The Child Mind BlogBrainstorm
Asperger's: Out of DSM but Still in the Brain?
Aug. 6, 2013 Harry Kimball
The DSM-5 may have done away with the diagnosis of Asperger's syndrome—as distinct from autism—but the conversation (fracas is often a better word) over how to and whether we should differentiate low- and high-functioning autism continues. The latest item to address this thorny issue is a study out of Boston Children's Hospital that aimed to uncover physical brain differences between Asperger's children and children with the wider autism spectrum disorder diagnosis using electroencephalography, or EEG. The results are...mixed.
Lead researcher Frank Duffy had already, in a previous study, determined that EEG could differentiate pretty well between kids with autism diagnoses and a typically developing control group. He did this by attaching those familiar EEG electrodes to their scalps and recording the electrical impulses the brain uses to communicate with itself. This paints a picture of connectivity between brain regions—and allows researchers to differentiate between stronger or weaker connections. Using some sophisticated data analysis tools, they were able to show that most kids with autism have similar differences in connectivity when compared to the control group. That is, properly interpreted EEG data agreed with clinical diagnosis.
Now, to the current study: Let's say that Duffy's earlier work showed EEG could reliably differentiate between apples (kids with autism spectrum disorders) and oranges (typically developing kids). The new study reaches two conclusions that fall neatly on either side of the Asperger's debate. First, in the new study Duffy distinguished three groups of kids: those with Asperger's, those with autism, and those who were typically developing. Duffy found that, physiologically, Asperger's and other forms of autism are much more like each other than they are like the control group. Apples were still grouped with apples, oranges with oranges.
But! Duffy's second discovery is that if you compare kids with Asperger's and other kids on the autism spectrum, EEG can reliably differentiate them based on brain connectivity. There are brain differences that support the (now passé) clinical separation between Asperger's and autism. So the study shows that Asperger's is on the autism spectrum, but also distinct—they're both still apples, but Asperger's is a Red Delicious and autism is Granny Smith.
I detect in Duffy's paper where his affections lie, and it isn't a far-fetched position for anyone who has experience with the incredibly wide range of the autism spectrum. "Although the findings above in many ways agree with the DSM-5 placement of [Asperger's disorder] within the broad autistic spectrum," the study authors write, "they also demonstrate that patients with Asperger's can be physiologically distinguished from those with ASD. Recognition of Asperger's as a separate entity is important from the patients' perspectives of obtaining appropriate medical and educational services as well as of establishing a personal identity."
In other words, though the diagnosis has changed, the kids are the same, and need the same personalized supports. This is true whether a child has limited communication and self-injurious behaviors or is highly verbal, intelligent, and socially awkward to the point of impairment. The results of this study could lead to new tools for diagnosis, prognosis, and monitoring of treatment efficacy. But in the meantime, it helps to remember what I've been told by every experienced autism clinician I have spoken with. "You've seen one child with autism," the saying goes, "and you've seen one child with autism."View Comments | Add Comment
Kicking OCD's Butt at the International OCD Foundation Conference
Aug. 6, 2013 Rachel Ehmke
The International OCD Foundation's annual conference is different from other conferences. Instead of just convening professionals, the IOCDF conference includes people with OCD. A large portion of their programming is aimed at people personally impacted by the disorder—kids and adults with OCD as well as parents, spouses, and siblings. This is because the association includes nonprofessionals in its membership, which gives a unique immediacy to the work being done there.
A team from the Child Mind Institute attending this year's conference seized the opportunity to run a workshop for kids with OCD called A Weekend Adventure of Kicking OCD's Butt! Led by Dr. Jerry Bubrick and Dr. Rachel Busman, the team provided what's known as exposure and response prevention—a cognitive behavioral therapy used for treating OCD—to over 30 children over the course of two days. The conference was in Atlanta, but the kids participating came from all across the country—from Seattle to New Jersey, Florida to California. What's more, the kids came with a wide range of experiences with cognitive behavior therapy. Some kids had never received CBT, some received regular CBT back home, others were used to driving several hours for treatment because there aren't any providers near them—an all too familiar story. There was a range of ages in attendance, too—from 9 to 15 years old—but the kids were able to build a supportive community, which is important for the kind of therapy they were doing.
