The Child Mind BlogBrainstorm
Autism Tied to Gene Mutations
April 5, 2012 Caroline Miller
In three new studies published yesterday in Nature, researchers at three different institutions identified gene mutations that are tied to autism.
The studies focused on children on the autism spectrum whose parents do not have autism. Researchers were looking for mutations that occur spontaneously in egg and sperm cells in genes that affect brain development. These mutations, called de novo, are said to occur more frequently as parents age.
What's the takeaway from this breakthrough?
Obviously it helps researchers learn more about how autism develops. But it also strengthens our understanding that autism, like cancer, comes in many different forms. And identifying a specific gene mutation that is linked to some children with autism helps identify a subset of people on the spectrum.
As Dr. Evan Eichler, a professor of genome sciences at the University of Washington and one of the study authors, tells Bloomberg, "We've identified a subset to study more intensely, and we could apply therapies if there are any down the road." Since kids on the spectrum vary so dramatically in their symptoms, he notes, it could be helpful for parents to connect with others whose children share a similar pattern of developmental delays.
And Dr. Matthew State, a Yale neurogeneticist and psychiatrist and the author of another of the studies, underscored how big a breakthrough this is: In 200 children with autism diagnoses, his researchers found two unrelated children with autism who had de novo mutations in the same gene—and nothing similar in those without a diagnosis.
"That is like throwing a dart at a dart board with 21,000 spots and hitting the same one twice," Dr. State told the New York Times. "The chances that this gene is related to autism risk is something like 99.9999 percent."
It's also significant that more mutations were found in children with older parents, especially fathers, who, Dr. State said, contributed four times the mutations that mothers did.View Comments | Add Comment
New Short-Term Therapy Helps Kids Deal With Trauma
April 3, 2012 Caroline Miller
There's good news for children who have had a traumatic experience (and for the caregivers who watch over them). A study released today found that a brief therapeutic intervention greatly diminished the symptoms of post-traumatic stress kids often develop after experiencing abuse or violence or witnessing something deeply disturbing.
After just four to six structured sessions with a trained clinician—one with parents or caregivers, one with the child, then two sessions with them together—children who had suffered sexual abuse or violence were 73 percent less likely than those in a control group to have later developed partial or full-blown PTSD.
During each session, a trained counselor offered reassurance and support, and measured progress. Dr. Steven R. Marans, professor of psychiatry at Yale and director of the Childhood Violent Trauma Center at Yale University, explains how the new approach works, and why it's so important to include caregivers, not a traditional part of trauma treatment:
When children are alone with and don't have words to describe their traumatic reactions, symptoms and symptomatic behaviors are their only means of expression. And caregivers are often unable to understand the connection between the traumatic event and their children's symptoms and behaviors. To heal, children need recognition and understanding from their caregivers.
The current study, which included nearly 500 children, corroborated the results of an earlier study of 176 kids. Evaluated three months later after the treatment, those who received the intervention were 54 percent less likely to develop symptoms of PTSD in children, including sleep disturbances, intrusive thoughts, depression, anxiety, tantrums or feelings of helplessness or hopelessness.
Click here for a story by Dr. Steven Berkowitz, one of the coauthors of the earlier study, about what makes an experience traumatic for a child.View Comments | Add Comment
Autism Month: Awareness to Acceptance
April 2, 2012 Caroline Miller
Today is the start of the fifth annual Autism Awareness Month, packed with events and publicity about autism. But for some activists who've been on the front lines for some time, the frontier has moved beyond "awareness" to "acceptance." In fact there's an alternate Autism Acceptance Month movement.
Steve Silverman, a Wired reporter who has a blog called NeuroTribes, explains the shift from "awareness" to "acceptance" this way: "The lion's share of the money raised by star-studded "awareness" campaigns goes into researching potential genetic and environmental risk factors—not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by."
Noting the recent CDC report that one in 88 children in a sample of 8-year-olds were found to have autism spectrum disorder, he writes, "When kids on the spectrum graduate from high school, they and their families are often cut adrift—left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities."
