The Child Mind BlogBrainstorm
Will the New Autism Diagnosis Cut Services for Children?
Jan. 20, 2012 Caroline Miller
Parents of children on the Asperger's end of the autism spectrum were already leery of the proposed changes in the way the disorder will be diagnosed in the next edition of the Diagnostic and Statistical Manual (DSM-V), to be finalized by the end of this year. Now many are up in arms, after news broke yesterday of a test of the proposed new criteria. Reanalysis of 400 current diagnoses concluded that many of those on the higher-functioning end of the spectrum would no longer be included.
As the New York Times reported the findings: "About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger's would not qualify; and 85 percent of those with PDD-NOS would not."
Diagnosis, of course, is the basis for treatment and, in the case of autism, support for services that thousands of parents depend on to help their struggling children.
And if that wasn't worrying enough, one of the authors of the analysis, Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine, made a stunningly flippant comment to the Times: "The proposed changes would put an end to the autism epidemic. We would nip it in the bud - think of it that way."
Dr. Volkmar's comment was presented in a misleading way in the Times story; he doesn't support the new criteria for DSM V and actually quit the committee in protest. But it accurately reflects a very real threat: people who use the difficulty of objectively defining autism, not to speak of other psychiatric disorders, as grounds for denying their reality.
It will take considerable time to understand whether this particular analysis is worth the panic it's causing. Dr. Catherine Lord, director of the Weill Cornell Medical College/ NY Presbyterian Hospital Institute for Brain Development, disputes these findings and notes in the Times that other analyses have shown that more people would be included under the new criteria.
There are both compelling reasons why the diagnostic criteria for autism are being worked, and legitimate fears that people who have a clear need for help may be excluded by the resulting redefinition. Hopefully this year will bring more conversation that includes people with autism, their families, and the medical establishment—not just academic dueling.View Comments | Add Comment
The Tic Epidemic of Le Roy, New York
Jan. 18, 2012 Harry Kimball
In a strange story that highlights attitudes about mental health, 12 female high school students in upstate New York have since the fall all come down with Tourette's-like symptoms, including verbal and motor tics. The authorities have ruled out infection and communicable disease, and have found no evidence of any environmental factor. Which led a doctor treating some of the girls to conclude that it's something called a conversion disorder, in which neurological symptoms manifest with no discernible medical or environmental cause. It's also called mass hysteria.
That possibility did not sit well with the girls or their parents, as evidenced by their appearance on the Today show yesterday. "I'm very angry,'' said one teen. "I'm very frustrated. No one's giving me answers.''
Dr. Gail Saltz, a psychiatrist who's also the Child Mind Institute health editor, acknowledged that conversion could be a possibility yesterday on the show, though she cautioned against diagnosing without a thorough examination. But she's been inundated with negative calls and emails and comments ever since.
People are distraught "at the mere idea that it could be conversion," Dr. Saltz says. "If you say it's psychological, people think it's not real, due to old stigma and shame. People are much more comfortable with things that are medical, with a blood test and a discreet treatment."
Dr. Saltz also says that many online commenters are convinced that there is a nefarious drug interaction to blame. "It's got to be either the flu shot or the Gardasil shot," she says, referring to the HPV vaccine that Michele Bachmann erroneously said caused the child of a friend to become mentally retarded.
This sort of thinking, Dr. Saltz notes, is closely related to the persistent but disproven idea that childhood vaccines cause autism. "For the public at large it would almost be more comfortable, because they can say 'I'm not getting that shot. I'm safe.'"
Dr. Saltz completely understands the parents' desire for a more solid diagnosis. "It's very frightening when your child develops any sort of movement disorder. You want a medical reason with medical treatment." But the fact is that whether the symptoms spring from chemical exposure, stress, or something else, they are still real. When we say a problem is psychiatric, we are still saying it is real. And treatable.View Comments | Add Comment
Parents Talk Pros and Cons of Integrated Classrooms
Jan. 17, 2012 Caroline Miller
Classrooms that combine special ed students and what are called, in the bureaucratic parlance, "general education" students are the big new thing in school districts all over the country. They're supposed to give children with learning challenges the extra support they need without isolating them from the mainstream. And they're also supposed to help kids get used to being around children who are different, to give them an opportunity develop empathy and learn the value of helping others, rather than, say, bullying or stigmatizing them.