Exposure therapy works by gradually exposing people to things they are afraid of, with the idea that our anxiety over something diminishes the more we become accustomed to it. With the help of CMI staff Marc Shuldiner, Jessica Meister, Erika Rooney, Naomi Reyfield, and Julia Brilliante, the kids performed what's known as "exposures." Some kids at the workshop were afraid of germs, so they'd practice handling money, sitting on the hotel conference room floor, and not washing their hands. Some kids with obsessions over symmetry or making things "just right" practiced not correcting mistakes, wearing twisted socks, or putting shirts on backwards. Kids who were afraid of heights took rides in the hotel's big glass elevator with Dr. Bubrick. One boy who was very troubled by aggressive thoughts that he couldn't control practiced holding a plastic knife to a clinician's arm.
The idea of doing something you're afraid of in a room full of strangers sounds tough, but in this case it might have actually been an advantage. At the beginning of the workshop the team from the Child Mind Institute spent time explaining what OCD is and what symptoms might look like. "We saw a lot of head nodding," said Dr. Busman. "Kids would call out, 'Oh, I used to do that.'" Some kids remembered each other from attending past conferences, but others got to know each other quickly, bonding over shared experiences. The boy who was disturbed by his aggressive thoughts told the group that just admitting that he had these fears was an exposure on its own, but his peers were in a unique position to understand what he was going through, which helped destigmatize his confession.
The kids also understood how to help each other during exposures. One of the hardest concepts for parents of children with OCD to grasp is how to provide comfort without giving reassurance, which can actually exacerbate a child's anxiety. During one difficult exposure, Dr. Busman remembered one boy who recognized the dilemma telling her, "I want to say something supportive, but I don't want to be reassuring."
Parents didn't participate in the workshop directly. Some watched from the sidelines, but many attended parent-targeted talks happening elsewhere at the conference. Instead, the kids worked through their exposures together, and everyone made progress. "It was very challenging and very cool," said Dr. Busman.
The workshop was a mini version of Fearless Friends, the Child Mind Institute's intensive weeklong treatment program for kids with OCD and specific phobias that starts again August 19th. The Child Mind Institute also hopes to do another workshop for next year's IOCDF conference in Los Angeles.View Comments | Add Comment
Liza Long's Son Talks About His Mental Illness
Aug. 5, 2013 Caroline Miller
Liza Long, best known as the woman who wrote "I am Adam Lanza's mother" in the wake of the Newtown school shootings, was criticized at the time for exposing her son to public scrutiny, though she changed his name. She wrote that he had frightening rages: "A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books."
Now Long has recorded an irresistible interview with Michael on StoryCorps in which the 13-year-old talks about the outburst she wrote about. He says his memory of the knife-wielding incident is a little blurry, but her description was pretty much accurate. "I didn't want to do it, but I didn't have control," he says.
You can read about the interview on the NPR site, but it's better to listen to his voice, which reminds you just how young 13 years old is. "It almost feels like there's some extraterrestrial being taking control of me," Michael says, "and making me do all these crazy things."
He says he doesn't mean to blow up the way he does. "I actually don't like it. And yet there's not really anything I can do about it." He worries that what he calls his "stupid rages" make him "unlikable."
He adds, poignantly, that "people can't actually understand what mental illness is if they don't either have a mental illness or have lived and been with someone who does."
Michael describes having a string of diagnoses—bipolar disorder, ADHD, intermittent explosive disorder, oppositional defiant disorder—and says what he'd really like is a treatment that cures him of the mental illness, rather than just helping with symptoms.
In the meantime he says he gets pleasure from reading and writing—he's up to 47,000 words on his novel, The Demi-Gods From Outer Space. "It's a mix between sci-fi and mythology," he says.
"Wow," says his mom. "Well, thank you. I really appreciate you taking time to talk to me." We appreciate it, too.View Comments | Add Comment
Our Wishes for the Royal Baby
July 23, 2013 Caroline Miller
I can't resist a baby, royal or otherwise, so count me in with the millions worldwide who were pleased by the news of the birth of the young prince yesterday.
Ever since Kate Middleton's pregnancy was announced, the prospect of a new heir to the throne has worked as a nice antidepressant for Britons laid low by the prolonged recession there and the austerity prescribed to cure it. The royal birth also promises, pundits tell us, to act as a stimulant to the lagging British economy, though I'm not sure how that works. How many commemorative baby spoons, HRH onesies, and Union Jack booties can the populace really buy?
As for the unnamed prince—as of this writing, psychics say he'll be George but bookmakers are favoring Henry—what we wish for him is a happy childhood in the most ordinary sense: loving parents with a good relationship, high but realistic expectations, and protection from the intrusive press.
For the rest of us, Kate and Wills and their son offer some of the magic of the young Charles and Diana-fairy tale royalty with a modern twist. Like Diana, Kate is a commoner with a radiant smile. The text alert I got on my phone about the birth yesterday described the new baby as "descended from kings and coal miners."
