The Child Mind BlogBrainstorm
A Child's OCD, a Mother's Journey
July 13, 2012 Caroline Miller
There's a very moving story on the New York Times website written by the mother of a 9-year-old girl who has OCD. The writer, Beth Boyle Machlan, herself has a history of depression and bipolar disorder, so she thought, naturally, that she would be very alert to any signs of distress in her little girl, whose name is Lucy. But Lucy's anxiety took her mother by surprise. One day she said simply, "You know how Ella Enchanted had to do things even if she didn't want to? Sometimes I feel like I have to do things, too." It turned out that Lucy had secretly developed elaborate rituals of counting, and lining things up to alleviate overwhelming fears of something terrible from happening to her parents, or herself. "She had to be sure her dolls' eyes were closed or her stuffed animals' faces turned away when she went to bed, or they might kill her in her sleep."
Machlan's story of coming to terms with Lucy's disorder is candid and insightful—shedding light on the way children can struggle with intense OCD without really showing symptoms, and how it can be treated with behavioral therapy called exposure and response prevention. When the doctor who treated her started working with Lucy, her mom was astonished at the sheer power of the anxiety, and the need to get things "just right" to "fix" it. We've seen OCD completely shut down a child's life and, we're happy to say, we've seen treatment, often a combination of medication and behavioral therapy, dramatically reduce that power and give a child back her childhood. We note that Lucy's treatment was at the Child Mind Institute, with a behavioral psychologist named Dr. Clark Goldstein, and we're glad that Machlan's experience—and Lucy's, of course—was a positive one.
And we're glad that Machlan has shared the story—and that Lucy, who read and approved her mother's piece, was brave enough to share her experiences for the benefit of other kids and families. One of the best parts of working at the Child Mind Institute is meeting a kid who has struggled with a psychiatric disorder, learned methods to cope, and decided that talking about it is the next logical step. Thank you Lucy, Sophie, and Dolly, among others.View Comments | Add Comment
A 'Bad Mother' Gene?
July 9, 2012 Harry Kimball
We have a saying around the office that goes something like this: "Bad parenting doesn't cause psychiatric, learning, or developmental disorders. But exceptional parenting can make all the diference for kids who struggle in these areas."
I'm reminded of this by a study claiming to have identified a genetic difference linked to a mother's levels of "sensitivity, supportiveness, and responsiveness." Researchers from the Hebrew University of Jerusalem say that one version of the gene AVPR1A can lead to "lower levels of maternal gentle guidance" and less engagement from a mother, according to Discovery News. What's more, the authors say, the same variation or "allele" of this gene has been previously linked to autism. In a nutshell: moms with this gene are distant and unsupportive, and the kids they pass it on to are at a higher risk for autism.
On his blog, thAutcast, Landon Bryce is appropriately incensed. "Blaming women is almost always good for business and credibility," he snipes.
"I thought we were decades beyond this," one commenter adds, and it certainly does hearken back to the midcentury "refrigerator mothers" theory of autism, except now it is genetic.
Bryce, who has self-diagnosed Asperger's and is a fierce advocate for people on the autism spectrum (and often for the families that care for them), is also angry at the suggestion that there is something "bad" about being a spectrum-y Mom, and that it could possibly be to the detriment of their children.
"And what to do about these genetically inferior mommies who ruin their kids by acting too autistic?" Bryce wonders. "Medicate and train away their differences, of course." He then quotes the study authors, who suggest parent training to help "bad mothers" to counterbalance their unfortunate genetic inheritance.
I think it is worth making two points. First, everyone needs help parenting sometimes, particularly if you are parenting a child with a psychiatric disorder or special needs or who is, as Bryce likes to say, not neurotypical. Parents come with all kinds of temperaments, and when kids are having problems, parents all over that spectrum may find that changing their parenting style or improving parenting skills can make a big difference.
But secondly, the study does paint an unsettling, deterministic picture of a straight line between mothers genetically predisposed to cold, aloof parenting and kids with autism spectrum disorders. The news stories Bryce shares on his own site show just how wide-ranging the relationship between parents and their autistic offspring are. There are the lurid stories of mothers who kill their children, and uplifting stories of moms who lay it all on the line to get their children the best early interventions to help them reach their potential. In the face of this evidence, genetic determinism seems naïve.
