Gifted and challenged: When enlightening has to strike twice

By SARAH LEMAGIE, Star Tribune

November 23, 2008

Tyler Lehmann could read "Harry Potter" books before he started first grade, yet an anxiety disorder left him unable to speak to his teacher and all but one of his classmates in Woodbury. Simon Fink attends a school for gifted students in St. Paul, but Asperger's syndrome can make it hard for him to interact with peers and focus on lessons.

School can be tough for kids with challenges ranging from emotional disorders to ADHD or dyslexia. For gifted students, too, it's not always a cakewalk, between boredom and the sense of isolation that can result from being a "brainiac."
Then there are students such as Tyler and Simon, who fall into both categories.
Raising children with learning barriers is a task in itself, "but when they're bright and gifted and have a high IQ, it's even more frustrating, because the teachers just don't understand how to work with these kids," said Bloomington parent Chelle Woolley, whose 17-year-old son, Matt, was in fifth grade when he tested out for both giftedness and attention deficit disorder.

A growing awareness of so-called "twice-exceptional" or "2X" students, many of whom qualify for both gifted and special education services, is prompting some researchers to take a closer look at their needs. This fall, educators at the University of St. Thomas and four metro-area school districts are using a $490,000 federal grant to launch a five-year project aimed at developing better ways to teach 2X children, helping schools identify them and training teachers to work with them.
The project came out of talk this spring between educators at several schools for gifted students, including Dimensions Academy in Bloomington, Capitol Hill Magnet School in St. Paul, the Atheneum program in Inver Grove Heights and the Gateway program in Woodbury.

Some of them said they'd been noticing more gifted students with disabilities.
"We were kind of bemoaning that we had all this great curriculum and these wonderful teachers and we had this headful of knowledge about education, but we weren't meeting the needs of these twice-exceptional kids," said Dimensions director Richard Cash.

Though they're often happier in gifted classes, 2X kids often struggle in school despite their intelligence. Processing lessons can be hard, or homework can disappear.

"We had documentation, data that proved that these kids are really bright, really smart, but then we had performance that was the exact opposite," Cash said.
For Simon, a seventh-grader at Capitol Hill, an organized teacher can make a big difference in his schoolwork and cut down on the frustrations that come with having Asperger's, a type of autism. "He needs a schedule," said his mother, Pemly Fink. "He needs to know what's expected of him."
Educators also worry because they don't know how many kids they're missing.
In 2004, about 7 percent of U.S. public school students were identified as gifted and talented, while about 14 percent received services under federal disability law, according to the U.S. Department of Education.

At Dimensions Academy, 6 percent of 130 gifted students have been identified as 2X, Cash said. But numbers vary by school, and pinning down how many gifted students have an impairment is tricky. Some gifted kids go unidentified for years because of a problem that keeps them from showing the full extent of their intelligence. In other cases, giftedness can mask a disorder.

That's not to say there are scads of apparently average kids who belong in gifted programs but are held back by a hidden condition. "If you look at the general curriculum you offer in schools, it really does satisfy the needs of the majority of our children," said project director Karen Rogers, a St. Thomas professor of gifted studies.

But experts say it's crucial to find the 2X students. Gifted students with a hidden disability can give the impression that they're merely slacking or muddle along until a crisis hits. And if teachers don't find and challenge gifted kids, they can check out mentally and become rebellious or depressed.
"It's really easy ... to think that gifted kids sort of have it made," said Erin Boltik, able learner coordinator for the Inver Grove Heights schools. But if they don't get the attention they need, she said, "They won't grow."
As for 2X kids, "When we've gotten them into our program, they've done a lot better, but it's still not a perfect fit."

The grant will allow the group to develop an identification method and adapted reading and math lessons for 2X children, as well as a certificate program at St. Thomas to train teachers.

