The Child Mind BlogBrainstorm
Special Needs Parents vs...Patent Law?
June 21, 2012 Harry Kimball
Parents of a nonverbal four-year-old with developmental delays have had a very painful lesson in patent law recently. First, the background: an iPad app called "Speak for Yourself" enables their daughter Maya to speak to them for the first time in her life.
"We are hanging on her every word." her mother blogged. "We've learned that she loves talking about the days of the week, is weirdly interested in the weather, and likes to pretend that her toy princesses are driving the bus to school (sometimes) and to work (other times). This app has not only allowed her to communicate her needs, but her thoughts as well. It's given us the gift of getting to know our child on a totally different level."
The trouble is that the upstart developers of Speak for Yourself, a couple of speech pathologists, are being sued by a more established firm, the Prentke Romich Company, for patent infringement. The Speak for Yourself app isn't cheap, at $300, but it is much, much more affordable than the four-or-five-figure dedicated hardware the Pretke Romich sells for what is called alternative and augmentative communication (AAC). Speak for Yourself is also very, very similar in function to the hardware Prentke Romich sells, according to the suit. Though it hasn't worked its way through the courts yet, Apple pulled Speak for Yourself from the App Store last week, according to Disability Scoop and Ars Technica.
Maya's mom, Dana Nieder, describes on her blog how her family tried many different communication methods for Maya, including Pretke Romich products, before finally finding success with Speak for Yourself. Now she's terrified that the lawsuit might rob her daughter of a very important, if not all-important, tool. Nieder now has two iPads loaded with the offending program on airplane-mode-lockdown, worried that it might go missing into cyberspace.
Prentke Romich may have legitimate claims against Speak for Yourself. And Apple has reserved all sorts of rights to summarily pull things from the App Store. But as far as I know they've involved things like racy picture apps, not a device critical to the well-being of people with communication deficits. This is a different ballpark, and I have to assume the parties are hard at work on a resolution to avoid the suffering, not to speak of the backlash, that will result if these businesses don't figure out a way to work together.
Neider will be making as loud a noise as she can to see that that happens. "The fact that my daughter's ability to speak is becoming a casualty of a patent battle between two businesses is beyond my comprehension," she writes on her blog.
Emma Stone Controls Panic by Baking
June 19, 2012 Jessica Wakeman
Gearing up for the release of The Amazing Spiderman, Emma Stone is making the media rounds. The gregarious and animated comedic actress revealed in the July issue of Vogue that while filming, she came up with a creative way to counter-balance panic attacks that she has experienced since the age of eight.
Stone, 23, spoke in detail about feelings of isolation that the fear of an attack can produce in a child. "I was just kind of immobilized by it," she said. "I didn't want to go to my friends' houses or hang out with anybody, and nobody really understood."
She started therapy and at age 11 found that her best coping method was acting or, more specifically, improv comedy. She said it taught her to roll with the punches and helped her see that, "failure is the same as success when it comes to comedy because it just keeps coming. It never stops."
It takes courage to act, be spontaneous and funny in front of an audience and critics. It also takes courage to meet panic attacks face to face and to move past the building anxiety, to tolerate it until it fades.
Stone joked about using baking in order to sustain a feeling of control while she was filming the next Spiderman installment:
"I think I felt really out of control of my surroundings. I was just baking all the time. There were stacks of things in the kitchen that nobody could possibly go through. It seemed like it made me feel, if I put these in, I'll know what the outcome is ... I was overbaking."
It is great to see a young actress acknowledge the liberating role performing plays for so many people wrestling with anxiety, and feeling comfortable sharing her own quirky strategies for managing it. She may have felt alone as a kid, but she's not any more.
Find out more about panic disorders, with these quickfacts.View Comments | Add Comment
Mets Consider Adding Quiet Section for Fans with Autism
June 19, 2012 Rachel Ehmke
How about those Mets? We recently learned that the team with centerfielder and ADHD role model Andres Torres is considering adding a quiet section in the stands at Citi Field for kids with autism and their families. The Mets first began shopping the idea in an email survey, describing the area as a "designated quiet seating section with lower volume PA announcements and no music or cheerleading."
Many people on the autism spectrum have sensory processing issues, making them especially sensitive to loud noises and other kinds of overstimulation that are common in most live entertainment. Citi Field is the first ballpark we've heard of offering special seating arrangements, although other teams including the Mets are already hosting Autism Awareness days.
