The Child Mind BlogBrainstorm
A Child's Illness, a Family's Crisis
Sept. 12, 2011 Caroline Miller
"My two hopes for Jani are very simple: I want her to be alive, and I want her to be able to find moments of happiness in the day, even if every day isn't happy, that she can find some happiness. That's it. That's all I want for her."
It may sound shockingly modest, but the speaker is Michael Schofield, the exhausted father of January, a bright, beautiful 9-year-old girl whose psychiatric disorder, which prompts violent, uncontrollable moods, including efforts to kill herself, has made it impossible for her to play with other children, go to school, or live together safely with her younger brother. After a lot of trial and error, medication has helped some with the symptoms of what has been diagnosed as child-onset schizophrenia, but her nightmarish imaginary friends still hold sway.
The reason to read this story, in the Los Angeles Times, is not just to understand this rare but debilitating disorder—"I don't think I've seen anything more devastating in all of medicine," says one neurologist leading a study—but to witness the extraordinary lengths Jani's parents have had to go to get help for her, and a solution for their family. The most extraordinary: After Jani spent four months in a hospital psychiatric ward, and no residential facility would take her, Michael and Susan gave up their two-bedroom apartment and rented two one-bedrooms in the same complex, so that one parent could live with Jani and the other with her younger brother. They take turns. They're broke and, not surprisingly, the marriage is fraying. They deserve better, and so does Jani. See them all on video here.Read More
'Idol' Fave James Durbin's Debut Set for Nov.
Sept. 7, 2011 Beth Arky
James Durbin, the American Idol Season 10 finalist with Asperger's and Tourette's who became both a fan favorite and champion to the special-needs community, has announced that his much-anticipated debut CD will be released in November. He let the world know in a very Durbin-like manner, on Twitter: "FINALLY!!!!! THE DURB HAS BEEN SIGNED TO WIND UP RECORDS!!!!!"
The 22-year-old rocker—noted for his talent, showmanship, and conviction to bring heavy metal to the hit show—quickly emerged as a role model for the autism, Asperger's and Tourette's communities when he shared his diagnoses and the years of bullying he overcame, thanks in large part to his participation in music and drama programs while growing up in Santa Cruz.
Durbin also shattered stereotypes that those on the autism spectrum lack emotion and the ability to form strong, loving relationships. From the start, he cried easily on the show, especially when talking about how much he missed his fiancée Heidi and their young son, Hunter. Durbin has named fellow Idol contestants Stefano Langone and Paul McDonald as his best man and groomsman, respectively.
At New York's Wind-up Records Durbin joins top-selling acts like Evanescence and Creed. "We loved James on Idol," said Wind-up Entertainment CEO Edward Vetri. "We thought he was the standout performer from this season. His passion for rock music made him a natural fit."
Right after Durbin's shocking fourth-round elimination, Daughtry producer Howard Benson advised the singer to step back from his plans to do a metal album and tap into his huge built-in Idol audience. It would seem Durbin is following the path laid out by fellow rocker and fourth-place Idol finisher Chris Daughtry. His band has gone on to huge commercial success, proving that you don't have win Idol to win big—or, in Durbin's case, to be a hero.Read More
When "Back to School" Means Back to Homeschool
Sept. 6, 2011 Caroline Miller
Sarah MacLeod is a mother of two who blogs about her adventures in homeschooling her two boys, who she describes as "twice-exceptional"—they are both gifted and learning challenged. Her blog is terrific because she's a good storyteller and she's honest about how tough it can be to stay out in front of boys with such extreme strengths and weaknesses—issues many parents will find familiar, even if home schooling sounds like your worst nightmare. Now 14 and 10, MacLeod's boys are capable of learning at amazing speed, she notes, but also of losing their way just as fast. Of last year she writes:
"Both boys were plagued with executive function challenges, with my older revealing how much he really needs assistance with planning and scheduling and my younger struggling with compliance and anxiety (he's poor at the compliance and good at the anxiety)."
MacLeod is an ambitious and thoughtful and determined home-schooler, retooling her strategies and her thinking constantly to work better with the boys, who between them have been diagnosed with Asperger's, ADHD and dysgraphia. What she's undertaken is more intense than a lot of us could handle, but it's also very familiar—the flexibility and improvising and correcting course as you go along that's necessary to do well by (and live well with) children with psychiatric and learning disorders. She's starting the home-schooling year today, and we wish her and the boys our best.Read More
Why So Quick to Blame Video Games?
Sept. 3, 2011 Matthew McGowan
"No one at any major news outlet understands the third variable problem." This is Erin Robinson, a neuroscience researcher turned independent game developer, explaining why news coverage that ties video games to acts of violence by adolescents is chronically flawed. For us non-statisticians, what she's saying is: "Just because two events are correlated, one does not necessarily cause the other."
In her fun and fascinating article, "The Top 10 Weird Children Of Video Games and Neuroscience," Robinson argues that most media sources that link video games to attention problems and/or violent behavior are going for the sensational headline and not the truth of (or at least the latest research on) the matter.
