The Child Mind BlogBrainstorm
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
Brainhack 2013 Brings Together 50 Young Scientists
Oct. 28, 2013 Michael Milham
Over the past four days, I attended a unique event in neuroscience called the Neuro Bureau's Brainhack 2013 Unconference. Now in its second year, this event was first conceived and co-organized by Cameron Craddock, Director of Imaging at the Child Mind Institute's Center for the Developing Brain. The Brainhack brought more than 50 young scientists from four continents to Paris to collaborate.
What does this mean and why is it unique? Well, as to what it means—that was really up to the participants. That's why it's called an unconference. Some scientists showed up with projects they are working on, and asked for others to lend their expertise to make their vision a reality. Others brought valuable data and asked, "What would you do with it now that you have access to it?" Others worked to come up with original ideas in the moment, as part of a 24-hour experiment initiative, where they attempted to identify a question of interest, design an experiment and execute it. This year's effort attempted to probe the brain regions that support interpretation of the famous Rorschach ink blots.
The event also featured a series of 10-minute Ignite Sessions by more senior figures in the field, and some tool makers who took the opportunity to give tutorials—whether in the form of a talk or a friendly sit down with new users.
As to why it is so unique—well, in a field that traditionally is known for working in research silos, the Brainhack explicitly fosters collaboration and sharing. Open science was on the tip of everyone's tongue as we shared ideas, approaches and data with one another, working as a collective. The challenge, of course, is how to keep this spirit going among scientists when they go home—avoiding unnecessary isolation of efforts and redundancy. In this regard, I believe events like the Brainhack will help to foster the development of a mindset in young scientists that actively works to tear down silos through usage of social networking and video technologies and build a new spirit of openness.View Comments | Add Comment
'Flipped' Classrooms Could Benefit Special-Needs Students
Oct. 25, 2013 Beth Arky
We were excited to read about "flipped" classrooms in two recent New York Times columns by Tina Rosenberg. The concept is simple: Rather than instruct students throughout the school day and expect them to put the material into practice in the form of homework, have them do the practical, hands-on work at school, under teachers' supervision and at their own pace. Then, have them pick up the concepts by watching videotaped lectures at home.
This approach, which is beginning to gain momentum around the country, allows for something parents of special-needs kids know is critical: the chance for individualized learning, based on a child's strengths and weaknesses, with added in-class support. Parents may chafe at Rosenberg's terminology—"slower" vs. "faster" learners—but the point is this: Children with diagnoses including learning disorders, ADHD and autism do absorb lessons at different rates and benefit from different learning styles to process and retain information.
The benefits don't stop there. Rather than teach a subject and then move on to another—whether or not everyone in the class has "gotten" the material—in a flipped classroom each student focuses on mastery at his own pace and advances when he is confident and ready.
Parents who feel just as burdened by homework as their children will also appreciate this style of learning, since the onus of working with kids on mastery shifts from the parent back to the teacher. Caregivers may be well advised to watch the videos along with their children so they can understand and help, but they no longer have to sit for hours prodding their struggling kids to get all the worksheets and projects done at home, during nights and weekends. The prospect of a less stressful home dynamic is something that might well have parents turning cartwheels.
Some special-needs students already benefit from aspects of this "flipped" classroom model thanks to smaller classroom settings and additional staff afforded by their Individualized Education Program (IEP) or, in some cases, homeschooling. It would be great to see this approach tested in more neighborhood schools, since it addresses the challenges of these students as well as their typically developing peers.View Comments | Add Comment
Where the System Failed Avonte Oquendo
Oct. 17, 2013 Beth Arky
As the search for Avonte Oquendo approaches week three, with police trying a new tactic—playing a recording of his mother out of emergency response vehicles in hopes the nonverbal autistic teen will hear it—questions mount over how he could have bolted from his Queens school. Meanwhile, advocates have begun searching for ways to ensure that such an incident doesn't happen again.
