numbers have stimulated concern that too many kids are being diagnosed, and put on stimulant medication.
Whenever we see a surprising increase in in the prevalence of a diagnosis, two responses spring to mind: One is that diagnostic standards have been changed—weakened—so that kids whose symptoms wouldn't have met standards before are now being diagnosed. This is a claim that doctors are guilty of overdiagnosis, or misdiagnosis, or pathologizing normal behavior.
The other response is an increase in diagnoses means that kids who weren't getting the attention they needed are now getting it, because of increased access to care, better information, or a decrease in the stigma that has so long been attached to seeking mental health care.
In my opinion, both of these things can be true.
It's true that some kids are getting quickie ADHD diagnoses and, yes, prescriptions, by overworked and undertrained doctors. Not all kids who have trouble paying attention in school or behaving well in the classroom have ADHD, and it's sometimes easier to try medication than to investigate out what's really behind problematic behavior. A knee-jerk diagnosis is a disservice to kids whose problems are rooted in anxiety or depression or family crisis.
But it's also true that there's an increase in awareness among families, educators, and health professionals that kids with impairing school struggles or dangerous misbehavior really can, and must, be helped. Just washing our hands of kids who have problems and letting a lot of them drop out of school is not a viable option either for those children or for our society. They need to become successful learners in order to be successful adults, and we need them to be prepared, intellectually and emotionally, to form a prosperous and competitive new generation. That's one reason a lot more parents are hearing that they might want to have their kids evaluated—and that there are more diagnoses as a result.
It's important to note that while news organizations have done analysis on the raw data from the CDC survey, the CDC has not yet released their own study. And it's important to pay close attention to the methodology of these mass surveys, lest we overreact. The CDC survey is based on parent responses to questions I believe could possibly elicit misleading responses. For instance: "Please tell me if a doctor or other health care provider ever told you that [the child] had the condition."
Often psychiatry is accused of being an unscientific, disturbingly subjective enterprise full of clinicians desperate to label and then medicate people—the more the better. For one, most ADHD diagnoses are made by primary care doctors, not psychiatrists, and that it is in all of our interests to be very careful about who we diagnose and medicate.
But we should also be very careful about throwing around accusations of fraudulent diagnoses, claims that ADHD isn't a real disorder, and horror stories about stimulant medication use by school children leading to addiction. ADHD is a real brain disorder; it can create severe barriers to success in school, in relationships, in life; and kids who don't get treatment are at heightened risk for drug abuse, not the other way around.
The CDC survey is remarkable for its large size and how representative it is of the population. What we also need are studies of this size that report more specific and dependable clinical information if we are truly going to understand how ADHD and other childhood psychiatric disorders are affecting our kids, and how we as a society are meeting this challenge. I think that people on all sides of the debate would agree.View Comments | Add Comment
Autism Study Offers Models for Success at Multiple Points on the Spectrum
April 26, 2013 Caroline Miller
Dr. Catherine Lord and her colleagues have been studying the same group of several hundred children on the autism spectrum (or most of them, anyway) for 2 decades, since they were less than 3 years old. The results of that undertaking are remarkable in several ways. First, they've been able to identify important predictors of how children on the spectrum will develop, based on their very early behaviors as well as the kind of help they get—and when they get it. But second, they've acquired a very nuanced knowledge of these kids, not to speak of a passionate interest in how they have fared over the years, and how they're doing as young adults. And those individual portraits were the most surprising aspect of a guest lecture at the Child Mind Institute this morning by Dr. Lord, who is the director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital.
Of the kids still in the study, eight have done, as Dr. Lord put it, "spectacularly well"—at 19 they were in college, had part-time jobs, had social lives and girlfriends. They're almost off the spectrum, she said, though they were clearly on it at 9 and 14. At this point, she quipped, they seem less autistic than the University of Chicago or MIT physics department.
Another ten of the final group are also doing very well. At 29 they were going to college, but socially they were more challenged, more obviously autistic, more dependent on their families. This group has a higher level of depression than the top group. They're kids who have been quite successful channeling their talents and interests into an effective work or school opportunity, but are still living at home and struggling to have friends. The social deficits are the hardest things to change, she noted.
What these two groups of kids have in common is a positive trajectory on a whole range of autism and IQ scales from a very young age. Improvement starts early, she emphasized, but it's also very gradual over the period from 3 to 19. That improvement is linked to parents taking immediate action when they got the autism diagnosis, and getting kids into consistent communication skill-building programs.
