The Child Mind BlogBrainstorm
Avonte’s Law Would Help Track Autistics Who Wander
Jan. 27, 2014 Beth Arky
Supporters of new federal legislation believe it would help prevent tragedies like the recent death of autistic teenager Avonte Oquendo. Called "Avonte's Law," the bill sponsored by Sen. Charles E. Schumer (D-NY) would provide $10 million in federal funds to pay for optional electronic tracking devices for autistic children. It's named for the 14-year-old New York City boy who became the subject of an intense search after wandering away from his school in October, only to have his body found in the East River last week. The device could be worn on the wrist, sewn into clothing or kept in a wallet.
Schumer said Avonte's Law would be similar to a federal program that tracks missing Alzheimer's patients. Each device costs about $85, plus a few dollars in monthly fees, he said, adding that hundreds of families with autistic children already have paid for their own tracking devices.
"We can't change the past," said Schumer at a news conference yesterday, a day after Avonte's funeral, "but we can take necessary steps to ensure we learn from this and put in place programs that will ensure that no parent and no child has to go through a similar nightmare in the future.''
In fact, about half of autistic children are prone to wandering or elopement, according to research published in 2012, and wandering has led to the deaths of more than 60 autistic children since 2008. About 90 percent of the wandering fatalities in recent years have been drowning victims, according to the National Autism Association.
Investigators are still trying to determine cause of Avonte's death.
Tomorrow, the NAA's Wendy Fournier and Lori McIlwain will appear on Voice of America to provide parents with information on wandering prevention.View Comments | Add Comment
Will Forte on How OCD Helped Him Get to 'Nebraska'
Jan. 24, 2014 Jessica Kashiwabara
Best known for his goofy special ops agent character, MacGruber, actor Will Forte is getting high praise for his dramatic turn in Alexander Payne's Oscar-nominated film, Nebraska. And he's given us one more reason to love him: his winning openness about living with OCD.
Though Forte admits it can be challenging, he also embraces his OCD as a part of his personality. For instance, this from an interview on NPR's Here & Now:
It really helps because I need closure on stuff, I need completion. And in some ways it creates a real hyper focus, but in other ways I overthink things so I can really stress out about stuff and blow things out of proportion and worry a lot. But more than anything, I think it's - hey, you know, it's who I am as a person. In a lot of ways I don't know that I would have gotten to do some of the things that I got to do if it wasn't for exactly the way my brain has driven me crazy.
A veteran of SNL, Forte still enjoys playing kooky characters (and recently earned an Emmy nod for playing Jenna Maroney's cross-dressing boyfriend on 30 Rock), but the role of Bruce Dern's son in Nebraska is the one closest to himself that he's played on screen, and he embraced the change.
For me it's always this wacky character and you can hide behind the character. And this, in a way, was easier because the character was way more like me in my real life, but harder because you feel like you're revealing all your personal moments and secrets, and it made you feel really vulnerable.
Diving into the world of film festivals and award shows hasn't been without stress, and Forte acknowledges his OCD flare-ups. In a delightful chat with comic Marc Maron (who's had his own struggles with OCD) on the latter's podcast, he discussed his anxiety at attending the Cannes Festival. His biggest obstacle? A linen suit. Having never worn linen, Forte obsessed on awkwardly walking around stiff legged, trying to stay wrinkle free.
Maron: You're a fish out of water, it's a new experience, you got a lot going on that you've never had to deal with before... I mean, what would you rather think about, how overwhelming that is, or whether you're going to wrinkle your pants?
Forte: Yeah, I never thought about it like that. There's something to that for sure.
New opportunities and experiences continue to offer moments of revelation for Forte. While filming in a remote area of Ireland for another dramatic role as a cognitive neuropsychologist in the indie movie, Run and Jump, Forte was away from his family, working with people unfamiliar to him, and alone with his thoughts. In an interview with The Daily Beast, he talked about how this experience forced him to confront his issues with OCD.