We've heard many good reports from many parents of the 40 percent of kids who are on the special ed side, but have heard much less from the parents of the other 60 percent. Which is why it's great that Brooklyn mom and blogger Julie Rosenberg, one of the 40 percenters, thought to interview parents of gen ed kids in combined classrooms. It's not a representative sample, of course, but it has some interesting insights.
Basically the moms said that two teachers (one special and one general ed) for 25 kindergarteners, first, or second graders is better for everyone. "I feel like I won the lottery," one 60 percent mom says. "Having two teachers is great, especially when the kids are so young." The mother of a 60 percent first-grader says her son is thrilled because he gets more teacher-time than he did last year. "I asked him the first week, 'Do you notice the difference?' and he said, 'Oh, I don't have to wait around so long for help.' This year he gets way more attention."
But another mom notes that two teachers are needed because "there's lots of chaos in those kinds of classes." She notes that if you put "kids with behavior problems" in with other kids, some of the other kids will be incited to act out, too. What's interesting here, Rosenberg notes, is the assumption that there are more behavior problems among the kids with IEPs. While acknowledging that there are some, she says it's a stereotype that's not generally accurate.
She quotes another 60 percent mom to that effect: "I think a lot of people have a leftover idea of what the 'special class' was at their school growing up, and they are afraid of the stigma, but in my experience these past two years, the IEP kids are among the brightest in the class and most of the behavioral problems come from the gen-ed side."View Comments | Add Comment
Fox's 'Touch' Strikes a Chord
Jan. 12, 2012 Harry Kimball
It's difficult to evaluate the depiction of mental illness and developmental disorders in the popular media—people tend to have quite divergent opinions, and what's funny and true for one viewer can easily be offensive and fantastical to another. If the character with the supposed impairment can't talk or communicate in any typical way, then forget it; it's a free-for-all.
Yet Neil Genzlinger, writing in the New York Times, has found a way into the new Kiefer Sutherland television thriller Touch, in which the actor plays the father of Jake, a non-verbal boy diagnosed with autism. Genzlinger himself is the father of a daughter with Rett's syndrome, which (for a short while longer, most likely) resides next to autism in the Diagnostic and Statistical Manual under the heading of "pervasive developmental disorders." She can't talk, either. And while he is skeptical about some aspects of the show, Genzlinger can relate to what he sees as an honest depiction of parenting kids with extremely limited communication abilities.
You see, Jake doesn't really have autism—he has special powers. Creator Tim Kring tells USA Today the boy is actually "misdiagnosed." Or as he puts it to Genzlinger, "we wanted to have the ability as storytellers to float above reality a little bit. There's something special going on with this child, something metaphysical, almost supernatural."
This is reinforced in the pilot when a mystical Danny Glover tells Martin, Sutherland's character, that Jake "sees how it's all connected. It's a road map, and your job now, your purpose, is to follow it for him." Surprisingly, Genzlinger sees the glint of truth in this. "That paranormal-sounding assignment actually mimics the role that a parent of such a child assumes in real life," he writes, and eventually you "come to realize that the real task is to meet the child where she lives and decode what you can."
Here we have a not uncommon occurrence in the pop-culture milieu: even as the show floats "above reality a little bit"—or a lot—it means something very real for people dealing with challenges in real life. Genzlinger doesn't fully buy the show's soft-pedaling on autism. "Jake's disability may be a fantastical construct," he writes; and yet it strikes a chord. "The communication challenges are real."
"I'm eager to see how parents and people with autism feel about what the Touch press materials call a 'hopeful' blend of 'science and spirituality,'" Caroline Miller wrote when we first heard about the show. It seems like at least one found some truth.View Comments | Add Comment
Experiencing the ADHD Medication Shortage
Jan. 5, 2012 Harry Kimball
Over at the New York Times, Dr. Danielle Ofri offers an insightful look at the hotly debated—Is it real? Fake? An industry scheme? A DEA plot?—ADHD medication shortage. Adding to the frustration of fruitless visits to the pharmacy, she observes, is the humiliation that accompanies filling prescriptions that some people think you shouldn't have in the first place. Dr. Ofri is thinking about painkillers, anxiety medications, stimulants—drugs that come with a risk of dependency, she admits, but with a lot of other baggage besides. "The facts, myths and cultures around these medications are so complex, and so fraught, that there is never a sense of 'routine' when these medications are prescribed," she writes.
