The Child Mind BlogBrainstorm
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
Teaching Kids Under Stress
Nov. 15, 2013 Caroline Miller
A pair of excellent pieces in the New York Times recently highlighted the effects of mistreatment of children on their developing brains and behavior.
The bad news is that what's called "toxic stress"—frequent or continual stress on kids who lack adult protection and support—impacts the brain at the time it's developing its basic architecture. That makes kids vulnerable to anxiety and depression, as well as more physical ailments, later in life. The good news is that interventions that support kids in adverse situations, often by strengthening the role of parents and teachers in buffering stressful situations, can lower the risk of those problems developing.
For instance, programs that help parents tune in to what children are feeling and make themselves more emotionally available have shown to reduce the incidence of at-risk children acting out in school. And they also increase parental pleasure, the clinical director of one of these programs tells David Bornstein of the Times.
"There are millions of times that children are doing things that parents are missing or misreading," she adds, "and there's no joy or delight in their parenting. We want delight! Delight is protective. When a child feels loved and valued by a parent, it buffers the circumstances. We can't fix poverty but we can buffer the stresses."
There is also exciting evidence that training teachers to be more tuned in to the effects of toxic stress in children enables them to respond much more effectively to disruptive behavior in the classroom. Recognizing stress and helping kids who are overwhelmed to calm down and get mastery over their feelings reduces the kind of classroom outbursts that often end in suspension and get kids sent to the emergency room.
"Punishing children for misbehavior they don't know how to control," Bornstein writes, "is comparable to punishing a child for having a seizure; it adds to the suffering and makes matters worse." Instead, educators who are trained to recognize the effects of toxic stress understand that disruptive kids aren't necessarily being willful or defiant, and the best way to stop the behavior is to make them feel safe and help them build resilience.View Comments | Add Comment
Where are the support, concern, and homemade casseroles?
Nov. 14, 2013 Caroline Miller
Larry Lake's family has been through a lot. His wife had breast cancer. His daughter developed bipolar disorder and a drug and alcohol addiction. There was a serious car accident. Lake describes this series of events in Slate not because he wants sympathy, but to note a painfully acquired truth.
When someone in your family has a physical illness, including cancer, the outpouring of support and offers of assistance from friends is dramatic. Solicitous questions, links to stories that might offer helpful information, rides to radiation sessions, and, of course, lovingly prepared meals, more than they could possibly eat. "Leftovers piled up in the refrigerator, and soon the freezer filled up too," Lake writes, "this tsunami of food offerings an edible symbol of our community's abundant generosity."
But when the illness involved is mental, and the admission is to a psychiatric hospital or addiction treatment center, friends who are comfortable talking about cancer become speechless. The years of struggling to support their daughter through crises and rehab and relapse and more rehab were a much lonelier vigil, Lake writes, and quite without those lovingly prepared meals.
And when the family endures another crisis—another physical one—and the cards, offers of help and casseroles once again appear, it does make you want to cry for the fear and embarrassment and stigma that prevent generous people from stepping up when their friends are struggling with psychiatric and emotional problems. Do read the piece here.View Comments | Add Comment
Why Changing Autism Numbers Do Not Equal ‘Epidemic’
Nov. 12, 2013 Harry Kimball
Last week Dr. Bennett Leventhal, a psychiatrist whose considerable expertise includes the epidemiology of psychiatric illness, stopped by our office to give an overview of the state of autism spectrum disorders. Dr. Leventhal gave a wide-ranging talk on everything from causes to treatments to what's really going on with the so-called "epidemic" of new cases.
"Has the prevalence been rising?" Dr. Leventhal asked. "For sure it's been rising. When I was in training it was 4 per 10,000 live births. That's 0.04 percent. It's been going up and up and up, and in 2011 we published what I still think is the best paper on autism prevalence, which said the rate is 2.64 percent." But understanding why it's happening—and why it isn't—is a manner of soberly assessing the available information and make sure that everyone is "counting the right way."
Dr. Leventhal described the development of a standardized diagnosis in the 1970s, thanks to the advocates of the National Society of Autistic Children. In 1978, the organization developed criteria that would soon contribute to the autism diagnosis in the DSM-III, of 1980. "It's important to know how we got here," Dr. Leventhal said, "and it wasn't a bunch of smart guys sitting around—it was a bunch of moms who said, 'You scientists need to do things differently, you clinicians have to do things differently.'"
