Cathy Spora of Downers Grove wasn’t sure what to think when a preschool teacher recommended she have her son, Vinny, tested for attention deficit hyperactivity disorder because he wouldn’t sit still at story time.
"He was always active to us, but he was our first boy, so we didn’t know," Spora says.
What followed was years of academic difficulties, medications and labels. Medicine helped, but then the U.S. Food and Drug Administration issued a black box warning on the medication Vinny was taking; it had been linked to suicidal thoughts in children.
More recently, some ADHD medications have come under scrutiny for a possible link to cardiac problems and sudden death in children.
Although ADHD was first identified in children almost 100 years ago, we still have few definitive answers on diagnosing and treating children with ADHD. No blood test or brain scan can show with certainty whether a child has ADHD. What’s more, some experts claim that we’re diagnosing children with ADHD who are only displaying the normal exuberance of childhood, a problem that is especially prevalent in Western society, where we expect children to sit in desks all day.
Is it really ADHD?
Today nearly 8 percent of American children ages 4 to 17 have been diagnosed with ADHD, according to a 2003 survey by the Centers for Disease Control and Prevention. It’s most prevalent among upper-middle-class white boys.
More than half of children diagnosed with ADHD are taking medication, primarily stimulants, for the condition, although no long-term studies exist on the safety and benefits of medication. And stimulants are being prescribed for preschool-aged children, although none of the medications has been tested or studied on children this age.
"Stimulants have become the standard of care in the United States," says Dr. Lawrence Diller, a California therapist and author of the books Running on Ritalin and Should I Medicate My Child? "Our culture is calling for perfection at all costs and the anxiety by parents and the schools produces this environment."
Sometimes it’s a matter of educating parents and teachers about normal behavior for children that age.
"We see parents who come in and initially think their child has ADHD, but many times the child is overactive and the parents want to make sure it’s not a problem," says Renee Nash, director of specialized education for School District 150 in South Holland. "We want children to be little adults and sometimes you have to discuss this with parents. I caution many parents [not to assume their child has ADHD] because often the behaviors are typical behavior for 3-, 4- and 5-year-olds, and they’re normal, rambunctious children."
Despite his belief that many active children are being incorrectly diagnosed with ADHD, Diller says some children definitely have the disorder, and their behavior clearly indicates the lack of impulse control, inattention and hyperactivity that are symptoms of ADHD. But it’s the cases that aren’t so clear that concern Diller.
"There are a tiny, tiny minority of children who, no matter what the schools and family do, medications will ... allow them to function. But that’s a tiny group, especially in the 3-to-5 age group," Diller says.
But others in the medical field disagree. They say children aren’t being overmedicated or incorrectly diagnosed. Rather, they say, the disorder is being better detected and treated.
"This is one of the most well-studied childhood disorders, and we have thousands of published studies about it," says Joshua Levy, a Chicago therapist who has been treating children with ADHD for the past 10 years. "If mental health professionals were too quick to label energetic kids with the disorder, then research would find no difference between [ADHD] children and children without the disorder. But there are significant cognitive, behavioral and social differences between children with ADHD and those without.
"Even though there’s controversy in the media, there’s a strong consensus in science and medicine over the nature of [ADHD], the medications and the treatment," Levy says.
Kristin Strom of Lake Forest says the experience of her own four children provides evidence the ADHD conflict is more than just media hype.
Her third child was diagnosed with ADHD after having a seizure at age 5. Strom, who says her daughter couldn’t play by herself at all and was not able to self-regulate her behavior, wasn’t surprised when a doctor said her daughter had ADHD.
But when teachers later approached Strom to say her preschool son and her 9-year-old daughter might also have ADHD, she was taken aback.
"With our son, in his preschool screening, they had already put him down as ADHD. I felt, absolutely not," Strom says. "He’s young and he’s in a new environment. How do they know what’s normal?"
Strom also disagreed that her 9-year-old daughter had ADHD. The teacher’s assessment was based on the girl’s lack of progress in reading, so Strom took her to an outside center for reading tutoring. It was there she was diagnosed with dyslexia, not ADHD.
Many children with learning disabilities exhibit behavior that can be mistaken for ADHD, which is one reason why teachers, parents and physicians should investigate thoroughly before labeling a child, says Marc Atkins, professor of psychology at the University of Illinois at Chicago.
"Sometimes gifted or learning disabilities can look like ADHD, but it’s actually a reaction to a situation," Atkins says. "We have to pay attention to what else is going on here."
But teachers who are contending with large class sizes and children with special needs may not have the time or patience to figure out what else might be going on with a child who can’t keep up or who disrupts class. And that means some parents have felt pressured to medicate their child.
And, Diller notes, the medication works whether the child has ADHD or not, further confusing things. That’s because the stimulants help to sharpen the child’s focus, in much the same way a cup of coffee can sharpen an adult’s focus.
The school’s role
Eight-year-old Dakota Tschopp of Downers Grove was labeled with ADHD for not completing his schoolwork, even though he had a learning disability that made reading difficult. Because he was not finishing assignments, Dakota had to sit with his desk facing the wall for most of the school year. During the winter he was forced to sit on a snow bank working on his class work while the other children played on the playground.
Although the school never insisted she medicate her child, his mom, Jennifer Tschopp, says she felt bombarded all year by the school. Her ex-husband agreed with the school and said Dakota should be on medication.