For other passionate explanations of why advocates think it's important to "take back" April, check out a site called Autism Acceptance Day. Paula Durbin-Wesby, an autistic adult, explains what it means to her this way: "Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not."
In her essay she hints at something that is becoming a movement in itself, to see neurodiversity as a civil rights issue.
You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you. If stimming helps you get through the day, you have the right to do it. If making eye contact is a goal of yours, go for it! You get to choose. When others choose for you (in the case of children or in some support roles) let it be not in the vain attempt to "normalize" you, but to help you be your best, Autistic, self.
We'll be hearing a lot more about this in the days and weeks ahead, and we'll feature here some of the excellent pieces that are on offer as the month progresses.
For starters, check out the piece by Beth Arky on childmind.org about parents of autistic children struggling to find, or invent, independent but supported living situations for their children "aging out" of educational services. With an estimated 200,000 coming of age in the next 5 years, we see it as the next big frontier in autism.
With this in mind, Thinking Person's Guide to Autism today posted the first of a series of "Slice of Life" conversations with "autistics of all ages" that will be running all month. First up is Aisling Alley, a budding anime creator and Nintendo fan. "We'd like to help our non-autistic readers get to know autistics as people who have interesting, complicated lives," writes Shannon Des Roches Rosa, "and who are as diverse and varied as any other random population united by a label."View Comments | Add Comment
1 in 88 Kids Found to Be on Autism Spectrum
March 29, 2012 Caroline Miller
Stunning new figures released today by the Centers for Disease Control show the prevalence of autism spectrum disorders in a sample population of eight-year-old children in 2008 soaring 23% over the prevalence in the same sample in 2006, and a whopping 78% over the number found in 2002. In the new report, one in 88 children was estimated to meet the diagnostic criteria for an autism spectrum disorder in 2008, compared to one in 110 in 2006 and one in 155 in 2002.
The report was based on a survey of medical and other records of children in 14 sites across the United States, whether or not they had received a diagnosis of an ASD. The CDC stressed that the sample was not nationally representative. And it's not known, the CDC writes, whether these increases reflect increased awareness and better assessment or true increases in the prevalence of ASD symptoms. We asked two of the Child Mind Institute's psychiatrists to weigh in on what it means.
"It would be a misinterpretation to say that this study shows the number of new cases of autism are on the rise," says Dr. Michael Milham. "What it highlights is that we were obviously missing kids, and underestimating the magnitude of the problem. It shows the need for a continued focus on better monitoring. We need to be looking deeper for cases that are falling through the cracks."
There are many limits to this kind of surveillance study—they're highly dependent on what doctors and other experts decide to include in their charts. But it shows, as does the preponderance of evidence over the last few years, that there are a lot more children than we thought there were somewhere on the spectrum, adds Dr. Ron Steingard.
It's no surprise that within the sample, two of the groups that showed the largest increase were black and Hispanic children. "Obviously no one was looking carefully enough at these populations," notes Dr. Steingard.
Another group that showed a particularly large increase was children who meet the criteria for an ASD without also exhibiting cognitive impairment. "A generation ago the only kids who would be diagnosed with autism had what I call autism plus—they also had significant cognitive impairment," says Dr. Steingard. "Once we understood that you could have the core symptoms of autism without mental retardation, it opened the door to a larger population who still had very important social and interpretive impairment."
What worries Dr. Steingard is that the study might prompt a backlash—that someone looking to cut funding will use it to make charges of overdiagnosis or misdiagnosis. That would leave people with autism and their families in the lurch. "These kids need intensive interventions to do well, and their families need relief and respite."
Both doctors note that we need to keep getting better at recognizing autism spectrum disorders, because the earlier the diagnosis and intervention, the better the prognosis.View Comments | Add Comment
'Bully' Film Now Unrated, So Who Will See It?