Avonte's brother, Daniel Oquendo—who has taken a leadership role in the search effort—met yesterday with Gary Mayerson, a Manhattan civil rights attorney concentrating on autism, to discuss the status of the investigation and security measures that should be implemented. (Autism Speaks and Mayerson & Associates have contributed toward the $70,000 reward money for Avonte's safe return.)
"I couldn't blame Daniel for being entirely absorbed in his brother's plight," Mayerson says, "but he's not. He's able to look outward to do good and protect other students going forward.
Mayerson outlines three layers of protection. First, there is the student's Individualized Education Program, or IEP. The attorney says a student like the nonverbal Avonte, a known wanderer who has been found in subway tunnels in the past, should have had goals and objectives on his IEP to deal with that issue, which would have included his own aide at the Riverview School. Instead, Avonte was placed in a classroom with one teacher, one aide, and six students. (Wandering, also called eloping or bolting, is a common autistic trait.)
The New York City Department of Education was "clearly on notice that he was a bolter," Mayerson says. "There also could have been a special alerts section saying that he has a history of bolting that is potentially dangerous or life-threatening and he probably does not understand the danger" of leaving school.
Beth Glidden Andersen, who blogs at Maternal Instincts about her 9-year-old son, Nik, who has multiple disabilities including nonverbal autism, agrees with Mayerson's assessment. She commented on Facebook that given that Avonte was known to elope, "there should have been 1:1 supervision full-time.
"There is so much we don't know about Avonte and how he, specifically, functioned in his school environment," she wrote. "My son has many of the characteristics attributed to Avonte; at school he has more independence than he would if we were out in public. But that's because his school is exclusively special-needs students and everyone knows him. They give him opportunities to develop skills in a safe environment."
Mayerson's second point: Avonte's IEP should have had a behavior intervention plan that would tell teachers what to do if he went for the door of the classroom, let alone the school building. Finally, there have to be much-improved security measures in place. "There should be protocols so that people who are leaving the building have the legitimate authority to do so," he says.
The Riverview School—a special-needs program—shares space with a middle school and a high school with typically developing students. The schools share common spaces, including auditoriums, gymnasiums, libraries, and cafeterias. It's believed that Avonte eloped while transitioning between lunch and the classroom.
Mayerson disagrees with New York City Police Commissioner Raymond Kelly's exoneration of the school safety officer who saw Avonte before he bolted. Kelly said they looked at the security videotape and "she directs the young man to go back upstairs [when] he's just at the front door. He goes down the hall and actually exits the building from a side door. You see nothing after this juncture that shows the conduct of the school safety agent was inappropriate or there was any misconduct involved."
But the Oquendo family's attorney, David Perecman, questioned why a side door would be unlocked and unguarded in a school with autistic students. Not only that, "it's an omission issue," Mayerson says. "It's what she didn't do after challenging Avonte and saying 'Where are you going?' She doesn't say, 'Wait a minute, what if this is one of those nonverbal kids?'" In other words, was it simply enough to tell Avonte to stay and to not have some one follow him back to his classroom?
Jennifer Aronson Sellar has had experience with schools like Avonte's: Her nonverbal 7-year-old son, Hugo, who has multiple disabilities including an autism diagnosis, attends such a setting in Brooklyn. She wrote on Facebook that the bigger issue of schools like Riverview is whether staff outside the special-needs program understands the kids' needs. "Very few people even know what elopement is and that this population is at risk for escape," she writes. "I doubt the guard had any knowledge or training for this particular population."
Also yesterday, advocates at a Google hangout presented by ICare4Autism (The International Center for Autism Research and Education) echoed Mayerson's thoughts. Dr. Joshua Weinstein, the founder of ICare4Autism and Hear Our Voices, a school for autistic children in Brooklyn, said his school has cameras inside and outside the building and in the classrooms, as well as "panic doors" that sound an alarm if a child runs out. He adds that there's always an instructor with each student, walking them in and out of the school, going from activity to activity, and during fire drills, lockdowns, and outings.
