The Child Mind BlogBrainstorm
A Psychiatrist Rethinks Antipsychotic Meds for Schizophrenia
Dec. 23, 2013 Caroline Miller
Sandra Steingard is a psychiatrist who has been treating people who are psychotic for 30 years. She recently published a piece in the Washington Post that spelled out some changes in her thinking about how we can best help people who struggle, over a lifetime, with things like schizophrenia and bipolar disorder. She has important things to say about what it means to live with mental illness and how to treat it.
The piece was prompted by a tragic shooting last fall, in which a man who told people he had been "hearing voices" killed 12 people at a Washington, DC, area Navy Yard. As she puts it, "Almost every day I meet with individuals who hear voices that no one else hears, are sure the TV or radio is talking to them or have such confused thinking that it is hard to understand what they are trying to tell me."
Dr. Steingard explains that accepted practice, for many years, has been that patients with schizophrenia should be on antipsychotic medications, not just to control symptoms when they occur, but indefinitely. Often-cited studies from the 1970s and 1980s had found that patients who stopped taking medication after symptoms subsided were more likely to relapse than those who kept taking it. And while Dr. Steingard notes that very, very few people who hear voices or suffer delusions are a danger to anyone else, those voices and delusions can be very problematic for the person who's having them, not to speak of those who love him. Still, preventing relapses isn't the only priority. Staying on meds didn't necessarily mean that the patient's quality of life was better. And since antipsychotics have undesirable side effects, including dangerous weight gain, she began to have second thoughts.
Then she saw the results of a Dutch study that showed that over 7 years, patients who were not continuously on antipsychotic medication—"they stopped taking drugs when they became well but restarted them if symptoms emerged"—were much likelier to be able to work and have meaningful relationships than those who took medication continuously. And they had no higher rate of relapse. As NIMH director Tom Insel wrote in a blog post about the study, "Clearly, some individuals need to be on medication continually to avoid relapse. At the same time, we need to ask whether in the long-term, some individuals with a history of psychosis may do better off medication."
So Dr. Steingard took a big step, and began discussing with a group of her patients the option of reducing their medication. Some two-thirds of the patients in the group decided to try cutting back, with close monitoring. "The Dutch study shifted the focus away from the belief that we need to eradicate all symptoms of schizophrenia to a focus on improving the quality of patients' lives and health, the relationships they have, the work they do."
Dr. Steingard's account of the evolution in her thinking (and practice) is very compelling and it proposes, as Dr. Insel's piece does, less reliance on medication and more on combining medication with things like family support and behavior therapy. And it involves seeing a person with mental illness as an active participant—indeed, the most important participant—in her treatment. "The point is that this is not a choice I should be making for my patients," she writes. "It is a choice I need to make with them."View Comments | Add Comment
ADHD and Pharma Advertising
Dec. 16, 2013 Caroline Miller
A major story in the New York Times over the weekend offers a riveting look at pharmaceutical advertising and other spending to promote ADHD medication to parents, teachers and doctors. The ads are shameless and they do, indeed, suggest that stimulant meds are good for everything from improving lackluster grades to getting kids to take the garbage out. Alan Schwarz, who's made a specialty of reporting on abuse of ADHD meds in the Times, has done a good job exposing the pharma money being funneled to doctors and advocacy groups to push the medication.
Schwarz links these ads and payoffs to the steep rise in prescriptions for ADHD medication over the last decade and more. What he doesn't do is offer any evidence that these marketing efforts are the major, or even a major, factor in the increase.
Proving the impact of marketing campaigns is notoriously difficult to do, especially when there are other factors that could be driving the increase. In this case, there are hugely important changes in our economy and educational system that make school failure much more serious in the 21st century than it was in the 20th.
If parents are quicker to worry about their kids struggling in school—and to seek help—than they used to be, it seems less likely to be the result of magazine ads for Adderall than awareness that there are no longer good jobs for kids who don't get a good education. They're more worried about kids succeeding in school because the stakes are higher than ever.
If teachers are quicker to blow the whistle on kids who are disruptive or falling behind in their classrooms—and to suggest that parents get help—it seems to me less likely to be because they've drunk the pharma kool-aid than because schools now lose their funding if not enough kids pass standardized tests. As Dr. Stephen Hinshaw has documented, some states have much higher rates of diagnosis and medication for ADHD than others, and the highest are those that were early adopters of laws, now in effect all across the country, that base school funding on student test scores. Every child who fails is now a problem for the school, too.