March 28, 2012 Harry Kimball
The documentary Bully comes out on Friday, and after advocates, celebrities, and the Weinstein Company could not convince the MPAA to soften the R rating it received, the company will likely release it without a rating. How theater owners treat the movie now is anyone's guess, but since everyone has heard about the struggle and the rating, there remains the possibility that kids will have a hard time seeing it. The president of a movie theater industry group tells the AP that theaters might decide to treat the unrated Bully like an NC-17 film, meaning that the young people who could have seen it with a parent when it was rated R wouldn't be able to see it at all.
That is unfortunate, as Dr. Al Ravitz wrote last week, because children have a lot to gain from seeing an unvarnished portrait of what bullying in our schools can do. Katy Butler, the student whose petition to change the rating has garnered more than 475,000 signatures, makes the argument for the movie quite nicely. "The MPAA said they wouldn't drop the R rating unless this language was removed," she tells the Associated Press, referring to a handful of curse words that raised the ire of the rating panel. "But nothing can remove it from the halls and playgrounds of schools where bullied students hear it each day, except education and exposure."
Meanwhile The Hunger Games, a film which has its own valuable lessons for kids, racks up record profits in part by virtue of its PG-13 rating. That movie, a dystopian fantasy, depicts the murder of several children. But the documentary that shows the (mostly) emotional violence real kids do to each other is considered inappropriate for them to see because it's too realistic about the language teens actually use. With no rating, and the R hovering over it, it will take courage on the part of parents and educators to let kids see it—and, of course, to see it themselves.View Comments | Add Comment
Are Kids With ADHD Dangerous Drivers?
March 27, 2012 Caroline Miller
The issue of teenagers with ADHD behind the wheel gets the spotlight in the New York Times today. The story corroborates something experts in ADHD have been saying for a long time: that the extreme distraction and impulsivity that are the symptoms of ADHD are a dangerous combination on the road. Kids with ADHD get in more accidents—and more serious accidents—than other teenage drivers.
The Times story focuses on the challenges these kids face learning to drive and passing the driver's test. Experts suggest that they wait until they are a little older and more mature before becoming a driver. Other recommendations include extra practice, professional instruction, installing a temporary passenger-side brake in the family car, and having the teenager learn "in a car with a manual transmission, which gives the attention less time to wander."
Curiously, the recommendation that seems to me most important (and obvious) gets only a passing mention more than half way through the story: medication. The writer notes that experts recommend that drivers with ADHD take medication, to help focus attention and rein in impulsivity, and links to a study that shows stimulant meds like Ritalin reduce the risk of accidents. He quotes Dr. Russell Barkeley, the ADHD expert who's done research on teenagers and driving, saying "Medication should not really be optional."
We're glad to see that the writer included this, because it's fashionable these days to treat ADHD meds as controversial, as if the benefits were not well-documented. And indeed, some commenters immediately attacked the writer for assuming all kids with ADHD are bad drivers and all need medication. Others attacked what they saw as a suggestion that people with ADHD shouldn't be allowed to drive. I don't think anyone is suggesting that. The point is rather that attentiveness and good judgment are key competencies in driving, and if you need medication to muster them, you should take medication to drive—just as you'd take medication to control diabetes if you want to drive, since not being medicated when you have a chronic condition can make you dangerous on the road.
We'll give the last word to a commenter named Caitlin, who speaks from her own experience: "Thanks for bringing this up. My impression is that many people have never stopped to consider how ADHD affects you when you drive. I personally do not drive without medication. I'd always been a very good, cautious driver...until I took a 6-month drug 'vacation' and had three minor accidents. Lesson learned, but at a cost. No accidents or tickets before or since."View Comments | Add Comment
The Vogue Hunger Games
March 27, 2012 Rachel Ehmke
If you Google "worst Vogue article ever" right now the first several pages of search results will lead to the story Dara-Lynn Weiss wrote about her daughter Bea's struggle with childhood obesity. Weiss was understandably alarmed when she learned that her seven-year-old daughter was considered obese. She knew something had to be done, so she consulted with a specialist and put her daughter on a diet. So far, so good. With childhood obesity rates booming in America, Weiss's story should have been a sympathetic one.