Unfortunately, the marriage of Charles and Diana was modern in the worst way, with betrayals and counter-betrayals, psychic warfare dissected in painful detail by a rabid tabloid press. Long before Diana died, the royal fantasy had been thoroughly bloodied, and we felt sorry that her lovely boys could hardly avoid hearing constantly about the mess of their parents' marriage.
So we hope the Duke and Duchess of Cambridge take greater pleasure in each other's company, and are able to form a strong and loving relationship that will give their children an emotionally rich upbringing. It's the best gift any child could get.View Comments | Add Comment
Outrage and Apology Over Rap Lyrics
July 22, 2013 Caroline Miller
Over the weekend, the autism community responded with outrage to some offensive lyrics from hip-hop artists Drake and J. Cole—and drew a surprisingly swift and effusive apology from Cole. The lyrics involved were the use of "autistic" and "retarded" as a putdown, in the recently released track "Jodeci Freestyle," as in, "I'm artistic, you niggas is autistic, retarded."
This backlash-and-apology were particularly interesting in the context of the song itself, which manages to call women "hoes," sluts, bitches and freaks, among other things, and ends practically every sentence with "niggas," which lots of news sites feel the need to reproduce as "n---as."
While a lot of us feel outrage fatigue when it comes to hip hop lyrics, autism bloggers and advocates have been using this sort of off-handed insult effectively as a rallying cry and teachable moment. And this time Cole decided to take instruction. "Last week, when I first saw a comment from someone outraged about the lyric, I realized right away that what I said was wrong," he wrote. "I was instantly embarrassed that I would be ignorant enough say something so hurtful."
There is no way to know whether Cole was suddenly schooled by the blogger attacks or the petition to boycott the two rappers or the fact that, as Rolling Stone reminds us, both Lil Wayne and Rick Ross lost endorsement deals recently because of offensive lyrics—Lil Wayne's about Emmett Till, and Ross's appearing to condone date rape. Or perhaps it was all of the above. As a commenter on Cole's web site said, defending him from the charge of acting ignorantly: "J. Cole graduated Magna Cum Laude from St. Johns University, with a degree in communications."
Whatever it is, we can't disagree with this comment, from his apology:
To the parents who are fighting through the frustrations that must come with raising a child with severe autism, finding strength and patience that they never knew they had; to the college student with Asperger's syndrome; to all those overcoming autism. You deserve medals, not disrespect.
I know some activists won't like the part about "overcoming autism," but you have to like the part about medals, not disrespect. Hopefully Cole remembers: Word is bond.View Comments | Add Comment
Brainwave Test for ADHD Skips the Science
July 22, 2013 Harry Kimball
Last week we heard news that the FDA has approved the use of a medical device to aid in the diagnosis of ADHD, based on the electroencephalogram, or EEG—electrodes placed at different points around the scalp to measure the electrical activity in your brain. In theory, this sort of innovation is exciting—the practical application of advances in neuroscience that show us that real brain differences underlie psychiatric disorders. These illnesses are now diagnosed by so-called "subjective" means: clinical interviews, rating scales, observation. The objective "blood test"—or in this case "brainwave test"—for ADHD or depression or autism is in many corners the Holy Grail of psychiatric research.
But even those who search for that prize acknowledge that we aren't there yet, and experts are skeptical of the device's readiness for primetime. The company who makes it contends that it helped clinicians make a better diagnosis than they would have without it, but doesn't offer any data on that claim. And EEG researchers aren't confident in the technique's accuracy without larger studies and more data. (Dr. Michael Milham, director of the Center for the Developing Brain at the Child Mind Institute, points to a recent study which concludes that the EEG method used by the device does not have diagnostic value in ADHD patients.) Finally, there is the question of exactly what the device measures. If at best the test replicates the observations of a trained clinician, it could simply be identifying symptoms—symptoms that can indicate a variety of disorders, and require the interpretation of a trained clinician. "What's the point?" one ADHD expert asks The New York Times.
But it got FDA approval! That's not as hard as people think, says Dr. Milham, particularly with a passive, non-invasive technique. The fact is that the FDA weighs a drug or a device's benefit against its risk. In this case, it seems by many accounts that the agency was convinced there wasn't any reason not to approve it. But that doesn't mean it's the answer, though we hope that one day EEG and other technologies like MRI and genotyping can be fully leveraged to get the best care to kids who need it.View Comments | Add Comment
Summer Scribblers Intensive Writing Intervention Is a Hit
July 20, 2013 Harry Kimball
Recently the Child Mind Institute held our first ever session of Summer Scribblers, an intensive writing intervention designed to help struggling kids improve everything from individual word choice and usage to the overarching logic of paragraph construction. All 9 attendees—kids from fourth to eight grade—improved over the week. But what is perhaps more telling is that both they and their parents reported that they were ready to continue honing their skills at home and at school. And that's the sort of impact we like to make.