'These kids feel so different'

Some 2X students do better in classes with other gifted kids not only because they're challenged more, but because they feel less isolated. Take Ben Starfeldt, a sixth-grader at Dimensions who has a disorder that makes it hard for him to keep his feelings in check. Ben's family knew early that he was gifted -- he scored 146 on an IQ test when he was 8 -- but his elementary years in mainstream classes were marked by blow-ups that could make his teachers hesitant even to let him go to the library alone.

"He was an easy kid to pick on: the smart kid," said his father, Ross. "That just made the emotional disorder worse."
"I think in a regular classroom, these kids feel so different," said Tyler's mom, Lisa Rau Lehmann. "He used to refer to himself in kindergarten as a freak, because he could read chapter books."

Tyler, now a sixth-grader in the South Washington County School District's Gateway program for gifted students, was a talkative, funny toddler who was good with his brothers at home. But in public, he fell silent and couldn't do group activities or tell people his name.

Tyler is selectively mute, a disorder that can render him unable to talk. He still has rough spots in school, like the time he froze up during a science lab last year and his teacher nearly gave him a failing grade. But years of work with experts have helped Tyler, who now speaks very well, his mother said.
Not all 2X students are doing as well. Cash said some have struggled so much academically that they've had to leave Dimensions, even though the school tried "thing after thing after thing" to help. Older students at the school must maintain a B- average. Not all the students who have fallen short are 2X, Cash said, but those "were the ones that were the most disheartening, because we ran out of strategies."
Sarah Lemagie • 952-882-9016

NIH Report: ADHD Medications Do Not Cause Genetic Damage in Children

U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Environmental Health Sciences (NIEHS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
For Immediate Release: Wednesday, November 19, 2008

CONTACTS: Robin Mackar, 919-541-0073,
Robert Bock or Marianne Glass Miller, 301-496-5133,

ADHD MEDICATIONS DO NOT CAUSE GENETIC DAMAGE IN CHILDREN

In contrast to recent findings, two of the most common medications used to treat attention deficit hyperactivity disorder (ADHD) do not appear to cause genetic damage in children who take them as prescribed, according to a new study by researchers at the National Institutes of Health (NIH) and Duke University Medical Center.

The study published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP) provides new evidence that therapeutic doses of stimulant medications, such as methylphenidate and amphetamine, do not cause cytogenetic (chromosomal) damage in humans. The researchers looked at three measures of cytogenetic damage in white blood cells of each child participating in the study and found no evidence of any changes after three months of continuous treatment.

"This is good news for parents," said Kristine L. Witt, M.Sc., a genetic toxicologist at the National Institute of Environmental Health Sciences (NIEHS) and co-author on the study, which was funded through the Best Pharmaceuticals for Children Act by NIEHS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), both parts of NIH. "Our results indicate that methylphenidate- and amphetamine-based products do not induce cytogenetic damage in children."

The researchers involved emphasize that the findings should not be interpreted as final proof of the long-term safety of stimulant drugs for the treatment of ADHD. "More research and close monitoring of children taking these medications for extended periods of time is needed to fully evaluate the physical and behavioral effects of prolonged treatment with stimulants," noted Scott H. Kollins, Ph.D., director of the Duke ADHD Program, where the study was conducted and a co-author of the paper.

ADHD is a disorder characterized by attention problems, impulsivity, and hyperactivity. About 3 to 5 percent of children in the United States have been diagnosed with the disorder, although several studies suggest 7 to 12 percent of children may be affected.

The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.

The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.

The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes). "We did not see any significant treatment-related increases in any of these three endpoints," said Donald R. Mattison, M.D., senior advisor to the director at NICHD. "These results add to a growing body of evidence that therapeutic levels of these medications do not damage chromosomes," he said.

The study was designed to determine the reproducibility of findings from a previously published paper that reported methylphenidate-induced chromosomal changes in children with ADHD. That paper raised concern for the medical community and parents, given that some of the changes have been associated with an increased risk of cancer. The current study was not able to replicate the findings from the previous study. The new JAACAP paper extends the literature by using a larger sample size than previous studies, investigating more than one commonly prescribed medication, and providing well-characterized results that can be generalized to other ADHD populations.