Of course we suspect it's true that some kids who are getting diagnosed with ADHD don't have the disorder—if they're struggling, it may be from anxiety or trauma or lack of sleep or that they just aren't mature enough to manage current expectations for kids in elementary school, as one pediatrician suggests in the comments of the story. What we don't buy is that large numbers of children are being medicated for problems that aren't real—that are invented by drug companies or by overweening parents. Such an assumption does a real disservice to the majority of parents who go to their pediatrician seeking help because they've hit a dead end. And as long as we place the blame on a Good Housekeeping ad we continue to ignore whatever real problems these kids are facing.
The other group that always gets lost in the conversation about the overdiagnosis of ADHD is the many children who really do have the disorder. For kids who do have ADHD, medication can be a lifeline, giving them an opportunity to flourish and a chance for extremely stressed families to recover. For those families, popular skepticism of both the diagnosis and the medication just adds to their challenges. I give the last word to another commenter on the Times story:
Like everything else, ADHD can be exploited and it is. This is unfortunate for those who have struggled for years to overcome the "there's no such thing" barrier and receive the help they need. Now we have the other extreme—ADHD turning up everywhere and in the end, another reason to dismiss those with a real, life-impairing disorder.View Comments | Add Comment
This 14-Year-Old Boy Hears Voices
Dec. 13, 2013 Caroline Miller
A CNN reporter named Wayne Drash, after covering the Sandy Hook School shootings last December, decided he needed to know more about mental illness. He wanted to take a closer look, not to try to explain a national tragedy, which tends to be the only time we really pay attention to mental illness, but to understand how it affects an ordinary American family.
The result is an intimate and compelling multi-media story on CNN.com about a 14-year-old boy named Daniel who has bipolar disorder with psychosis. Daniel has agonizing episodes in which he hallucinates and hears voices urging him to kill his brother. To alleviate the pain, and the fear that he might actually hurt his brother, he walks or runs or hurts himself. He is often suicidal and at least once made a serious attempt to end his life.
Daniel has a remarkable mother named Stephanie Escamilla who works with him tirelessly to help him manage his episodes and fight those voices and have, as much as possible, a normal life. With medication and careful monitoring of the things that trigger his psychotic episodes, he can sometimes go without one for months. But he has also been hospitalized often when they're out of his control.
Stephanie and Daniel (and the rest of the family) welcomed Drash into their home and their lives in the hope that their candor would help people understand what it's like to struggle with mental illness. It's a terrific piece, and their willingness to share their one-day-at-a-time battle is as impressive as Drash's decision to devote months of attention to it.View Comments | Add Comment
Child Advocacy Award Dinner Raises $6.65 million
Dec. 12, 2013 Caroline Miller
A wonderful family from Brooklyn opened the Child Mind Institute's fourth annual Child Advocacy Award Dinner last night, including a lovely 6-year-old named Kailee who, until a couple of months ago, didn't speak and didn't smile outside her home. Kailee had remained anxious and silent through two years of preschool, and speech therapy didn't help. It was Dr. Steven Kurtz at the Child Mind Institute who diagnosed her selective mutism, and our Brave Buddies program that helped Kailee find her voice—a voice the audience of 800 was delighted to hear, loud and clear.
Talk show host Meredith Vieira was the host for the evening, which honored Ram Sundaram, partner at Goldman Sachs, with the Child Advocacy Award, and Dr. Pasko Rakic, director of Yale's Kavli Institute for Neuroscience, with the 2014 Distinguished Scientist Award.
Dr. Harold Koplewicz, the Child Mind Institute's president and cofounder, noted that many of the families who come to the Child Mind Institute have "gone from clinic to clinic, from doctor to doctor, from medication to medication," without getting an accurate diagnosis and effective treatment. That's why he emphasized the importance of investing in the science of brain development, specifically the Healthy Brain Network-the Child Mind Institute's initiative in large-scale collection and global sharing of brain imaging and other data from children.
Sundaram, too, stressed the importance of scientific initiatives like the Healthy Brain Network to improve on current diagnosis and treatment. And he closed with a plea for a united front to fight for the kind of national and international attention that mental illness deserves, and funding for research that would reflect the seriousness of mental illness and the toll it takes on children and families.
The evening at Cipriani 42nd Street raised $6.65 million dollars, including $850,000 at a live auction presided over by weather guru Al Roker.View Comments | Add Comment
Dan Aykroyd Says Being on the Spectrum Helped Him Make Ghostbusters
Dec. 12, 2013 Caroline Miller
Another performer is in the news for going public about autism: This time it's Dan Aykroyd—comedian, singer, actor and screenwriter, Blues Brother and, of course, Ghostbuster—who tells the Daily Mail that he was diagnosed with Asperger's in the 1980s. Aykroyd's news comes close on the heels of singer Susan Boyle and Daryl Hannah, who both revealed that they have Asperger's. But Aykroyd's story is a little different.