Weinstein advises parents to find out what the safety procedures are at their children's schools, especially if there's inclusion and a wide span of grades. If they find fault with the plan, they need to advocate for change. He adds that the public needs to be aware of autistic behavior, including wandering, and be able to respond and notify the authorities.
Stephen Mark Shore, an ICare4Autism board member and himself on the spectrum, added, "We need to educate both the individual with autism on how to be safe as well as first responders who may encounter someone with autism." Shore has helped the New York Police Department produce a training video so that first responders may better know how to interact with autistic children, teens, and adults.
He also cited the work done by Dennis Debbaudt of Autism Risk & Safety Management, which offers autism training and resources for law enforcement and emergency first responders, as well as parents, educators, and the autism community. For instance, Debbaudt has an autism emergency plan on his site to help caregivers; it also includes a contact form to get as much info possible about the bolter quickly into the hands of first responders.
All the advocates cited GPS tracking technology, including wristbands, as a key way to keep wanderers safe.
As for the 45 minutes to hour it took before the school notified Avonte's family that he was missing, Sharie Manon, director of strategic alliances for ICare4Autism, said that as a mother she'd rather be called early; if it's a false alarm, so be it. Shore added that it's worth exercising "an abundance of caution. If they find [a child] under the couch, looking for a quiet place, that's a good outcome. And in situations where the child has eloped, the earlier we can get on this, the better off everybody will be."
Avonte was last seen wearing a gray striped shirt, black jeans and black sneakers. He is 5-foot-3 and weighs 125 pounds. Anyone with information is asked to contact the Police Department's Crime Stoppers hot line at (800) 577-TIPS.View Comments | Add Comment
ADHD: Is the 'Epidemic' Caused by Changing Expectations for Kids?
Oct. 15, 2013 Caroline Miller
There's an excellent piece about the "epidemic" of ADHD diagnoses in this weekend's New York Times magazine by Maggie Koerth-Baker—excellent because Koerth-Baker does what a lot of people who express opinions and claim insight about ADHD don't seem to be able to do. She acknowledges two things that are both true about ADHD, though they are often described as if they were mutually exclusive.
The first is that ADHD is a real, biologically based disorder that is highly heritable, and its symptoms appear to be the result of a shortage of dopamine receptors that diminishes functioning in some parts of the brain. The evidence of heritability is seen in twin studies, and brain imaging shows the differences in brain function between kids with ADHD and other kids.
But her second point is that that the steep rise in diagnoses in the last few decades is nonetheless prompted by sociological factors, especially changes in schools and the expectations we have for children. A considerable number of the children who have been diagnosed may not actually have the disorder. Their attention and impulsivity problems may well be caused by other factors-things like anxiety and problems at home-that can't be identified in a seven-minute visit to the pediatrician. But that, as she puts it, "is not to say that ADHD is a made-up disorder."
Koerth-Baker writes very articulately about some of the factors that have contributed to the rise in diagnoses. One obvious one is the incorporation of ADHD under the Individuals with Disabilities Education Act in 1991, which meant that kids with the diagnosis could get help and accommodations at school. She also describes Dr. Stephen Hinshaw's research, which we wrote about in in July ("Are Schools Driving ADHD Diagnoses?"), linking high rates of ADHD diagnosis we see in some states to laws that tied school funding to student test scores. Since 2003 all states are affected by No Child Left Behind, which penalizes schools with poor test scores, but many states that have the highest rates of ADHD diagnosis, especially in the South, enacted similar "accountability" laws years earlier.
Koerth-Baker also mentions economic changes that I think don't get nearly enough attention when we talk about ADHD: The fact is that not going to college (not to speak of not graduating from high school) is less and less viable an option for our kids than it was decades ago. Good jobs—ones that pay a living wage—for what we used to call blue-collar workers are almost nonexistent in the 21st century, which means that school failure exacts a much higher toll now. I thought of these kids when I read an op ed piece by Joseph Stiglitz in the Times Sunday about income inequality. Among the statistics Stiglitz cited was that "men who graduated from high school but don't have four-year college degrees make almost 40 percent less than they did four decades ago."