"One way scientists evaluate each other's work is by attempting to reproduce the original experiment or study," said Witt. "We designed a study with specific modifications to address issues raised with the original study. Thus, our results are based on a significantly larger number of children who were carefully evaluated using rigorous, accepted standards, which allowed us to produce high-confidence data at the end of our study."

This study was supported by the NIH/NICHD Best Pharmaceuticals for Children Act pediatric drug development program and the Intramural Research Program of the National Toxicology Program at the National Institute of Environmental Health Sciences. NIH Clinical Trial NCT00341029: .

The National Toxicology Program (NTP) is an interagency program established in 1978. The program was created as a cooperative effort to coordinate toxicology testing programs within the federal government, strengthen the science base in toxicology, develop and validate improved testing methods, and provide information about potentially toxic chemicals to health, regulatory, and research agencies, scientific and medical communities, and the public. The NTP is headquartered at the NIEHS. For more information about the NTP, visit .

The NIEHS supports research to understand the effects of the environment on human health and is part of NIH. For more information on environmental health topics, please visit our website at .

The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at .

The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit .

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THE MIND More Than Just 'Quirky'

By Jeneen Interlandi | Newsweek Web Exclusive
Nov 13, 2008
Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child's behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, 'quirky' had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. "If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out," Liane says. "She would try to take it away from the other kid, because she didn't get that not everything 'monkey' was hers." Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. "Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it," she recalls. "For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all." Doctors were hoping the psychological tests would yield-up some clues.
The "Sally-Anne" test involved a simple skit: 'Sally' put a marble in the basket and then walked away. Once she was gone, 'Anne' took the marble out of the basket and put it in a box. When 'Sally' returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn't know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn't understand that other people don't know everything they know, and vice versa. Psychologists refer to this as a "theory of mind," and people who fail the Sally-Anne test are said to lack one, meaning they can't anticipate other people's thoughts and feelings. Liane's daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger's syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.
It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
But much more research is needed before those anecdotes can be marshaled into a coherent picture. "Ultimately, we might want to look for different symptoms in girls," says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. "But we have a lot more questions than answers at this point." Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.
Anyone who knows a boy with Asperger's syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.
Now, replace oscillating fans with something more conventional - say horses or books - and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. "Girls tend to get obsessed with things that are a little less strange," says Elizabeth Roberts, a psychologist at New York University's Asperger's Institute. "That makes it harder to distinguish normal from abnormal." That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls' obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble."
Of course, it's not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. "We tend to notice shyness in boys as 'off,'" says Loveland. "In girls, we can almost see it as a good trait." And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.
But even as they effectively mask Asperger's in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. "By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can't keep up with all the nuances," says Janet Lainhart, a doctor at the University of Utah's Brain Institute. "Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable."
Not everyone is persuaded that the symptoms of Asperger's differ between boys and girls. Ami Klin, director of Yale's autism research group cautions that no Asperger's trait can be defined as gender-specific quite yet. "It's a possibility," he says. "But I don't know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has."
What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger's. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger's easy prey for sexual predators. "That is a real distinction and my real concern for girls on the spectrum," says Klin. "That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren't getting the right guidance."
Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don't muddy up the data. As a result, only a very small body of work addresses the Asperger's gender gap, even though such studies could lead to better diagnosis of both autism and Asperger's.
Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. "A lot of people see Baron-Cohen's work as 'politically incorrect,'" says Loveland. "Any time you start talking about a biological basis of sex differences, you are looking at controversy."
Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger's. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. "They really want to understand how to do these very-female things, they just need the guidance to get there," she says.
Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane's daughter wasn't the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. "It was like a light bulb went off," she says. "I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity." And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. "Her experience has been totally different from mine," she says. "She's had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn't be able to tell which one has Asperger's."