Summer Scribblers is the brainchild of Dominick Auciello, PsyD, of the Child Mind Institute's Learning and Development Center. Similar to our other intensive programs, Dr. Auciello took a proven intervention—in this case the University of Kansas' Learning Strategies Curriculum—and tried to see if he could condense an intermittent months-long approach into an intensive one without losing effectiveness. The weeklkong program is supported by booster sessions later in the summer, and perhaps through the school year. Everyone seems to agree that we're on the right track.
But intensive doesn't mean exhausting, Child Mind Institute neuropsychologist Ken Schuster told me. In order that the students not get tired or frustrated by "pounding away at paragraphs," Dr. Schuster said, the week was broken up with field trips. These offered a breather, sure, but also allowed instructors to reinforce the writing lessons in conversation and provided the students material for when they had to put pen to paper again.
"All the students made progress from their initial baseline-writing sample," says Dr. Auciello. And there was also some defying of expectations. "Some parents expressed surprise that children who are typically very resistant to writing attended so willingly, at how much they enjoyed it, and at how readily they engaged in a boat-load of writing during that week." We can't wait to hear how the first Summer Scribblers class greets the new school year. Based on the week's experiences, the sky's the limit.View Comments | Add Comment
July 16, 2013 Rachel Ehmke
Spreadsheets are increasingly a part of many people's jobs, but do they need to be part of parenting, too? Amy Webb, a digital strategist (I don't know what this is) and bestselling author, thinks so. Her attitude isn't that surprising, since the book she became famous for, Data, A Love Story, is about how she harnessed data to "game" online dating sites and meet her husband. You might also remember her from her Slate piece (an excerpt from the book) in which she came up with a (color-coded) 72-point list of qualities she deemed necessary in a future mate. People either love her or love to be horrified by her, although she might be losing people with this latest Slate story, about "data-driven parenting."
First an explanation of what data-driven parenting means. Webb was anxious about being at "advanced maternal age" with the birth of her first child (another thing trending) so at 16 weeks she began tracking how much water she drank, how many milligrams of DHA she consumed, and how much she weighed every day of her pregnancy. After giving birth, a pediatrician told her to start measuring how much the baby was eating because she wasn't gaining enough weight. Webb expanded on this advice and began a spreadsheet that also recorded detailed descriptions of dirty diapers and her daughter's sleep habits, noting any potentially interfering factors, like air conditioning and church bells.
They also measured how attentive the newborn was to readings from The New Yorker, Popular Mechanics, and board books they'd "received as gifts" (do we need to justify reading children's books to children?), factoring in the time of day and picture vs. word quotient. As their daughter got older, they began recording advances in vocabulary ("Dec. 10, 'ga' and 'mmm' sounds consistently") and, of course, new foods. The result is a kind of baby book on steroids, and Webb's been keeping it up for several years now.
They use their data to inform their parenting decisions, Webb says. "It occurred to us that while our baby daughter couldn't communicate directly beyond crying, we could have a deeply intimate, beneficial conversation with her through data. We realized that we could quantify and study her in an attempt to optimize all of her development."
Now, I don't want to get too down on this. Clearly she cares about her child and they are trying hard to be good parents. But her data collection does make me, and a lot of Internet commenters, uncomfortable. For one thing, having an "intimate, beneficial conversation" through data sounds like the kind of thing Google, Amazon, and everyone else would say to justify their constant surveillance. Shouldn't our parents, at least, be counted on to not turn us into a collection of data points? Also, at what point is she going to stop? The aloof teenage years are going to be tough on data.
But mostly I'm disturbed because these spreadsheets seem to be less about finding a way to bond with their child and more about "optimizing" her. It's very descriptive of the kind of hyperfocus that makes parents start stressing and strategizing over the Harvard application before their kids even know how to tie a shoe. This is a woman trying to build an SAT vocabulary, not coo over pictures of a Very Hungry Caterpillar. Which isn't the worst thing. They're still bonding, whatever she's reading, and it is good for kids to hear lots of new words. But what happens when the child declines to be "optimized," as children are so wont to do?