Take the widespread vandalism and looting in the UK last month: News sources quoted everyone from police constables to pop stars (including former Oasis frontman Noel Gallagher) blaming it, at least in part, on the likes of Grand Theft Auto.
So, too, with coverage of Gevin Prince, a 15-year-old boy from Georgia recently charged with killing his great-grandmother, and injuring his grandmother, with a sword. A typical local newspaper headline read: "Authorities: Video Game Dispute Motive for Great-Grandmother's Death." As it turned out, video games had nothing to do with this horrible event. When the Atlanta Journal-Constitution took a closer look, the paper found out that Gevin has a history of mental illness, and his family had attempted repeatedly to get him the care he—and they—obviously needed, as he gradually spiraled out of control.
I don't consider myself anything like an apologist for video games. Despite the fact that I've been playing them for 30-plus years now (or maybe because of it), I've got my own ambivalences. But when news sources choose to go the sensational route with these stories, they're doing more than failing to grasp the third variable problem. Ultimately, they're lazily and cynically scapegoating a form of entertainment at the expense of addressing an alarming and urgent reality—the truly tragic state of mental health care for children and adolescents in one of the most developed countries in the world.Read More
'Lion King' Caters to Autism Community
Sept. 1, 2011 Harry Kimball
In what appears to be a first, a Broadway show is setting aside a performance and tweaking sound levels, special effects, and the theater lobby to accommodate a sold-out crowd of families with children on the autism spectrum. The performance of "The Lion King" on October 2 has been orchestrated by the Theater Development Fund, a New York nonprofit.
Disney and the TDF have made some guesses that they hope will make the show more enjoyable for people with autism, like toning down sound cues and providing bean bag chairs. "But no one has been able to tell us what the effect will be of having around 600 children and adults on the autism spectrum in the theater at the same time," a TDF executive tells the New York Times. Another advocate and watcher was a little more optimistic when speaking with the AP. "Maybe they're not ready for this," she says. "But that doesn't mean we stop trying."
And even if no one knows what will happen when the curtain comes up, there is evidence that quite a bit of thought has been put into this trial run. For instance, as the AP points out, the TDF worked with Autism Speaks to develop a Social Story to post to their website. These are like first-person run-throughs that allow children with autism to get accustomed to new experiences and routines ahead of the actual thing, and have proven tremendously helpful in expanding kids' horizons.
"If I want to clap, I can," reads one section. "I don't have to clap if I don't want to. If the clapping is too loud, I can cover my ears, wear my headphones, or hold my Mommy or Daddy's hand."
Click here to read more about autism in all areas of society: in entertainment, at school, at home, and in the news.Read More
New Jersey Gets Super-Tough on Bullying
Aug. 31, 2011 Harry Kimball
Tomorrow is the deadline for New Jersey public schools to comply with the Anti-Bullying Bill of Rights, a new law that "is considered the toughest legislation against bullying in the nation," according to the New York Times. Among other requirements (the list runs to 18 pages) schools must have designated "anti-bullying specialists," employees must promptly investigate and write reports about every instance of suspected bullying at or after school, and every school will report results to the state government.Read More
Reaction has been mixed, to say the least. "Now we have to police the community 24 hours a day," an administrator complains to the Times. "Where are the people and the resources to do this?" What's more, many teachers and other school employees are afraid that failing to live up to the letter of the law could now result in lawsuits. These appear to be legitimate complaints, and we hope educators don't look at the new initiative and think, "I need to cover my back or I'll get sued." Because the real impetus behind this move is kids who are in distress and deserve help.
As many people have commented online, bullying has always been there, but teachers and even other students have too often turned a blind eye. The new law makes it a requirement that teachers become involved, and stresses to students that doing nothing is as bad as being a bully yourself. A science teacher puts the new requirements in admirable perspective. Whether an incident that's investigated turns out to be bullying or not, when you take a chance to look into it, "you're communicating with the kids," he tells the Philadelphia Inquirer. "If you're wrong and you overreacted, it will still be a positive outcome."
We don't know if the new staffing requirements will work out, or if the statewide reporting system will produce results, or if this will result in a flurry of litigation. But a valuable message has already been sent: Don't turn away.
Another Angle on Stigma: Epilepsy in Africa
Aug. 30, 2011 Harry Kimball
A disease of the brain, no fault of the person who struggles with it—and yet it sparks fear, ostracization from family, schoolmates, coworkers, groundless and sometimes cruel attempts at treatment when sound, evidence-based medicine is available. This is the story of epilepsy in present-day Sierra Leone as described in the New York Times; but it is also the story of mental illness in much of the developed world over the past 100 years, a story that unfortunately has not reached its conclusion even today.
The trials and tribulations of people in the United States struggling with psychiatric and learning disorders generally pale in comparison to people with epilepsy in Sierra Leone, one of Africa's poorest countries. One woman—who has happily flourished and manages her seizures with the help of phenobarbital—was forced as a teen to inhale steam for hours in the hope that the demons inside her would leave. Later she was made to drink kerosene and almost died.
