The Child Mind BlogBrainstorm
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
'Talk Therapy' Takes on New Meaning
April 12, 2013 Beth Arky
I come from a family of talkers, so it was only natural that I would be the mom who couldn't resist providing a running narrative as I wheeled my son around the neighborhood in his stroller: "Look at the daffodils, buddy. Hey, there's a Lab!"
I didn't take all that random (and often ridiculed) kind of talk too seriously, but more and more, policy makers are doing just that. In "The Power of Talking to Your Baby," Tina Rosenberg notes that there's a huge disparity as to how much language children hear, and studies show that it divides along socioeconomics lines, with parents in welfare families speaking to their children dramatically less than their working- and middle-class counterparts. The low-income children's language deficit is already apparent at 1; by 3, the gap has grown exponentially, creating lags in language, understanding and learning. By high school, Rosenberg writes, "it becomes a chasm."
Research shows, Rosenberg notes in her piece in the Opinionator section of the New York Times, that "the greater the number of words children heard from their parents or caregivers before they were 3, the higher their IQ and the better they did in school." TV talk did not help; it hurt.
Providence, R.I., will soon be launching the first major experiment to see if increasing language exposure at home helps poor kids succeed in the classroom. Last month, it beat out 300 other cities to win the $5 million grand prize in Bloomberg Philanthropies' Mayors Challenge. The Providence Talks program will train a network of nurses, mentors, therapists and social workers who regularly make home visits to pregnant women, new parents and children to provide a new service: creating family conversation.
While we know that wealthier, more educated parents talk to their children more, there was no clear reason why, at least until researcher Meredith Rowe arrived at a new theory in 2008: that poor women just didn't know it was important to talk to their babies. Rosenberg writes:
No one had told them about this piece of child development research. Poorer mothers tend to depend on friends and relatives for parenting advice, who may not be up on the latest data. Middle-class mothers, on the other hand, get at least some of their parenting information from books, the Internet and pediatricians. Talking to baby has become part of middle-class culture; it seems like instinct, but it's not.
Providence plans to begin enrolling families next January. If the effort to teach parents to speak more to their young children proves successful, it could provide an exciting model that could be implemented elsewhere comparatively easily, at a low cost. No one expects an even playing field in our society of ever-widening class differences, but we should be doing all we can to close the educational gap. So if it turns out that talking—not silence—is golden, I'm more than fine with that.View Comments | Add Comment
ADHD Affects Girls, Too
April 9, 2013 Rachel Ehmke
Stories about overdiagnosis and over-pathologizing are popular these days, in part because the new DSM is coming out next month. But very little ink is spilled on the people who don't get a diagnosis when they should, or only receive one later in life, after years of living with their symptoms. Maria Yagoda, who was diagnosed with ADHD in college, is one such person, and she writes in the Atlantic Wire that her story is a familiar one—especially if you're a girl.
ADHD is something of a guy's club. When we think of ADHD we tend to think of boys who are hyperactive and impulsive, but the disorder actually comes in several forms. Some kids are more hyperactive, others are more inattentive, and many have a combination of the two. In general girls are more likely to have the inattentive type of ADHD, which means that they are regularly overlooked because their symptoms don't match our idea of what ADHD "should" look like. Dr. Ellen Littman, who wrote Understanding Girls with ADHD and spoke to Yagoda for her piece, estimates that a shocking half to three-quarters of all women with ADHD are not diagnosed. Dr. Littman suggests that part of the reason girls are underrepresented now is because boys were so overrepresented in the early clinical studies of ADHD, which were based on the symptoms of "really hyperactive young white boys who were being taken to clinics." Girls' symptoms also tend to tend to peak in puberty, which means that symptoms that might not have been impairing functioning in grade school (when most boys are getting their diagnoses) suddenly become a problem.
Because the signs of ADHD are more self-contained in girls, their symptoms are often considered traits or personal failings, as Yagoda considered her own extreme disorganization, forgetfulness, and poor concentration. She managed to get by until college, when she went off the rails:
I was wrongfully allowed a room of my own, leaving me with no mother to check up on "that space between your bed and the wall," where moldy teacups, money, and important documents would lie dormant. I maintained a room so cluttered that fire inspectors not only threatened to fine me 200 dollars if I didn't clean, they insisted it was the messiest room they had ever seen (boys' included!) in their twenty years of service. Throughout college, I would lose my ID and keys about five times a semester. I'd consistently show up for work three hours early or three hours late. I once misplaced my cellphone only to find it, weeks later, in a shoe.
As Yagoda later learned, this is common theme. Sari Solden, author of Women and Attention Deficit Disorder, says:
Often, if girls are smart or in supportive homes, symptoms are masked. Because they're not hyperactive or causing trouble for other people, they're usually not diagnosed until they hit a wall, often at college, marriage, or pregnancy. A lot of the things that are simple and routine to other people—like buying groceries, making dinner, keeping track of possessions, and responding to emails—do not become automatic to these women, which can be embarrassing and exhausting.