It comes in waves. It definitely affects my everyday life. Mine is a lot of checking locks in patterns, checking stoves that I rarely use to see if the gas is on, or sinks. I don't want to burn my house down or flood my house. But oddly, the experience in Ireland really had a major effect on my OCD. I had so much time alone and so much time to think about stuff that I realized, "Why am I letting this OCD rule my life the way that it does? We're all gonna die at some point, so what if all my possessions burned down in a fire, or my house gets flooded? What am I scared of losing?"
Forte's comment reminds us that we're all still figuring things out and that's okay because the fun is in the journey to these new, unexpected places.View Comments | Add Comment
Kristina Starting New School for Max
Jan. 24, 2014 Beth Arky
Last night's Parenthood centered on not one but two Braverman couples advocating for their kids. In a major plot twist, the once blissfully happy Joel and Julia consulted with a family therapist on how to tell their two children, 9 and 11, about their impending split. Meanwhile, Adam and Kristina realized they had to resume their special-ed advocates roles for Aspie son Max after Max told his dad that his history teacher had been sending him to the library most days.
When the ready-to-rumble couple met with the frustrated teacher and principal, they were told that the school was doing its best for Max, who monopolizes his inclusion class's discussions. (When the topic turned to the Civil War, Max bordered on perseveration when he introduced his new keen interest, photography, as it related to Matthew Brady.)
Adam and Kristina grappled with how they could possibly find an appropriate high school setting for Max next year, a concern that was only amplified after Kristina tried unsuccessfully to help a mom with her daughter's high school IEP (Individualized Education Program).
Kristina and Adam end the episode searching for appropriate schools online. There are no appropriate placements for a kid like Max, whose spectrum qualities—social skills, communication and behavioral issues, along with perseveration—need to be addressed, but whose high test scores rule out all the public and private special-needs schools on the list.
"Where do you put a kid who doesn't fit anywhere?" asked a frustrated Adam, voicing a common complaint among parents of kids on the spectrum, leading an increasing number of them to homeschooling and virtual online schools.
This being television, Kristina responded, "I don't know. It's the system. As far as I'm concerned, the only way we get a school for him is if we start one ourselves." United front that they are, they both express only mild concern before diving into the project.
Now we'll have to wait till Feb. 27 to see just how far Kristina's school has progressed. If the can-do approach she showed during her mayoral campaign is any indication, she'll have things up and running by the time Parenthood returns.
No matter how far she's come, last night's lesson was clear: Advocating never ends.View Comments | Add Comment
City and Devoted Family Mourn Avonte Oquendo
Jan. 21, 2014 Harry Kimball
Today, authorities in New York City confirmed that remains found on the shore in Queens last week are indeed those of missing autistic teen Avonte Oquendo. He was 14 years old. His family must now face the grief that they hoped mightily would not come, but there is also sorrow and regret for millions of other New Yorkers.
I have lived in this city since I was born, and never have I seen anything like the search for Avonte. His mother and brother and other family members organized an army of volunteers to plaster the city with missing posters. The MTA made announcements on all trains. To be on the subway in Washington Heights, hear about a boy missing in Long Island City, and know that all over New York other straphangers were listening to the same thing was unexpectedly overwhelming. We'll never know exactly what happened to Avonte after he was, unfortunately, allowed to slip out of his school, but I believe this: because of the efforts of Avonte's family, if someone had seen him he would have been returned to them. They turned fierce love into dedicated action, and though it did not save him, it was a remarkable feat.
Our hearts go out to them, and to everyone who was close to Avonte Oquendo. I'll end by noting that New Yorkers decades from now will remember and recognize that missing poster, an enduring image of this sad story and our unfulfilled hopes. Those who live in Long Island City, near the school where Avonte went missing, saw another poster. This one was intended for Avonte's eyes, and is written in pictograms. It instructs him to contact a police officer, or a fireman, a nurse or a doctor, and that that they will take him home. We're sorry the best wishes of a family, and a city, couldn't save him.View Comments | Add Comment
Toy Marketing for Girls: Then and Now
Jan. 20, 2014 Rachel Ehmke
We keep hearing that men and women are more equal than they've ever been, but the way toys are marketed to kids seems weirdly out of step. In fact, a recent story on the Huffington Post comparing modern ads with those from the 80s and 90s shows that advertising is actually becoming more stereotyped.
