The Child Mind BlogBrainstorm
Does Asperger's Exist? Can Emily Post Fix It?
Feb. 2, 2012 Harry Kimball
Asperger's self-advocates and parents were a bit stunned and more than a bit angered by twin op-ed pieces published in the New York Times Monday. Separately and together they argued that many people with a diagnosis of Asperger's are simply introverted and quirky, which is why it's a good thing that a lot of them may no longer qualify for the diagnosis of autism spectrum disorder under the proposed "narrowing" of criteria in DSM-5.
Benjamin Nugent was a "clumsy, lonely teenager," he writes in the Times, "a spectacular social failure" with "stereotyped and restricted patterns of interest," e.g., he "memorized poems and spent a lot of time playing the guitar." His mother, a psychologist and Asperger specialist, diagnosed him. Years later, once he got "to New York City and became a writer" and met some likeminded people, he realized that he didn't have Asperger's at all. His mother agreed, and off the spectrum he went.
"My experience can't be unique," Nugent writes. "Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome." No and no. I have no idea about Nugent's mother's qualifications as a diagnostician (Is it really kosher to be diagnosed by a family member?) but competent clinicians don't hand out Asperger's diagnoses to any "clumsy, lonely teenager." And if it's happening, it's bad clinical work, not the fault of a diagnosis that has gotten many people with real impairment the help they need.
In the "companion" piece, as it were, psychiatrist Paul Steinberg seems to have a problem with the whole concept of a person with "no language-acquisition problems" being on the autism spectrum. That is, he doesn't believe in Asperger's and thinks the diagnosis does a disservice. "Children with social disabilities," he writes, "diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children."
In fact, Steinberg writes, these kids are going to be fine—they're just beyond their years, as it were. "Children and young adults with significant social disabilities tend to grow quite effectively into their adult lives," he soothes. "Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers."
Would that it were so for all kids. Obviously children should be educated in whatever setting they learn best in; if kids with Asperger's can function in a mainstream classroom, that's where they should be. Calling them Aspies doesn't doom them to spend time in a setting that's too restrictive for them. A diagnosis should open, rather than close, a doorway. But Steinberg's solution is to get rid of the diagnosis and related services. An "Emily Post course" in etiquette should be sufficient, he suggests.
Steinberg also displays Nugent's habit of blaming a diagnostic category for the accidents of childhood, the irresponsibility of people, or the callous disregard of the culture. "Many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability," he writes. Whose fault is that: Hans Asperger's?
Unsurprisingly, the autism community is aghast at these off-kilter attacks. Lynne Soraya gauges opinion at Psychology Today, notably that of critic Tim Page, the genesis of Steinberg's Emily Post comment. Landon Bryce at thAutcast brings his reliable wit and fury to bear. His headline: "New York Times Runs TWO 'Asperger's Is Fake' Editorials."
At Thinking Person's Guide to Autism, Sarah McLeod notes that while Nugent overstates the importance of his own misdiagnosis, Steinberg tries to play the "everyone has it" card both ways: He invokes Einstein, Buffet, George Orwell et al as people who might have had Asperger's, suggesting that therefore the diagnosis must be meaningless. "To be autistic, it seems, one must be unable to achieve."View Comments | Add Comment
Autism and Military Families
Jan. 31, 2012 Rachel Ehmke
Military families have it tough. Families need to cope with frequent relocation, a primary caregiver who is absent for long stretches of time, and the burden of knowing that what feels normal now might not ever feel normal again. All children crave the kind of routine that can be all too easily disrupted by military service, but for kids with autism who depend on routine just to function, having a parent in the military is that much harder.
You would like to think that military families affected by autism don't need to worry about health care. In fact, many servicemen and women initially signed up with the promise that their health care would be completely taken care of. My own father has said that he had an easier time "going the extra mile," in his words, because he knew that he was ensuring excellent health care for his family. Military insurance (currently called TRICARE) has gone through a lot of changes since my father enlisted, and while the quality of health care is still generally good, copays and extra services have gotten complicated.
Particularly for families dealing with autism. When asked to describe the process of getting autism treatment through TRICARE, Rachel, a military wife and blogger over at StimCity responded: “It amounts to jumping through flaming rings of fire while blindfolded with your feet and hands bound with duct tape while your child with autism is left spinning in a corner and your husband dodges IEDs in Afghanistan. Do you want to hear more?"