A key factor that contributed to the consistent increases in prevalence that continue to this day is education law. "This prevalence started rising in the 1970s," he said. "In 1975 Congress passed Public Law 94-142, the Education for All Handicapped Children Act, which said you can't throw kids out of school because they have a disability. And by the early 1990s the DSM-IV came out and those became the accepted criteria in schools. The vast majority of these increases in prevalence come from service data."
But there is another lesson to be had here. "The real critical point to remember is that there is a difference between prevalence and incidence. Prevalence is the number of people in the population who have a condition. And incidence is the number of new cases coming into the population. Increases in incidence represent epidemics—all of a sudden a lot of people have measles. But can you increase prevalence without having any more new cases? Absolutely, and it's really simple.
"How do you do that? The first thing is you can change the diagnostic categories," which have been getting consistently broader, said Dr. Leventhal. "You can change the way you do diagnosis, with better tools for diagnosis. You can increase awareness. And you can also find out that there were methods problems" in the past that artificially kept the prevalence down.
"The usual diagnosis of autism in the 1970s began at the age of 6 or 7 when a kid showed up in school. And then they stopped having autism at 16. Why? Because they left school and were sent to institutions or other places where they were called mentally retarded. So if you're only counting people between 6 and 16, the denominator stays the same and the numerator is small"—that is, the population at large is constant but the subset of people with autism is restricted to a strict age range. But when we understand that autism is a lifelong disorder, things change. "If you all of a sudden add kids from 2 to 6, the numerator goes up but the denominator remains the same." And if you add everyone with autism over the age of 16, "Voila," said Dr. Leventhal. "Your prevalence has risen without changing the number of people with the disorder. You're just counting everybody, and you're counting the right way."
For instance, the study Dr. Leventhal mentioned above, which returned a staggering prevalence of 2.64 percent, was what's called a full population study of Korean youth, endeavoring not to just get a representative group but to test everyone in a community. By "counting everybody," the study was able to identify a "non-clinical" population—kids who didn't have autism diagnoses, and weren't getting services—who in fact met criteria for the disorder.
Dr. Leventhal is skeptical of the concept of an autism epidemic for a similar epidemiological rationale, and the culprits are usually methods problems. These plague every area of causal inquiry, he said, from genetics to environmental to social. Counting the right way may give us a higher prevalence—but counting the wrong way creates false hopes and false fears.
Dr. Leventhal is co-chair of the Child Mind Institute's Scientific Research Council, the Irving B. Harris Professor of Child and Adolescent Psychiatry, Emeritus, at the University of Chicago, and deputy director of the Nathan S. Kline Institute for Psychiatric Research. You can watch him speak about the hurdles to good, applicable research in developmental disorders like autism here.View Comments | Add Comment
Kids Serve Up Life Lessons on 'MasterChef Junior'
Nov. 8, 2013 Jessica Kashiwabara
Anyone who hasn't been watching the first season of MasterChef Junior is missing out on some talented and inspiring kids. The aspiring chefs competing for the $100,000 prize and MasterChef Junior trophy are between the ages of 8 and 13, but the kids use the same ingredients and equipment used in the adult version of MasterChef (though most need a step stool to reach them). The challenges haven't been watered down for the kids either, including a restaurant takeover at a high-end L.A. restaurant and challenges with hard-to-cook ingredients like snails, liver, and sardines. The judges include the notoriously tough and foul-mouthed (though not in front of the kids) host Chef Gordon Ramsay. Thankfully Chef Ramsay shows his softer side on the show, acting as a mentor to the children and offering his encouragement and guidance.
The best thing about watching the show is seeing how the kids blossom with each accomplishment. They are fearless and ambitious, coming up with daring dishes that have never been voluntarily attempted by adult contestants in past shows— macaroons, soufflés, chicken roulade, and other dishes I don't even know how to pronounce. You can see their self-esteem grow and their confidence in who they are expressed through their cooking. On his way out, my favorite competitor, 10-year-old Hawaiian shirt-wearing Jack, said, "I've learned so much about cooking, become way less shy and I've made a lot of great friends."
The finale airs tonight, with the top two going head-to-head—composed and confident Dara, 12, and front-runner Alexander, 13. In the previews, the finalists are already beaming with pride in their embroidered mini chef's jackets. Whoever wins, it's clear these kids have learned a lot. As 9-year-old Sarah, a fan favorite, says, "I've proved to myself that I can do much more than I thought I could." That's a lesson we all can learn from.View Comments | Add Comment