The post begins with a refreshing Lego ad from 1981 that is simple and gender neutral—just a girl playing with an ordinary set of Legos. It's contrasted with the feminized "Lego Friends" set that came out in 2011.
Some of the ads are for toys that have always been targeted to girls; others are for toys that used to be gender-free. All of them have changed radically. Hollie Hobbie has gone from pioneer patchwork to mall-ready shrunken tee and Strawberry Shortcake has gotten a hair, face, and body transplant. Troll dolls have turned into teenage vixens. Even My Little Pony has gotten flirty. The examples go on—Et tu, Lisa Frank? The oddest is perhaps a new version of Candyland featuring the character who used to be called Queen Frostine—she was demoted to Princess Frostine after 2002—wearing fishnet stockings with swirly clouds that accentuate her bust.
The earlier ads are definitely a lot more childlike. The characters have baby fat and aren't sexy—at all. In contrast, the newer ads have a sexual precociousness that's being marketed directly to the young girls who are going to be most vulnerable to them. What kid doesn't want to be more grown up? Who doesn't want to be sexier?
Gender dynamics aside, it's also worth pointing out that the old Lego ad was for a universal building set of blocks that kids could use to make whatever they dreamed up. The new ad is for kits to build specific things that were designed by adults. Kids get to follow the directions—if they can. One mother in the comments section of the article writes that she misses the creativity and lack of expectations that Lego used to come with. Kids like the kits, but they're intimidating for them, she says. In her experience parents end up doing the actual building. "Trust me I have fun doing it, just wish it was her doing it and having the fun," she wrote.
Like the bizarrely sexy Candyland game, this seems like just another example of kids not really being ready for the things that are marketed to them. Wouldn't it be better for kids to be learning and playing with toys actually designed for their developmental stage? Unfortunately I think it's going to be a tough sell.View Comments | Add Comment
Speech Out of Sync for Autistics
Jan. 16, 2014 Beth Arky
A new autism study out of Vanderbilt University is getting a ringing endorsement both from parents and those on the spectrum. For the first time, researchers have found that autistic children seem to have trouble integrating sight and sound information.
While a speaker's mouth movements and words go together for a typically developing person, the researchers found in many autistics there's a delay between what they see and what they hear. "It's as if they're watching a badly dubbed movie where the words and the pictures don't match up," according to a report on The CBS Evening News.
Mark Wallace, lead author of the study, told ScienceDaily, "one of the classic pictures of children with autism is they have their hands over their ears. We believe that one reason for this may be that they are trying to compensate for their changes in sensory function by simply looking at one sense at a time. This may be a strategy to minimize the confusion between the senses."
Wallace's team has developed a video game aimed at helping autistic kids practice putting sight and sound together by speeding up delayed auditory processing. Perhaps the researcher's most startling suggestion is that not only is sensory integration a real issue with autistic kids—it is perhaps the central core deficit that gives rise to classic autism symptoms like impaired language and social communication.
Wallace notes that while "there is a huge amount of effort and energy going into the treatment of children with autism, virtually none of it is based on a strong empirical foundation tied to sensory function. If we can fix this deficit in early sensory function, then maybe we can see benefits in language and communication and social interactions."
Blogger Rachel Kenyon, who was diagnosed on the spectrum as an adult and has a 7-year-old daughter also on the spectrum, says the study is on-target.
While she was thought to be typically developing growing up, Kenyon says, "It seemed that I was always a step behind socially or conversationally." She now watches TV with closed captioning, finding that "I can keep up much more easily with processing the events, emotions, and actions taking place on the screen."
She has also come to realize that she developed compensatory skills so she could understand conversations: One involves finding a visual point to focus on other than the person's mouth while they are speaking. "For instance," she says, "I might choose to stare at a speaker's freckle or piece of jewelry so that I can use the remaining mental focus on listening, interpreting and constructing appropriate responses." It's easy to see how this could be viewed as the lack of of eye contact common in kids and adults on the spectrum.