Happily, Yagoda says that medication is now giving her a "more normal, settled life," which is another thing that makes her firsthand account so interesting. Not only is she a girl writing about her own experience with ADHD, she's also just plain writing about what it's like to have ADHD. We're used to hearing that ADHD isn't real, or that ADHD medications are academic steroids used for getting kids into the Ivy League and then law school. It's almost a novelty for the public to have a window into the disorder as it actually is, and see medication as it is actually prescribed and used. As a girl diagnosed with ADHD as an adult, Yagoda had to deal with a lot of preconceptions:
"Of course you don't have ADHD. You're smart," a friend told me, definitively, before switching to the far more compelling topic: medication. "So are you going to take Adderall and become super skinny?" "Are you going to sell it?" "Are you going to snort it?"
Yagoda, who was prescribed Concerta, was able to say no to all of the above. It's a refreshing counterpoint to the story you thought you knew.View Comments | Add Comment
A Sandy Hook Mom Talks About Stigma
April 8, 2013 Caroline Miller
Parents who lost children in the Sandy Hook shootings were, not surprisingly, a bit hard to watch on 60 Minutes last night, as they struggled with tears and tried to use their loss to achieve some meaningful change. Mostly they were there to support gun control legislation, including universal background checks and limits on the size of magazines for automatic weapons. But one mother, whose 6-year-old daughter Ana was gunned down, also zeroed in eloquently on the lapses in our mental health care system.
Nelba Marquez-Greene, who said she is a licensed marriage and family therapist, noted that the United States lags on the resources for psychiatric illness, compared to other countries where she has practiced. But then she added:
I think one of the barriers or one of the challenges is that there's a whole lotta stigma attached to getting help. The fact that you have to go to a therapist or a psychiatrist or a psychologist, and then get a diagnosis for your child, that can be very humbling and scary for parents. I can't speak specifically for what happened with Adam Lanza and his family. As a mother, my heart breaks for Adam Lanza's mother.
It's often lack of resources that keeps kids from getting care, but it's also often lack of connection and support. Nancy Lanza seems to have struggled for years to get her son into a setting that would enable him to thrive, but the two of them ended up appallingly isolated. And the consequences were tragic, for them and Lanza's victims.View Comments | Add Comment
Are there more child psychiatrists or taxidermists in the US?
April 8, 2013 Caroline Miller
Okay, it's probably not a question you contemplate every day (unless, that is, you live in Brooklyn, which is a hotbed of hipster taxidermy these days). But it's one way to put in perspective the dramatic barriers we face to getting all kids who are struggling with psychiatric disorders the care they need to reach their potential. And if you take our Children's Mental Health Quiz you'll find out the answer, along with some other rather surprising comparisons. Everyone who takes the quiz earns us $1, thanks to our friends at Hunter Boot, to help us help more families in need.View Comments | Add Comment
Cheers for White House BRAIN Initiative
April 3, 2013 Michael Milham, MD, PHD
Yesterday, the Obama administration announced plans for a landmark initiative dedicated to transforming our understanding of the human brain. Referred to as the BRAIN initiative (Brain Research through Advancing Innovative Neurotechnology), the overarching goal of this effort is to discover "new ways to treat, prevent, and cure brain disorders", such as autism, dyslexia, attention deficit hyperactivity disorder and depression. Yesterday's launch was marked by an initial White House pledge of $100 million in 2014 funding for research by the National Institutes of Health (NIH), the Defense Advanced Research Projects Agency (DARPA), and the National Science Foundation (NSF). This announcement comes as a breath of fresh air in a time when neuroscientific and technological breakthroughs are increasingly being tempered by budgetary realities and funding cuts.
The Child Mind Institute has championed the acceleration of scientific discovery through innovation and collaboration, and applauds the BRAIN initiative. It is our hope that investigators funded through the initiative will embrace the emerging open science philosophy in the neuroscience community, and freely share novel data and methodologies with the broader scientific community. For its part, the CMI will continue its efforts to generate and share large-scale brain imaging datasets through CMI-sponsored efforts such as the 1000 Functional Connectomes Project and International Neuroimaging Data-sharing Initiative (INDI), as well as the upcoming CMI Biobank. It is our hope that data generated through these efforts will help to facilitate and accelerate the efforts of BRAIN initiative investigators, as they speed towards the delivery of biologically-based solutions to mental illness.View Comments | Add Comment
April Autism Events Reflect Spectrum’s Diversity
April 2, 2013 Beth Arky
As the sixth Autism Awareness Month—and third Autism Acceptance Month—kicks off, it's clear once again that advocacy efforts are as diverse as the challenges faced by those on the spectrum. The children, teens and adults included in these campaigns range from autistics who are nonverbal and unable to care for themselves to Aspies who are not only loquacious but eager to speak out about autistic identity.