But it turns out that the story in Vogue was about more than just a concerned mom who wanted to help her daughter loose weight. Weiss has serious problems with her own body image and eating habits, and she is upfront about them. She writes:
I have not ingested any food, looked at a restaurant menu, or been sick to the point of vomiting without silently launching a complicated mental algorithm about how it will affect my weight.
She's struggled with food all her life, she says, and tried every fad diet around. "Who was I," she asks, "to teach a little girl how to maintain a healthy weight and body image?"
Unfortunately, being self-aware enough to realize that she isn't the best role model for her daughter didn't stop her from taking charge, projecting her own obsessiveness on Bea, and proudly becoming the Tiger Mom of weight loss. She enrolled Bea in the child obesity program "Red Light, Green Light, Eat Right," but they ignored the rules: While Red Light, Green Light focuses on empowering children and tells parents not to humiliate their kids in public, Weiss describes "heated public discussions" and "awkward moments at parties" when she publicly chastised Bea.
I once reproachfully deprived Bea of her dinner after learning that her observation of French Heritage Day at school involved nearly 800 calories of Brie, filet mignon, baguette, and chocolate. I stopped letting her enjoy Pizza Fridays when she admitted to adding a corn salad as a side dish one week. I dressed down a Starbucks barista when he professed ignorance of the nutrition content of the kids' hot chocolate whose calories are listed as "120-210" on the menu board: Well, which is it? When he couldn't provide an answer, I dramatically grabbed the drink out of my daughter's hands, poured it into the garbage, and stormed out.
Weiss complains that everyone around her was non-cooperative if not horrified: "You're making her crazy!" "You should let her eat what she wants!" She's still growing!" But she clearly dismisses her critics as merely too faint of heart to do the right thing for the child. "Everyone supports the mission but no one seems to approve of my methods." That would include Dr. Joanna Dolgoff, the founder of the Red Light, Green Light program Weiss dropped out of, who told an outraged blogger at Jezebel, "The program has to be run by the child, and the truth is that making a child feel bad only causes problems. It's not going to help with weight loss, and it's definitely not going to help the child emotionally."
What did Bea get out of it? After a year of dieting, Bea lost 16 pounds and grew two inches. As a reward she got several new dresses, a feather hair extension, and the Vogue photo shoot that accompanied her mother's article. Weiss says that her daughter is proud of what she's accomplished, and she likes to think that while Bea will always have to watch her weight, she has built "the foundation to make these choices in an educated and conscious way." Legions of critics, of course, have been quick to note that what she's probably given Bea are the foundations of her own erratic, highly emotional relationship with food. And, after a year of complaining that she was hungry, Bea has likely also learned to equate being starved with being thin, something many weight experts consider a recipe for long-term failure in weight control.
It's certainly not unusual for the most well-meaning of parents to inadvertently pass on their struggles to their children. Eating disorders and poor self-esteem are particularly contagious, and modeling good health and comfort in your own skin is essential for mothers of young girls. Of course, modeling a healthy attitude is a lot easier if you actually have a healthy attitude. Obviously having a daughter skinny enough to look good in Vogue is a huge source of pride for Weiss-pride that may have blinded her to the fact that readers far and wide would see this story a train-wreck of ambitious parenting. But the book deal we hear is in the offing may alleviate the pain of the abuse she's getting from all sides.
We have to give Bea, in her 8-year-old wisdom, the last, sad word: "I'm not a different person just because I lost 16 pounds," she tells her mom. "Just because it's in the past doesn't mean it didn't happen."View Comments | Add Comment
The After-Effects of a Mother's Murder/Suicide
March 26, 2012 Caroline Miller
The death of George Hodgins, a 22-year-old man with autism, at the hand of his mother early this month, caused a great deal of anguish—to those who knew them, of course, but also to many who find murder by a parent and protector to be the cruelest of tragedies. But it's still causing anguish, and anger, weeks later, for a different reason: because the responses to the murder/suicide have touched on very important and emotional issues within the community of people whose lives are affected by autism.