If the team moves forward with their plans they'll be joining Broadway and AMC Theatres, who are already offering special performances designed for audiences with sensory processing issues. To learn more about these shows, check out our first person account from one mom who attended a special autism-friendly performance of the Lion King on Broadway with her kids.View Comments | Add Comment
Harvard/Autism Speaks Brain Bank Compromised
June 12, 2012 Harry Kimball
It is a common lament in autism circles that research is presently inadequate and not accelerating at anywhere near the pace of, say, the prevalence of the disorder. (In just the last couple of months we've gone from 1 in 110 to 1 in 88, according to the CDC.) And so it is devastating to hear when a major resource is compromised, as appears to have happened about two weeks ago when more than 50 brains taken from deceased young people with autism were damaged in a freezer mishap, the Boston Globe reports. The specimens were part of Autism Speaks' Autism Tissue Program, housed at the Harvard Brain Tissue Resource Center.
Apparently, an administrator checked on the particular freezer unit—which also housed brains of people who had had Alzheimer's, bipolar disorder, and schizophrenia—in late May. Although the thermostat read out an acceptable temperature, and no alarms had sounded, when he entered the unit it was about as cold as your standard refrigerator—not nearly cold enough to preserve the brains. Researchers don't yet know what they can salvage and of what use it will be, but suffice it to say that the largest collection of autism brains in the world has been reduced by a third. One researcher says the loss could put research efforts back 10 years.
Even Landon Bryce, a steadfast antagonist of Autism Speaks and foe to any research that smacks of a "cure" for autism, noted the loss of the resource without editorializing. He added, darkly, that "officials have not ruled out the possibility that this was a deliberate criminal act." Though an investigation may be undertaken, some researchers in the field think an unfortunate accident is the more likely culprit. "I think this is just one of those glitches that sometimes happen,'' a brain scientist tells the Globe.
Now, this loss may turn out to be a real blow to the current state of autism research—but it also illustrates just how far we have come. Foul play or malfunctioning freezer units aside, this incident gives us insight into a coordinated research effort that teams a leading advocacy organization with a top-tier research university and federal funding. We see families affected by autism and other psychiatric and neurological disorders eager to turn their own personal tragedies into opportunities for others. It is sad that something went terribly wrong, but at least it happened in the context of things being done so right.
"The donors, they should be upset, they should realize that this shouldn't happen," another scientist tells the Globe. "But this shouldn't dissuade people from continuing to donate, because it is the most important resource that autism science has right now."View Comments | Add Comment
Abusing Adderall to Get Ahead
June 12, 2012 Rachel Ehmke
If the New York Times' disturbing Horace Mann investigation wasn't enough to turn you into a helicopter parent, over the weekend the paper also published a story about stimulant abuse happening at high schools across the country. We don't really know the extent of this abuse, since monitoring agencies report markedly lower numbers than anecdotes would suggest, but the story isn't anything new—students have been abusing stimulants purchased from a dealer or borrowed from a friend for decades now in hopes of improving their GPA. But this abuse does seem to be becoming increasingly common and even expected for students in some high-pressure environments.
Our first order of business here should be to emphasize the enormous difference between talking a prescription medication prescribed for a legitimate disorder and taking a prescription medication like it is a performance enhancing academic steroid. The two are not the same. And while the article suggests that stimulants might lead to future drug abuse, this simply isn't true for the kids who are using stimulants to treat their ADHD. In fact, these kids are less likely to abuse drugs because they don't feel the need to self-medicate with other substances when they are experiencing the stabilizing effects of their prescription. There's good research supporting this.
It's also important to clarify that Adderall and other stimulants are not actually "good-grade pills," as they're being called in the Times headline. Adderall will not give you good grades; Adderall will not make you smarter. Abusing Adderall might make you stay up for a really long time and think you are writing an awesome essay, but, as any English teacher will tell you, thinking you've written an awesome essay and actually doing it are two very different things. Even some parents seem confused over this. One primary care physician told the Times that many parents push for unnecessary prescriptions, saying, "My child is not doing well in school. I understand there are meds he can take to make him smarter."
