The Child Mind BlogBrainstorm
Cooler Heads: the Association for Science in Autism Treatment
Jan. 27, 2012 Harry Kimball
Science and the diagnosis and treatment of disorders like autism go hand in hand (in hand, I guess). That doesn't mean the relationship between researchers and the autism community isn't often rocky. Breakthrough treatments have been frustratingly slow in coming, as has real understanding about what causes the disorder. This is not to say that people aren't dedicating their lives to answering these questions and helping children and adults with autism—it's just easy to see why parents of kids with real and limiting impairments will look anywhere for help and answers.
And that's why we're glad that the Association for Science in Autism Treatment (ASAT) is around and has a website full of information on every variety of treatment and intervention for autism. It is not judgmental and does not wag a finger. The site simply lays out all the information and suggests that "professionals and families may wish to obtain additional information about this approach" in some cases. In others, a therapy may simply be "not recommended." Every entry is backed up by citations and summaries of the relevant research.
In a corner of the world where the volume can get turned up way too high, and critical messages get lost in the static—take the recent uproar over changing diagnostic criteria—ASAT is a refreshing and focused voice. If you or someone you know has autism, is caring for someone who has autism, or is interested in the science behind proven interventions, the site is an incredible resource.View Comments | Add Comment
One More Thing Brad Pitt and George Clooney Have in Common
Jan. 26, 2012 Caroline Miller
It's not often we stumble onto something on the New York Post's Page 6 that contributes to our understanding of mental health, but never say never. How could we resist this headline: Brad Pitt: 'I was smoking way too much dope'? Turns out that the actor went through a period of being depressed, in the late 1990s, and talked about in an interview in the Hollywood Reporter.
"I got really sick of myself at the end of the 1990s. I was hiding out from the celebrity thing, I was smoking way too much dope, I was sitting on the couch and just turning into a doughnut and I really got irritated with myself," he says. "I got to: 'What's the point? I know better than this.' "
Brad Pitt turning into a doughnut is a little hard to picture, but that's the point: It's immensely valuable to have a guy with just about everything imaginable going for him, not even counting Angelina Jolie as his partner, admit that he was seriously depressed. Depression doesn't respect (or reflect on) your talents and assets; it can strike down the best and the brightest, including the sexiest man alive.
In fact, two of the sexiest men alive: George Clooney also recently acknowledged his own bout with depression, the Post notes."Clooney recently revealed his battle with hopeless feelings after being injured while making Syriana. Clooney told Rolling Stone in November that he considered suicide."
We'd give you a link to that story, for more details, but it's behind a paywall on the Rolling Stone site. At any rate, this is the kind of admission that has the potential to help other people acknowledge their own profoundly negative feelings, especially teenage boys. Seriously depressed adolescent boys who are hiding their pain are the most at risk for suicide, Dr. Alan Apter notes in this video, and what they need most, he says, is role models who make it clear that it isn't unmanly to acknowledge dark feelings.View Comments | Add Comment
Dueling Studies on the New Autism Criteria
Jan. 20, 2012 Caroline Miller
In a move surely intended to reassure parents, the American Psychiatric Association today rolled out two new field studies of the proposed changes in diagnostic criteria for autism for DSM-V. Unlike the study that hit the news yesterday, these showed that kids on the higher end of the spectrum, those with Asperger's and PDD-NOS, won't be excluded after all.
Actually, the new studies weren't quite rolled out, but the association's director of research, Darrel Regier, told Bloomberg about them, obviously to counter the alarm in the autism community generated by yesterday's study suggesting that the new criteria for DSM-V would disqualify as many as half of those on the higher end of the spectrum.
"One of the field trials showed a 1 percentage-point rise in diagnosis rates under the new criteria and the other showed a drop of 4 or 5 percentage points, " Bloomberg reports being told by Regier, who is also vice chairman of the task force on the new guidelines. "There was concern that by tightening the criteria we would drop the bottom out from people with previously diagnosed autism," Regier told Bloomberg. "We don't think that's likely to happen, based on our assessment."
And Dr. Catherine Lord, director of the Weill Cornell Medical College/ NY Presbyterian Hospital Institute for Brain Development, clarified further: "The intention isn't to exclude people who meet the criteria for any of the conditions. It's just to be sure we aren't including everyone who has any kind of behavior problem."
The dueling studies underscore the importance of staying tuned as the task force continues to work towards a December finish. Geraldine Dawson, chief science officer of Autism Speaks, puts it well when she tells Bloomberg: "From the scientific side, the changes make a lot of sense. We need to think through the implications for the real people who are in the real world trying to obtain the services they need."
Landon Bryce has a thoughtful analysis of the issue at thAutcast, supporting the end to separate diagnoses for Asperger's and PDD-NOS, which will now be included in autism spectrum disorder: "Diagnosis varies too much from doctor to doctor, and level of functioning varies too much within the life of an autistic individual, for rigid categories to make sense." But he also notes the general pressure to curb autism diagnoses.
There is, and will continue to be, a push to diagnose fewer people with autism. This is mostly an economic issue: it's just getting too expensive to have all these autistic people and their families around clamoring for services. People are already being undiagnosed at pretty alarming rates—kids who had 1-to-1 aides last year are less likely to get them now, and people are finding new roadblocks to getting the insufficient help they were getting a couple of months ago.
Undiagnosing people who need services surely isn't the intent of the proposed revisions to DSM-V. By the time the dust settles we hope it will be clear that it isn't the effective result. Researchers, clinicians and families in the autism community need to be on the same side on this—for criteria that will be more effective, not more exclusive.View Comments | Add Comment
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