Dr. Ofri describes a patient, Amy, a well-educated professional mom who spends an inordinate amount of time scouring pharmacies for the Ritalin that helps her son succeed at school—and that she takes as well, a more common occurrence as parents recognize the symptoms in themselves. "We need our medication," Amy tells Dr. Ofri. When it is unavailable, she and her son have to deal not only with the symptoms but also with the embarrassment of scrounging. "Most often I'm left feeling shamed," she says, "like I'm a criminal in the attempted act of illicit behavior."
Who is responsible? Drug companies "raking in profits" by manufacturing an "artificial shortage" of cheap generics, as Dr. Ofri describes one theory? Or the DEA jealously guarding methylphenidate, the Ritalin ingredient that is also a Schedule 1 controlled substance? Whatever the real story, the truth on the ground is painful for families that benefit greatly from these medications. And just as the federal government can appear to telegraph smug disapproval of these medications with laws, so do pharmacists and even prescribing physicians when faced with patients who they suspect, maybe, don't really need it?
Dr. Ofri even sees this in herself, but she actively tries to be both prudent and empathetic. "Of course we must be alert for medication abuse," she writes, "but that in no way should diminish a respectful and compassionate manner. Shame and humiliation shouldn't be part of any aspect of medicine."View Comments | Add Comment
In Idaho, It's Teachers Vs. Computer Screens
Jan. 4, 2012 Harry Kimball
Add just a pinch of hyperbole, and we can describe Idaho as the first battlefield in the coming fight to the death between Teachers and Computer Screens. As Matt Ritchel reports in New York Times, that Western state is the first in the nation to enact a blanket policy of mandatory computer use by all high school students, who will all be issued laptops or tablets and required to complete certain coursework online. The details are hazy—frighteningly so, in fact, when you factor in all of the training and money necessary—but the rancor of Idaho teachers is crystal clear.
"This technology is being thrown on us," says teacher Ann Rosenbaum, who makes it clear that she is a Marine veteran and a Republican to disabuse anyone of the notion that she has what Richtel describes as stereotypical "union-happy liberal" complaints. "It's being thrown on parents and thrown on kids," she continues. Rosenbaum would prefer that she could use technology in the classroom when she wanted to and it was appropriate—like showing historical videos from YouTube, which she already does. Inundating the classroom with tech, with the suggestion that teachers facilitate the delivery of learning from the Internet, does not sit well with her.
And whatever the virtues of technology in school, which are many, the Idaho plan seems like it wasn't really thought through. When Richtel asks the governor Butch Otter how students will deal with all the bogus "facts" on the Web as they pursue their online-only coursework, the picture that emerges is not heartening. "There may be a lot of misinformation," Otter responds, "but that information, whether right or wrong, will generate critical thinking for them as they find the truth." Whoa! I thought that was what teachers were for.
In the end, it doesn't seem like Idaho is actually trying to eliminate teachers, though what the real motives are is unclear. (Some suspect officials received campaign donations from tech companies in exchange for pushing the law, which one opponent says seems "as if it was written by the top technology providers in the nation.") But the feeling that the traditional school experience is under attack is very real. "We can just get rid of sports and band and just give everyone a laptop and call it good," quips one teacher.
And that's the point—not that technology is bad or that it can't help kids learn. But more often than not when a young person is in front of a screen for extended periods, they are not doing other critical developmental tasks, whether it's exercising language skills, developing motor coordination, or interacting socially. (This is the consensus about the dangers of ubiquitous technology I have heard from every professional I've spoken with.) Computers are fantastic, and they are a part of life today, but if you're going to radically transfigure the school environment and the expectations of students and teachers alike, at least train the teachers. Those details, the state superintendent tells Richtel, "were still being worked out."View Comments | Add Comment
Legos for Girls: Must They Build Hair Salons?
Jan. 3, 2012 Caroline Miller
A lot of parents are seeing pink. It's the dominant color of the widely debated new Lego play sets aimed at girls, which the company is launching in this month with a $40 million marketing campaign. Some bloggers and columnists are gagging on the passivity of the girly new construction sets, featuring a beauty salon and café, which are better designed, they argue, to nurture narcissism and body issues than confidence- and skill-building. They come in pastel colors and the press materials show a Lego girl brushing her hair. And if that's not annoying enough, the new Lego girls have been given tiny busts.
Pink is also the subject of the viral video "Riley on Marketing," in which a very cute, spunky little girl bewails (with a little prompting from dad) the gender divisions in toy stores. "Why do all the girls have to buy pink and the boys have to buy different colored stuff?" she demands to know. "Why do all the girls have to buy princesses? Some girls like princesses and some girls like superheroes."