That some parents don't seem to know the risks of encouraging their children to abuse a Class 2 controlled substance is alarming. That some doctors are aiding in the abuse is even worse. Several teens in the article described how easy it was for them to game the system and find a doctor willing to write prescriptions without first evaluating them for a real disorder. This isn't acceptable. Doctors have the responsibility to be better informed and take more time with their patients, and parents need to make sure they are getting good medical advice from a conscientious doctor who knows his stuff. A diagnosis should never be blindly given or accepted.
That isn't our only takeaway from the article, though. It is clear that our expectations need to be changed if we are creating an academic environment where teens are expected to stay up all night cramming facts like Mark McGwire hitting homers. Parents and schools can both play a role here. Douglas Young, a spokesman for a school outside Philadelphia, told the Times:
It's time for a serious wake-up call. Straight A's and high SAT scores look great on paper, but they aren't reflective measures of a student's health and well-being. We need to better understand the pressures and temptations, and ultimately we need to embrace new definitions of student success. For many families and communities, that's simply not happening.
Parents supporting their teens and encouraging healthy academic expectations can go a long way to changing this, but it won't always be enough. Too many high schools are pressure cookers, encouraging students to spend years working on their college applications. And the truth is that many of the kids abusing stimulants would be trying to stay up all night anyway; Adderall just makes it easier.View Comments | Add Comment
Is Imaging Safe for Kids?
June 7, 2012 Harry Kimball
The Wall Street Journal today reports on a paper in the medical journal Lancet with some alarming results: people who receive multiple CAT scans of the head in their earlier years are 3 times more likely to develop various cancers, including leukemia and brain cancer. According to the study, just 2 CAT, or CT, scans can dramatically increase the brain cancer risk, while it takes quite a few—5 to 10—to tip the odds when it comes to leukemia. So...no more CT scans for kids, right?
Wrong, for a variety of reasons. The actual incidence of these cancers is still low. The study, which looked at 10 years of British data, found that CT scans likely contribute to one new case of brain cancer in 10,000 people over the course of the decade. But there is another reason, one that we run into all of the time in the field of child mental health: the risk to reward ratio. When discussing treatment options, we often say, "There is a certain risk to treatment, but there is also a risk to not treating." The same is true in this diagnostic situation. As Shirley Wang writes in the Journal, "the immediate benefits of the scans, such as in detecting head injuries, still outweigh the risks."
There is another lesson to be learned here, one that depends on another kind of imaging technology, MRI. Magnetic resonance imaging can in some cases be a substitute for CT scans—but it is also widely used as the preferred tool of the neuroimaging research the Child Mind Institute is working to coordinate and promote around the world. MRI does not use ionizing radiation and thus poses no cancer risk. So, if a competent doctor recommends a CT scan for a child after an accident, or in the course of diagnosis, chances are the benefits outweigh any increased cancer risk. And an MRI your child has, perhaps during the course of contributing to our understanding of brain science, poses no cancer risk at all.View Comments | Add Comment
Facebook for Tots?
June 4, 2012 Harry Kimball
The Wall Street Journal reports today that Facebook appears to be considering changes in its age restriction policy with an eye to letting previously excluded under-13-year-olds sign up for a (supervised) account. This isn't opening the floodgates, as it were—it is a response to the online reality that 7.5 million kids under 13 are already on the site, albeit under false pretenses (and often aided and abetted by their parents).
In the Journal, Anton Troianovski and Shayndi Rice write that the social networking giant is testing ways of "connecting children's accounts to their parents' and controls that would allow parents to decide whom their kids can 'friend' and what applications they can use." Oh, and of course, a mechanism for "Facebook and its partners to charge parents for games and other entertainment accessed by their children."
Although the changes are by no means a sure thing, many of these kids are already on Facebook, operating in a world of more "adult" privacy settings even if their parents are close by providing guidance. So what's the harm in granting some sort of "amnesty" to these "illegal aliens" of the Web 2.0 world? You might stand on principle, as Common Sense Media chief James Styer does. "We don't have the proper science and social research to evaluate the potential pros and cons that social-media platforms are doing to teenagers," he tells the Journal, not to mention the tweenage set (or younger!) "The idea that you would go after this segment of the audience when there are concerns about the current audience is mind boggling."
OK, but isn't that naïve? So says Larry Magid, more of a digital pragmatist, who commented on the story over at the Huffington Post.
Whether we like it or not, millions of children are using Facebook, and since there doesn't seem to be a universally effective way to get them off the service, the best and safest strategy would be to provide younger children with a safe, secure and private experience that allows them to interact with verified friends and family members without having to lie about their age.