Of course Dr. Lord is excited by that improvement, which she said gives her high hopes. But she also sees many kids in the rest of the remaining sample of 76, including those who are quite cognitively impaired, leading happy lives, and that gives her hope—and anxiety, too.
The hope comes from seeing how well they can do when they have highly structured families and other support in the community—schools, churches, jobs—that help channel their strengths into rewarding roles. She spoke warmly about one boy we see at 3, with his grandmother, who is still living with his grandparents at 19. He is cognitively impaired and has very little speech—single words, Dr. Lord said—but he is very fixated on being neat, and his grandparents worked with that to teach him to run the house. He had to be taught not to start the dishwasher until it's full, and not to remove your glass every time you put it down, without making sure you were finished with it. But he is essentially taking care of his grandparents now, and also has a part-time job at a bakery.
As a young child this boy was so socially aloof that if you stood in his path, Dr. Lord said, he'd just move you out of his way and keep going wherever he was going. "But now he's very socially directed," she said. "He wants to know what you're doing and what you want. He really wants to please you." And when his grandfather fell ill, the boy was obviously worried and concerned—not that he verbalized his feelings, but, she said, he made it clear how he felt by constantly changing the sheets.
The worry inspired by these kids' stories stems from the fact that their success is, as she put it, "highly dependent on context." She worries about what happens to them when they age out of supports—when this boy's grandparents are no longer there caring for him as he's caring for them. "We just don't have the infrastructure in this country to support them, even though we know they could do well."View Comments | Add Comment
New Voices on Babble's Autism Bloggers List
April 16, 2013 Beth Arky
For the third April running, the parenting website Babble is doing its part to raise autism awareness—and acceptance—with its Top 30 Autism Spectrum Blogs of 2013. The bloggers run the gamut: neurotypical parents of autistic kids, autistic parents of autistic kids, and autistic adults who aren't parents but provide a window into what it's like to live in a world geared to the typically "wired." All offer insight, support and invaluable practical advice to parents of autistic kids and, increasingly, children, teens, and young adults on the spectrum.
About a third of the bloggers on this year's list are on the spectrum, about the same number as last year. However, Joslyn Gray, who wrote the Babble story and was one of the panelists who chose the list, says, "I think overall, we are seeing more neurotypical people reading blogs by autistic writers, which is great.
"For me as a parent of two children on the spectrum, I was definitely thrilled to see so many autistic writers included," adds Gray, who also blogs at stark. raving. mad. mommy. "I want autistic voices heard not just because that's what's right, and what's helpful for all of us, but because I want my children's voices heard, too." On that note, she is happy that the panel included Rachel Kenyon, an Army wife and autistic parent of an autistic daughter and a neurotypical (NT) son, who blogs at Welcome to Stim City.
Among the notable additions: three mom bloggers of autistic kids who are themselves autistic: Jennifer at Asperkids, who Gray deems "an amazing resource, especially for parents of girls on the spectrum and tweens and teens on the spectrum"; Jean Winegardner at Stimeyland, whose "funny, honest, and self-deprecating" style led her to write, "I am like Buzz Lightyear: I am falling with style"; and Aussie Bec at Snagglebox, who offers up a blog that's "chock-full of resources, support, and information" for parents and teachers, including free downloads like 45 Ideas for Classroom Friendly Fidget Toys.
Julia Bascom of Just Stimming is one of the better-known autistic bloggers who prove you don't have to have children to provide valuable parenting advice. The newest entry in this category: The Third Glance. Gray writes that while the blog is written by a young autistic woman without kids who is working on her doctorate in science, it offers "powerful insights into growing up autistic." Because of that, "it's still one of our favorite parenting blogs because it helps you be a better parent."
Also represented, of course, are the neurotypical parents writing about their special-needs kids. Among those joining returning bloggers like Sunday Stilwell (Adventures in Extreme Parenthood), the anonymous Autism Daddy, and Erica and Lisa at Laughing Through Tears comes Jim Walter, author of Just a Lil Blog. Gray describes Walter as a "self-deprecating" neurotypical dad who writes a "hilarious and poignant" blog about his daughters—one autistic, one typically developing—and wife, who is recovering from breast cancer treatments.
Marj, who has two boys at opposite ends of the spectrum, is behind the ironically titled Domestic Goddess, another of the list's newcomers. The panel loved the fact that the blog "isn't entirely about autism," Gray writes. "Blog posts are about the whole of family life. It's a great reminder that even when it feels like everything in life revolves around ASDs, ADHD, SPD, OCD, and IEPs, there's more to your family and your kids than a bunch of acronyms."View Comments | Add Comment