When parents kill children, we tend to immediately look for a reason for such a shocking crime. Surely it was an act of extreme mental illness, of psychosis. We look for the stressors that might have driven someone to do such an appalling thing—in this case the responsibility of caring for a non-verbal child with autism was identified as something that might have driven Elizabeth to a melt-down. A reason isn't necessarily an excuse, obviously, but it can sound like one, and it can be meant as one.
This is the way it was interpreted by many in the autism community, as was very articulately summarized by Shannon de Roches Rosa in an impassioned piece last week in which she reacts with rage to the media coverage implying that George Hodgins was the "cause" of his mother's homicidal breakdown, and that his murder was somehow less disturbing because of his severe autism. "Mainstream media reports have focused almost exclusively on how difficult life was for his mother," she writes, "framing parents killing disabled children as an understandable tragedy, while parents killing typical children is considered a preventable tragedy."
Shannon is no stranger to the challenges George Hodgins' mother faced. "I do not lack empathy for Elizabeth Hodgins. How could I? I am her: by all accounts, George was the 22-year-old version of my son Leo." But she makes a very compelling argument for what some in the autism community are calling a civil rights issue: that we simply do not recognize or acknowledge that people with disabilities are fundamentally equal to other people. "We live in a culture that conditions us to devalue, fear, and dismiss children like George and Leo, that sees them not as people with rights but as problems—ideally, someone else's."
Tough as it might have been for his parents, she writes, "George had the same right to live out a full happy life as any mother's child. His autism did not make him imperfect, unworthy, or less of a person than a neurotypical child."
Over at Thautcast, Landon Bryce, who also wrote passionately about the murder, and the perception that it was "on some level justified," is now responding to critics who felt his comments in defense of George Hodgins' rights to "personhood" were aggressively anti-parent. The trigger for this accusation was a provocative graphic he created for a vigil for George in the Bay Area with a text that read: "Remember disabled people murdered by caregivers and family members." The response comes in the form of two videos in which he does a good deal of soul-searching, wondering out loud whether his aggressively activist voice has become off-putting, like some of the more strident voices of the feminist movement in the 1970s that, he recalls, came across as anti-male.
Landon thinks he's perceived as more extreme in his attitudes than he really is. "I think this comes from the fact that it's unusual to hear an autistic person talking about himself as though he expected to be accepted as autistic, professional, and equal, all at once. That's just not comfortable for people." He admits that there are other factors—"I'm also obnoxious"—but he notes that when his partner accuses him of being too extreme in representing one point of view, "It's hard for him to recognize how little this point of view I'm representing is heard. There's just not a lot of us out there saying that autistic people should be treated as equals."
There it is again, and we're going to be thinking more and more about what that means, I predict. For his part, Landon ends with this: "I'm going to encourage myself to really try to indulge anger less, to really try to look at somebody who might want to be my friend and help, and, rather than being angry about things they do that I think are disrespectful, to try to find the parts of people that want to help." Amen.View Comments | Add Comment
New York Continues to Ignore People with Severe Developmental Disabilities
March 23, 2012 Rachel Ehmke
Yesterday the Times continued its searing expose of the New York state agencies that provide residential care to people with developmental disabilities. For those new to the story, the charges of mistreatment, neglect and fraud leveled against the state homes and institutions include abusive caregivers, unexplained injuries, and an appalling number of unexplained deaths. Danny Hakim, who has been covering the story for the Times, notes that in 2010 the number of abuse accusations at some facilities "outnumbered the beds."