Both Hannah and Boyle said their autism made their careers more challenging—Hannah retreated from Hollywood because she couldn't handle the demands of doing publicity, and Boyle has struggled to control outbursts that have drawn a lot of negative attention. But Aykroyd, who said he was diagnosed when his wife urged him to see a doctor, cheerfully credited his Asperger's with being responsible for his huge hit, Ghostbusters:
One of my symptoms included my obsession with ghosts and law enforcement—I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That's when the idea of my film Ghostbusters was born.
It's not the first time Aykroyd has mentioned Asperger's—a couple of years ago in a delightful interview with NPR's Terry Gross he also cites the badge: "If I don't have a badge on me I feel naked," he says. And he notes that his obsession with police and college study of criminology also served him well when it came to writing the Blues Brothers: "They were classic recidivists, they could never stay out of trouble, always looking for it, borderline sociopathic hedonists, and I was well armed criminological terms and knowledge."
Akroyd also says in both interviews that he was diagnosed with Tourette's at 12, and had "pretty bad" physical and verbal tics that made him shy, until they were controlled with therapy and the symptoms eased a couple of years later. Hard to imagine the wild and crazy guy from Saturday Night Live ever being reluctant, but it's a story we hear all the time—kids who struggle with social limitations find acting, and humor, thrilling and liberating.View Comments | Add Comment
Susan Boyle Reveals Her Autism
Dec. 9, 2013 Beth Arky
When a decidedly unglamorous Susan Boyle stood before a skeptical Simon Cowell and a visibly twittering audience at 2009's Britain's Got Talent and sang a soaring rendition of "I Dreamed a Dream" from Les Miserables, it was a revelation that drew a wild standing ovation and kudos from all three judges.
Now comes another revelation: In an exclusive interview with England's The Observer over the weekend, the Scottish singer announced that she was diagnosed last year with Asperger's syndrome. Once again, she drew accolades, this time from an autism community ready to embrace her.
Boyle's news comes on the heels of Daryl Hannah's (Splash) reveal to People magazine that she was diagnosed with autism as a child but had hidden it from movie executives.
Fox Searchlight has announced plans to make a film about Boyle's life story with Meryl Streep possibly cast in the lead. But the 52-year-old singer's achievements have sometimes been marred by reports of public outbursts and moments of volatile behavior. She hopes the new diagnosis, which she kept secret for a year, will lead people to show greater empathy and understanding.
Asperger's is no longer a formal diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the psychiatric bible in the United States, but the term is still used widely globally and in the autism community. It's considered a less severe form of autism that compromises social interactions and would have made Boyle's sudden fame that much more difficult.
Boyle, who received the wrong diagnosis of brain damage at birth had carried the stigma throughout her life. Bullied and called "Susie Simple" as a child growing up in a small Scottish town, Boyle found out her problem was not her IQ. She always knew it was an unfair label, she says. "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
Now she understands better why she needs support, even though her IQ is above average. "I am not strong on my own," she says. "When I have the support of people around me I am fine. I have a great team."
Like Hannah, Boyle has retreated to a quieter life. She moved back from a mansion she built into the small terraced house she once shared with her mother, Bridget. She says she finds comfort there.
Boyle hopes the new diagnosis will lead to tolerance of her sometimes difficult behavior. "I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do."
Rachel Cohen-Rottenberg, who was diagnosed with Asperger's at 50 and blogs at Disability and Representation, agrees. "I love this woman," she posted on Facebook. "I'm not surprised to hear that she has Asperger's, and I'm glad she has a proper label for her neurology. I know so well the feelings of relief she expresses."View Comments | Add Comment
What the Sandy Hook Report Teaches Us
Nov. 26, 2013 Harold Koplewicz
The new report from the state's attorney on the shootings at Sandy Hook Elementary school nearly a year ago makes for very, very painful reading. The sequence of events, in just-the-facts official language, is horrifying all over again. And part of the horror is that it's so brief. As the report puts it, "In fewer than 11 minutes twenty first-grade pupils and six adults had lost their lives."
In the report, it takes longer to describe the arsenal of weapons and the number of rounds of ammunition of each type Adam Lanza had amassed than it does to describe his movements inside the building. The details of the massive police response are heartbreaking because the carnage was over in moments, before it began.
It's also very, very painful reading the details investigators were able to pull together about Lanza"s life in the months leading up to the shooting: a profoundly disturbed young man became so isolated that he not only saw no one but his mother, Nancy Lanza, but he no longer communicated with her, except by email.
Adam and Nancy Lanza lived in the same house but he didn't allow her to go into his room, and she apparently didn't—with tragic results. It is a struggle for many parents to stay close to—to really know—a teenage or adult child who guards his privacy fiercely. But this kind of secrecy should always be a red flag. And as if his deepening pathological isolation wasn't obvious enough, the report added, "The shooter's second floor bedroom windows were taped over with black trash bags."