"The influence of most genes is not set in stone," one of the researchers says. That is true of kids getting early intervention, sure. But it's also true of moms and dads.View Comments | Add Comment
50 Cent and 'Looking Autistic'
July 5, 2012 Rachel Ehmke
50 Cent recently drew the ire of the autism community with a series of stunningly ignorant posts on his Twitter account. In response to an Internet heckler, the rapper tweeted, "you look autistic" and later, "i dont want no special ed kids on my time line." The closest he's come to an apology was tweeting, "just kidding."
There is no "looking autistic," as the actress and autism advocate (and autism mom) Holly Robinson Peete pointed out in her eloquent open letter. "Do you even know what autism is?" she asked 50 Cent before pointing out its prevalence (1 in 88 kids) and showing a picture of her own son, who has autism and loves rap music and looks exactly like any other kid except maybe more handsome, since he has inherited Robinson Peete's good looks. It seems likely that 50 Cent doesn't really know what autism is, and he was unfortunately using it as the new, edgier version of "retarded" for an easy joke.
But by now he knows he hit a nerve. People are widely sharing Peete's letter and their own photos of what a child with autism looks like, as well as calling for a boycott of his music. 50 Cent had been building a reputation as a philanthropist and person who cares about the welfare of children worldwide, but he hurt a lot of kids with his careless words. We're looking forward to an honest apology because "just kidding" is a joke.
UPDATE: We're very happy to report 50 Cent deleted his offensive tweets and later posted:
I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.
50 Cent has over 7000 followers on Twitter, and of course many more people read about his apology elsewhere online. It's good to see his response and even better to see word getting out.View Comments | Add Comment
Do Meds Mean We Don't Know Who 'Me' Is?
July 3, 2012 Harry Kimball
Katherine Sharpe was in college, in the late 1990s, when she had a "prolonged anxiety attack" that left her laid out with panic and despair. A visit to the campus health center led to a prescription for antidepressants. Did they work? "Work they did," she writes in the Wall Street Journal. "My dread burned off like valley fog in the sun, and my tears dried up as decisively as if someone had turned off a spigot. Soon I felt less anxious and more sociable than I could ever remember being."
Since then, she notes in her piece titled "The Medication Generation," kids with psychiatric disorders are being identified younger and getting treated earlier. But this gives Sharpe pause. "These trends have produced a novel but fast-growing group—young people who have known themselves longer on medication than off it.
This is an insight not to be taken lightly. We know from research and clinical experience that properly monitored medication can make all the difference for kids with crippling anxiety, impairing impulsivity, or depression that can shut a person down—that it can change the trajectory of lives. Sharpe does not dispute this. "Drugs undoubtedly help many young people who are genuinely struggling," she writes. What she worries about is over prescription.
"The expanding use of psychiatric medication in youth over the last 20 years has meant that the drugs are now prescribed in less and less severe cases," she writes. "In fact, it's tempting to see the rapid spread of these medications less as evidence of an epidemic of youthful mental illness than as part of a broader social trend toward aggressively managing risk in the lives of children and teens."
Here is where we must part company with Sharpe. There is absolutely nothing wrong with "aggressively managing risk in the lives of children and teens." In fact, we owe it to the next generation to intervene early and stave off the often dire effects of untreated mental illness later in life. Yesterday, we read that spanking may slightly increase the risk of developing a psychiatric disorder in adulthood. Do you know what confers a greater risk? A psychiatric disorder in childhood.
Sharpe is right to look critically at the use of medication in children, and to wonder if there are augmentative or alternative therapeutic interventions. These are the thoughts of any caring and competent mental health professional. And, as she notes, the need to continue medication should be reassessed periodically. A good clinician is always alert to the fact that kids who've been treated with medication, as they develop, may no longer need it.
For those who do take medications long term, she sees the risk that, "lacking a reliable conception of what it is to feel 'like themselves,' young people have no way to gauge the effects of the drugs on their developing personalities."
No one should be dissuaded from recognizing this risk, and the difficulty of forming a clear identity when you're growing up with a psychiatric disorder. But we have another saying around the office. "Yes, there are risks to treatment. But there also risks to not treating." In the end, we must weigh the risk with the reward.View Comments | Add Comment
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