Hakim's latest piece chronicles the report commissioned by Governor Cuomo to investigate the rampant negligence. A draft of the report obtained by the Times outlines serious problems, including the "regulatory maze" that obfuscates the state agencies' obligation to respond to allegations of abuse. The official investigation documented a system-wide failure to report incidents and properly contact law enforcement as well as a hiring process that does not screen out people with a history of abusive behavior. Even worse, the facilities continued to employ people found responsible for sexual and physical abuse of residents, sometimes choosing to transfer them to different locations instead of terminating their employment. Most importantly, the report also recommends changes to state laws and regulations, starting the vital conversation on how to prevent and properly respond to incidents of abuse.
This should be the beginning of widespread and sorely needed reform, but the governor has not released the report to the public, although drafts reportedly began circulating in October. According to the Times, people "frustrated by the delay" gave a bound copy drafted in December to the newspaper. (The paper has put the draft online here.)
Senator McDonald, chairman of the State Senate's mental health committee, wrote Governor Cuomo a letter this month asking him to release the report "so that we can begin working towards enacting long overdue protections and safeguards." Michael Carey, the father of a severely autistic 13-year-old boy named Jonathan who died in the charge of negligent caretakers at the facility where he lived, is also speaking out. Mr. Carey told the Times, "It's gross negligence that the report has not come out, and it's beyond frustrating. The reforms to date are baby steps towards monster problems."
The report is partially titled "The Measure of a Society" and begins with a quote by Dr. Francis Peabody, who famously said, "the secret of care of the patient is in caring for the patient." But so far the handling of the report has been a disturbing testament to the scarcity of our culture's compassion for one of our most ignored and vulnerable populations.View Comments | Add Comment
The UCLA Study Parents Are Worried About
March 19, 2012 Rachel Ehmke
In 2002 a group of researchers from UCLA started making their own reality show. The team followed 32 families in Southern California for a week, capturing everything they did on video. The researchers—a group of anthropologists, sociologists, psychologists and archaeologists—had previously studied family life in Samoa and Peru, and now they wanted to examine the American middle class.
The research for this study was done 10 years ago, and the New York Times actually covered it back in 2010, but studies like this one keep making waves. This week the Wall Street Journal wrote about it, and the response in the blog world was intense. Lisa Belkin over at Huffington Post somewhat acidly called it "the scientific analysis of what makes American children so self-centered." To be sure, the picture it paints of the American child (and his parents) is bleak. One of the more galling things caught on video is an eight-year-old ordering his father around:
Ben sprawled out on a couch near the front door, lifting his white, high-top sneaker to his father, the shoe laced. "Dad, untie my shoe," he pleads. His father says Ben needs to say "please."
Sadly, it would seem that Ben (and his father) were no exception. The kids on tape would ask parents to cut their food or get them silverware even though they were perfectly capable of doing these things for themselves. Chores became negotiations. Parents would immediately intervene if they saw their child struggling to complete a task. (Meanwhile, according to an anthropologist at UCLA, a five-year-old girl in Peru would be busy "helping haul logs thicker than her leg to stoke a fire.")
One anthropologist who wasn't involved in the study called it "the richest, most detailed, most complete database of middle-class family living in the world. It shows us life as it is actually lived."
Well, yes and no. While it's certainly exhaustive in documenting one week in the lives of several American families, it's much too small to extrapolate any real scientific conclusions about American parenting. But the portrait it paints is painfully familiar. The kids in the study, like most kids, were trying to push whatever boundaries they were given. The adults sounded like good and committed parents who seemed, unfortunately, reluctant to push back. In fact we know that kids thrive with clear boundaries, and firm parental figures comfortable asserting authority.
But we want to add that when our children and young adults are accused (and they are frequently) of being selfish, callous, entitled and generally helpless, their weaknesses are greatly exaggerated—and their strengths underestimated. Ben of "untie my shoe" infamy is now 18, and if he isn't in college yet then he probably will be soon. Despite being the poster child for what's wrong with American kids, we guess he, and the others studied, turned out a lot better than this snapshot would lead you to believe. Despite their parents' protective impulses, reality has a way of intervening and toughening kids up.View Comments | Add Comment