At least when she was using algorithms to meet her future husband, Webb had a goal with a clear end in sight. Now Webb's goal is her child's life, and that narrative is going to be a lot more complicated.View Comments | Add Comment
Ratings Over Science: Jenny McCarthy on 'The View'
July 16, 2013 Caroline Miller
Science took a hit yesterday when ABC named Jenny McCarthy to be one of the co-hosts of The View. Of course, daytime talk shows court controversy, as well as telegentic blonde former models, but giving the celebrity spokesperson for the anti-vaccine movement a place at the table is a very disturbing move.
You may dismiss the show, as many do, as silly talk, but a good deal of that talk is about politics and serious issues—not to mention serious guests who include sitting presidents and their wives. So it was fairly stunning to hear Barbara Walters, in announcing the hire, describe McCarthy this way: "Jenny brings us intelligence as well as warmth and humor. She can be serious and outrageous. She has connected with our audience and offers a fresh point of view."
A "fresh point of view" is a shameful way to sugarcoat McCarthy's campaign against medical science and leadership of an anti-vaccine movement that endangers lives. Treating science as just one opinion among many is anything but harmless. As Time TV critic James Poniewozik puts it:
To say that you can simply shrug off differences about medical fact as "outrageousness" or "controversy" is to feed the belief that science in general, be it vaccines or climate change or evolution, is simply subjective: you have your truth and I have mine. But we don't. The Earth didn't revolve around the sun only for Galileo.
Even if McCarthy has been told by ABC management that the subject of vaccines is off the table, the hire gives her credibility, which can only inflame the vaccine conspiracy that she has been the voice of for years. As Alex Pareene points out on Slate:
"Vaccine conspiracies, like so much modern cult conspiracy culture, perpetuates itself and lives on indefinitely thanks to the community-building and archiving of the Internet. With the help of some very prominent advocates, with huge audiences and a great deal of influence, it has spread far beyond the fringe."
If you want to see what lots of other people had to say about the hire, read the comments of some of the 2,000-plus people who have signed a petition on change.org to urge a boycott of The View over the McCarthy hire. I'll give the last word here to one of them, Pennsylvania pediatrician Jane Longacre:
Vaccines have saved more children's lives than any other public health intervention in history other than clean water. Don't allow ratings to take precedence over children's health!View Comments | Add Comment
The Life and Death of 'Glee' Star Cory Monteith
July 15, 2013 Beth Arky
News of Glee star Cory Monteith's death over the weekend sent fans reeling. As Finn, the high school football star-turned-musical theater heartthrob, the 31-year-old actor had been a favorite, embodying the teenager who transforms from a kneejerk bully to someone who thinks for himself, making friends with those he once belittled.
When the show debuted in 2009, Finn was the stereotypical homophobic jock, throwing slushies into the faces of unsuspecting kids walking through the halls of McKinley High. So it was wonderful to watch him evolve into someone who cared and stood up for members of his diverse new glee club gang, including the wheelchair-bound Artie and the gay Kurt, who would eventually become his half brother. And when he fell for geeky girl Rachel (played by real-life-girlfriend-to-be Lea Michele), we fell in love with the star-crossed pair, too.
But the successful high schooler Finn couldn't have been more different from Monteith. The Canadian actor, who was found Saturday in his Vancouver hotel room, was a high school dropout who had been battling drug addiction since he was 13. Monteith had announced in March he was entering rehab. An autopsy was to be performed today; the authorities have ruled out foul play.
According to reports, Monteith dropped out at 16 after attending 16 schools, then worked as a Wal-Mart greeter and a school bus driver before checking into rehab at 19. As he told a Canadian talk show host in a 2011 interview, doing drugs "wasn't so much about the substances per se, it was more about not fitting in.... I hadn't found myself at all."
Raising Drug-Free Kids: How Can the Science of Addiction Help Us?
Featuring Nora Volkow, MD, Director, National Institute on Drug Abuse
The actor was careful not to send the wrong message to his fans. He said he hoped his struggles with addiction would serve as an example: "I don't want kids to think it's O.K. to drop out of school and get high, and they'll be famous actors, too. But for those people who might give up: Get real about what you want and go after it."
Monteith got real thanks to his involvement in the arts, something he credited for turning his life around, much as it did Finn's. "I think kids really need a place to go and feel like they belong," he said in a video posted on the site for Project Limelight, a Vancouver charity offering theater and arts programs to at-risk youth. "When I was a kid, I struggled a lot with who I was and where my life was going and what I was interested in. And I was fortunate to have the arts inspire me."
Finn floundered post-graduation, leaving the Army soon after he signed up, but he found his way again when he returned to McKinley to direct the next generation of glee club members. Sadly, Monteith did not share his character's happy fate. But we like to think his example might inspire other struggling kids to find themselves through the arts, and those battling addiction or some other mental health problem to get help.View Comments | Add Comment