Actually, TRICARE alone does not cover autism treatment. To get supplemental insurance you first need to enroll in two different programs, the Exceptional Family Member Program (EFMP) and the Extended Care Health Option (ECHO). Unfortunately retired military personnel don't qualify for ECHO, so Rachel's husband, who has served for 24 years and been deployed overseas three times, can't retire because it would mean losing treatment for their daughter. Josyln Gray at Strollerderby points out that this also excludes medically retired personel who leave the service after being injured in wartime.
Assuming you do qualify for ECHO, claims are limited to $36,000 a year. Gray does the math and notes, "that’s about enough to get your child 11-12 hours of applied behavioral analysis (ABA) therapy a week, far below the 25-40 hours a week recommended for children (especially younger children or the more profoundly affected) who need ABA. Also, the dollar cap includes not just things like autism services, but respite services and durable medical equipment. So if your kid needs a wheelchair, that’s going to take away from the autism services you can access."
Today two Congressmen are sponsoring a military family briefing for members of Congress. The ultimate goal is to pass HR.2288, the Caring for Military Kids with Autism Act, which promises behavioral health treatment, including applied behavior analysis, for all military families affected by autism, including the retired ones. Military families have gone to DC, some to address Congress and others to help out backstage. We'll keep you updated on the future of HR.2288. For more information, or to get involved, visit www.cmkaa.org.View Comments | Add Comment
Setting the Record Straight on ADHD Medications
Jan. 31, 2012 Caroline Miller
Yesterday we posted a point-by-point response to the New York Times op ed piece that ran Sunday, "Ritalin Gone Wrong," by Dr. L Alan Sroufe. In our rebuttal Dr. Harold Koplewicz explains the stunning misreading of the research on which Dr. Sroufe bases his claim that ADHD medications don't work. Since we're getting a lot of distressed calls and emails, and in case you don't have time to read the long version, I wanted to give you the most important facts here.
Dr. Sroufe cites a 2009 study of children followed over 8 years that he says showed that medication doesn't work after the first two years. What he doesn't say is that they stopped treating the children in the study after the first two years! No one claims that stimulant medications cure ADHD; rather we know from incontrovertible research and clinical experience that it helps many, many children while they are taking it.
Dr. Sroufe also makes the mistake of conflating all children who have "behavior problems" with children who have been diagnosed with ADHD. Of course there are some kids whose symptoms look like ADHD—they're distracted, impulsive, have trouble self-regulating—but stem from something else, including stressors in their environment. The fact that ADHD medications don't work on all "problem children" doesn't undermine the fact that they work really well for many kids who really do have ADHD.
It's certainly true that parental patterns influence children's behavior, and that changing those patterns can help a child learn to rein in his own impulsivity. That's why parent-child interaction therapy (PCIT) can make a big difference. But PCIT doesn't cure the core symptoms of ADHD; in fact kids with severe ADHD usually have to be on medication to be able to focus enough on the training sessions to learn effectively from them. We agree with Dr. Stroufe that knee-jerk medication isn't the answer for all kids with problematic behavior, but denying that it helps many kids isn't a good way to make that case.View Comments | Add Comment
Another ADHD Denier (and Parent-Basher)
Jan. 29, 2012 Caroline Miller
There's a stunningly uninformed piece on the op ed page of the New York Times today that opposes the use of Ritalin and other stimulant medications for children with ADHD. This piece is so bad it hurts me to link to it. The writer, a psychology professor emeritus at the University of Minnesota named L. Allan Sroufe, claims to have analyzed the available data and found that medication doesn't do these kids any good except in the very short run.
It will take some time to work through all that's wrong with his analysis of the research (which, believe me, we will do). But it doesn't take a lot of time to explain what's wrong with his other outrageous claim: that parents cause ADHD.
He argues that the brain differences neurobiologists have identified in kids with ADHD could have environmental causes, including poverty and bad parenting:
Plenty of affluent children are also diagnosed with ADD. Behavior problems in children have many possible sources. Among them are family stresses like domestic violence, lack of social support from friends or relatives, chaotic living situations, including frequent moves, and, especially, patterns of parental intrusiveness that involve stimulation for which the baby is not prepared. For example, a 6-month-old baby is playing, and the parent picks it up quickly from behind and plunges it in the bath. Or a 3-year-old is becoming frustrated in solving a problem, and a parent taunts or ridicules. Such practices excessively stimulate and also compromise the child's developing capacity for self-regulation.
This would be laughably bad if parent-bashing wasn't such a popular activity among people who don't have direct experience with families of children with psychiatric and learning disorders. If there's anything the parents struggling to do the best for kids with real problems don't need it's nonsense like this. This guy probably still thinks autism is caused by cold mothers.View Comments | Add Comment
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