When it comes to proper treatment, which is becoming available, "the first hurdle is whether or not the family believes that this is an illness that can be treated," Sierra Leone's only neurologist tells the Times. The stakes in the country are high, but we can't help but draw a parallel to the mental health crisis here. (And we can only imagine that the mental health crisis in Sierra Leone is heartbreaking.) We don't lobotomize people anymore, and we don't burn people at the stake, but we do allow kids with autism to die in draconian residential care settings, and we do flood the prison system with people who desperately need professional help, and we do deny treatment, in effect, because we don't "believe" in mental illness.
"I was ashamed," says one Sierra Leonean woman who dropped out of school because of her epilepsy. Sadly, that sounds all to familiar even here.Read More
Irene 'Wreaks Havoc' in Special-Needs Homes
Aug. 29, 2011 Beth Arky
The fact that Hurricane Irene didn't live up to doomsday expectations provides little solace for those dealing with the worst of the storm's physical aftermath. The same holds true for special-needs parents exhausted after their extreme weekend. While the wind and rain lashed outside, many were on hurricane alert inside their homes, too.
Certainly, millions of parents up and down the Eastern Seaboard had to contend with bored, quarrelsome children and teens cooped up over the seemingly endless weekend. But kids with psychiatric diagnoses including anxiety, ADHD, ODD and autism often have an extremely hard time with a lack of structure and a change in routine—not to mention far less physical activity—making them prone to meltdowns.
During the course of the storm, A Diary of a Mom checked in on Facebook with other parents of kids on the autism spectrum: "I pray that if you're in Irene's path you've managed to stay safe. That storm has wreaked havoc with everyone, but I'll be damned if our kids haven't gotten the worst of it.
"From turbo-charged anxiety to hypersensitivity to changes in pressure, our poor kiddos take a beating when any major weather system moves through—whatever it might be," wrote Mom, whose 8-year-old daughter has autism. "Add in a lack of power (which is barely explainable at best to kids with difficulty processing abstract concepts) and throw a monkey wrench into our coveted routines and well, it's just hours of fun for everyone ain't it?"
There is anecdotal evidence that changes in barometric pressure worsen the impulsive behavior of children with autism and other diagnoses, including ADHD. And according to the Canadian Journal of Psychiatry there is at least enough data to warrant further investigation. Meanwhile, for more on Mom's weekend, as rearranged by Hurricane Irene, click here.Read More
These Celebs Have All Battled Depression
Aug. 25, 2011 Caroline Miller
We just discovered on iVillage an amazing slideshow of 44 celebrities who've battled depression. It's fascinating who's on the list, since (obviously) it belies the stereotype that people with mental illness are underachievers. But it's also compelling to read the details the writers have pulled together of how/when these actors, musicians, writers and world leaders, were felled by it. Some went into profound depression after the death of a parent (Jon Hamm). Several had post-partum depression (Gwyneth Paltrow). Some had an eating disorder (Christina Ricci). Some became drug addicts (Russell Brand). It's stunning, and disturbing, how many said they seriously considered or attempted suicide (JK Rowling, Tim Gunn, Halle Berry, Owen Wilson, among others). It's also interesting to see what they say about what helped alleviate depression: cognitive behavioral therapy, medication, talk therapy, yoga, acting, songwriting—you name it, someone has found it helpful. Of course we think being honest about how you are feeling is the first step, and it's great that so many well-known people have gone public with their struggles.
Marriage Patterns and Autism Diagnoses
Aug. 22, 2011 Caroline Miller
In a provocative piece in this week's Time magazine, Judith Warner reports on what's called the "assertive-mating theory"—the proposition that the explosion in diagnoses of autism over the last couple of decades could be the result of many more couples who both have some autism spectrum traits, but not a full-blown disorder, getting together and having children. The proponent is Simon Baron-Cohen, Britain's leading autism researcher, an outspoken iconoclast who is something of a pop-science hero and, incidentally, the cousin of Sasha Baron-Cohen.
The theory goes like this: As more women began getting math and science degrees in the 1970s and 1980s, and more people starting meeting their mates at school or work, and the dot-com boom made people who are "high systematizers" more attractive, even if they had limited social skills, it follows that more people with some autistic traits are connecting with others who are "not only like-minded but like-brained." Ergo their offspring may show a higher incidence of full-blown autism spectrum disorder.
There is, of course, serious skepticism about whether there are enough couples made up of two "strong systematizers" to account for the boom in diagnoses, and there is a risk in blaming parents for "causing" their kids' condition. But Baron-Cohen's theory got a boost, Warner reports, from a Dutch study reported in June that found four times more autism diagnoses in an area known as the Dutch Silicon Alley than another without the concentration of high-tech industries.
Could this kind of social change be a contributing factor to the autism boom? The story is worth looking at—unfortunately, you can read it here only if you have a Time subscription. Otherwise, it's at the newsstand.Read More