Kenyon says of the study, "Any time we can broadly share and explain just one aspect of autism in plainly understood language, such as this study does, is a step closer to acceptance. As we move closer to acceptance and understanding, we move proportionally closer to developing educational approaches and technological advances that can help autistics such as my daughter and even myself improve quality of life."
Joslyn Gray, another autism mom who blogs at stark. raving. mad. mommy., agrees. "I'm so excited about this research," she says. "I'll be following this to learn more about therapies that help kids learn to close that gap that makes audio and visual input out of sync for them. But more importantly, I'm excited about helping neurotypical people understand my daughter's experience."View Comments | Add Comment
Do MTV Reality Shows Reduce Teen Pregnancies?
Jan. 14, 2014 Caroline Miller
A surprising study, reported in the New York Times this week, suggests that those MTV reality series about teen moms, much criticized for glamorizing teenage parenthood, may have actually helped reduce the teen pregnancy rates in areas where they were watched.
A lot of people are scratching their heads at the notion that shows like 16 and Pregnant and Teen Mom could really dissuade other girls from following in the footsteps of their protagonists. Yes, they show how tough it can be to have a child when you're not yet out of high school, but they've also made tabloid stars of their young moms. Isn't the message that pregnancy can get you on a very popular MTV show counter-productive in itself?
Perhaps not. Researchers correlated birth records and Nielsen television ratings after 16 and Pregnant debuted in 2009, and found the rate of teenage pregnancy dropping faster in areas where teenagers were watching more MTV programming. They calculated that the programs reduced the teenage birthrate by nearly 6 percent.
Whether or not the science holds up it reminds me of the most important thing I learned as the editor in chief of Seventeen magazine many years ago—that girls are more open to learning from other girls than from adults, who they often feel just don't understand what it's like to be them. The best way to communicate information, we found, was to have girls tell their stories.
And the power of those stories is now amplified by social media, where a story can start a conversation. The researchers on this study also found that postings and Internet searches about contraception rose sharply when the show was broadcast.
As one Washington teenager tells the Times, it can be more powerful than sex ed, because it's more personal. "Watching 'Teen Mom,' you're close to the characters. You're watching them go through their day. You're seeing what different aspects of life are like with a child. I don't know how else you could get to know something like that."View Comments | Add Comment
Against 'Competitive Mindfulness'
Jan. 13, 2014 Caroline Miller
There's a good piece on mindful parenting over at Slate today—not about how to be a mindful parent, but about how annoying it is when the notion of mindfulness is turned into another thing "good" parents are supposed to aspire to. Mindfulness has become so trendy that anxious parents are basically adding it to the list of attributes they need to instill in their children.
Practicing mindfulness, Hannah Rosin writes, can be great, if it really means stepping off the treadmill more often and giving the kids a break, too. But she doesn't see that happening. And if parental perfectionism and overscheduling are what's causing the stress, does it really help much to add yoga class?
Rosin warns against competitive mindfulness—the idea that to be truly successful your kids need to become not only scholars and athletes and entrepreneurs-in-the-making but fully grounded human beings, in touch with their feelings, and expert at letting stress roll off their backs. And to be successful parents, you need to be able to model the kind of calm you want them to achieve. Who can live up to that?
"The last thing American parents need are more goals that they are failing to meet," she writes. Then "'breathe' and 'live in the moment' are just two more things you didn't get to that day."
Open Science and Big Data in Brain Research Hit the Front Page
Jan. 9, 2014 Michael P. Milham, MD, PhD
The recent article by James Gorman in the New York Times draws attention to an exciting new era of neuroscience and the increasingly bold efforts of scientists to unravel the mysteries of the brain with technological, methodological, and analytic advances. Clearly appreciating the enthusiasm of the field, Gorman also does an excellent job of tempering ambitions and expectations with sobering realities. The task at hand—mapping the human brain in high detail—is massive, and not one that any single scientist, laboratory, institution or discipline can take on single-handedly. The neuroscience of the 21st century is emerging as a "team science," encompassing a broad array of disciplines (e.g., psychology, psychiatry, engineering, mathematics, statistics) and necessitating active, open collaboration.