She did ultimately decide to try a low dose of medication for ADHD, which she hopes is only a short-term situation. She also transferred Dakota to another school within the district, where he is thriving. "He’s made great strides with reading, which has helped, because not being able to read made him frustrated and he’d start fidgeting," Tschopp says.
There’s no doubt some schools would rather have children medicated than deal with behavioral issues, and with 25 to 35 children in most classrooms, it’s easy to understand a teacher’s frustration. However, most schools ask teachers to refrain from advocating medication to parents.
"Medication is totally a parental decision," says Nash of South Holland. "I try to discourage teachers from trying to move parents to medicate."
Instead, Nash asks teachers and parents to fill out a checklist of behaviors to get a better idea of what’s happening with the child. She also recommends parents visit their local pediatrician to rule out any medical issues.
"We cannot diagnose [ADHD] because this is more of a medical issue, and it’s up to the parents to decide if they’ll handle this with medication or a behavioral plan, but generally most of our parents address it with medication," says Bhavna Sharma-Lewis, principal of Edison Elementary School in Elmhurst.
Expectations of kids
The current structure of American classrooms often makes life more difficult for children with ADHD, says Sharma-Lewis.
"If kids are taught in a structured and formatted environment, it definitely creates more issues for children with behavior or attention problems," she says.
At Edison, all students have movement breaks, snack time and recess every day. "We’ve noticed more problems when students are forced to stay inside for long periods," Sharma-Lewis says.
Because many parents work, many children are in these structured environments for much longer periods—they attend before- and afterschool care as well as the school day—than they were 20 or 30 years ago, when the number of children with ADHD was lower.
"For a child to be in a structured environment from 7 a.m. to 6 p.m., this places an enormous burden on the child and the institution, so that you might think, ‘the medication will make him act out less,’ " Diller says.
Socialization issues also may come into play, with boys being diagnosed with ADHD 2.5 times more than girls.
"Some people say schools are run by women for girls, not active boys. I don’t know [if that’s true or not]," Atkins admits. "ADHD is much more prevalent in Western society, so I think culture does make a difference."
As headmaster of Renaissance School for gifted children in Franklin Park, Victoria Carson has seen firsthand how many boys don’t fit into the current American school room, especially boys who may be gifted.
"Just about every boy who came to us was on medication," Carson says. The number of boys arriving at Renaissance School with an ADHD diagnosis made Carson concerned enough to extensively research the disorder.
"We began speaking with parents, and over and over they told us that schools told them there was something wrong with their child," Carson says.
She also is concerned with the message parents receive about medication. "We need to begin to ask questions and demystify medication in America, not just go to the doctor for 15 minutes and get a prescription," she says.
For the average parent, though, medicating a child isn’t an easy choice. Recent news stories about the safety of medications administered to children have made parents even more cautious.
When Susan Milanak’s son, Jack, was 4, his pediatrician diagnosed him with ADHD and recommended Ritalin. The Lake Forest mom decided against medication after she learned the drug had not been tested on children under age 6.
But after Jack struggled through kindergarten, she agreed to try medication. "We realized he couldn’t succeed in that environment and we needed to help him," Milanak says. "With the medication, he can focus, do his schoolwork and follow directions."
Nurture vs. medicate
Diller agrees with a cautious approach toward medicating very young children. He says studies have shown that for preschool-aged children with ADHD-like behavior, parenting programs often show as many or more benefits than medication for helping children.
"Especially in the toddler age group, [a recent study] shows that behavioral intervention will work, but it takes more time," Diller says. "About half the families in the study took the behavioral treatment [vs. medication] and were satisfied with the results."
While Atkins says the majority of children with ADHD benefit from the use of medication, he also recommends proceeding with caution. He says 75 percent of kids who take medication are going to do well, but medications shouldn’t be the first response. Working with the schools and adapting parenting skills should come first.
"Medicine is not something we want to overuse," Atkins says. He tells parents not to use the medications seven days a week if they don’t have to. "I tend to want to build up skills so that we can provide some structure at home and decrease the stimulants."
But it isn’t easy.
"It’s tough at night," says Milanak. Jack’s medication often wears off at dinner time, so getting him to sit long enough to share dinner with the family can be almost impossible. "Sometimes it would be easier to just let him be, but he has to learn."
The one consolation Atkins offers parents is that ADHD changes as children grow. By adolescence most children with the disorder are no longer as overactive and may suffer more from the inattentive type of ADHD. By adulthood, many people with ADHD are able to channel their energy and can bring advantages to a job, as evidenced by the doctors on Atkins’ staff who have the disorder.
Atkins reminds parents that children with ADHD can learn to live well with their disorder. "This is a functional disorder—we’re talking about problems of living. We’re not talking about a damaged brain."
ADHD, also referred to as ADD, stands for attention deficit hyperactivity disorder. First documented in children almost 100 years ago, the disorder is characterized by inattention, impulsivity and over- or hyperactivity, says Dr. Marc Atkins, professor of psychology at the University of Illinois at Chicago. Doctors have identified three types of ADHD: inattention type, hyperactive-impulsive type and a combined type.
"We know that this disorder involves deficits in inhibiting behavior, problems with self-directed motivation, such as managing a task on his own, and a limited ability to be influenced by the feedback [positive or negative] of others," says Joshua Levy, a Chicago family therapist who has treated children with ADHD for the past 10 years.
Children with ADHD generally have delays in age-appropriate skills such as managing routines, working independently and completing tasks. They also usually have significant academic difficulties, unevenness in work performance and motivation problems, Levy says.
Liz DeCarlo is a mom and associate editor of Chicago Parent.