We worry that kids who don't have the disorder are getting diagnosed and medicated for ADHD—but also we worry that many kids don't have families with the resources to figure out what else might be causing their problems in school. The hard fact is that doing poorly in school has become more and more damaging to a child's future, so it's no wonder that parents and doctors and teachers are anxious to do whatever they can to help kids succeed.View Comments | Add Comment
NYC Search for Missing Autistic Teen Intensifies, Along With Questions
Oct. 11, 2013 Beth Arky
In the week since autistic 14-year-old Avonte Oquendo went missing after running out of his school in Long Island City, Queens, questions have haunted his family and a worried community. Where could he be? How could he have eluded both his aide and teachers and a security guard? And why did it take school officials an hour to inform his mother that he had bolted?
David Perecman, the family's lawyer, said it appears that the nonverbal Avonte managed to leave the school during a transition between lunch and class; changes are often unsettling for those on the spectrum. The surveillance tape shows him darting down the hall and leaving the building. The family says a guard asked him where he was going and let him leave after getting no response. The school has yet to comment but is cooperating with authorities.
Wandering or bolting is a common autistic trait. Because of Avonte's intense interest in trains, police have been scouring the subways. (According to reports, he has been found in subway tunnels after running off.) But given that autistics are often drawn to water—in fact, autistic children and teens who wander are too often found drowned—they have also searched the shoreline of the nearby East River.
It has been a difficult week for the family, including a false report that Avonte had been found. His mother, Vanessa Fontaine, began sending her son to the Riverview School—a restrictive District 75 special-needs program located within a neighborhood zoned school—last month. She believed it would be "well-equipped to handle my child," including a one-to-one aide, she said in a television interview this morning. "And they failed me." She says it's too painful to watch the surveillance tape: "I break down and cry. It's the last time I'm seeing my son."
While Fontaine takes the family's plea to the media, Avonte's brother Daniel has been using social media, tweeting under @kingdetrick, and Avonte's photograph has been shared innumerable times on Facebook. Meanwhile, the family has taken steps toward a lawsuit against the city, charging negligence and failure to supervise. Other parents of special needs kids in the school system are also calling for accountability.
Kpana Kpoto, a special needs advocate at Special Needs Advocacy Navigator, raises another question. "When minorities go missing, they barely get a blurb on national television," she says. "This happens every time. What will it take to put some value on the lives of children of all races?" The city is making at least a belated effort, as subway riders will know. When is the last time we heard the conductor announce the details of a missing child over the loudspeakers? And his family has organized a band of volunteers to comb the city and hand out fliers.
Avonte was last seen wearing a gray striped shirt, black jeans and black sneakers. He is 5-foot-3 and weighs 125 pounds. Anyone with information is asked to contact the Police Department's Crime Stoppers hot line at (800) 577-TIPS. There is also a $50,000 reward. His mother says that if you see him, approach him gently so as not to send him running.
There is a vigil for Avonte planned for 5pm today outside of the Riverview School in Long Island City.View Comments | Add Comment
Temple Grandin on Focusing on Autistic Strengths, Not Deficits
Oct. 8, 2013 Rachel Ehmke
After receiving an autism diagnosis, kids typically begin a number of therapies targeted to compensating for their deficits. We know that autism responds well to early interventions, and there are a lot of them—occupational therapy, speech-language therapy, applied behavior analysis. But what often gets overlooked is expanding on an autistic child's strengths.
Temple Grandin gives a great example in a piece she wrote with science writer Richard Panek for Time. Autistic people have what's known as "weak central coherence," meaning that they pay a lot of attention to details and less attention to the big picture. As a result they are very good at embedded-figure tests. Grandin writes:
Several years ago, I took a test in which I had to look at large letters that were composed of smaller, different letters-for instance, a giant letter H that was built out of tiny F's. I then had to identify either the big letter or the little letter. I was much faster at identifying the little letters, a result that's far more common among autistics than among neurotypicals.