As evidence of how little she knew him, Nancy Lanza continued to encourage her son's interest in firearms. One of the most chilling details was a check she had given Adam for a new pistol with "Christmas Day" written where the date is entered. "The mother wanted to buy the shooter a CZ-83 pistol for Christmas and had prepared a check for that purchase to give the shooter," the report said. "The mother never expressed fear of the shooter, for her own safety or that of anyone else."
Adam and Nancy Lanza needed help urgently and obviously didn't get it. I can't account for her decision to let Adam withdraw so completely and descend into his private preoccupations, but I do know that many parents with very disturbed young adult children become overwhelmed by the stigma against mental illness and the challenge of finding services for their kids, especially when they resist help.
The only way to prevent this kind of pathology from taking root is to take down the black garbage bags over the window, so to speak: to create a culture in which mental illness can be and is talked about as openly as medical illness. Nancy Lanza had friends, we understand, but didn't confide in them much about the details of her life with Adam. She seemed to have given up on the care available in her area. She was planning to set him up an RV so she could sell the house, and move them to one of several communities where she thought Adam might do better.
The report suggests that Adam's behavior had started to change around the seventh grade, when he withdrew from school activities, stopped riding his bike in the neighborhood, and started showing an obsessive interest in violent images. These are the kinds of changes we should all be alert to, as personality changes and withdrawal from previous interests are potential signs of developing mental illness. Not every seventh grader who likes to draw violent images has psychiatric problems, but every parent and teacher and school counselor who sees this behavior should take care to pay attention and get to know what they mean.
As we experience the details of that horrific day again, in new detail, it's important to focus on what we can do to insure that future Adam Lanzas aren't left in their blacked-out bedrooms. That means being the kind of people who talk openly about mental illness, and encourage others to do so. It means supporting initiatives to make care accessible in areas with few mental health resources. It means supporting training so that more pediatricians and teachers and other school staff are alert to the behaviors that are the symptoms of mental illness.
I don't think we'll ever understand why a young man would murder 20 small children and six adults who tried to protect them, and I don't think we'll ever feel "better" about it. But I do think that being proactive, focusing on what we can do to break the isolation around the mentally ill and keep weapons capable of instant carnage out of their hands, is the most healthy way to channel the pain.View Comments | Add Comment
The ADHD Lie Detector
Nov. 25, 2013 Caroline Miller
Bloomberg reports on an intriguing device that's apparently being used by an increasing number of doctors to weed out college students faking ADHD in order to score prescriptions to stimulant medications. It's called the Quotient ADHD System, and it collects data on a person's ability to "sit still, inhibit impulsivity and respond accurately to images on a computer screen." Developed at McLean Hospital, the psychiatric wing of Harvard Medical School, it uses motion detection technology, along with the patient's performance on a visual response test, to measure inattention, hyperactivity and impulsivity compared to other people of the same age and gender.
Some doctors swear by it—here's one who says it proved him wrong on several cases and here's a Time reporter who tried it—and the manufacturer claims that it's 92 percent accurate in identifying fakers. But it hasn't exactly taken the ADHD world by storm. After about 5 years on the market only about 300 are in use, according to Bloomberg.
Quotient wasn't developed, of course, to weed out students trying to score Ritalin or Adderall to boost their academic performance, but rather to improve diagnoses for the millions of children who have real problems. The goal was a test that would be less laborious and subjective than the scales now used to have parents, teachers, and children themselves measure how often they exhibit the behaviors that are symptoms of ADHD.
Those tests—like the SNAP-IV Teacher and Parent Rating Scale and the Child Behavior Checklist—are limited by the fact that answers can be skewed by preconceptions. That's why the Quotient people like to taut their test as "objective." But the bigger limitation in the use of scales is that too many doctors don't take the time to administer them, and hence too many kids are diagnosed basically by hunch—and on the hope that medication will help them do better. And when it comes to college kids, clinicians surely aren't asking for the multiple sources of information that are considered best practices when diagnosing kids.
Quotient has the appeal that it takes only about 20 minutes, and if it works to weed out the real inattention and hyperactivity from the fake, it could be useful for cutting down on abuse of the meds. But as Dr. Rachel G. Klein, professor of child and adolescent psychiatry at NYU's Langone Medical Center and a member of our Scientific Research Council, told Bloomberg, to be diagnosed with ADHD a child must show symptoms over a period of time and in several settings—not just at school, for instance, or at home. That fact that a child has symptoms of ADHD on a visit to a doctor's office isn't the basis for a sound diagnosis. We're all for developing objective tests, but the fact is that the science isn't there yet for us to make a diagnosis with a machine. Until we can, doctors should use the best evidence-based tools and the secret weapon of every good clinician: rigor.View Comments | Add Comment