While parent-founded Autism Speaks launched its Awareness Month to increase visibility of the disorder, most literally through its Light It Up Blue campaign, autistic adult Paula C. Durbin-Westby started the Acceptance Month to "Take Back April!" from Autism Speaks and foster "complete acceptance," which she defines as "pro-neurodiversity, pro-supports and services, against 'cures.' "
Released just in time for both months comes Chicken Soup for the Soul: Raising Kids on the Autism Spectrum, which features 101 short essays by mothers and fathers with children of all ages and levels of disability. It offers support, advice and hope, along with the message to parents that they are not alone.
The book opens with "This Is What It's Like" by Leigh Merryday (Flappiness Is), who has two young children, a typically developing daughter and autistic son. She writes that when she first heard her son's ASD diagnosis, she experienced "a kind of death" as she mourned the loss of dreams for her child—a common sentiment among parents. But she now possesses "a love that you can't imagine if you don't have a child born with a bulls-eye in a big, bad world."
In "Lost," Jennifer Bush (Anybody Want a Peanut?) shares a story that underscores why family life on the spectrum is often described as an emotional roller coaster. When her nonverbal son doesn't emerge from school during pickup, she fears he is in danger and thinks she will "never take another moment for granted, no matter how challenging his behavior." (It turned out he had slipped into a classroom.) But an hour later, when he's running "maniacally around the house, screeching and crashing into walls" and hitting and scratching her, she finds herself "red-faced and bursting with rage." She writes, "We parents of special-needs kids face overwhelming joy and sadness, intense love and frustration, breathtaking wonder and fear, often in the course of a single day.... We are given so much reason to be hopeless, and yet, sometimes hope alone propels us forward."
Karen Krejcha offers her poem, "Autism Does Not Define Me," which she wrote in support of her two ASD sons, only to realize later that she was an undiagnosed Aspie herself. Given the genetic link, more parents are making this self-discovery. Krejcha blogs at Aspierations and is president and executive director of Autism Empowerment, the nonprofit advocacy group she founded.View Comments | Add Comment
Over at Thinking Person's Guide to Autism, the editors are soliciting posts and captioned photos that will help "spread the word and further acceptance and understanding of autistic experiences, happiness, and rights." Meanwhile, the Autistic Self-Advocacy Network is offering to help activists and community members nationwide organize local celebrations. The Autism Science Foundation is likewise looking to move beyond awareness, with a Pinterest board devoted to its Autism Action Month Activities, including recommended books, blogs and apps, as well as events like today's World Autism Awareness Day at the UN.
'Disconnect': More Communication, Less Intimacy
April 1, 2013 Alan Ravitz
Disconnect, a film directed by Henry Alex Rubin and written by Andrew Stern, is incredibly timely, focusing on the way contemporary lives intersect digitally but never quite connect in the real world. It's a film about interpersonal intimacy, or the lack thereof, in an age of deceptively easy communication, a world in which we can hide in the noise we create. This isn't an easy movie, but it's well worth watching. You're not going to walk away "feeling good," as they say, but you will walk away feeling something.
Disconnect tells three intersecting stories. It is an ensemble drama like Shortcuts, Magnolia or Crash, but to simply call it a movie about intersecting lives ignores its deeper ambitions. It's a film about attachment, about the strategies we use to connect with each other, about why we choose these strategies, and about why they succeed or, more often, fail. In its focus on these issues, Disconnect most reminded me of Francis Ford Coppola's 1974 masterpiece, The Conversation, another story about the how and why of intimacy. In that film each of the characters is intensely private. No one tells anyone anything because they all have something to hide. Forty years later, in Disconnect, the characters are intensely public. Everyone seems to tell everybody everything, but somehow no one finds a way to connect because — surprise—they all still have something to hide. The first movie is about the way we conceal who we are in silence, and the second is about the way we conceal ourselves in noise. Both address the lies we tell, to ourselves and others, to build and sustain relationships.
Each of the characters in Disconnect is lonely. Some are lonely because they're narcissistic, others because they're injured, or depressed, or rejected. The narcissists don't know they need anyone until it's too late; the rest just aren't strong enough to assert their needs. But it turns out that everyone wants to make a connection. This is an inherent human quality, something we take for granted. The film addresses how we communicate this need, the codes we use, the information we protect. It's about the relationship between communication, intimacy, and our desperation to make a connection.
People don't just want to be loved. They want to be loved for who they really are. They want real relationships, to be seen and loved. In Disconnect, relationships begin technologically, with words typed on a screen. The characters can be who they want to be; they don't have to worry about being seen, so they don't have to worry about being loved. The Internet provides them with a safe space to explore intimacy. And these relationships are gratifying, but only to a certain point. When the characters take the next step, a real face-to-face connection, more often than not the relationships turn out to be disappointing. They were perfect when each person could pretend to be what the other hoped for. It's easy to promise to fulfill another's needs, but in real life this is much harder to do. Every relationship is a compromise. Nothing is free. Nothing is perfect. We all have to settle for less than what we want.
Disconnect is an excellent film, serious in intent, original in its narrative exposition—and its subject, need and intimacy, is compelling because it is so universal. This movie is about all of us.View Comments | Add Comment