As you can see, there are good arguments on both sides of this issue. But even if Magid is right, and the wall Styer seems to want to build is an impossible dream, it does mean that families have no option but to submit. I am sure parents will welcome new ways to monitor their children's experiences online. But the same parents would also do well to make sure there are experiences offline to monitor, too. That's just good, even necessary, for kids—particularly the young kids who appear to be entering the fray.
In the end, however, there is the bottom line to think about, and it's hard to stand in the way of those sorts of thoughts. In the past, Facebook CEO Mark Zuckerberg has been incredibly ambivalent about peddling his wares to kids under 13 because of the hassles posed by numerous federal statutes. But there is money to be made from young users, so apparently his company is ready to take the pre-teen plunge.View Comments | Add Comment
Resilience: Making Kids Sesame Street Strong
May 31, 2012 Harry Kimball
The Sesame Workshop just launched a new online "Tool Kit" that aims to help parents foster resilience in young kids no matter what they face, called Little Kids, Big Challenges. The Child Mind Institute was on hand at a Sesame Street gala in New York last night. (That's CMI president Dr. Harold Koplewicz below, with, I believe, Oscar the Grouch.)
This is a great tool for parents of kids who have experienced any sort of disruption, from a move to the loss of a parent. But what really strikes me is how helping children with any challenge, or helping them develop any life skill, is all about communication, about conversation, and about cooperation. The tool kit, which I hope will grow in scope, includes simple activities designed to encourage kids to think about themselves—"How Am I Feeling?"—at the same time that they communicate this information. And it helps them visually understand their support network and the catalog of things they can and have done outside of their comfort zones. (This exercise, called "New Things Tree," is familiar to me from talking to Dr. Jerry Bubrick about treatments for separation anxiety disorder.)
Over on the Sesame Workshop blog, they lay out ambitious goals for the initiative, particularly since it is aimed at 2- to 5-year-olds. "Learning from mistakes; making new friends; resolving conflicts: these are the kinds of early childhood struggles with which Little Children, Big Challenges will help young kids cope." We like to say that kids under 8 are "more B than A;" that is, they respond much better to behavioral approaches than to cognitive ones. And learning from mistakes and resolving conflict are skills that elude many much, much older people. But if we can engage kids early with these tools and boost the resilience required to deal with life's challenges and come out a better person, why not? Best of luck, Sesame Workshop. Now, can you tell me how to get to Sesame Street?View Comments | Add Comment
The Mets' Andres Torres: Living and Succeeding With ADHD
May 25, 2012 Harry Kimball
Yesterday a colleague and I hopped on the 7 train in New York to head out to Citi Field, where the Mets play, and speak for a moment with Andrés Torres, a centerfielder who also happens to have ADHD. A movie is coming out soon, called Gigante, about Torres' life and ascent to the major leagues, which included a battle with poverty as well as with ADHD. In fact, even after he was diagnosed and prescribed medication, he waited years to take it regularly. That's when his life came together.
Amazingly, I thought, he told me that his colleagues in the MLB were all supportive of him as he went about his life with ADHD. "They're OK," he said. "I am who I am, I respect them," and in return "they respect me, they support me, and that's a good thing." And Torres is a sterling role model for kids with ADHD—or really any psychiatric or learning disorder—telling them, in essence, to accept who they are even as they accept the need for ongoing treatment. And to expect to succeed.
Of course, Torres' outlook and the tolerant attitudes of his teammates are not par for the course. While on the 7 train I thought of another ballplayer, the former Atlanta Braves pitcher John Rocker. In 2000 he said this to a reporter, about how he could not possibly play for a New York team:
Imagine having to take the 7 train to the ballpark looking like you're riding through Beirut next to some kid with purple hair, next to some queer with AIDS, right next to some dude who just got out of jail for the fourth time, right next to some 20-year-old mom with four kids. It's depressing...The biggest thing I don't like about New York are the foreigners. You can walk an entire block in Times Square and not hear anybody speaking English.
From the clip below, you can tell that Andrés Torres speaks English, but it's not his first language. However, from meeting him just once, I'm happy to say I'd be just fine sitting next to a role model like him on the 7 train. Here's to a future where people feel more like that, and less like John Rocker.
Check back soon for a feature story on Torres and Gigante.View Comments | Add Comment