In this regard, the Child Mind Institute, along with the Nathan S. Kline Institute for Psychiatric Research, have worked and will continue to work to foster global collaboration. Our sponsorship and support of open data-sharing efforts such as the 1000 Functional Connectomes Project and its International Neuroimaging Data-sharing Initiative (INDI), has encouraged the aggregation and open sharing of brain images from more than 5,000 individuals independently collected from 50+ sites around the world. Attracting engaged interest from scientists in more than 80 countries and 2000 cities, these efforts have provided the global scientific community with the data necessary to rapidly make leaps forward in our understanding of disorders such as ADHD, autism and schizophrenia, and how to better diagnose them using brain imaging.
Equally important, these two institutions have partnered in an effort funded by the National Institute on Mental Health (NIMH) to image the human connectome in clinical and non-clinical populations across the lifespan (ages 6-85), openly sharing the data with scientists around the world as it is collected. It is our hope that other institutions around the world will follow this example, and openly share the data as it is generated—not years after collection and publication.
Importantly, as highlighted by the recent NIH Brain Initiative, open data-sharing is not enough to unravel the mysteries of the brain or the debilitating effects of mental illness on healthy brain function. The field requires tools capable of bringing down the barriers to entry for studies of the human connectome, and supporting the processing of large-scale, 'Big Data' samples. In this regard, the Child Mind Institute, in collaboration with the Nathan Klein Institute, is actively working to develop and share analytic tools for the examination of the human connectome.
We are proud to be in the company of pioneers like those discussed in Gorman's article. One of his subjects, Dr. Deanna Barch, sums up our shared ethos pretty well. She is quoted: "The amount of time and energy we're spending collecting this data, there's no possible way any one research group could ever use it to the extent that justifies the cost. But letting everybody use it—great!"
Michael P. Milham, MD, PhD, is director of the Center for the Developing Brain at the Child Mind Institute and a research psychiatrist at the Nathan S. Kline Institute for Psychiatric Research.View Comments | Add Comment
Dyslexic Jamie Oliver Struggled With Stigma
Jan. 6, 2014 Beth Arky
Boyish TV chef Jamie Oliver is slicing and dicing his British grammar school, saying he was labeled, stigmatized and teased for needing extra help with his dyslexia.
Both Oliver and Jimmy Doherty, a friend and organic farmer who shares the bill on his new TV show, Jamie And Jimmy's Friday Night Feast, were in the special-needs program at their school in Newport, Essex.
Oliver, now 38, recalls, "While we were at school, I struggled. Imagine a boys' school. Thirty boys in the middle of English, bang bang bang on the door, 'Can we have Jimmy and Jamie for special needs?' Just us two out of our class."
Cue the other children, who would sing "Special Needs" to the tune of "Let it Be" as the pair left the room.
The experience left a scar. Oliver says he's "not a good reader. I've always tried to read a book and given up after the first page." In fact, it was only last year that he completed his first novel, Catching Fire in The Hunger Games trilogy, after he'd seen the film and because his daughter had "probably read 2,000 books in her lifetime. "I read this book and got completely hooked. I understood for the first time that it could be a joy."
Oliver credits his success to something other than book learning. "I was rubbish in school but I was always very physical. That's what it's about. Get up and do something. Go out and set up a stall making the best cappuccinos, if that's what you want to do." At a time when schools are having kids sit more and move less when many need the exact opposite, Oliver's words take on particular import.
We'd like to think things have improved for special-needs students since Oliver's school days. At least in the United States, inclusion allows for a large number of special-needs students to remain in class with dedicated special-needs teachers, while therapists and learning specialists often "push in"—meaning they come into the classroom to work with kids, rather than pull them out.
However, we know stigma remains, especially when special-needs students are in segregated programs and schools. Parents, educators and students all need to do their part to understand and accept differences so that everyone has a good shot at a positive school experience.View Comments | Add Comment