The test is a clear illustration of one of Grandin's natural strengths. (For the record she prefers the term "local bias" to weak central coherence.) In the essay she speculates that her ability to pick up on minutiae has given her an advantage in her work in animals. This is no small claim considering Grandin's visionary status in the field of animal science.
It would clearly be a very good thing if we could help more autistic people capitalize on their strengths. In Grandin's words, "For so many people on the spectrum, identifying their strengths can change their lives. Instead of only accommodating their deficits, they can cultivate their dreams."
Things are changing, if gradually. There is a steadily growing neurodiversity movement aimed at appreciating peoples' brain differences. Some companies are thinking outside the box, like Specialisterne, the international tech company with a 75% autistic work force. And of course we have people like Temple Grandin, who are able to bridge the gap and help us do it, too.
The essay is an excerpt adapted from Grandin and Panek's new book The Autistic Brain: Thinking Across the Spectrum, which is getting great reviews.View Comments | Add Comment
‘Ray Donovan’ Actor Dash Mihok on Tourette’s, Acting, and Control
Oct. 1, 2013 Harry Kimball
We're always happy when public figures "come out" and discuss their struggles with mental illness, because they can become positive role models for kids and because they can educate the public in a real and tangible way. Actor Dash Mihok (me-hawk), in addition to starring in movies like Baz Luhrmann's Romeo + Juliet and the current Liev Schreiber TV vehicle Ray Donovan, has been living with the motor and vocal tics of Tourette's syndrome since he was 6 years old. In a very nice piece on CNN, Mihok describes the work he does with an anti-bullying organization called Jayden's Challenge, talking to kids in schools about tolerance and the neurological differences that can make children targets.
Mihok also offers an illuminating take on living—and making it in Hollywood—with a disorder that too few comprehend, and many misunderstand wildly. Paradoxically, his success at acting has made people skeptical of his disorder, given that he can control his ticing when on set. "People believe that if you can shut your Tourette's off for a period of time," he tells CNN, "then you can always shut it off." Instead, he suggests people imagine "the greatest itch you've ever had and multiply that by a thousand. There's no way you can't scratch it. It's impossible. You have to do it."
Dr. Jerry Bubrick, an expert on tics, Tourette's, and OCD at the Child Mind Institute, agrees with this description and thinks it's an important starting point for better understanding Tourette's. "In most cases of tic disorders people have what's called the premonitory urge," he says. "The best way to understand it for everybody else is the feeling you get in your nose right before a sneeze, and the only way to get rid of it is to sneeze. So people with a tic disorder will have that internal discomfort or itchiness or weird sensation and doing the tic alleviates that feeling."
This leads to the misunderstanding that Mihok describes. "It's not really an involuntary action, although it can be so automatic that it seems involuntary," Dr. Bubrick continues. "But it's actually a voluntary act." This means that people with Tourette's can "recognize that they have to do the tic, and not do the tic, and stop in on their own. But it builds and builds and builds. It's not like if you don't do it once it's gone forever."
Dr. Bubrick is also excited about Mihok's potential to change attitudes because his disorder is clearly with him—the CNN report includes video of him ticing and discussing Tourette's when he was 10, and also candid contemporary video of him ticing in between takes on set. People can be skeptical "when a celebrity says they had a disorder growing up," he says, and wonder "whether it's for real. But here we have the videotape."
For his part, Mihok wants people to understand that Tourette's can be a barrier—he hid it from Hollywood for years out of fear that it would lose him parts, and many children with the disorder are tormented by bullies—but only if people don't understand it. Dr. Bubrick has seen the troubles firsthand. "There's a lot of bullying associated with it because it's so visual, so obvious," he says. Mihok's visibility and success are one way to make people rethink their attitudes. His message is another: "I'm just like you, just a little bit different," he says in the video. "And you're a little bit different from me, and I have nothing but love for you."View Comments | Add Comment