I'm with Riley on the superheroes, but I'll bet that left to her own devices Riley likes a sparkly pink tutu as much as the next four- or five-year-old girl. It's a fact that girls and boys tend to have different proclivities in play, and the fantasies that go with it. It has roots in evolutionary biology, not just social conditioning. And girls do tend to go through a pink period, whether mom is a hairstylist or a Supreme Court justice. A little girl who's in love with Ariel isn't doomed to grow up to be Kim Kardashian any more than all kids who want to be firemen at four grow up to be firemen.
But I think what's bothering a lot of us is that the marketing of toys seems to have gotten more and more gender-divided just as the opposite is happening in the world of work and family life. If play is preparation for adult life, it is, indeed, disturbing to think Lego envisions girls in such a limited way. Here's an interesting piece in the New York Times from Peggy Orenstein, who writes, "The environment in which children play and grow can encourage a range of aptitudes or foreclose them. So blithely indulging—let alone exploiting—stereotypically gendered play patterns may have a more negative long-term impact on kids' potential than parents imagine." On Babble, Lynn Harris has a smart critique of what she calls the Princess Industrial Complex: "Ultimately, when it comes to princesses, the incessant marketing makes me much crazier than the inherent mythology."
Given the reality of boy-themed and girl-themed toys and their appeal to children, the Child Mind Institute's Dr. Jerry Bubrick applauds Lego for thinking of girls, finally. Building is important, age-appropriate play, and girls shouldn't be left out. But why, he wonders, just the one set? Why not five or ten? And why not Legos-for-girls that aspire to something more ambitious—how about a rocket ship?View Comments | Add Comment
A Father Struggles With Art and Autism
Dec. 28, 2011 Harry Kimball
The Huffington Post pointed us to an interesting photo collaboration: A photographer dad and his son, who has autism. The pictures appear on the National Geographic website, and they are quite stunning (and a bit weird). But what interested me more is the process that Timothy Archibald describes, and the questions it raises. "We" soon had a system. Eli would do something unusual, one of us would notice, and we'd make a photo of it together.
The resulting shots—of Eli with a pair of pliers in his mouth, Eli pretending to sleep in a large plastic storage bin—are certainly artful, perhaps thought-provoking, and maybe provocative. And they prompt Archibald to ask questions that cross the mind of every parent but appear more central, more persistent to a parent of a child with autism. "Working with him," he writes, "I find myself questioning boundaries. Am I his parent now or his collaborator? Am I empowering my kid, or am I overpowering him?"
I don't know the answers to those questions, but they get to a central and ongoing issue in the autism world of whether there is something to "fix" in the brain and behavior of children with the disorder—or whether it isn't a disorder at all, but the expression of a "differently ordered" brain. I'm not sure I like the photos, or if I'm on board with the whole project, but it reframes this debate through an interesting lens of art and parent-child dynamics. Or maybe I'm reading too much into them. But that's a risk in art, and in life.View Comments | Add Comment
An Aspie Love Story
Dec. 27, 2011 Caroline Miller
It's a great holiday gift for anyone who cares about and thinks about and lives neurodiversity: Amy Harmon of the New York Times has written a wonderfully nuanced story about love between two college students who have Asperger's syndrome. The romantic adventures (and misadventures) of Kirsten Lindsmith and Jack Robison are riveting, partly because the two of them are so disarmingly honest about the struggles they have faced in sharing their lives.
Those struggles are not unlike those of any two people who want both physical and emotional intimacy; in their case what they each like (and don't like) and need has to be spelled out pretty literally. He can't stand kissing, holding hands, and massage, but likes to be touched lightly. "Pet me," he tells her. She hates light touch but loves hugs and generally craves more affection than he is wired to give. But they both love being with someone, for a change, who isn't trying to "fix" them.
The story is thrilling and full of hope for parents who worry about their children's romantic possibilities (not to speak of the children themselves). At a panel discussion Kirsten fields a mom's question about the prospects for Asperger's kids being in long-term relationships. "Parents always ask, 'Who would like to marry my kid? They're so weird,' " Kirsten says. "But, like, another weird person, that's who."
But this romantic comedy doesn't have a fairytale ending. Their relationship is working for them because they're making it work, with lots of support—she takes medication for ADHD and sees a therapist, Jack's father is Aspie writer John Elder Robison—and lots of courage and effort. If there's a magic ingredient here it's acceptance of themselves and each other, which seems to empower them to try to be better partners. In fact that's pretty much the basis of all good relationships, whether you're on the spectrum or not.View Comments | Add Comment